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Posted by: JJR, Thursday, August 18, 2011, 4:26pm
I know there are people on here that have been diagnosed and are fighting it etc.  I was hoping there could be a place where we can discuss it.  It's good to know how people are fighting it, what's working for them.  What symptoms they deal with, etc etc etc.  Support each other.  Pray, send good thought, whatever.

My wife and I started watching the movie "Under Our skin" and it's kind of freaky to watch.   We watched like 40 minutes and had to shift gears.  

Anyways, my first comment I'd like to make is that for some reason I feel like 2011 is the year of the Lyme for me.  I'm being treated for it.  And it had come up on the radar a couple of years ago, but my body was dealing with other issues first I think.  Or, that's how it played out with the ND I was seeing.  I think that the Lyme probably was at the core of my health problems, and it went undiagnosed.  I had been tested several times and got negative results from the average Joe Doctors.  Which we are finding out that those tests don't work.  But what hit me is that even though I think I've had it for a while, this year seemed to bring it all to the forefront.  And I see that in other people too.  I don't know what it is, but again, it just seems like 2011 is the year of the Lyme.  Among other things.  It's been a topsy turvy year, weather wise, and all kinds of things and I wonder if that has had an impact on the lyme in our systems.  Because for a while I was getting better.  And bam, it was like it reared it's ugly head big time this spring.

Anyways, the one fighting experience I have so far is I'm taking a burrelia/burgdorderi homeopath from my doctor and it brought me out of the doldrums.  I don't know if it was JUST the homeopath.  But I stopped it for a few days and after the second day of stopping it, pain starting to really take on my joints and what not and then I started the homeopath last night again and I feel better this morning than yesterday morning.  I suppose it could be coincidental, but I doubt it.  The reason I stopped the homeopath was because I felt like my spleen and lymph was getting overloaded and my doctor's assistant thought it was probably because I was killing the lyme with the homeopath, the spleen gets gummed up.  So, I have spleen supplements I'm taking, along with some mushroom type immune booster supplement called agricus bio, and a few other things.  They said I wasn't ready for Teasel yet, as it is a more powerful homeopath, but soon I will start that.  

So, am I the only one that thinks that 2011 is the year of the lyme?
Posted by: Lola, Thursday, August 18, 2011, 4:51pm; Reply: 1
http://www.dadamo.com/clinic/2010_5-6_newsletter.htm#Third

http://www.bing.com/search?cp=1252&FORM=FREESS&q=lyme+disease&q1=site%3Adadamo.com
Posted by: Chloe, Thursday, August 18, 2011, 5:03pm; Reply: 2
If you find Ribbit's old thread when she landed in the ER, I wrote a long post on my experience
with Lyme disease. Quite honestly, I don't mind discussing this subject if there are questions
but I have written the same story so many times, that it's too exhausting to begin again from
scratch. My experience with chronic Lyme (first tick bite with toxic reaction in 1970 but no name
for Lyme Disease known) made me realize that Ribbit had it as well....and she got tested
and sure enough....Lyme.  I had a confirmed Lyme (because I saw and removed deer tick from
my shoulder in 1990) but testing never proved Burrelia...It proved nothing conclusive due
to my past infection with Lyme....I was treated for 4 months with abx...got better and then got
much worse...Saw a master herbalist....and worked with products from Healers Who Share..

http://www.healerswhoshare.com/

I had many co-infections which showed up on bio meridian testing.  And there were combined viruses which really outweighed the bacterial issues.

Healers who share create antidote-like homeopathy that cancels out the energetic properties of
the toxin.

Supposedly it works like this
http://www.healerswhoshare.com/index.html

Did I get better?

In a word, NO!

What has helped...
Products not designed specifically for Lyme but indirectly they have been supportive.

Products like Lauricidin.  Make sure to read about Lyme   http://lauricidin.com/lyme_disease_testimonials/
http://lauricidin.com/

The reason I think this supplement is helping me is for two reasons...One is that most of my
original Lyme morphed into stealth viruses....many of which are lipid coated.  Monolaurin helps
break down the coating on these types of viruses....And monolaurin is found in coconut oil...
a diamond food for me.  Not wanting to keep going over my fat limit for the day, I switched to
using Lauricidin and except for the herxing (itching), I think it's helpful.

What else has been helpful?  Generally not a lot....except for a diet without sugar...making sure
that my organs are working and cleansing toxins.....I've gone for acupuncture (which I can't
say helped with aches and pains)..

A lot of my lyme issues became overlapped with chronic fatigue/fibromyalgia.

I have less of those symptoms while eating my SWAMI diet...I eliminated dairy because it was
setting me back....Less aches and pains since I gave it up....feel gut is improving with Genoma
Security and Gastro D.  And lately I'm eating cultured vegetables as often as I can....

I no longer see any one particular doctor/healer/alternative healer regarding my chronic Lyme
symptoms...I've had too many people who have wanted me to do chelation....(for their profit,
I'm quite sure)

I was told I had heavy metal toxicity...

SO I'm taking this product.....Pectasol.... http://www.econugenics.com/p-70-pectasol-chelation-complex.aspx?affiliateID=10063&gclid=CPT90NKn2aoCFYmK4AodRinu6g

My focus for one month is cleansing....for the next month, rebuilding...I never stay with cleansing
too long....but each time I go back to a new cleansing protocol, I seem to make greater progress.

Some months I focus on green drinks...chlorella, cilantro.....

I know I'm slightly off the track talking about Lyme, per say....because in reality, I don't think there
IS one cure for all the garbage one tick brought with it when it transferred toxins into your one
body...

I think it's a matter of building your immune system....and carefully balancing cleansing your organs
at the same time.  I haven't found one healer, one protocol that is "THE" one...I have made a lot
of progress using coconut oil....I found it very cleansing....but it's not a food we all have as
diamonds.

Right now, I'm feeling pretty well.....I have good energy, I sleep well....I'm not too achy and if I
am, I take Zyflamend....which helps with inflammation and has a lot of good herbs that are
complimentary for my blood type.

http://www.newchapter.com/zyflamend/zyflamend-easycaps

I also do oil pulling twice a day.  Does it help?  Can't say but it can't hurt.

Try everything you can think of....eventually something will be helping your body purge
toxins and make your immune system stronger.

I wish you luck :)


Posted by: JJR, Thursday, August 18, 2011, 7:09pm; Reply: 3
Thank you Chloe and Lola.  Yeah Chloe, I didn't want to share my whole story either because I've said it a lot and am tired of it.  I will share some of my experiences if asked though.  I'm not really asking for "give me your whole story" type thing but just where we can discuss things that come up.  

But your input is great.  A gal I know is taking something called A-L complex and I guess that's supposed to help your immune system.  And then my Doctors assistant has been dealing with this for a long time and she's taking something called a "Transfer Factor" now and I guess it's been cleaning out her liver.

I am also super sensitive to sugar.  I can't eat anything that has too much sugar.  I do eat fruits, and they're fine.  But cake and ice cream, junk food.  Ugh.  It is like eating little bits of FAIL!!!!!!  I do eat a tiny piece of chocolate twice a week.  Good quality stuff.  And the darker the better.  But very small pieces at one time.  I barely eat any honey as it is.  Stevia seemed to work in the past, but I basically gave it up, because I'm just not sure about it.  I was eating it too much probably.  I got used to the flavor.  It may be that it's not too bad though.  I'm still undecided on that one.  And despite Agave being so controversial, when I did use it in a cake for a treat that I home made, it seemed to work well.
Posted by: nowishow, Thursday, August 18, 2011, 8:04pm; Reply: 4
Quoted from JJR
A gal I know is taking something called A-L complex and I guess that's supposed to help your immune system.  And then my Doctors assistant has been dealing with this for a long time and she's taking something called a "Transfer Factor" now and I guess it's been cleaning out her liver.

I am also super sensitive to sugar.  I can't eat anything that has too much sugar.  I do eat fruits, and they're fine.  


I've taken A-L (and A-Bab and A-Bart as well). It is specifically for Lyme disease. A-Bab is for Babesia, which I tested negative for in the lab, but my doctor says that I have the greatest "load" of Babesia infection. He says I also have Bartonella and "Lyme" (Borrelia burgdorferi ). All three of these infections came with one tick bite. So he started me with A-Bab and after some months my "symptom picture" changed and he switched me to A-Bart. Then a few months later my "symptom picture" changed again and he switched me to A-L. A month ago I started having the Babesia symptoms again and so I'm back on A-Bab.

I really like these remedies and find that they are helping me a lot. I didn't start out with them so I have something to compare them to. They are not the only thing that helps me for sure, but I do recommend them. But, you have to use the right one for you, at the right time, and that may be a little tricky. Here's where you can read about them a little.

http://www.faim.org/newfrontiers/byronwhiteformulas.html
By the way my doctor wrote this article, Dr. Wayne Anderson

http://bioresourceinc.com/bwherbal/


I am also very sensitive to sugar, just a little agave or blackstrap molasses from time to time. And I do eat some dark chocolate on occasion, but I have to be craving it.  :)
Posted by: Goldie, Thursday, August 18, 2011, 9:30pm; Reply: 5
nothing to add but it's a good idea.. lets discuss..
Posted by: JJR, Thursday, August 18, 2011, 10:56pm; Reply: 6
Nowishow, that was a great post and I got a lot out of it.  I was wanting to study up on the A-L complex and you gave me the link!!!  Ask and ye shall receive. I'm going to run those past my doctor also.

One thing I'm having a challenge doing lately is keeping my spleen cleansed.  It seems like when I kill the stuff, my spleen hurts and lymph gets sluggish.  Lemons are bothering my stomach.  I did juice some carrots and am trying to keep hydrated.  And I made some broth the other day, but it seemed like it wasn't sitting right with me.  So I haven't had too much.  Any other ideas?
Posted by: Andrea AWsec, Friday, August 19, 2011, 12:05am; Reply: 7
http://theubshift.blogspot.com/2010/09/any-naturopathic-doctor-practicing-in.html

Connie's story..http://www.dadamo.com/B2blogs/blogs/index.php/2010/12/29/the-more-i-read-about-herxing-the-more-i?blog=39

Posted by: Ribbit, Friday, August 19, 2011, 3:40am; Reply: 8
I woke up this morning with my legs aching like they haven't ached in a long time.  The bottoms of my feet (right across that padded part between the toes and the arch area) were puffy and I had to hobble around for a few minutes.  That's nothing new, but it reminded me that I'm better than I was.  

I don't like being like this.

I can't think.

I can't remember anything.
Posted by: JJR, Friday, August 19, 2011, 3:56pm; Reply: 9
Ugh.  I've seen you say this a lot lately and I'm concerned.  The thing about not remembering.  I have this thing where I can't figure out the words I want to say right away sometimes.  And I'm like Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.  I don't know if that's this deal, or just life in general.  I'll be saying a prayer for you.  But yeah, yesterday the pain in my knees was worse than I've ever had it before and my feet too have even felt kind of hot at times.  Which is kind of weird for me.  I swear it's something in the air this year.

I'm praying for you Leanne.  How is your spleen?  Do you ever feel like it gets gummed up and hurt?
Posted by: ABJoe, Friday, August 19, 2011, 4:17pm; Reply: 10
Quoted from Ribbit
...but it reminded me that I'm better than I was.  

I don't like being like this.

I can't think.

I can't remember anything.

None of us like these feelings.  I never realized until I started eating per BTD that it wasn't totally normal to lose concentration often and have to refresh short term memory frequently to remember anything...  
Unfortunately, detox keeps bringing these feeling back to me, so until I get the junk out of my body, I'll continue to experience this...

JJR,
I have hot, painful spots (zones) wherever the detox and healing is taking place...  Just part of the fun.
Posted by: JJR, Friday, August 19, 2011, 10:10pm; Reply: 11
Yukee.  
Posted by: JJR, Sunday, August 21, 2011, 3:40am; Reply: 12
Somebody had started a thread that I thought was interesting and I'm curious as if any of you have this symptom.  Do you ever get muscle twitches and stuff?  I've been getting one on my left arm for quite a while on a somewhat regular basis.  Not like all the time but it happens at least once a day.  And sometimes my stomach will twitch.  Almost like the vegas nerve is unsettled.  I have gotten that after doing something more strenuous than I should have maybe.  Which doesn't take much lately.  last time it happened was about 3 months ago and I was taking the oil filter off of the riding lawn mower.  It took all my strength to loosen it and it threw me for a loop for that afternoon and my stomach gets all twitchy.  And I get cold.  Does that happen with anyone else?

Seems to me like that's a neurological symptom.  I don't know.  I used to lay down at night and just feel my stomach twitching all over the place.  But back then it wasn't necessarily because I over did it.  It just happened a lot.
Posted by: Goldie, Sunday, August 21, 2011, 11:22am; Reply: 13
Neuropathy is a strange thing and in a way we hardly talk about it.. I think your symptoms are early signs, in need of a chiro adjustment? or acupuncture.. or ignore it unless it hurts.. and even then there is not much other then diet to make it better.. going sugar free seems to help.. do you have numb spots anywhere -sore to the touch?  Like nerves standing on edge??
Posted by: Kim, Sunday, August 21, 2011, 2:49pm; Reply: 14
Quoted from JJR
Somebody had started a thread that I thought was interesting and I'm curious as if any of you have this symptom.  Do you ever get muscle twitches and stuff?  I've been getting one on my left arm for quite a while on a somewhat regular basis.  Not like all the time but it happens at least once a day.  And sometimes my stomach will twitch.  Almost like the vegas nerve is unsettled.  I have gotten that after doing something more strenuous than I should have maybe.  Which doesn't take much lately.  last time it happened was about 3 months ago and I was taking the oil filter off of the riding lawn mower.  It took all my strength to loosen it and it threw me for a loop for that afternoon and my stomach gets all twitchy.  And I get cold.  Does that happen with anyone else?

Seems to me like that's a neurological symptom.  I don't know.  I used to lay down at night and just feel my stomach twitching all over the place.  But back then it wasn't necessarily because I over did it.  It just happened a lot.


Muscle twitching can be from magnesium deficiency.  Increase your magnesium and see if it helps.  

I get a vibrational muscle thing going on in my chest, arms and sometimes legs.  It literally feels like I am shaking on the inside but there is no shaking on the outside.  It is definitely neurological.  

I would mention the twitching to your ND.  Is it possible you could also be reacting to one of the homeopathics you are taking?
Posted by: ABJoe, Sunday, August 21, 2011, 6:19pm; Reply: 15
I used to have muscle twitches quite regularly, although I don't remember if it was before or after BTD...  I had twitches in the arms and in the corner of my eyes.

I get temperatures differences all over...  There are times when I will have hot spots, cold spots or both at the same time...  The body is definitely controlling the temperature in different zones differently.  Sometimes I need to move to eliminate a fixation, but quite often, I just need to allow whatever is happening to happen and everything evens out.  I just ride along... ;)   ;D  
Posted by: JJR, Sunday, August 21, 2011, 7:14pm; Reply: 16
I haven't supplemented magnesium for a while.  My body is not wanting it.  I don't think.  I think it's something else.  Possibly.  And it's more than a chiro adjustment, imho.  But, I'm not really sure.  Ever since I've had problems, I feel like my vegas nerve has always been messed up.  A chiro I used to go to would put me on this machine and my vegas nerve was always something that came up.  It seems like it's been better.  But, like I said when I push myself, is when I get the stomach twitchies.  The arm thing is just something that seems to be consistent lately.  It's no big deal, but just curious if others deal with it too.  

And Joe, I think you might've been right about how I felt Wednesday.  It seems like ever since that day, which I felt awful and had awful pain, I've been getting a little better.  And with less supplementes.  I didn't take the homeopathic for lyme last night and I feel pretty good.  I'll see what I need tonight.
Posted by: JJR, Monday, August 22, 2011, 3:47pm; Reply: 17
NowIshow, thank you so much for linking these formulas and the information.  I'm really thankful you took the time to do that.  I'm asking my Doctor about them and we may order them.  They didn't know about them.  They look like they could be potent.  Does your doctor use antibiotics with these?  A gal I know is doing both.
Posted by: deblynn3, Monday, August 22, 2011, 4:27pm; Reply: 18
My eyes would twitch, part over use. but read someplace to take B's and B12 in particular. Haven't had the twitches since I went on the B's
Posted by: nowishow, Monday, August 22, 2011, 7:25pm; Reply: 19
Quoted from JJR
Nowishow, that was a great post and I got a lot out of it.  I was wanting to study up on the A-L complex and you gave me the link!!!  Ask and ye shall receive. I'm going to run those past my doctor also.

One thing I'm having a challenge doing lately is keeping my spleen cleansed.  It seems like when I kill the stuff, my spleen hurts and lymph gets sluggish.  Lemons are bothering my stomach.  I did juice some carrots and am trying to keep hydrated.  And I made some broth the other day, but it seemed like it wasn't sitting right with me.  So I haven't had too much.  Any other ideas?


I really like Red Root tincture. It really helped me a lot. I had tremendous spleen pain for a while. I'm still taking the Red Root even thought I haven't had the spleen pain for a while. It's just good maintenance for us "Lymies".

I also highly recommend clay baths or "soda baths". I get so much help from them if I take them once or twice a week.

Soda Bath

1/2 box Borax (about 6 cups)
3 cups baking soda
2 cups cornstarch

Dissolve in lukewarm water (NOT HOT) and soak for 35 minutes. Put as much of your body in as possible. Rinse after but do not wash.
Posted by: nowishow, Monday, August 22, 2011, 7:28pm; Reply: 20
Quoted from JJR
  I have this thing where I can't figure out the words I want to say right away sometimes.  And I'm like Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah.  I don't know if that's this deal, or just life in general.  I'll be saying a prayer for you.  But yeah, yesterday the pain in my knees was worse than I've ever had it before and my feet too have even felt kind of hot at times.  Which is kind of weird for me.  I swear it's something in the air this year.


I have trouble finding words when I'm feeling really bad as well. I'm pretty sure it's trouble with the vargus nerve. So many of my symptoms stem from there.

Hot feet can be a sign of Bartonella
Posted by: nowishow, Monday, August 22, 2011, 7:32pm; Reply: 21
Quoted from JJR
Somebody had started a thread that I thought was interesting and I'm curious as if any of you have this symptom.  Do you ever get muscle twitches and stuff?  I've been getting one on my left arm for quite a while on a somewhat regular basis.  Not like all the time but it happens at least once a day.  And sometimes my stomach will twitch.  Almost like the vegas nerve is unsettled.  I have gotten that after doing something more strenuous than I should have maybe.  Which doesn't take much lately.  last time it happened was about 3 months ago and I was taking the oil filter off of the riding lawn mower.  It took all my strength to loosen it and it threw me for a loop for that afternoon and my stomach gets all twitchy.  And I get cold.  Does that happen with anyone else?

Seems to me like that's a neurological symptom.  I don't know.  I used to lay down at night and just feel my stomach twitching all over the place.  But back then it wasn't necessarily because I over did it.  It just happened a lot.


I don't get a lot of muscle twitching but it's a typical Lyme symptom. I get a vibrating feeling most of the time in my chest which is also very typical. I get very cold and then usually burst into a sweating fever. But sometimes I'm just cold for a long time. Temperature control problems I believe are caused by hormonal imbalances and the short fevers are the body trying to kill the infection.

Posted by: nowishow, Monday, August 22, 2011, 7:38pm; Reply: 22
Quoted from JJR
I haven't supplemented magnesium for a while.  My body is not wanting it.  I don't think.  I think it's something else.  Possibly.  


Try Magesium Glycinate (most recommended for Lyme patients) and/or topical magnesium.

http://www.iherb.com/Bluebonnet-Nutrition-Chelated-Magnesium-90-Vcaps/14198?at=0

http://www.magneticclay.com/store/magnesium-oil-ancient-minerals-8.aspx
Posted by: nowishow, Monday, August 22, 2011, 7:42pm; Reply: 23
Quoted from JJR
NowIshow, thank you so much for linking these formulas and the information.  I'm really thankful you took the time to do that.  I'm asking my Doctor about them and we may order them.  They didn't know about them.  They look like they could be potent.  Does your doctor use antibiotics with these?  A gal I know is doing both.


I only used antibiotics for 1 month at the beginning. But, that's a personal choice. I belive you can use both at the same time, but I'm not sure. The Bryan White formulas are very potent. I had to start out one of them one drop every other day. I've never gotten higher than 6 drops twice a day or I would herx too much. Are you familiar with the term "herx"? I'm very sensitive though so you may need more.
Posted by: JJR, Tuesday, August 23, 2011, 12:48am; Reply: 24
No, I'm like you.  Super sensitive.  Any supplement people tell me to take, I take a small fraction, very small fraction in the beginning to see what happens.  Sometimes, even my fractions send me for a herx loop.  I'm guessing this is a symptom of lyme too, because before all my problems, I would not use the word "sensitive" for my digestion or any part of my system, except maybe some emotions.  I used to be "iron gut".  So, I'm sure the lyme does that.  Or any other bad bacteria that gums up your digestion.

I'll check out that magnesium and seven million thank you's to your help.  This lyme thing is new to me.  How are you doing?  Do you feel like you're winning the battle?  I had felt like that at one time before figuring out the lymes, but this year has been a big setback.  But it got me to start digging more.
Posted by: NoMorePartyInMyMouth, Tuesday, August 23, 2011, 1:43am; Reply: 25
Interesting thread.   I have requested a CD57 test from my ND for lyme's.  I also have an auto immune disease called Lichen Sclerosis, through my support group for LS there is a lady who has recently learned that a bug bite she received while in Tanzania gave her a mycoplasma infection.  This type of infection comes from ticks and certain bugs.  She tested positive for Lyme's but has no symptoms.

She is treating the mycoplasma infection with biotanical supplements.  Cleaning at a cellular level.

She believes the mycoplasma infection is the root of her Lichen Sclerosis.  

Don't mean to worry any ladies in this group, but several women who have Lyme's develop Lichen Sclerosis.

I was bit by a tick in 2006 while fishing, my LS symptoms started in 2008.

Deenise
Posted by: JJR, Tuesday, August 23, 2011, 3:55pm; Reply: 26
Could be just another symptom or problem with this type of infection.  I would imagine dealing with it may clear up the LS????  
Posted by: nowishow, Tuesday, August 23, 2011, 6:34pm; Reply: 27
Hi JJR,

I'm happy to help in any way I can. What I know for sure is everyone has a different path to health from Lyme disease. I'm continuing to get better, but recently had such huge Babesia symptoms again that I was very depressed for a few weeks. I was told my body might fight all three bugs again (after the first cycle through) but I didn't think the second time would be so painful. But after about six weeks the pain is really starting to lessen so I feel hopeful again.

I did an informal survey on a Lyme forum I belong to. My impression from the results were this.

If you start treatment within 1-2 years of being infected, you could recover within a year or so

If you start treatment after two years of being infected it's usually 2-4 years to recovery (with some people taking even longer or never fully recovering)

So I've got at least another year to go. :(

I've been sick for years. The bites that gave me the big infection was about 7-9 years ago, but my doctor believes that I got a smaller infection around 15 years ago (I had many tick bites around that time). I didn't have a lot of symptoms until I started the Geno Type diet which stopped me eating wheat (I previously had been eating for a B secretor, I didn't know I was a nonnie). Over the last 10 - 12 years I lost my stamina, strength, and had a lot of strange little symptoms. I just thought I was getting old.  :P Once I started the GTD I had a very strange experience I started getting better in some ways and worse in others until after about a year I ended up in the hosptial. I now believe that starting the GTD healed my immune system enough that my body started an all out war with these bugs and I started having enourmous herxes! Most people have to take medicine to create a herx. GTD is very powerful!  :o

Anyone have a similar experience?
Posted by: JJR, Wednesday, August 24, 2011, 3:45am; Reply: 28
Mine was overnight.  Except I developed the heart arrhythmia about 4 years before I crashed.  And I had a few episodes before the "big" crash, where I just didn't feel right for about a week.  I think I probably had it in my system since a little after the year 2000.  If I had to guess.  Because that's when I suspected it the most.  I felt lousy one week.  Had this weird looking bruise on my knee that was clear in the middle, possibly a bullseye rash, and I had just gone camping in the North woods, way up there. I think it was more like, ugh, I forget what year that was.  I'll have to talk to my wife and see.  But it was around then.  But, I don't really know if that's when it all started.  I was relatively strong and what not until almost 5 years ago, my digestion stopped working, real bad.  Like someone flipped a switch.  It was bizarre.

My spleen is really struggling today.  I had a chiro adjustment and I think it helped get the blood flowing.  So, my spleen seems overloaded, it hurts and then I get this real heavy feeling like I can't breathe very well.  My heart rate and BP will be normal, but it's like the filter is clogged.  My chiro suggested drinking 1/2 cup of olive oil 3 days in a row.  I'm not doing that.  It just doesn't seem right.  It might work, but I think I'd be in trouble.  I'm taking standard process spleen supps.  Spleen PMG and Whole, Dessicated spleen, but is there any other tips on supporting and cleansing it?
Posted by: Kim, Wednesday, August 24, 2011, 11:01am; Reply: 29
I got sick almost 5 years ago.  I too just got sick overnight.  One minute I was healthy and the next I wasn't.  I was extremely active raising horses, had an internet business and was weight lifting 4 days a week.  A typical day involved tossing 70 lb bales of hay out to the horses.  Pushing 1,000 lb animals around each day was good exercise too.

When this happened, the adrenals & thyroid went to a slow crawl.  Digestion got so bad I had to have an endoscopy to see if there were ulcers, tumors, etc.  They did remove a small tumor in my stomach and duodenum that was benign.  No reason found for the stomach problems but a gastroenterologist does not know about food allergies/diet or how lyme can affect all body functions. Migraines increased, blood pressure got even lower, and I had all the classic lyme symptoms.  Definitely have Babesia symptoms big time.

We expect it is going to take a few years to recover from this.  I have many neuro symptoms so that is one big reason I am combining IV antibiotics with homeopathics.  I am trying to save my brain cells from permanent damage.  I am positive for band 39kd and 41kd on the western blot and tested positive for Ehrlichia/anaplasmosis.  If I have any other coinfections they will have to be clinically diagnosed by the LLMD.  Testing is so unreliable.

DH has lyme too.  He had a rash last year and did 4 months of doxy.  He got another big welt from another bite this year.  I had a tick bite on my scalp in July.  We have both had numerous bites over the past 10 years.  That doesn't count all the bites DH had while in the Marine Corp.  

Needless to say, we keep our grass short, treat our dogs with frontline Plus, strip and check ourselves every time we come in from the outdoors.  We are getting those daminex tubes to put outside around the house.

If there was a place to live without ticks, I would move there, but there isn't one.  The science talks about biting flies and mosquitos transmitting lyme.  Lyme, a distant cousin to syphllis, has some doctors believing the spirochetes are sexually transmitted.  That is scarey!

Under Our Skin documentary about lyme disease is free to view on Hulu.com for a short period of time if anyone wants to see it.
Posted by: JJR, Wednesday, August 24, 2011, 5:39pm; Reply: 30
Yeah, I don't think you can get away from it.  It could be in anything.  People that get it aren't always "outdoors" people.  I was constantly outside, cut up many deer, and when I moved into my current house was cutting trees down a lot.  Etc.  Outside was my domain.  Not any more.  No energy to.

Another issue I have is weight loss.  I'm struggling with it now.  I wish I could overcome this.  I just keep getting lighter and lighter.  Which brings me to another issue of sleep.  All the experts say to go to bed before 11.  But I am the most hungry at night and I eat a lot then.  I'd say I get 2/3 of my calories after 7 pm at night.  My body just wants it.  So when I eat at night, I end up going to be around 1.  Thankfully, I don't have to get up early, so I'll sleep 8-9 hours.  And I've been sleeping better this last year than I ever have.  But I wonder if I really need to change this late deal, or if some of us are just different.  
Posted by: nowishow, Wednesday, August 24, 2011, 9:16pm; Reply: 31
Quoted from JJR
My spleen is really struggling today.  I had a chiro adjustment and I think it helped get the blood flowing.  So, my spleen seems overloaded, it hurts and then I get this real heavy feeling like I can't breathe very well.  My heart rate and BP will be normal, but it's like the filter is clogged.  My chiro suggested drinking 1/2 cup of olive oil 3 days in a row.  I'm not doing that.  It just doesn't seem right.  It might work, but I think I'd be in trouble.  I'm taking standard process spleen supps.  Spleen PMG and Whole, Dessicated spleen, but is there any other tips on supporting and cleansing it?


I really recommend trying the Red Root tincture. I know a number of people that have been helped by it. I've tried other spleen remedies that didn't help me at all until I found Red Root, which is recommended by Stephen Buhner (big name in the Lyme community). He has a great book out by the way that helped me quite a bit. Within 30 minutes after the first time I tried Red Root I felt a bubbling feeling in the area of my spleen and the pressure eased up for the first time since I got really sick. I got the bubbling feeling off and on after that. I still use it because if I stop I really notice my spleen again. I started on 10 drops, 3 times a day and increased over a few months to 20 drops 3 times a day which is where I've stayed. It's really cheap so not much of an investment if it doesn't work for you.

I've had four relative good days in a row.  ;D And had the best night's sleep, last night, in the last six weeks (since I had my "relapse"). It's so hard to explain to people the kind of pain I live, work, and sleep with. On a scale of 1-10, I live with pain in the 5-6 range most of the time with the pain spiking up to the 8-9 for hours at a time. The last few days I've been in the 3-4 range, which I can pretty much ignore. Not at all normal, but I can fake it better at work.  :-/ The fatigue is hard too, but the pain is off the charts for me.

Do you guys have a lot of pain?
Posted by: JJR, Thursday, August 25, 2011, 3:30am; Reply: 32
The pain is less intense than the fatigue, for me.  The fatigue is terrible at times.  Like I have one foot in the  grave and am walking thru thick mud.  It's not always like that, but it can get pretty bad.  I do get pain sometimes though. Like my spleen right now.  I pray it doesn't get worse and maybe mine is different.  I get inflammed real bad when I herx though.  That's when the pain shows up for me.  Like my skin is on fire.  Fire.

What brand of Red Root tincture do you get and where, if you don't mind me asking?  I'll be saying a prayer for your pain.
Posted by: ieatmeatnlikeit, Thursday, August 25, 2011, 5:24pm; Reply: 33

I read a book called Top Ten Cures for Lyme. Stephen Rosner wrote with seeming precaution  possibly just because of all the AMA  and Insurance/Pharm industry conflicts involved in this scourge. He, in possibly more words than were helpful to me covered much ground but also somehow left much out. He offered so many protocols that the sense I got was that nobody can afford to even consider that one size fits all. He did pay passing lip service to Rife machine technology which is outlawed in the U.S. but perfectly legal in some other lands. Someone I know has had really good success with Rife treatments where antiB's and even traditional herbal regimes left things less than complete.
I  was intrigued so I sought out a way to try it myself. I suggest it because I do believe I felt better for several weeks after doing  only one session. It is not an easy thing to follow up on in my area. Most people get their own devices and treat themselves and keep it all under wraps for obvious reasons. Evidently it is subtle and takes many sessions to get definitive results. Licensed doctors are not allowed to tell patients about this kind of therapy but if a patient asks about it and said doctor is  in the know, they might at their discretion send you to a Physical Therapist with a prescription for a session using similar technology. Rosner also mentions a strange deviation present in Lyme affected folks having to do with the "dis-function of Vitamin D uptake". Some Yale researcher has a paper on it and it seems to destroy or subvert the benefit of sunlight. So Rosner himself stays out of the sun.
I also think the name Japanese Knotweed Extract should be mentioned. I first heard about Teasel on this forum and presently keep both in my daily regime about three time a day. A new book called Invasive Plant Medicine by Timothy Lee Scott talks about invasive weeds showing up ahead of  now looming problems like Lyme and how many of them are turning out to have plenty of helpful components traditionally found in otherwise hard to obtain exotic and expensive sources.
Finally talk about expensive, for treatments I'll mention Pycnogenol(?) I heard about it back in my first Lyme fight. I took it with Aloe Vera juice as recommended. And for lifestyle: Exercise. Don't let yourself just sit around ! Push yourself to keep your blood moving and oxygenated. This is probably the most important element in keeping Lyme suppressed once you have it under control.
Of course reading too much about Lyme can make you very angry if you wish to go there. Try looking into the book about Plum Island called "Lab 257" by Micheal Christopher Carroll for a chilling dose of learning where Lyme probably got started in this country. Fast forward to the present: The suggestion that some Lyme ticks now carry a U.S. patented bioweapon called Mycoplasma should make everyone involved question their morals. Personally I don't know where I stand on the matter of affliction vs gift. Some days are better than others but I think more about nature and the planet now than I did before I had Lyme to deal with.
iemnli
Posted by: nowishow, Thursday, August 25, 2011, 7:21pm; Reply: 34
Quoted from JJR
The pain is less intense than the fatigue, for me.  The fatigue is terrible at times.  Like I have one foot in the  grave and am walking thru thick mud.  It's not always like that, but it can get pretty bad.  I do get pain sometimes though. Like my spleen right now.  I pray it doesn't get worse and maybe mine is different.  I get inflammed real bad when I herx though.  That's when the pain shows up for me.  Like my skin is on fire.  Fire.

What brand of Red Root tincture do you get and where, if you don't mind me asking?  I'll be saying a prayer for your pain.


I only get that extreme fatigue when my body is fighting the actual "Lyme bug". So I know what you're talking about but have only experienced it for a few months. I really feel for you! By the way burning pains are usually associated with Bartonella.

I get most of my supplements from iherb.com because I get free shipping for order $40 or over. They're fast and have very good prices. Here's a link to the red root page.

http://www.iherb.com/Red-Root-2-fl-oz-60-ml/5333?at=0
Posted by: nowishow, Thursday, August 25, 2011, 7:34pm; Reply: 35
Quoted from ieatmeatnlikeit

I read a book called Top Ten Cures for Lyme. Stephen Rosner wrote with seeming precaution  possibly just because of all the AMA  and Insurance/Pharm industry conflicts involved in this scourge. He, in possibly more words than were helpful to me covered much ground but also somehow left much out. He offered so many protocols that the sense I got was that nobody can afford to even consider that one size fits all. He did pay passing lip service to Rife machine technology which is outlawed in the U.S. but perfectly legal in some other lands. Someone I know has had really good success with Rife treatments where antiB's and even traditional herbal regimes left things less than complete.


I've never tried Rife machines but have heard wonderful reports from other Lymies about them. I have Reiki treatments when I can afford them and they seem to help as well, actually they give me a strong herx reaction which to me is a good thing. I really like energy type healing. I've always like homeopathy as well.

I've never found anyone who benifited from the no sun, no vitamin D program. But it seems everyone responds so differently it wouldn't surprise me if it helped someone. I do better if I get sun. It actually works like a detox for me.
Posted by: nowishow, Thursday, August 25, 2011, 7:34pm; Reply: 36
Quoted from ieatmeatnlikeit

Fast forward to the present: The suggestion that some Lyme ticks now carry a U.S. patented bioweapon called Mycoplasma should make everyone involved question their morals. Personally I don't know where I stand on the matter of affliction vs gift. Some days are better than others but I think more about nature and the planet now than I did before I had Lyme to deal with.
iemnli


I tested positive for Mycoplasma  :o
Posted by: JJR, Thursday, August 25, 2011, 8:31pm; Reply: 37
Good stuff here.  Thank you Meat eater.  When I went down to mayo, that was one lab I also failed.  VIT D levels were low.  And whenever I take D3, I feel really lousy.  I don't feel lousy with the D in Cod liver oil though.  

Thanks for the Iherb, nowishow!  My doctors assistant suggested I try Oregon Grape root, before Red root, she said it's less strong.  But she did say the Red root tincture is good too.  I know I need to get moving more.  It's hard when your fatigued and get heart arrhythmia's when pushing myself physically.  Among other things.  She suggested I try some bouncing, which joe did too, and deep breathing.  That'll get the lymph moving. I do deep breathing, but not like long periods.  Maybe 10 minutes.  


Lyme.  Grrrrr.....
Posted by: ruthiegirl, Thursday, August 25, 2011, 8:49pm; Reply: 38
Quoted from JJR
Another issue I have is weight loss.  I'm struggling with it now.  I wish I could overcome this.  I just keep getting lighter and lighter.  Which brings me to another issue of sleep.  All the experts say to go to bed before 11.  But I am the most hungry at night and I eat a lot then.  I'd say I get 2/3 of my calories after 7 pm at night.  My body just wants it.  So when I eat at night, I end up going to be around 1.  Thankfully, I don't have to get up early, so I'll sleep 8-9 hours.  And I've been sleeping better this last year than I ever have.  But I wonder if I really need to change this late deal, or if some of us are just different.  


I think some of us are just different. My father  could never go to bed before 11:00 either, many times not until 2:00 AM or later. Nor could he get up before 9:00 or 10:00 AM. Fortunately, he was powerful enough in his company that he could set his own hours; as long as he got electronic devices designed, they didn't care too much what hours he kept.

Getting to bed before 11:00 may be "ideal" for "most people" but we're all individuals. For some people, 11:00 may be way too late, and bedtime needs to be 8:30 or 9:00 and then they wake up bright-eyed and bushy-tailed at the crack of dawn. You clearly do well going to bed much later and sleeping much later.

I also wonder if those "specific bedtime" reccomendations were based on any real science regarding light cycles, or if it was based on the notion that "we all have to be up by 7:00 AM so we need to be in bed by 11 to get 8 hours".
Posted by: Chloe, Thursday, August 25, 2011, 8:55pm; Reply: 39
Quoted from nowishow


I've never tried Rife machines but have heard wonderful reports from other Lymies about them. I have Reiki treatments when I can afford them and they seem to help as well, actually they give me a strong herx reaction which to me is a good thing. I really like energy type healing. I've always like homeopathy as well.

I've never found anyone who benifited from the no sun, no vitamin D program. But it seems everyone responds so differently it wouldn't surprise me if it helped someone. I do better if I get sun. It actually works like a detox for me.


I did Rife a few times....don't know if it helped....It was over 15 years ago....Reiki was awesome....better than just about anything for pain...and I agree...I really like energy healing and homeopathy.  I took a lot of homeopathic formulas....a lot of different herbs....had massages,
soaked in magnesium oil baths every night for a year...My pain has lessened by 90%.

I wasn't able to tolerate vitamin D either until I got somewhat better.  I now take 5,000 iu of D
with no problems.

I have very few aches and pains these days....when I lived with pain for 4 decades....I owe this
to trying just about every type of supplement, herb and modality that I heard about...I lived
on Olive Leaf Extract for about 10 years...Now I take Lauricidin, which I think is what is helping
me with all the stealth viral issues I had.  First time in ages that I feel really well....I had to
tweak my SWAMI a bit....eliminate foods that made me too acidic.....I had to put the dairy
on hold because my body seems to want to cleanse right now and so I'm eating more raw foods.

I take Genoma Security 2x a day and I think it's helping with leftover biofilms.  There just
wasn't as much available to me then as there is now.

Also, after 4 decades, I'm actively exercising 3-4 times a week...I used to do a little, but now
I exercise a lot....which is saying a lot considering I'm older.  But the pain kept me from exercising.  I had neurological pain that was excruciating....All gone now.

There is hope for all of you..:)

Posted by: nowishow, Thursday, August 25, 2011, 10:38pm; Reply: 40
Quoted from Chloe


I have very few aches and pains these days....when I lived with pain for 4 decades....

Also, after 4 decades, I'm actively exercising 3-4 times a week...I used to do a little, but now
I exercise a lot....which is saying a lot considering I'm older.  But the pain kept me from exercising.  I had neurological pain that was excruciating....All gone now.



Chloe! I can't imagine living with the kind of pain I've been having for 40 years. It feels impossible to me. I don't know how you did it.

I haven't been able to excercise at all except for yoga. My heart just starts pounding or I start having very strong pain and/or weakness. I've always been so active. I used to cycle (60 mile rides) kayak, walk, hike, you name it. I was a construction worker for years. Always so active and now I'm a couch potato. It's very strange and not a little depressing.

But you've given me hope. Thanks!
Posted by: JJR, Friday, August 26, 2011, 1:53am; Reply: 41
Quoted from nowishow


Chloe! I can't imagine living with the kind of pain I've been having for 40 years. It feels impossible to me. I don't know how you did it.

I haven't been able to exercise at all except for yoga. My heart just starts pounding or I start having very strong pain and/or weakness. I've always been so active. I used to cycle (60 mile rides) kayak, walk, hike, you name it. I was a construction worker for years. Always so active and now I'm a couch potato. It's very strange and not a little depressing.

But you've given me hope. Thanks!


I'm so glad I'm not alone in this aspect.  I used to be an outdoorsman, hunter, put the kids on my back when they were little and take hikes.  Now, it's the same deal as what you've just said.  I was getting arrhythmia's when pushing myself, and even if I don't get an arrhythmia, if I over do it, my heart rate just flies out of control, I get the chills, and I feel like something is really really wrong.  One time a year ago I was feeling well, I helped my Dad move a really heavy desk and my body unraveled.  I got pain all over the place, etc etc.  Same deal with the heart stuff, and it took me a week to finally calm down.  I mean, I would calm down at night to a point, but I had to take meds, and what not and my body didn't get over it for a while.  It's very frustrating, because I was always an athlete and active.  Until this all hit 5 years ago.  I do think I need to do something, but I'm not sure what my body can handle yet.  I haven't tried yoga.  When I feel good I do stretching and few push ups, some leg lifts.  But it's usually about 10 minutes or so.  And even that has fallen by the wayside these last couple of months.  I have one of those balls and I think I'm going to sit on it and bounce a little at first.  Get the lymph moving.  And go from there.  But I've been so up and down lately.  I felt terrible yesterday.  Today was better.  Praise the LORD!!

I also do the dishes and cook.  But it hasn't been anything real in depth or time consuming lately.  Meaning I don't stay on my feet for overly long before sitting down.  
Posted by: JJR, Friday, August 26, 2011, 3:32pm; Reply: 42
Yeah, I wasn't down in weight when I went to bed last night!!!   :)
Posted by: nowishow, Friday, August 26, 2011, 7:40pm; Reply: 43
Quoted from JJR
Yeah, I wasn't down in weight when I went to bed last night!!!   :)


I've heard that weight loss can be attributed to Babesia. The heart symptoms are usually Babesia as well. If you herx by taking Artemisinin you can pretty much assume you have Babesia. In my opinion. This is how I first tested myself to see if I had Babesia because my lab test was negative. Later my current doctor confirmed this through clinical diagnosis. Once I started treating just for Babesia my progress started to move forward.

This stuff made me herx so bad. I had to try a much gentler form of the herb.
http://www.iherb.com/Nutricology-Super-Artemisinin-60-Veggie-Caps/3484?at=0

This was much easier on me
http://www.iherb.com/Gaia-Herbs-Sweet-Wormwood-Herb-1-fl-oz-30-ml/14926?at=0

But I found A-Bab to work the best for me.
Posted by: nowishow, Friday, August 26, 2011, 7:45pm; Reply: 44
Quoted from JJR


I'm so glad I'm not alone in this aspect.  I used to be an outdoorsman, hunter, put the kids on my back when they were little and take hikes.  Now, it's the same deal as what you've just said.  I was getting arrhythmia's when pushing myself, and even if I don't get an arrhythmia, if I over do it, my heart rate just flies out of control, I get the chills, and I feel like something is really really wrong.  One time a year ago I was feeling well, I helped my Dad move a really heavy desk and my body unraveled.  I got pain all over the place, etc etc.  Same deal with the heart stuff, and it took me a week to finally calm down.  I mean, I would calm down at night to a point, but I had to take meds, and what not and my body didn't get over it for a while.  It's very frustrating, because I was always an athlete and active.  Until this all hit 5 years ago.  I do think I need to do something, but I'm not sure what my body can handle yet.  I haven't tried yoga.  When I feel good I do stretching and few push ups, some leg lifts.  But it's usually about 10 minutes or so.  And even that has fallen by the wayside these last couple of months.  I have one of those balls and I think I'm going to sit on it and bounce a little at first.  Get the lymph moving.  And go from there.  But I've been so up and down lately.  I felt terrible yesterday.  Today was better.  Praise the LORD!!

I also do the dishes and cook.  But it hasn't been anything real in depth or time consuming lately.  Meaning I don't stay on my feet for overly long before sitting down.  


I've heard this kind of story so often. You are so far from being alone in this, going from an athlete to unable to do much of anything. My theory is we had a much bigger chance to get tick bites because we're so active, out in nature all the time. What a price to pay!
Posted by: Kim, Friday, August 26, 2011, 8:16pm; Reply: 45
With Babesia, you may experience weight loss or weight gain.  I have the latter to deal with.

From what I read about Lyme disease, the nymph ticks pick up the spirochetes and coinfections from mice.  The Lyme groups suggest using Damminex tubes around the house.  If you do a google search, you will find places to purchase them.  Cotton balls are in the tubes which the mice take to their nests and the permethrin in the cotton balls kills the ticks.  They are pricey but worth it for less ticks.
Posted by: JJR, Saturday, August 27, 2011, 12:48am; Reply: 46
Mice and chipmunks are on my "kill at will" list.  Although I haven't gone after the chipmunks this year as much.  I haven't seen a lot of squirrels lately, thank God.  And we did have a mice problem at one time, but I think it's better now.  We'll see when the winter comes.  Time for the traps and some cheese.

Yeah, I'm sure gain or loss of weight is just a sign of something not working right in the system.  Like someone posted, it strikes us at our weak points.  I've never been one to put on too much weight, except for a short time in my early 30's.  But even then it wasn't terrible.  As a kid, I was always skinny.  I did sprout some muscles with lots of effort in high school.  It's a shame to see them dwindle.  Oh well, God says don't be as worried about those things as the spiritual.  
Posted by: Ribbit, Saturday, August 27, 2011, 2:34am; Reply: 47
Quoted from Kim




  It literally feels like I am shaking on the inside but there is no shaking on the outside.  It is definitely neurological.  



Yes. That's me.  When I was at my worst last summer, I felt like that constantly.  Now it's just when I wake up during the night sometimes.  Thankfully it's only off and on.
Posted by: Ribbit, Saturday, August 27, 2011, 2:35am; Reply: 48
Quoted from JJR


I'm praying for you Leanne.  How is your spleen?  Do you ever feel like it gets gummed up and hurt?


Thanks, JJ.   :)  What does a gummed up spleen feel like?  I don't even know what the symptoms are.
Posted by: Ribbit, Saturday, August 27, 2011, 2:52am; Reply: 49
Quoted from ieatmeatnlikeit
Rosner also mentions a strange deviation present in Lyme affected folks having to do with the "dis-function of Vitamin D uptake". Some Yale researcher has a paper on it and it seems to destroy or subvert the benefit of sunlight. ........

Try looking into the book about Plum Island called "Lab 257".....


That's odd about vitamin D uptake.  I'm evidently very deficient.  I feel fabulous when I've been in the sun.  If I go to the garden first thing in the morning and get two or three hours of sun I will feel fantastic the rest of the day.

Re: Plum Island, I don't even want to think about it.  DH is from New York and it turns out he did a big paper in school about it.  He told me all the nitty gritty details about what's gone on over the years with the former Nazis being brought here and I can't even allow myself to believe that their experiments are now destroying my body today. >:(
Posted by: Ribbit, Saturday, August 27, 2011, 2:54am; Reply: 50
Quoted from Kim


  The science talks about biting flies and mosquitos transmitting lyme.  Lyme, a distant cousin to syphllis, has some doctors believing the spirochetes are sexually transmitted.  


That's not the first time I've heard that.  DH told me it was like syphilis.  He e-mailed me a controversial article about it.
Posted by: Ribbit, Saturday, August 27, 2011, 3:06am; Reply: 51
Quoted from Kim
With Babesia, you may experience weight loss or weight gain.  


I have only read that weight loss is a symptom.  But I have had to deal with weight gain as well, and it makes sense because the bacteria attacks your thyroid just like it attacks everything else, bringing down its function....and causing you to gain weight.

When I read through the insanely long list of Lyme symptoms, there are only four that I don't have: weight loss, hair loss, Lyme "rage" and sensitivity to alcohol.  I have every neurological symptoms possible, although with herbal/homeopathic supplements and a mostly raw diet, they have greatly diminished.

I still wish I could think, though.

JJ, when I get to where I can't think of a word (which only happens when I'm talking, not when I'm typing, oddly enough), I picture it in my mind--the object, then the word written.  After I picture the written word, I can read it and then say it.  I know that sounds silly, but if you try it maybe it'll work for you too.  And it's only with nouns.  I don't have trouble thinking of adjectives or adverbs or anything else although I have been known in the last year to mix up pronouns. :B

I believe my Vagus nerve is a problem too.  I learned about it from Paul Clucas when we were talking about ADD and super-sensitive ears.  Now I know that the nerve runs the entire length of your body and is responsible for a good many things.  Fish oils and B vitamins have helped.  I also wear an ear plug in my left ear now (the sensitive one) and it helps me relax.
Posted by: nowishow, Saturday, August 27, 2011, 3:20pm; Reply: 52
Quoted from Ribbit



JJ, when I get to where I can't think of a word (which only happens when I'm talking, not when I'm typing, oddly enough), I picture it in my mind--the object, then the word written.  After I picture the written word, I can read it and then say it.  I know that sounds silly, but if you try it maybe it'll work for you too.  And it's only with nouns.  I don't have trouble thinking of adjectives or adverbs or anything else although I have been known in the last year to mix up pronouns. :B




That's what I do too!  :)
Posted by: JJR, Saturday, August 27, 2011, 3:45pm; Reply: 53
My symptoms of a gummed up spleen is pain on the left side of my rib cage.  It feels the same as kidney pain, I think.  And my blood has been thicker lately.  I know this because I need Vitamin E regularly now.  I was off of that for a long time.  

Thanks for the tip on the word thing.  I'll have to try that.  Yeah, I usually have less problems while typing.  Every once in a while I'll be at a loss for a word, but it's a lot more rare.  Some days it feels like I walk around searching for words to communicate.  It's not horrible, but it's there.  But my wife says she gets that sometimes too.  

This thread has been sooooooo good.  Because it has really made me feel at home with my symptoms.  I don't feel alone and it explains why I feel like I do.  Instead of the big question hanging over me.  Before it was always a big mystery as to why I was going through this.  I don't know if it really makes it any easier, but I feel, safer knowing what the cause of my problems are.  Or I'm sure at least a large part of it.  I mean we've had our house tested for Mold, which this last test the guy said it was really really good.  The only stuff that showed up was the same stuff as outside in such a small amount that he said you can't get away from what's outside.  We try and eat the most pure foods, water filters, etc etc.  This diet.  And despite my strictest efforts, that wasn't necessarily fixing me.  It helped, and I'm sure if I didn't do all that stuff, I'd be worse off.  But grasping at straws, trying to figure out why I feel like I do, has been no fun. Now, I see that other people have the same exact symptoms.  Or may be a little different but some are exactly the same, and I just feel more relaxed about it in my mind.  

I'll bring up another symptom, I have noticed at the New Moon, it seems to affect me more.  I've brought this up in other threads.  But I didn't sleep real well last night, and the New Moon is Monday.  And usually my digestion takes a hit around the time of the new moon.  Meaning I'm not as hungry and I seem to struggle in the gut more.  It seems opposite, as others say the Full Moon may mess with them.  But for me it's the opposite.  
Posted by: Lola, Saturday, August 27, 2011, 6:52pm; Reply: 54
Dr Nash just posted this on FB
https://www.facebook.com/UNDEROURSKIN
Posted by: JJR, Saturday, August 27, 2011, 11:09pm; Reply: 55
I haven't finished watching it yet.  It's kind of a lot to take in at once when you know you have it in your system.
Posted by: Ribbit, Monday, August 29, 2011, 2:28am; Reply: 56
Yeah it is, JJ. We watched it several months ago and Rob and I just sat there and thanked God that I'm not as bad as I was a year ago.  I'm also thankful we've been on this diet as long as we have been.  I knew 6 1/2 years ago, before I had a name for it, that the diet threw "it" into remission.  I remember telling Rob that.  That "it" was better than it had been in a long time.  I'm glad I have a name for it (thanks to Chloe's patience explaining it to me more than once!) so I can figure out what to do from here.

I often wake up during the night and first thing in the morning with pain in a particular rib on my left side.  It's been that way for years.  It's in the back, not the front.  I just assumed it's from having a mattress that's not comfortable.  I have learned to sleep with multiple pillows tucked in every-which-way to relieve the strain on my joints and ligaments during the night.

I keep injuring my joints, and now I know why.  I complained to my chiropractor recently that my wrist hurt (the one that hasn't stopped tingling since my paralysis episode last summer), and he felt around...and then felt around my elbow and shoulder and knee and ankle (because I'd complained about them too) and he said, "The tendons around your joints are thin and not developed--they're child-sized.  It's almost like they didn't form completely."  I was so glad he said this to me because I always KNEW something was wrong, but no doctor/chiropractor had ever confirmed it!  I knew I always wore out too fast, had no endurance, and got hurt more than anybody else.  My mom made me wear high-top sneakers for years because my ankles were so weak I kept spraining them.  We should have known something wasn't right.  Anyway, my assumption now is that the Lyme bacteria in my joints at such a young age kept  my ligaments from forming like they should.  I'm not little--I'm 5 ft 6 1/2 inches tall and I currently weigh just over 125. Yes, seriously--I amazingly lost all the weight I was holding onto after the last baby was born, that I never thought I would lose because of my inability to exercise.  But my wrists are very small--5 1/2 inches around--and every joint in my body snaps and crunches.  They always have.  The joint/ligament issue paired with the muscle jumps, left arm jerks and left ear flutters ... and my severe pelvic organ prolapse....and you've got one body over here coming apart at the seams.  It all makes sense.  All my health issues over all these years finally make sense.

Thanks for letting me talk, y'all. :K)

Now I have a question for you ladies.  If you had Lyme during pregnancy, did you have a particularly rough time of it?  Did you have rashes on your belly?  I'm not prone to rashes, but when I'm pregnant, I get a blotchy rash all over my belly.  The president of the GA Lyme Disease Association said pregnancy seems to cause bacteria flare-ups in some people, and that one of the symptoms was a tummy rash.  I gasped when she said that, because my doctors and midwives never had an answer.  They said it was heat rash, but I didn't believe it.  Were you unusually nauseated?  Did you have unusually severe postpartum depression?  Did it take forever for you to get to feeling normal again after a baby was born?
Posted by: JJR, Monday, August 29, 2011, 4:16am; Reply: 57
Oh I had all of those symptoms.  (referring to the pregnancy stuff, which of course I'm joking!!)

Man Leanne, just man.  God has to be powerful in you.  Keeping you held together.  I just pray he keeps keeping you together and healing you.  He hears our prayers.  I know it.  

And yeah, that pain is probably your spleen.  Or kidney.  But I'm guessing it's your spleen.  The gal at my doctors office says that's what Lyme does. It could either be attacking it, or it just gets gummed up so bad because your body is trying to clear the dead stuff your body is killing, which is in large amounts.  Or something like that.  I remember one time I went into the ER with so much pain in my whole upper torso.  This was probably over 2 years ago.  Elizabeth can attest to this, the pain sort of went from my whole upper body and zero'd in on that left side.  AND, that left side of my back was hotter and redder than everywhere else while I was in the ER.  I bet my spleen was messed up bad that time.  They said it was fine, but my pain said differently.

Are kidney stones a sign of lyme?  Because I had a few of those and of course no one ever knows why with them.  Although that might have been something else my body brought to the party.  When I was a young man, I barely ever drank water and had an outside job, sweating all the time.  I drank lots of soda though, and I'm sure that could've done it.  And having Genetics that they lack glutathione doesn't help I'm sure.
Posted by: Kim, Monday, August 29, 2011, 1:26pm; Reply: 58
In the Under Our Skin documentary, I am like Dana....with pain, pain, relentless pain!!!  I have fatigue too, but I am in so much pain all the time.  One day, my ribs feel like someone is trying to break them in two, then the next day, I can hardly walk my knees and hips hurt so much.  There are days, I can't lay my head against my pillow because the nerves in my neck and back of my scull are so sensitive to pain.  I get leg pain that feels like someone is breaking my legs.  I don't know how I do this day in and day out.  I use pain meds sparingly when I just can't take it anymore.

I see my LLMD this Thursday.  He is one of the doctors featured in the documentary.  I am thinking about using the website Caring Bridge to document my treatment.
Posted by: JJR, Monday, August 29, 2011, 3:30pm; Reply: 59
I'm so sorry about your pain.  Is that the girl that toured with U2?  

Does anybody have the floating stool symptom?  I've been having it this year.  It might be linked to the fact that I stopped eating cultured vegetables and my gut flora just isn't working that well.  Or, some people say it's a sign of parasites.  But, it's been worse this year than I remember.  It will go away sometimes but it's been pretty consistent and I know it's a sign of something not completely right in the gut.  Which I already know is an issue, but this didn't used to happen.  So I'm not sure why it's doing it.  Thank God my bowels still seemed to moving at least.  I would hate them to be stopped up.  But yeah, I became really sensitive to anything cultured or fermented.  I can't decide if it's because they're killing stuff and it just makes me feel bad, which I know they can.  Or, if I have some kind of problem with fermented foods.  Somebody on here said people can have problem with high histamines, and fermented foods have lots of histamines.  Or something like that.  So I just quit them all together.  But I know at one time they had helped me a great deal.  But I just get this feeling I need to cleanse and support, instead of kill.  Except for the lyme stuff.  I'm killing that.  
Posted by: nowishow, Monday, August 29, 2011, 8:07pm; Reply: 60
It seems that sometimes I am affected by the moon (new or full) but not always so I don't know if it's a coincidence. I am having a pretty bad day today. Last week was excellent (relatively). Babesia seems to run on a three week cycle with me.

I've never had a baby so I can't answer to the pregnancy questions.

JJR - Do you know what kind of kidney stones you have? Uric Acid type or other? I think Uric Acid type can be caused by soda.

I've never had the floating stool, but for a while it seemed like I had extremely heavy stool! Lead poop!  :o Maybe I was getting rid of metals?

Kim - I really related to Dana as well. So much pain! I was grateful for her story.

I'm also grateful for this thread. I belong to another group (Buhner Lyme group), but none of them eat this diet so it's easier for me here. It makes me feel so supported and not alone.

Thanks everyone!
Posted by: Kim, Monday, August 29, 2011, 9:19pm; Reply: 61
I belong to three other Lyme groups and the conversation always revolves around what the best diet is for someone fighting Lyme/coinfections.  I always provide the link to Dr. D.  
Posted by: JJR, Monday, August 29, 2011, 10:18pm; Reply: 62
Another gal I know is fighting it and she was talking about the diet they told her to eat.  I should ask her what it is.
Posted by: Kim, Monday, August 29, 2011, 10:35pm; Reply: 63
Quoted from JJR
Another gal I know is fighting it and she was talking about the diet they told her to eat.  I should ask her what it is.


Most talk about avoiding grains, dairy and sugars.  
Posted by: Ribbit, Tuesday, August 30, 2011, 2:29am; Reply: 64
Huh. The Lyme forums I've been on revolved solely around what antibiotics everybody was taking.  When I started talking alternative stuff, nobody was interested.   :-/  I quit posting on them.

I know you can't smear your entire body with BioFreeze, but I have found that 1. total avoidance of nightshade plants and 2. topical use of BioFreeze--has helped with my pain.  I don't have the stabbing pain I had last summer.  Every so often I'll have a "low" day, but it's nothing like it was.  I'm still disoriented and maybe I'm not doing as well as I think I am, but I'm not as bad as I was a year ago--that's all I can say.

Yes, JJ, God's not done with me yet.  I've got kids to raise.   :)
Posted by: Kim, Tuesday, August 30, 2011, 12:58pm; Reply: 65
There are a lot of people using just homeopathics for Lyme and then there are some like me that plan to use both fòr treatment.  I won't wait for just homeopathics to work when neurological issues are getting severe.  I plan to use both.  I will be starting with IV antibiotics and finishing up with homeopathics.  I have been sick a very long time and my husband is sick with Lyme too.

There is a good mix of both types of treatments on the groups I belong to.  We all respect what each person does for their treatment.  There is not a universal Lyme treatment.  Coinfections complicate everything.

I have used biofreeze before, but I would have to soak in it.  I have horrible muscle burning all the time.  
Posted by: nowishow, Tuesday, August 30, 2011, 7:30pm; Reply: 66
Quoted from Kim
I belong to three other Lyme groups and the conversation always revolves around what the best diet is for someone fighting Lyme/coinfections.  I always provide the link to Dr. D.  


What groups do you belong to?
Posted by: JJR, Tuesday, August 30, 2011, 10:07pm; Reply: 67
Quoted from Kim


Most talk about avoiding grains, dairy and sugars.  


Yeah, those are the hardest for people to give up I think.  This gal was a religious coke a day drinker and she actually gave it up.  I gotta check in with her.  

Ouch, my spleen is twinging as we speak.  Maybe it's getting cleaned out. I can only hope!!! Hehhehehe
Posted by: Kim, Tuesday, August 30, 2011, 10:37pm; Reply: 68
Quoted from nowishow


What groups do you belong to?


The one I help out on is lymenet.org.  I also belong to lymefriends.org which is not a very active site but still good for information.  The last one I read but really don't participate in is mdjunction.com. The information is okay but there can be some drama on that site.  

I stay mostly on lymenet.org which I think is the best one.  
Posted by: Ribbit, Wednesday, August 31, 2011, 2:29am; Reply: 69
JJ, I explained to Rob where my pain is in the mornings and he said that was my kidney area.  But it's not really inside me--it's a rib.  So I think that rib hurts because I have a couple of bulging discs and they're annoyed by me sleeping.
Posted by: JJR, Wednesday, August 31, 2011, 3:22pm; Reply: 70
Yeah well, I mistook my kidney pain for the spleen for a long time.  Or, it may be both.  I have no clue what's hurting on you.  ABJoe says that's one of the main reasons he goes to the ND, to see what organ their machine says is struggling.  It's hard to tell.  Spleen, Kidney, Back, whatever it's all messed up.  I get the same thing too because I sit more than I should and I slouch.  I'm a sloucher and my lower back will sometimes get sore.  Monday was the first day in a while that I actually did some stretching in the morning!!  

So, I can't help you on what organ or part is hurting.  But I'm just saying it's possible it's your spleen.  It has to keep up with filtering the blood out.  For me as a Nomad, Dr.D talks about it being an issue also.  Along with the Kidneys as an Explorer.  Hehehehe  

Have you eaten any Watermelon or Asparagus lately?  Or dandelion greens or collard greens or something like that?  
Posted by: nowishow, Wednesday, August 31, 2011, 6:09pm; Reply: 71
Quoted from Kim


The one I help out on is lymenet.org.  I also belong to lymefriends.org which is not a very active site but still good for information.  The last one I read but really don't participate in is mdjunction.com. The information is okay but there can be some drama on that site.  

I stay mostly on lymenet.org which I think is the best one.  


Thanks Kim!  :)
Posted by: nowishow, Wednesday, August 31, 2011, 6:11pm; Reply: 72
Quoted from Ribbit
JJ, I explained to Rob where my pain is in the mornings and he said that was my kidney area.  But it's not really inside me--it's a rib.  So I think that rib hurts because I have a couple of bulging discs and they're annoyed by me sleeping.


It could be the cartlidge around the ribs. I have some rib pain as well and that's what my doctor said it was. But who knows... ??)
Posted by: Kim, Wednesday, August 31, 2011, 11:04pm; Reply: 73
Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.
Posted by: TJ, Thursday, September 1, 2011, 12:21am; Reply: 74
Quoted from Ribbit
I keep injuring my joints, and now I know why.  I complained to my chiropractor recently that my wrist hurt (the one that hasn't stopped tingling since my paralysis episode last summer), and he felt around...and then felt around my elbow and shoulder and knee and ankle (because I'd complained about them too) and he said, "The tendons around your joints are thin and not developed--they're child-sized.  It's almost like they didn't form completely."  I was so glad he said this to me because I always KNEW something was wrong, but no doctor/chiropractor had ever confirmed it!  I knew I always wore out too fast, had no endurance, and got hurt more than anybody else.  My mom made me wear high-top sneakers for years because my ankles were so weak I kept spraining them.  ...But my wrists are very small--5 1/2 inches around--and every joint in my body snaps and crunches.
Wow, I sure can identify with that.  Although I didn't sprain my ankle until I was 29 -- even though I rolled them often, they were so flexible, and my reactions to shift my weight away from that side, that they never sprained until I stepped on a rock while carrying a heavy toolbox. ::)  I also feel like my muscles and joints aren't put together very sturdily.
Posted by: Ribbit, Thursday, September 1, 2011, 2:27am; Reply: 75
JJ, I juice dark green leafies nearly every day.  So I'm constantly doing stuff to help my liver.  I also do things that harm my liver, and I know that, but the things I do calm my nervous system in the evenings when I'm overworked, over-stressed and the children are cranky.   :-/
Posted by: JJR, Thursday, September 1, 2011, 3:49pm; Reply: 76
Quoted from Kim
Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.


That is exciting for you.  I'll pray for a safe, quick and fulfilling journey.  Peace be with you.
Posted by: JJR, Thursday, September 1, 2011, 3:52pm; Reply: 77
I need to start doing more of these "greens".  I have avoided them for a long time for some reason.  When I eat beets I feel awful, so I've always been shy of eating stuff that goes after your liver.   And when I had liver I felt awful too.  So, I'm shy of the foods that cleanse your liver.  I think I felt awful because it probably really needs to be cleaned out.  When I take betafood from standard process, ugh.  But I do take silymarin from time to time and it's good.  

How do you "hurt" your liver?
Posted by: Kim, Friday, September 2, 2011, 12:11am; Reply: 78
Three hours for a doctor's appt is a long, long time.  I have multiple coinfections and severe neurologic problems.  Even though  I have to go up stairs several times a day for my dogs, I have so much muscle weakness in my legs.  It has been getting worse and the weakness showed up on the exam.  My reflexes were extremely slow.

Antibiotics will not start until late October.  My central nervous system is going nuts and I have lots of nerve pain.  We are adding a few supplements to my regimen and some medications to try and quiet the CNS before the antibiotics start.  Right now, my body can't handle the antibiotics yet.

They also said I need to finally get the bad gallbladder out.  It hasn't been working well and it is a source of inflammation.  I am supposed to see if my insurance will pay for a brain spect scan.  Cognitive function is at an  all time low and I panic when I am so forgetful.  

The  doctor also explained that there is no absolute way to know you got rid of the spirochetes totally.  These little critters can morph their dna and hide so well in the body.  Getting your immune system to recognize them and fend them off is the goal.  If I can get to remission, that is a good place.  It is just going to take some time.

As far as diet, I am on the best possible food  plan with swami.  The digestion problems are  going to get better with time as the lyme load goes down.  For now, I follow swami and make sure that I keep tract of any foods that bother me even  if they are a beneficial.
Posted by: Drea, Friday, September 2, 2011, 12:39am; Reply: 79
Well, even though the diagnosis isn't the best, at least you know where you stand (or sit ;)) and can move forward. You also have validation, which I find to be helpful.

I'm sending you some positive energy and a {{{{hug}}}}.
Posted by: Ribbit, Friday, September 2, 2011, 1:16am; Reply: 80
Kim, I understand the neurological stuff.  I asked the chiropractor Wednesday if I could see my 8 y.o.'s latest x-rays to check the improvement on her scoliosis.  I didn't remember that I'd already seen them.  It makes me cry to realize that my memory is so horrible.
Posted by: Ribbit, Friday, September 2, 2011, 1:22am; Reply: 81
JJ, I indulge in a glass or two of wine to calm my nervous system.  I know it destroys my liver.  But I struggle to function without it in the evenings cooking dinner with the insanely loud chaos that happens around here, particularly when Rob is traveling.
Posted by: ABJoe, Friday, September 2, 2011, 3:42am; Reply: 82
Quoted from JJR
I need to start doing more of these "greens".  I have avoided them for a long time for some reason.  When I eat beets I feel awful, so I've always been shy of eating stuff that goes after your liver.   And when I had liver I felt awful too.  So, I'm shy of the foods that cleanse your liver.  I think I felt awful because it probably really needs to be cleaned out.  When I take betafood from standard process, ugh.  But I do take silymarin from time to time and it's good.  

How do you "hurt" your liver?

You're just going to have to bite the bullet and get started.  You can start slow, but do it.  If the liver can't filter more junk out because it is too sluggish to get rid of it, you'll never feel better.

From all of the reading I've done, the liver gets sluggish from simply too much toxin.  It gets overloaded and starts storing the toxins, the more it stores, the less it can process...  Ugh...  Part of the task is to get / keep the gut operating properly and the rest is to clean out the liver / spleen / pancreas.

I think it all happens together slowly - with the body choosing where the focus should be at the time.
Posted by: JJR, Friday, September 2, 2011, 3:59pm; Reply: 83
Thank you for the kick in the butt Joe.  I will take it to heart.  I do take Silymarin, as I said, and I'm sure other foods may help.  But yeah, there are quite a few that are supposed to be good for your liver that really mess with me.  Or have.  I haven't really tried any of the greens, yet.  Well, not a lot of them.  I also drink Dandelion root tea regularly.  Once or twice a week.  



Kim, thank you for the update.  I'm so glad you're going to someone that knows how to treat it.  I will say this though, some Arthichoke Leaf Extract may be a good thing to try before removing your gall bladder.  My doctor thinks it is very effective at cleaning it out.  My leg muscles feel pretty weak at times also.  Every once in a while, my legs will feel like buckling.  But I don't feel like I have a problem getting up and down stairs too much.  Although I avoid my basement. More so because it just doesn't seem that clean down there and can mess with me.  We are working on that though.

Leanne, I'm sorry to hear about your memory stuff.  Maybe it will get better.  I wonder if there isn't some kind of food or supp that will help.  Like Cod Liver Oil or Lutein.
Posted by: Kim, Friday, September 2, 2011, 4:14pm; Reply: 84
JJ, what brand of artichoke leaf extract do you use?  

I don't want to get my gallbladder out.  I think that the dieting I have done in the last 18 months has to do with some of the problem.  DH wants me to get it out, but I would try the artichoke leaf extract first.  
Posted by: Ribbit, Friday, September 2, 2011, 5:21pm; Reply: 85
What?  Did somebody say something?
Posted by: Kim, Friday, September 2, 2011, 7:16pm; Reply: 86
Quoted from Ribbit
What?  Did somebody say something?


If you are referring to my post about my gallbladder...the doctor I saw yesterday said to get my gallbladder taken out because I was sensitive when she examined the upper right area under my ribs.  I had a hida scan 3 years ago and the ejection fraction was 26 when optimal is 32.  The GI doctor did not tell me to get it out, but with all the dieting I have done to get over 120 lbs off in the past 18 months, it does  act up sometimes when I eat too much fat.  It has been much, much better since starting GTD/Swami.  

I was told that about 70% of lyme patients have diseased gallbladders.  Seems that the spirochetes love to live there.  They said that it is more than likely causing a lot of inflammation and it will make treatment very difficult if my gallbladder is inflammed.  

I ordered some artichoke leaf extract and am going to try that for a while.    I don't want to get another hida scan.  Laying on the table for a 45 minute test was brutal on my back and neck.

Posted by: ABJoe, Friday, September 2, 2011, 7:40pm; Reply: 87
Quoted from Kim
If you are referring to my post about my gallbladder...the doctor I saw yesterday said to get my gallbladder taken out because I was sensitive when she examined the upper right area under my ribs.

Are red beets a beneficial food for you?  When I had gall bladder problems, they were recommended for me in large quantities (or take some concentrated beet in supplement form).  I still use them when I have pain...
Posted by: Kim, Friday, September 2, 2011, 8:47pm; Reply: 88
Quoted from ABJoe

Are red beets a beneficial food for you?  When I had gall bladder problems, they were recommended for me in large quantities (or take some concentrated beet in supplement form).  I still use them when I have pain...


Yes, beets are a diamond for me.  I eat them everydaý.  Never get tired of them.  Also, if I have pain, dandelion tea gets rid of it most of the time.  
Posted by: JJR, Friday, September 2, 2011, 9:20pm; Reply: 89
I didn't know beets would do your gallbladder too!  Cool.

My doctor has his own blend made up, but before that he used I think it was called Integrative theuraputics.  

http://shop.elementalshealthfood.com/SPD/artichoke-extract-120-caps---8542986641344659199.jsp

His prices are reasonable for his blends.  And they seem to do the same thing.
Posted by: TJ, Saturday, September 3, 2011, 12:44am; Reply: 90
Quoted from Lola
Dr Nash just posted this on FB
https://www.facebook.com/UNDEROURSKIN
I just finished watching it on Hulu.  More and more I am convinced that I have been dealing with chronic Lyme myself.  Me feeling better back when I was on the antibiotics, then feeling worse again off of them, makes good sense now in that context.
Posted by: JJR, Saturday, September 3, 2011, 12:52am; Reply: 91
It does make sense.   Maybe when you get the biofeedback done again you could ask them to check it out, eh?
Posted by: TJ, Saturday, September 3, 2011, 12:57am; Reply: 92
Quoted from Kim
Tomorrow is my 3 hour appointment with my LLMD. I have waited two months for this.  I have to leave my house at 6 am to make it to DC for an 8:30 am appt.  Lots of traffic in the am in the DC area.  

If you have watched the documentary "Under Our Skin", you would have seen my LLMD speak in the documentary, he is Dr. Jemsek.  

Will post an update tomorrow afternoon.
So he is back in business?  Awesome!
Posted by: TJ, Saturday, September 3, 2011, 1:01am; Reply: 93
Quoted from JJR
It does make sense.   Maybe when you get the biofeedback done again you could ask them to check it out, eh?
I don't think she could check for specific diseases with her equipment.  It was just to look at body systems suffering from inflammation or degeneration.  Thankfully I had none of the latter going on!  I am going to start looking around for a practitioner that is Lyme-literate or at least open-minded to the idea of chronic Lyme disease.  I'd be surprised in my NP doesn't fall into one of those categories.

I sure am glad I've been taking Genoma Security.  It will be on my program for a long time to come.  I think I should go up to 3x per day instead of only twice as directed.
Posted by: JJR, Saturday, September 3, 2011, 4:04pm; Reply: 94
You might be surprised what they can figure out with those things.  Plus, if there programs have a protocol for that "spirochete" or "babesia/maleria" or any other co infection, I bet it can see it.  But yes, typically they see what is on the top of your priority list.  But that doesn't mean that can't have a look see at other things.  Sometimes just thinking about it, brings it to the front.
Posted by: Ribbit, Tuesday, September 6, 2011, 2:39am; Reply: 95
Quoted from Ribbit
What?  Did somebody say something?


Just sort of making a joke about being so scatter-brained.
Posted by: JJR, Tuesday, September 6, 2011, 3:55pm; Reply: 96
I caught it!   ;D

How are you today?

It's been cooler up here and it seems like my body likes it.  
Posted by: Chloe, Tuesday, September 6, 2011, 7:26pm; Reply: 97
FYI, Lyme and the gallbladder

http://www.facebook.com/note.php?note_id=124694314244803
Posted by: nowishow, Tuesday, September 6, 2011, 8:38pm; Reply: 98
Does anyone else get depressed? I get so depressed when I have my Babesia symptoms. I just cry and cry.  :'(
Posted by: JJR, Tuesday, September 6, 2011, 10:30pm; Reply: 99
I'm sure it has affected my emotions.  But to be honest, I've always been sensitive.  I'm one of those types that'll cry at a hallmark commercial.  I think it's just all I've been through.  I also have struggled with temper forever.  I'm getting better though, praise God.  I actually get more irritated and short fused when I'm feeling better.  But maybe I've been dealing with this longer than I think and that's what makes me emotional.  I don't know.  

I'm sorry you're depressed.  A better day is coming!!!!!!!!!!!!!!!!!!!!!!!!!!!  What a difference a day makes!

I'm not skilled enough to know what type of bacteria is messing with me at present.  I just know I go up and down with fatigue.  Then during the herxing sessions, I feel awful.  Which, I think it will be time to start doing soon again.  For a while I've felt like just support and flush and no killing.  Except for the Homeopath.  But I think my body and mind is gearing up into killing mode.  I'm craving fatty meats, like lamb and whole turkeys or whatever.  And my body has been real calm the last couple of days.  Almost, too calm.
Posted by: nowishow, Wednesday, September 7, 2011, 7:44pm; Reply: 100
Quoted from JJR
And my body has been real calm the last couple of days.  Almost, too calm.


:) That's usually when I have a big episode. It's like my body rests and doesn't fight the bugs for a while so I get a break. I start to feel normal again and then WHAMO  :o back to the wars!
Posted by: Ribbit, Wednesday, September 7, 2011, 9:42pm; Reply: 101
Well, I saw my ND yesterday and told her I was getting a little frustrated because I feel like I've plateaued in my healing.  I've never herxed from anything she gave me.  She grinned and said, "Oh, maybe you're ready for this--" and she held up a homeopathic remedy specifically for Lyme, not just to help my body get stronger.  Thus far, her philosophy (I gather) has sort of been to get the body strong and then it can fight the bacteria/viruses itself.  She said I wasn't strong enough for it before.  I guess I reached a point where I was getting antsy to ramp up the healing process.  Probably a good sign.  So now I'm beginning some new things and maybe I'll start healing again.

So we came home, ate dinner, went to bed.....and I started throwing up.  I threw up all last night and half of today and I have a low-grade fever.  So when this tummy thing goes away, I'll get started on all my new stuff.
Posted by: nowishow, Wednesday, September 7, 2011, 10:44pm; Reply: 102
Quoted from Ribbit
So we came home, ate dinner, went to bed.....and I started throwing up.  I threw up all last night and half of today and I have a low-grade fever.  So when this tummy thing goes away, I'll get started on all my new stuff.


That sucks! Do you know what made you sick?
Posted by: TJ, Wednesday, September 7, 2011, 11:00pm; Reply: 103
Quoted from Ribbit
I've never herxed from anything she gave me.  She grinned and said, "Oh, maybe you're ready for this--" and she held up a homeopathic remedy specifically for Lyme, not just to help my body get stronger.....

So we came home, ate dinner, went to bed.....and I started throwing up.  I threw up all last night and half of today and I have a low-grade fever.  So when this tummy thing goes away, I'll get started on all my new stuff.
Wait, you hadn't even started the remedy yet???

After reading what other people describe as "herxing", I'm not sure I've done any of it lately.  Not that I'm complaining, mind you, but that seems like an important sign that the healing process is moving forward.  I haven't felt detox symptoms from taking Deflect, Genoma Security, or Rekon Pro.  Lately I haven't reacted to probiotics, either.

Keep us posted Ribbit!  I'm eager to hear how the homeopathy works.
Posted by: ABJoe, Thursday, September 8, 2011, 2:49am; Reply: 104
Quoted from Ribbit
So we came home, ate dinner, went to bed.....and I started throwing up.  I threw up all last night and half of today and I have a low-grade fever.  So when this tummy thing goes away, I'll get started on all my new stuff.

I've had a similar reaction from just the practitioner's testing of the supplements.  I hope the real thing doesn't have this much effect, or you'll be taking a really low dose!
Posted by: JJR, Thursday, September 8, 2011, 4:04pm; Reply: 105
OH MY LEANNE!  I was thinking the same thing Joe said.  I wonder if the testing of the supps didn't have something to do with you being sick.  That would seem almost too odd to me though.  Has anyone around you been sick?  It's possible I guess.  

Either way, my problem is I get paralysis of analysis.  There are supps I probably SHOULD take, but I don't want to because I don't want to herx. It just makes doing anything so much more difficult.  And there's always something going on that makes me say, it's not a good time.  I have yet to start taking teasel.  (red root tincture).  I think that's probably my next step.

I'll be saying a prayer for you Leanne.  And I think it sounds like you're in good hands with that ND.  What did she give you to kill the lyme?
Posted by: Ribbit, Friday, September 9, 2011, 8:25pm; Reply: 106
I'm pretty sure I had a stomach virus.  In fact, when I e-mailed the ND, she wrote back and said she had picked up on that, but evidently forgot to mention it to me.  So she knew before I did that I was getting sick.  lol  I don't know where I caught it, but we just spent the weekend around a bunch of people we don't usually  hang out with, and any of them could have just gotten over something.  Nobody else in the family has gotten it [yet].

I've been doing cat's claw for several months along with many homeopathic remedies to strengthen various organs and systems.  The new one she gave me is made by Mediral (which I'd never heard of) and here's what it's got in it:

Shujin chin
Angelica
Du Hua
Magnesia Phosphorica
Kali Muriaticum
Manganese
Yucca filamentosa
Cartilage
Hydrastis canadensis
Rhus-tox
Liver sarcode
ordius
Oxalicum
Acidum
Arnica montana
Lactodens mactans
Syphillinum
Posted by: JJR, Friday, September 9, 2011, 11:18pm; Reply: 107
Wow, that's quite the list!!!! I took cat's claw a long time ago from my chiro.  I hear it's potent.  

Yeah, picking up bugs is so easy when you got lyme.  At least for me it's been.  How are you today?  The kids and Elizabeth and I prayed for you at lunch time yesterday.



I think a big thing for me to do before I do too much killing is cleanse my liver some.  My son's school gave me an AHA moment and it showed me that my liver has been clogged up.  Along with ABJoe's recommendations to start eating foods that will help.  

Anyone else feel their liver is sluggish?  Among other things.  Hehehe.
Posted by: Ribbit, Saturday, September 10, 2011, 1:19am; Reply: 108
Thanks, JJ.  My stomach is still uneasy, but I've been eating.  The bruise from my broken toe has spread halfway up my foot and three toes over.  It's pretty crazy.  All I did is stump it on a bedpost. ::)

That's just the list of stuff on the side of the bottle.  I'm taking about a dozen other supplements as well just to strengthen my body.

I don't know how to tell which organs are doing what.  I've learned to tell about my pancreas because I know what it feels like to have blood sugar swings.  Thanks to the GTD, I no longer have hypoglycemia though.  What does a sluggish liver feel like?  Every alternative practitioner I've ever seen told me I have pretty bad liver problems.  I have taken a variety of things over the years from dandelion tincture to red clover.
Posted by: Chloe, Saturday, September 10, 2011, 1:35am; Reply: 109
Feel better Ribbit.

This is interesting
http://www.encognitive.com/files/Herbs%20with%20Anti-Lyme%20Potential_0.pdf
Posted by: JJR, Saturday, September 10, 2011, 4:33am; Reply: 110
Quoted from Ribbit
Thanks, JJ.  My stomach is still uneasy, but I've been eating.  The bruise from my broken toe has spread halfway up my foot and three toes over.  It's pretty crazy.  All I did is stump it on a bedpost. ::)

That's just the list of stuff on the side of the bottle.  I'm taking about a dozen other supplements as well just to strengthen my body.

I don't know how to tell which organs are doing what.  I've learned to tell about my pancreas because I know what it feels like to have blood sugar swings.  Thanks to the GTD, I no longer have hypoglycemia though.  What does a sluggish liver feel like?  Every alternative practitioner I've ever seen told me I have pretty bad liver problems.  I have taken a variety of things over the years from dandelion tincture to red clover.


Well, from what I've read, you can't really tell by feeling.  Meaning I guess it doesn't usually hurt.  I'm just looking at other symptoms.  But according to Donna Gates, you should be able to stick your fingers under your right rib up to your first knuckle.  When I read that, I was like WHA?.  But if it's puffy or large, you won't be able to do it.  I can't really tell if I can or not.  It seems not.  But it's kind of freaky to try.  Anyone else hear of that.  For me, it's been this whole thing about floating stools.  It's been bothering the heck out of me.  This is the first good bit that it's happened so much.  And then my Son's school work, as I was checking it yesterday, said the liver secretes bile.  Which of course I knew, but it said the bile helps break down fats in the digestive system.  That, I didn't know.  It was like a light bulb went off.  I was thinking, I bet it's not doing that very well.  So then I took some silymarin last night, and the next morning, it was beautiful, no floating stool.  Looked like it should, etc.  But that has been a rare thing.  I've been going regularly, which is good.  It's just not what it should be.  

So, I've concluded my liver needs a good cleansing.  Which, since I've been on this healing journey, it has always been a thing.  I think it's extra sluggish this year for some reason.  I think it's because I haven't been taking silymarin every day.  I do drink Dandelion root tea about once a week, but I don't think it's enough.  I gotta start eating more beets, liver, etc.  Try your "greens" as you say.  I've been eating  green apples pretty regularly, but I'm not sure they're a silver bullet.  I think lemons USED to help quite a bit, but that's another food that has not sit well with me lately.  Too many foods are doing that.
Posted by: TJ, Saturday, September 10, 2011, 2:57pm; Reply: 111
Quoted from JJR
But according to Donna Gates, you should be able to stick your fingers under your right rib up to your first knuckle.
Check.

Quoted from JJR
For me, it's been this whole thing about floating stools.  It's been bothering the heck out of me.  This is the first good bit that it's happened so much.  And then my Son's school work, as I was checking it yesterday, said the liver secretes bile.  Which of course I knew, but it said the bile helps break down fats in the digestive system.  That, I didn't know.  It was like a light bulb went off.  I was thinking, I bet it's not doing that very well.  So then I took some silymarin last night, and the next morning, it was beautiful, no floating stool.  Looked like it should, etc.  But that has been a rare thing.  I've been going regularly, which is good.  It's just not what it should be.
Awesome!  I just noticed this week that mine haven't been floating, either.
Posted by: ABJoe, Saturday, September 10, 2011, 4:33pm; Reply: 112
Quoted from Ribbit
What does a sluggish liver feel like?  Every alternative practitioner I've ever seen told me I have pretty bad liver problems.

I know that gall bladder problems are manifested by pain at the point where the right rib cage stops dropping from the sternum and mostly levels.  Bile duct blockage causes pain right at the bottom of the rib cage on the right side of the body (not front) - where a stitch would be if running.  Pain or discomfort along the bottom of the rib cage between those two points is supposedly attributable to the liver organ.

Many digestive problems can be attributed to improper regulation of bile into the digestive tract.
Posted by: JJR, Saturday, September 10, 2011, 4:41pm; Reply: 113
I don't know why it's taken me so long to understand that.  Duh.  When I first starting visiting the doctor I go to now, I was always taking silymarin and artichoke.  But, I've laid off of it.  I am muscle testing very strongly for Betafood (standard process beet stuff).  And I need to start incorporating that.  I just know when I tried it a couple of years ago, I felt so awful, I stopped.  But, I've since learned how to take a little at at time, instead of a whole pill, and work up from there.  I think that's what I have to do.  Plus, start eating more of these foods that detox the liver.

TJ, does it happen frequently with you?
Posted by: Ribbit, Sunday, September 11, 2011, 3:40am; Reply: 114
My fingers go up under my ribcage on the side.  (ondrugs)

I e-mailed my ND and told her I still felt sick and asked her if she thought maybe I was herxing and she called me within minutes and said, "Yes, sorry about that, I guess you need to take less of the new stuff."  So I'm backing off now.  She said it's not necessary to herx and that you can do things gently and you don't have to feel bad.  I can't believe I was that sick just from herxing!  I've herxed before (now that I think back), but it's been a long time, and both times were under the care of Dr. Garvy---http://www.sonridgehealthcenter.com/ ---first when he ran his magic machine on me (yeah, that's all he did), and the second time when he put me on what he called Viral Shock.  It was large doses of vitamin C, echinacea and L-Lysine.  I was supposed to do it several times a day every other day.  Well, the days I'd do it, I'd feel okay.  They in-between days I'd lay in bed trying not to throw up.  I'd be that sick!  After about two weeks I stopped it because I didn't think it was good for me to feel that way.  Now I know it was the BEST thing I could have done!  I'd never heard the word "herx" back then.  This was several years pre-BTD.

Anyway, my current ND agreed that it wasn't a stomach  virus and that what she was picking up on was just the regular old viral overload I always have.
Posted by: Ribbit, Sunday, September 11, 2011, 3:44am; Reply: 115
Chloe, thanks for that link.  I will make sure I'm getting at least a clove of garlic a day, and I will add nettle tea to my diet as well.   :K)
Posted by: JJR, Sunday, September 11, 2011, 6:28pm; Reply: 116
My herx reactions aren't usually vomiting.  I just get so inflammed, that it's hard to do anything.  Tired too.  Skin on fire feeling, heart rate goes up much higher than normal, just laying around.  Inflammation.  Etc.  Etc.  But I typically don't get puking episodes.  It was rare, even with a stomach bug, that I'd throw up.  I think it might've happened a few times.  

There's been times in the last two years that I've eaten something, that made me feel awful, and I'd try and stick my fingers halfway down my esophagus (exxageration, but I really got it in there) and I could not make myself puke.  It's like the flap is too tight or something.  
Posted by: Ribbit, Monday, September 12, 2011, 2:58am; Reply: 117
Well, nausea has been such a part of my life for so long, I don't know what it is to be without it.  I blame it on the Lyme.  It's just a matter of degrees.

When I'm sitting there with my head hanging over the potty and I just can't get it to come, I imagine raw red meat.  That always does the trick.  I discovered that when I was pregnant with #3.
Posted by: Ribbit, Monday, September 12, 2011, 3:11am; Reply: 118
BTW, TJ, you had asked me if I'd herxed just being treated, before I even took supplements.  She used the Indigo (a frequency reader and generator) to not only read what I was dealing with, but to treat me as well.  I took one dose of the recommended stuff that night, and within hours I had a nasty headache and was vomiting.  I'm still nauseated and it's 5 days later.
Posted by: JJR, Monday, September 12, 2011, 4:01pm; Reply: 119
Wow.  I'll be praying for you still.  But hopefully it's all a good thing.  Killing it.  Are you weak also?  I'm so sorry Leanne.  

Last night I woke up with the sweats while sleeping.  Hopefully that was a good thing.  I think it usually means my body is fighting something off.  
Posted by: TJ, Wednesday, September 14, 2011, 1:48am; Reply: 120
Quoted from Ribbit
BTW, TJ, you had asked me if I'd herxed just being treated, before I even took supplements.  She used the Indigo (a frequency reader and generator) to not only read what I was dealing with, but to treat me as well.  I took one dose of the recommended stuff that night, and within hours I had a nasty headache and was vomiting.  I'm still nauseated and it's 5 days later.
Ouch!

We had somebody speak in church about getting answers to prayers, and she shared her experience with fatigue, dizziness, and brain fog (among others) and how she finally got the Lyme diagnosis after getting the usual "it's all in your head" treatment.  Lyme in Utah?  Who knew???
Posted by: JJR, Wednesday, September 14, 2011, 2:59pm; Reply: 121
I'm telling you, my motto is "2011, Year of the Lyme".
Posted by: Kim, Wednesday, September 14, 2011, 8:11pm; Reply: 122
I just hope the word gets out about Lyme disease.  I think there are a lot of people with health issues that don't consider that a nymph tick can bite you and you may become infected with Lyme or coinfections.  After all a nymph tick is as small as the period at the end of this sentence.

I have been under the radar for a week.  Trying some different medications to get pain under control.  So far, two of the drugs caused reactions and I had to stop them.  On to the third try today with a different drug.  Burning muscle pain has been the worst along with joints hurting. Pain makes sleeping very difficult.  I am treating myself to an infrared sauna to help with detox and pain.  Can't wait to get it.

Saw my rheumatologist today and he said to keep my gallbladder in.  He thinks it is just fine.  I am going to have another HIDA scan to satisfy the Lyme doctor.  Once I got past dieting, no more gallbladder pain at all.  I can eat fat all day and I do not have any issues with it.  That is as long as it is good fats, like ghee, nuts, olive oil, etc.  Still maintaining my weight.
Posted by: JJR, Wednesday, September 14, 2011, 10:45pm; Reply: 123
YEAH FOR NOT LOSING ANY BODY PARTS!!!!
Posted by: Kim, Thursday, September 15, 2011, 4:32pm; Reply: 124
You may look upon me with sheer pity
Because my illness is something you don't get...
But as long as I am here- it is still quite clear
GOD is not finished with me yet....

You may look down on me
And think I have come to the end of my rope
But I will do what I can- and as long as I can stand
I will always have hope....

You look at me - but you can't see
What purpose for my illness there could be
Even if when you can't comprehend- On this I still depend
That God still has plans for me

I don't count me out - that is not what faith is about
Even when things you don't understand
Sometimes you just have to believe, though it's hard to conceive
That my GOD has a better plan

author unknown
Posted by: JJR, Thursday, September 15, 2011, 8:57pm; Reply: 125
AMEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you for the poem!
Posted by: nowishow, Friday, September 16, 2011, 9:17pm; Reply: 126
I've been using a cream for about a week, recommended by my doctor to help with lymph blockage. He thought I had a blockage up around my neck. So I tried the cream (it's homeopathic) and within minutes my sinuses started draining and within 30 minutes the pain in my shoulders decreased. I thought the intense pain I've been having in my shoulders (mostly the left side) for the past six weeks was due to Lyme, but after using this cream for a week now I see that it was due to a Lymph blockage. I guess it's still due to Lyme indirectly. I had tried the same formula only as the drops about six months ago and got no help, that I could tell. It seemed Red Root did a much better job for me. But I have to say the cream form is fantastic! At least for me  :) Here's a link to a site that has free shipping.

http://shop.lwtinternational.com/product_p/itires%20ointment.htm
Posted by: Kim, Saturday, September 17, 2011, 12:14pm; Reply: 127
Quoted from nowishow
I've been using a cream for about a week, recommended by my doctor to help with lymph blockage. He thought I had a blockage up around my neck. So I tried the cream (it's homeopathic) and within minutes my sinuses started draining and within 30 minutes the pain in my shoulders decreased. I thought the intense pain I've been having in my shoulders (mostly the left side) for the past six weeks was due to Lyme, but after using this cream for a week now I see that it was due to a Lymph blockage. I guess it's still due to Lyme indirectly. I had tried the same formula only as the drops about six months ago and got no help, that I could tell. It seemed Red Root did a much better job for me. But I have to say the cream form is fantastic! At least for me  :) Here's a link to a site that has free shipping.

http://shop.lwtinternational.com/product_p/itires%20ointment.htm


What are the directions for using this?  I read the write up on the product but didn't see specific directions for using it.
Posted by: JJR, Saturday, September 17, 2011, 4:33pm; Reply: 128
Interesting!
Posted by: nowishow, Monday, September 19, 2011, 7:16pm; Reply: 129
Quoted from Kim


What are the directions for using this?  I read the write up on the product but didn't see specific directions for using it.


You rub it on the area of suspected blockage, twice a day. My doctor said I could rub it on 7-8 times a day if I liked. I had to cut back though it was draining things a little too fast and taxing the rest of my system. Areas on me that usually get blocked are: under my jaw (back by my ear), upper neck (next to the spine), around the collar bone on the left side, upper back (somewhat close to the spine), under my arms (close to my breast). These places get hard and swollen on me, so that would be something you could look for. The spleen area might be a great place too, if you have pain there. Lymph glands are all over the body and people have different places that gets blocked. I talked to a woman that has a spot near her knee that gives her trouble.

I hope this helps!
Posted by: nowishow, Tuesday, September 20, 2011, 10:49pm; Reply: 130
Something you may want to print for family and friends...

"But You Don't LOOK Sick..."

10 Commandments for interacting with the chronically ill

In the realm of chronic illness, one of our more challenging tasks can be
gaining support from others. As if finding a knowledgeable and caring doctor
wasn't difficult enough, finding caring and supportive friends to surround
ourselves with can be even more difficult.

Most people are simply not capable of understanding, unless they have the
misfortune of a chronic illness of their own.

How many of us have heard something along the lines of "But you don't LOOK
sick...?" It makes one wonder how a sick person is "supposed" to look.

If one were to hobble around on crutches, would their illness suddenly
become more believable?

Our society understands the visible, physical manifestations of illness,
such as a broken bone in a cast or hair loss from chemotherapy.

What many fail to grasp is the subtle, invisible manifestations of chronic
illness.

Symptoms such as pain, severe fatigue, and cognitive impairments are not
easily visible to the average observer, which means that sufferers of
chronic illness often look "just fine".

Our society is all about instant results - the mindset that we can just pop
a magic pill and all our troubles will go away.

When sufferers of a chronic illness do not quickly "get better", we are
often treated as if it were somehow our own fault.

We may even be told that we are "hypochondriacs" or that "it's all in our
head".

Remember when you had the flu? You were exhausted, achy all over, and could
hardly get out of bed. But, fortunately, the illness passed and you were
back to your old self and usual activities.

Now, imagine if you had never recovered from that flu. Every day, you wake
up achingly sore and as tired as if you had not slept at all. Imagine trying
to go through your usual activities while feeling this way.

Not only do work, school, and regular tasks of daily living become
near-impossible, but so do the smaller day-to-day things that so many take
for granted, such as simply washing your hair or paying the bills.

It is stressful, it is exhausting, it is depressing... and yet the
chronically-ill person continues on in the face of it all.

For those of you who may have, at some point, been the perpetrator of an
otherwise well-intentioned comment, please understand that our illness is
just as real as that of an amputee or other "visible" illness.

To help aid those of you who wonder how to interact with a chronically ill
person, allow me to present the Ten Commandments.

1. Thou Shalt Not Imply That We Are Not Truly Ill.

You will not convince us otherwise with remarks such as, "You LOOK good," or
"But you don't LOOK sick." Even if you meant them as compliments, we
perceive those kind of statements as insults because they imply that you do
not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.

People with chronic illnesses are persistent, if nothing else. We hang on,
day after day.

We see countless doctors, take numerous medications, do endless research,
and continue hoping that the answer is just around the next corner.

So please do not insult us by delivering diagnoses, remedies, or comments
such as, "Why don't you just..." or "Have you tried..." or "You should...."

If it truly were that simple, I assure you that we would have done it
already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.

We did not choose to become ill, just as we do not choose to stay ill.
Simply having a positive attitude is not going to solve our problem.

One would never imply that a quadriplegic chose such a trial for themselves,
or could get better "if they really wanted to". Please afford chronically
ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.

If people with chronic illnesses push ourselves too hard, we can suffer
serious consequences. Most of us have developed coping mechanisms to help us
survive, and it is cruel to expect us to do more than we are able.

One chronically-ill woman I know was actually told, "I wish I could have the
luxury of sleeping all day."

Believe me, we would much rather be out working, playing, spending time with
loved ones, participating in normal activities.

"Sleeping all day" is not a luxury for us - it is a critical necessity, one
that we must take in order to protect whatever remaining health we have.

Perhaps it may help to think of it in terms of being one of the medications
we need to take.

If you wouldn't think of denying a diabetic their insulin, then don't think
of denying the sufferer of a chronic illness their critical need, whether it
is a mid-day nap, avoidance of certain foods or environmental factors, or
something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.

Unless you have a chronic illness of your own, you cannot possibly
understand just how much suffering is happening.

Of course you want to be compassionate and want to relate to people. But
when you try to do this by telling a chronically-ill person that you are
always tired too, it tends to make the person feel that you are minimizing
their suffering.

Try saying something more along the lines of, "This must be so hard for
you," or "I can't imagine what you're going through." It really does make a
difference to us.

Posted by: nowishow, Tuesday, September 20, 2011, 10:50pm; Reply: 131
continued...

6. Thou Shalt Be Mindful Of Other Family Members.

Chronic illness doesn't just affect the person who has it, but the whole
family as well. The trauma of the illness can evoke feelings of fear,
depression, anger, and helplessness in all family members.

The balance of family dynamics will most likely change, especially if it is
a parent who is ill.

The healthy spouse may end up taking on an overwhelming amount of
responsibility, and even children will likely be involved in helping care
for the ailing family member.

Please keep these others in your thoughts as well, and make an effort to
direct some special attention to them, without any mention of illness or
disability.

Individual family members adjust in different ways and at different paces.

All members might benefit from counseling to help handle the stress
involved, and each family member also needs to have time to pursue their own
individual interests.

External support from friends, neighbors, extended family, religious
institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes
With Us.

For the chronically ill, any day that we can accomplish a task, no matter
how small, is a "good" day!

Our lives are often measured in terms of doctor's visits and lab work, and
our "success" measured by a rise in Natural Killer cell counts in our blood,
or actually completing an entire load of laundry in just one day.

Please do not look at us as if we are joking when we share these celebratory
moments with you. Celebrate with us, be happy with us, and do not kill the
moment by announcing that you just completed the Ironman Triathlon in record
time.

8. Thou Shalt Offer Thy Specific Help.

There are so many ways to help -- the most difficult part is usually getting
a chronically-ill person to accept that help. They do not want to feel like
a "burden".

If you offer a vague, "Call me if I can help," the call will probably never
come.

But if you are sincere, consider extending offers of specific help, such as
a ride to a doctor's appointment, or picking up a few groceries or the dry
cleaning.

These activities can be done in a way that does not add any extra burden to
your own schedule. If you have to go to the grocery store for your own
family, it really isn't much extra work to grab an additional loaf of bread
and jug of milk.

If you have to swing by the post office, getting an extra roll of stamps or
mailing an additional package isn't much extra effort for you - but it can
save a chronically-ill individual a lot of time, energy, and exacerbation of
symptoms.

9. Thou Shalt Remember Important Events.

I'm not just talking about birthdays and Christmas.

A major doctor's appointment, lab test, or new medication are all important
events to the chronically-ill person.

Try to sincerely ask, "How was your appointment? How did the lab test go?
How's your new medication?" The chronically-ill person will appreciate that
you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.

The illness may be a part of us, but it's not a part of who we ARE. We want
to be known as more than "that sick person".

You may discover that we have a wickedly funny sense of humor, a creative
imagination, musical talents, or any number of things that better describe
who we are, and what we would rather be remembered for.

(It makes for better gift ideas too -- rather than presenting us with yet
another self-help book on the power of positive thinking, now you can give
us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than
worthy of love, friendship, and support.

Most chronically-ill people I know are the toughest nuts I have ever met.
Indeed, I have come to believe that a chronic illness is not for wimps -
rather, only the toughest of the tough can continually face the struggles of
life while battling a debilitating disease.

That kind of grit deserves nothing less than pure respect and admiration,
even from our toughest critic -- ourselves.

From: http://www.anapsid.org/cnd/coping/looksick.html
Posted by: JJR, Thursday, September 22, 2011, 12:13am; Reply: 132
That was really good!!  Problem is, we need an abbreviated version for the people around us.  Because most people won't read all that.  I didn't even read every single word.  But it was a blessing.  


My spleen is acting up again and I feel that gummed up feeling at times.  I don't like that feeling at all.  My breathing gets a little heavy.  Yuck.  It's like a I need a good cleansing.  The Gal at my doctors office is saying I should get Oregon Grape root.  I probably said that already.  I didn't buy any yet.  

Anyone use that for lymph cleansing?

Posted by: Kim, Friday, September 23, 2011, 12:26pm; Reply: 133
If anyone is interested.....

Lyme Interview "LIVE" with Dr. Klinghardt - Holistic Lyme Doctor

Inviting all Patients and Practitioners:
Call in and listen!

Tuesday, Oct. 4th

5:00 pm PT
6:00 pm MT
7:00 pm Central
8:00 pm EST

Live questions and answers
with guest, Lyme Hope Advocate
Cheryl Young
Moderator: Dr. R
Spread the word, dont miss this one!

The Dr Klinghardt Academy is offering this event as support to all lyme patients and advocates with this special 1 1/2 hour time to listen and learn the latest treatments and practical guidelines for patients.

Practitioners, please offer this special "free event" to your patients who would like to be educated and cannot attend one of our conferences.

Dial-in Number: (712) 432-0900
Access Code: 964406
Posted by: JJR, Friday, September 23, 2011, 4:35pm; Reply: 134
Thank you!!!!
Posted by: JJR, Saturday, September 24, 2011, 3:52pm; Reply: 135
Do any of you have the changes in weather affect you?  It rained all last night and is supposed to be rainy for the next 4 days.  I woke up this morning feeling like I got hit by a mack truck.  I know the weather has a lot to do with it.  It seems like my body is at it's worst when the weather changes drastically.
Posted by: TJ, Saturday, September 24, 2011, 7:34pm; Reply: 136
It's probably a Nomad.

BTW, a Kenworth or International would probably hurt just as much. ;)
Posted by: ABJoe, Saturday, September 24, 2011, 8:24pm; Reply: 137
Quoted from JJR
Do any of you have the changes in weather affect you?

The only weather related issue that bothers me is heat.  It causes heavy detox, which causes the Mack Truck syndrome...  This summer seemed to be worse, probably because I was healing heavily in the cranial and spinal stem sections...  It seems like every nerve has been on red alert all summer.

Hope you feel better soon.   ;D
Posted by: TJ, Sunday, September 25, 2011, 12:52am; Reply: 138
Quoted from TJ
It's probably a Nomad.
Thing.  It's probably a Nomad thing. ::)
Posted by: JJR, Sunday, September 25, 2011, 8:19pm; Reply: 139
Yes, the book does state that.  It's supposed to rain here for like 5 days.  I did feel better later in the day yesterday, but it also got sunny.  I think my thyroid slows down or whatever, in this dark, rainy weather.  My feet are FREEZING!
Posted by: Kim, Tuesday, September 27, 2011, 7:08pm; Reply: 140
Just got back from a visit to our Lyme doctor.  They believe that my DH heart arrhythmia and other heart issues are lyme related.  he has to do B12 shots every week too.  

I am having a HIDA scan tomorrow to see how the gallbladder is doing.  No pain, so I expect the test result to be good.

Dr. Jemsek is amazing.  I am very lucky to have a doctor with so much lyme experience be in driving distance for me.
Posted by: nowishow, Tuesday, September 27, 2011, 10:02pm; Reply: 141
Quoted from Kim
They believe that my DH heart arrhythmia and other heart issues are lyme related.  he has to do B12 shots every week too.  



I have a lot of heart issues too. Does he have trouble laying flat? I have to sleep propped up or my heart starts beating hard and/or fast. It also feels like it vibrates.

I'm so happy you've got a great doctor. So many don't. I'm happy with mine, I feel very lucky.
Posted by: Ribbit, Wednesday, September 28, 2011, 3:01am; Reply: 142
I'm glad you get to see Dr. Jemsek, Kim.  I like what he has to say.

JJ, I chuckled when I read your post about weather changing.  I didn't put two and two together, but Rob did.  There was one day a few weeks ago that it was 80 degrees instead of 98, and I had on long jeans, a jacket and socks.  I was cold!  And then every time it rains, my entire body hurts.  I have to wrap up in extra clothes because I feel so cold even if it's not cold.  Rob pointed it out to me, that when it rains I hurt.  80 degrees is comfortable to me, but not when it's suddenly 80 after it's been close to 100.  It takes me a while to adjust to the changes in temperature.  I assume it's a thyroid thing, but maybe it's a Lyme thing.  Come to think of it, I've begun to blame my underactive thyroid (and underactive everything else) on the Lyme.  I see it all as symptoms now.

The opposite is true too.  In the spring, when the weather is suddenly 65 after it's been 30, I'm extremely hot.  It takes me a few weeks to adjust to the difference before I can feel comfortable.

The thermostat in the living room will stay the same, but suddenly I feel very different.  I don't know if it's pressure changes or humidity changes, but either way it bothers me a lot.
Posted by: JJR, Wednesday, September 28, 2011, 4:41pm; Reply: 143
That's what happened to me this year Ribbit!!!!!!!!!!!!!!  As soon as we had the warm weather, I got hot and then it was like my body went into killing mode, and I felt awful.  But it wasn't doing a good job killing.  Etc.  I get the fevers in the afternoon in the summer more.  Two years now it's been like that.  And then yeah, when it rains I feel worse.  Or moreso just the change.  It's been raining for 5 days now.  And thank the LORD, I don't feel awful through the whole thing.  But that first morning, I thought somebody slapped me upside the head when I got up.  You know?

Now I show and Kim, I have heart issues.  An arrhythmia and then I was diagnosed with POTS.  POTS is a neurological problem that when changing positions, and what not, my vessels don't constrict properly.  Causing low BP.  And my BP is low all the time.  But that might be from adrenals.  And I get what's called an accelerated junctional rhythm.  I think it's a type of SVT.  Not A fib.  I haven't gotten it in a while, but I don't push myself.  Because it happens when my heart rate is high.  But yeah, I'm thinking it's from the lyme.  And lyme can go somewhere else.  Stupid junk.  Oh well.  All we can do is soldier on.  

Any of you get night sweats?  That's another neurological test I failed at mayo (I've probably said this, so sorry) but I don't sweat well.  But then at night, there are times I'll wake up and be soaking wet.  I think it's when I'm fighting something.  Because the other night I went to bed and my throat was starting to tickle.  Like I was getting a soar throat.  And I woke up that night all sweaty.  And I never really did get a soar throat.  Thank God again.  I think the homeopath I'm on is really helping.  Well, I know it's helping to some degree.  But my spleen still goes up and down with pain.  Some days are worse than others.
Posted by: Kim, Wednesday, September 28, 2011, 5:23pm; Reply: 144
JJ   Sweats and chills are a symptom of coinfections.  I and my DH get them all the time.  

I am supposed to get a brain spect scan. Still trying to figure out codes to get the insurance to cover it. I had the HIDA scan this morning.  It is hard to lay still for 90 minutes.  Glad that is over.  
Posted by: JJR, Wednesday, September 28, 2011, 8:50pm; Reply: 145
Wow.  Let us know how it goes if you feel led to.  

Well, I would imagine it's my bodies defense.  But yeah, it might be fighting some kind of coinfection.
Posted by: JJR, Wednesday, September 28, 2011, 8:51pm; Reply: 146
Quoted from TJ
It's probably a Nomad.

BTW, a Kenworth or International would probably hurt just as much. ;)


And btw TJ, this made me laugh.  How about a Mitsubishi Fuso?  I drove one for a while at my cabinet installation job.  Not quite as heavy though.  hehehehe
Posted by: Ribbit, Thursday, September 29, 2011, 12:54am; Reply: 147
Last summer (when I was at my sickest) I was running low grade fevers nearly every afternoon.  I woke up every single night sweating.  I thought it was this silly early menopause thing until I read that it was a symptom of Lyme (or co-infections or whatever--I don't differentiate).  What I get now is waking up at night feeling like my whole body is trembling.  It's not, but it feels like it is.  I thought it might be a reaction to my liver processing my evening wine, but I went about two weeks without any wine just to experiment, and I still woke up feeling like that.
Posted by: JJR, Thursday, September 29, 2011, 4:27pm; Reply: 148
Ugh.   That doesn't sound like fun.

I have entered into a detox session.  It's been a while, so I'm not surprised.  I don't like them at all though.  I feel like I just want to lay around.  

Here's the thing that is really frustrating.  These things always happen when I'm at the top of my game.  I had just started to feel like, wow, things are going pretty good.  And I swear, every time that thought enters my head, I get knocked down.  It's probably all part of the healing process though.  

My Doctor's assistant is telling me I really need to clean my lymph system out.  That's what she believes is my problem at this point.  I'm supposed to put some lemongrass oil on my lymphs today.  Inflammation isn't horrible right now, but it's there.  That's how I detox.  I get inflammed and then my heart rate goes up and I feel like all I should do is lay around.  Oh well.  I know I'm not the only one struggling.  What seemed to kick it off is I went down into my basement yesterday and got something.  And then came back up and I just didn't feel well.  I haven't gone up and down stairs too much lately.  And I avoid going down in my basement.  I just seems like the air quality isn't as good down there.  We've had it checked for mold and we got a clean bill of health for it, but it still always smells a little off.  I don't think this weather is helping any either.  It's been rainy and stormy for a week now.  Almost.  And that probably isn't good for mold in the air.  My son's asthma is kicking up too.  The leaves are falling.  I think it all coincides.  More toxins in the air, body feeling good, ready to do some cleansing.  Change in weather.  Etc etc.  But I was enjoying more energy and getting things done around here.  It's frustrating.

Does this happen to you guys?  When you feel like things are going really well, then it's like the hammer drops as soon as you think that?
Posted by: Ribbit, Thursday, September 29, 2011, 5:01pm; Reply: 149
It used to be that way for me, but I've leveled off.  Managing energy, rather than time, has helped with the extremes of up and down.
Posted by: ABJoe, Thursday, September 29, 2011, 5:11pm; Reply: 150
Quoted from JJR
Here's the thing that is really frustrating.  These things always happen when I'm at the top of my game.  I had just started to feel like, wow, things are going pretty good.  And I swear, every time that thought enters my head, I get knocked down.  It's probably all part of the healing process though.

This is the way it always was for me when I was too weak to do continuous cleaning...  For about the last 3 or 4 months, I have just felt like doo most of the time, but the cleaning, etc. has been going at a faster rate and much more responsive to supplementation and diet.  I have finally gotten to a point of reasonable feedback times, meaning that I have an issue, add a food or supplement to aid and have it work and move on...  For a long time, it took a long time for the issue to resolve and for me to feel better - clear enough of the junk out from the last detox session, that I was ready for a new dose of garbage to be removed from storage into the bloodstream.  Exercise stimulates the detox sessions very well...

All I can say is continue fighting the fight, as long as you are detoxing and healing, you are moving forward, in spite of how it feels.
Posted by: Ribbit, Thursday, September 29, 2011, 5:18pm; Reply: 151
Joe, you are always so encouraging.  I'm glad you're a part of this group.
Posted by: JJR, Thursday, September 29, 2011, 6:18pm; Reply: 152
Yes, times 700 zillion.  I got tears in my eyes.  What a blessing.  Thank you Joe.  I'm trying to have joy in the midst of pain, and give my suffering to God.  In fact, I am memorizing a verse that says rejoice in our suffering.  Romans 5:3  "More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character, and character produces hope.  And hope does not put us to shame, because God's love has been poured into our hearts......"   That's as far as I know.

Anways, Joe, your Character is so welcomed and your words bring me HOPE.  Along with God's love.  But I think God sends us people that help us.  I just hope I can turn around and help others too.  Thank you guys.  

I am doing a little better this morning than yesterday afternoon.  Hopefully it will taper off, as I was planning on going to a Wedding this Saturday.  When I enter into these detox sessions, it's always tentative because I don't know how long they'll last.  

Hey Joe, have you been eating lemons or drinking lemon water lately?  I have to try it again.  It was upsetting my stomach for a while.
Posted by: ABJoe, Thursday, September 29, 2011, 8:17pm; Reply: 153
Quoted from JJR
Hopefully it will taper off, as I was planning on going to a Wedding this Saturday.  When I enter into these detox sessions, it's always tentative because I don't know how long they'll last.  

Hey Joe, have you been eating lemons or drinking lemon water lately?  I have to try it again.  It was upsetting my stomach for a while.

One problem I have is that I can work through any level of pain, if something is pressing enough.  It is just that my mood and temperament suffer some, but the adrenal glands really take a hit.  I have had to make a conscious effort to shut down when the body hurts, so it can catch up.

No, I haven't been taking any citrus during the summer.  Several reasons: 1) I have been focusing on the liver, where the malic acid in apple juice is helpful; 2) figs, watermelon and canteloupe have been in season and I was eating quite a few of them; 3) I ran out of frozen lime juice.
Posted by: JJR, Thursday, September 29, 2011, 9:31pm; Reply: 154
I should get some apple juice myself.  I ate an apple yesterday and wondering if it helped me kick into detox.  I've only been eating the green apples.  But I thought lemons help the liver detox also.  No?  Does watermelon help the liver?  I know it helps the kidneys.  Or I thought it did.  
Posted by: Mark, Thursday, September 29, 2011, 9:41pm; Reply: 155
There's a lot of marketing, but I hope some of you find benefit from listening to this interview.

http://www.thebestdayever.com/news/podcast/podcast-89-david-wolfe-and-truth-calkins/
Posted by: nowishow, Thursday, September 29, 2011, 11:07pm; Reply: 156
Quoted from JJR


Does this happen to you guys?  When you feel like things are going really well, then it's like the hammer drops as soon as you think that?


Absolutely! I'm pretty used to it by now. So when I feel good I try to get everything done that I haven't been able to do because I know pretty soon I'll be down again.  :(
Posted by: ABJoe, Thursday, September 29, 2011, 11:27pm; Reply: 157
Quoted from JJR
But I thought lemons help the liver detox also.  No?  Does watermelon help the liver?  I know it helps the kidneys.  Or I thought it did.  

It all helps...  Lemon / lime juice is good, but so is a variety.  My tangerines are just starting to ripen, so I'll be eating them for a while, as well...  

One of the issues I fight is keeping hydrated, even with all of the water, etc. I drink - it helps me to get a lot of vegetables / fruit / juice.  If I don't get enough melon juice, I run short of spinal fluid - and it feels / sounds really weird when there isn't enough.  It is like a swishing heartbeat but isn't the same beat or synchronized with the heartbeat...  
Posted by: Chloe, Friday, September 30, 2011, 12:44am; Reply: 158
Quoted from Mark
There's a lot of marketing, but I hope some of you find benefit from listening to this interview.

http://www.thebestdayever.com/news/podcast/podcast-89-david-wolfe-and-truth-calkins/


Thanks so much for sharing this Mark....I learned a lot! :)

Posted by: TJ, Friday, September 30, 2011, 1:20am; Reply: 159
About the weather and temperature changes, I thought it was just a B thing for me.  Taking l-arginine certainly helps.  I hadn't considered the possibility that it was Lyme-related.

Quoted from JJR
Does this happen to you guys?  When you feel like things are going really well, then it's like the hammer drops as soon as you think that?
Quoted from Ribbit
It used to be that way for me, but I've leveled off.  Managing energy, rather than time, has helped with the extremes of up and down.
Totally, this is helping me, too.  My default is to have a "self-discipline" mindset: this is what I want to do, this is the schedule I'm going to follow, and I'm going to stick to it.  And I do, for a couple of weeks, until I burn out.

I caught myself this time.  I started going back to the gym.  I wanted to work myself up to Mon, Tues, Thurs, and Fri mornings.  I started at Mon, Wed, Fri.  The last two Wednesdays I got up feeling run-down.  I knew if I went to the gym it would be hard to get through work that day, so I just went out for a walk instead.  I'm getting the hang of energy management, and the fact that I've been working full-time for three months is evidence not only of my healing progress but of my growing ability to pace myself.  Still, it is nice when I don't have to pace myself so strictly.

Can I just say, Genoma Security FTW!  I can't put my finger on what it's doing, but it just feels right.  I'm learning more and more to just listen to and trust what my body is telling me, regardless of what seems logical.
Posted by: JJR, Friday, September 30, 2011, 3:47pm; Reply: 160
Well for me, there hasn't been a whole lot of energy to manage.  Spring was terrible.  I could barely do anything.  During the summer I got better though and what I do is keep the kitchen going, keeping up with the dishes and cooking.  And there wasn't a whole lot more after that.  I'd do some stretching when things were good.  Every other day I'd do some exercises.  I started to get to the point that I could go to the store, although I never did a long shopping session.  But about a week and a half ago I went to the supermarket with my daughter, went to my bank, and was looking for the magazine rack.  I was fine with that.  So I was starting to work back into some semblance of strength.  

Now, ugh.  I'm achey.  Right before I went to bed last night, I think something I ate didn't sit quite right and I felt like everything was all wrong.  But I think it's just a combination of this time of the year.  The leave are turning around us.  And my son's asthma is real bad.  That's usually when I feel pretty lousy too.

Leanne, I thought of something.  I wonder if you didn't get handed the lyme thing from your mother.  Didn't you say she feels awful every spring and fall?????  And we had a dry summer, well later in the summer, and that's when I felt the best also.  When things were real dry.  I think the rain is supposed to be done for us for now, but it rained for days, the leaves are turning, and fall is here.  It seems early too.  A good frost usually helps, but it could be a long time off.  
Posted by: ABJoe, Friday, September 30, 2011, 4:07pm; Reply: 161
Quoted from JJR
Now, ugh.  I'm achey.  Right before I went to bed last night, I think something I ate didn't sit quite right and I felt like everything was all wrong.  But I think it's just a combination of this time of the year.  The leave are turning around us.  And my son's asthma is real bad.  That's usually when I feel pretty lousy too.

You may have a problem with more humidity, or there may be more fungi in the air to help dispose of all of the leaves, etc...  This along with the internal happenings is a heavier load...  Just keep working through it.  All of the elimination channels (lymph, liver, gut, kidneys) all have to be working together in balance to clean out all of the junk.  As long as you keep boosting the worst, pretty soon they will all be working, and you may not have much energy for a while.  Its OK.  Be patient and give the body time to heal.  With all of our pushing and frustration, we aren't going to speed it up any more...
Posted by: JJR, Friday, September 30, 2011, 6:08pm; Reply: 162
Thank you Joe.  Yeah, that's how I understand it too.  It does seem like the more humidity, the worse things are.  Which is probably mold and what not.  My legs have been aching ever since that day I went up and down the stairs.  Which is strange because it hasn't been like that the other times I went up and down the stairs.  Plus my back is achey and my head.  So, I think it's like you said, overloaded with other junk.  It's what happened last year too.  I used to love this time of year.  Although I do remember getting "colds" quite a bit in fall.  Ones that would last a long time.  I remember one year, this is a long time ago before all of my problems, I pretty much lost my voice.  

My Dad thinks he's been fighting a cold, but him too, every year it's the same at the change of seasons.  He's hacking and has excess junk.  I'm sure there is much about this in the DNA.  He doesn't seem to struggle as much as I do, but I don't think he has lyme's disease either.  And mine isn't congestion, as much.  There is some, but it seems more internal.  

Have your seasons started to change out there yet?
Posted by: ABJoe, Friday, September 30, 2011, 6:31pm; Reply: 163
Quoted from JJR
Have your seasons started to change out there yet?

What?  In sunny So. CA? Our season is sunny and warm, with a little marine layer...  What time the marine layer burns off is the biggest question we have, except when the wind turns around and blows from the East, blowing all of the hot desert air over us beach dwellers... ;)   ;D

Ok, enough of the humor...
The change is much more subtle here, but we did notice a bit of chill in the air for two nights.  I took that as a cue to cover the attic vent for the winter, but then this week is rather warm again...  It rarely freezes at our house, so I usually have citrus fruit fresh on the tree until late January (or later, depending on how much theft and how large the crop was initially).
Posted by: Chloe, Friday, September 30, 2011, 6:53pm; Reply: 164
I don't do well in humid weather either and it can be fungal... but my traditionally trained Chinese Acupuncturist called it a "damp" condition.  Sometimes you need to eat differently if dampness is problematic.  THis might
resonate (or not).  Just thought I'd share it.

http://www.amazinghealing.com/aiyana.php?nav=5&article_id=13

Sometimes when my body is achy, I'm not drinking enough water to get rid of toxicity.

You might want to try drinking more fluids today. :)
Posted by: nowishow, Friday, September 30, 2011, 6:56pm; Reply: 165
Quoted from ABJoe

If I don't get enough melon juice, I run short of spinal fluid - and it feels / sounds really weird when there isn't enough.  It is like a swishing heartbeat but isn't the same beat or synchronized with the heartbeat...  


This fascinates me, can you tell me more about this? I've never heard/felt anything like that and I'm quite sensitive.
Posted by: nowishow, Friday, September 30, 2011, 8:42pm; Reply: 166
Quoted from Chloe
I don't do well in humid weather either and it can be fungal... but my traditionally trained Chinese Acupuncturist called it a "damp" condition.  Sometimes you need to eat differently if dampness is problematic.  THis might
resonate (or not).  Just thought I'd share it.

http://www.amazinghealing.com/aiyana.php?nav=5&article_id=13

:)


Thanks I enjoyed this  :)
Posted by: JJR, Friday, September 30, 2011, 9:21pm; Reply: 167
Yeah, me too.  I too have been feeling like I need to eat more warmed foods lately.  I typically eat a salad every day, but I think I'm going to stop that.  Or at least put hot stuff over the leaves.  Most of the time, when I eat a salad, everything is cold on it.  Canned meat, some frozen peas maybe.  I need to start cooking the stuff that goes on it, that might help.  I do think the lettuce is good for me, to keep things moving.  

But this is a very good thing that you gave us Chloe.  I eat some of those foods on the warming list.  But you know, last night, I ate a few roasted peanuts before bed, and I swear they made me feel lousy.  And this explains maybe why.  I'm pretty sure I have this condition, as I'm not active.  I used to be more active, but since last fall, it's been tough.  I go up and down with it.  Last winter I was getting more active, feeling well, and then the weather change in spring knocked me down.  And then vice versa obviously.  I've said that a million times.  

But this may help me while I'm getting back up again!
Posted by: ABJoe, Friday, September 30, 2011, 10:19pm; Reply: 168
Quoted from nowishow
This fascinates me, can you tell me more about this? I've never heard/felt anything like that and I'm quite sensitive.

I can't tell you much more...  My practitioner told me one day that I was somewhat dehydrated of spinal fluid.  The sensation I described above is the best I can put it...  I described it to the practitioner and she agreed that it was about how it is.  She said she has been in the same condition several times...  She told me that I needed to re-hydrate and the best way was to eat fruit or drink the juice.

Posted by: Chloe, Saturday, October 1, 2011, 12:10am; Reply: 169
Quoted from ABJoe

I can't tell you much more...  My practitioner told me one day that I was somewhat dehydrated of spinal fluid.  The sensation I described above is the best I can put it...  I described it to the practitioner and she agreed that it was about how it is.  She said she has been in the same condition several times...  She told me that I needed to re-hydrate and the best way was to eat fruit or drink the juice.



I thought this was interesting....regarding hydration

http://www.dailymail.co.uk/health/article-1200531/The-vegetables-hydrate-glass-water.html

Posted by: ABJoe, Saturday, October 1, 2011, 3:59pm; Reply: 170
Quoted from Chloe

Thanks for posting that link, although I've read that article before...  It is basically why I vary the fruits, vegetables / juices that I get...  I get a variety of nutrients plus the hydrating effects.
Posted by: Kim, Saturday, October 1, 2011, 5:44pm; Reply: 171
I got the results of my HIDA scan for my gallbladder.  Ejection fraction went from 26% to 5% in the past three years.  So, it is obvious my gallbladder is diseased.  

Most of the females on my mother's side have had theirs out, but my doctor said that about 70% of lyme patients lose their gallbladder to the sprirochetes.  

I am calling a general surgeon on Monday and scheduling it to be taken out laparoscopically.  

My DH will take care of me after the surgery, but I am going to starve, because he can't cook.  Hopefully this will not require a night in the hospital.  There isn't anything there I can eat for sure! :o
Posted by: deblynn3, Saturday, October 1, 2011, 6:41pm; Reply: 172
Quoted from Kim
I got the results of my HIDA scan for my gallbladder.  Ejection fraction went from 26% to 5% in the past three years.  So, it is obvious my gallbladder is diseased.  

Most of the females on my mother's side have had theirs out, but my doctor said that about 70% of lyme patients lose their gallbladder to the sprirochetes.  

I am calling a general surgeon on Monday and scheduling it to be taken out laparoscopically.  

My DH will take care of me after the surgery, but I am going to starve, because he can't cook.  Hopefully this will not require a night in the hospital.  There isn't anything there I can eat for sure! :o


Best wishes, Hope all go well.
just a thought but maybe you might what to look into the protocol for surgery, etc. You might already have. I just wanted to remind you while you have a little time to build up your body.
Posted by: Chloe, Saturday, October 1, 2011, 7:40pm; Reply: 173
KIm, I'm sorry to hear you require gall bladder surgery.  :( Perhaps cook and freeze some dinners for
when your DH will be caring for you...All he'd have to do is reheat.

Wishing you best of luck...and better health :)
Posted by: JJR, Saturday, October 1, 2011, 11:22pm; Reply: 174
Ugh.  I'm sorry to hear this.  Did you try the artichoke?

If it makes you feel any better, I'm feeling lousy today.  My BP was super low this morning and I was all tingly and weird feeling.  I thought I was on the verge of passing out.  And my wife was going to a wedding and I told her to come back.  Poor thing.  So we ran to the store and got some good new zealand lamb to see if that would help.  I'm pretty sure it did, but now I feel the opposite.  I'm achey and almost feel like I'm getting feverish.  It did raise my BP quite a bit though.  

When I get like this, I get like, ugh, what else to I need to do, I get antsy.  Like I'm not doing enough, not trying hard enough.  Not going to the right doctors.  I hate this body, well, I hate what this bacteria, or whatever you want to call it, has done to my body.  

But, to every downside there is an upside.  I like where I am spiritually.  I keep getting closer to God.  Something like this will do that to you.  And in the end, it's all up to him as to what he wants to do with me.  It's finding that balance of my input and his provision that I struggle with.  And being peaceful during the storm.  And then there's the whole thing about if I get bad enough, going to the hospital is futile.  They don't know Jack.  So, it's good to go if you feel like something is on the verge of failure or something, but the only thing they're good for is to tell you you're not dieing.  I suppose.  Well, they're good for more than that, but you get what I mean.  Anyways.  

I'll pray for all of our strength.
Posted by: Kim, Sunday, October 2, 2011, 6:36pm; Reply: 175
I am doing the artichoke but I am not in pain.  A low ejection fraction like that suggests that the gallbladder isn't squeezing and emptying properly.  The Gastro doctor said that HIDA scans are controversial.  She can see someone like me with a 5% ejection fraction with no symptoms, and have someone else with a higher ejection fraction near normal with all kinds of pain.

My DH wants me to wait and speak to my Lyme doctor before scheduling surgery. I am going to call my ND tomorrow for his opinion on it.
Posted by: JJR, Sunday, October 2, 2011, 6:41pm; Reply: 176
Yeah, I'd definitely get another opinion before removing anything.  It is my opinion that the body is an amazing resilient piece of work.  What percentage may be now, might not necessarily constitute what it could be in the future.  Damage is not always final or reversible.  In my humble opinion.  But, having said that, I don't have anything to back that up scientifically.  And it's a hope that I myself probably question at times.  But really have no clue.  Yet, it's ultimately how I feel.  
Posted by: Chloe, Sunday, October 2, 2011, 6:59pm; Reply: 177
Quoted from JJR
It is my opinion that the body is an amazing resilient piece of work.


My opinion too. :)

Posted by: ABJoe, Sunday, October 2, 2011, 7:36pm; Reply: 178
Quoted from JJR
Yeah, I'd definitely get another opinion before removing anything.  It is my opinion that the body is an amazing resilient piece of work.  What percentage may be now, might not necessarily constitute what it could be in the future.  Damage is not always final or reversible.

I'm definitely not for removing the gall bladder.  I've seen how it messes up the digestion process to be without it.  I think it would have to be ruptured for me to authorize removal because as long as it is in, the body has the opportunity to heal it.  

Surgery is going to be one more thing to have to heal from, along with any toxins - anesthetics, IV avoids, etc. introduced during prep or the surgery / recovery...
Posted by: JJR, Sunday, October 2, 2011, 10:34pm; Reply: 179
I should've said, "irreversible".  I was thinking exactly what Joe said.  It would have to be exploded or something and detrimental to my life if I left it in.  But I would think any function is better than none.
Posted by: Kim, Monday, October 3, 2011, 7:24pm; Reply: 180
It isn't that cut and dry when you have Lyme disease.  If the gallbladder has lots of inflammation, it adds to the immune system problems and makes Lyme treatment extremely difficult.  

Testing, can show stones, blockages, sometimes thickening, but it doesn't always show sludge or disease.  Some people with really diseased gallbladders don't even have symptoms.  Leaving a diseased organ in your body can't be good either.  

The spirochetes get in there, and I am told that it is difficult for antibiotics to penetrate the gallbladder.  

I have had a fair amount of gallbladder pain in the past 4 years.  Since using swami, it has only happened once.  I don't have pain now, but that doesn't mean that my gallbladder isn't diseased.  If it isn't squeezing to realease bile as I eat, then it isn't doing a lot for digestion either.  The question is, will I be worse off without it.  Not everyone feels better after they have their gallbladder out.
Posted by: ABJoe, Monday, October 3, 2011, 11:54pm; Reply: 181
Quoted from Kim
The question is, will I be worse off without it.

This is something that you never will know.  My tendency is to keep it if it is functioning at all, understanding that it may or may not delay healing of the rest of the body...
  
If you take it out, you won't know if it might have healed.  Only you will know if you feel better with it out, but won't be able to tell until you have healed from the surgery.

If you leave it in and go through some time and it still doesn't get any better, you can still make the decision to get it removed, but you won't know if it slowed healing progress during that time.

If you leave it in and it heals along with the rest of the body, then you will be thankful that it is there - although again, you won't know if it shortened or extended the healing time or by how much...

The best you can do is make a decision based on the input you have and move forward.  I wish you the best no matter what you decide to do because it is your decision, not mine.
Posted by: JJR, Tuesday, October 4, 2011, 1:20am; Reply: 182
Kim, from what I understand, and you can correct me if I'm wrong, the spirochetes can get into any organ.  Your Brain, liver, spleen, heart, etc etc.  Yet, I don't think I'd want to remove my liver, just because I knew it wasn't functioning as well as it could be without the spirochetes wreaking havoc.  That's just my simple mind working.  I realize that people live without their gallbladder, but I would be concerned as to how, and how well.  A gal in our church has hers removed, and I don't think it has hurt her severely.  But I think she is much more sensitive to foods now.  Which, doesn't seem like all that terrible to me, because I already am.  But, she doesn't have any other huge problems that I know of.  She is overweight, but I'm not sure if that's a symptom of having your gallbladder out or not.  That's the only person I know with theirs gone.

I just think it has a chance to turn itself around.  That's my point.  But I'm not a doctor, and I could be wrong.
Posted by: Chloe, Tuesday, October 4, 2011, 1:47am; Reply: 183
http://www.forresthealth.com/UNDA-Number/

http://www.rockwellnutrition.com/unda-1-by-unda-seroyal.html

Unda numbers, homeopathic remedies designed for drainage of organs.
Posted by: JJR, Tuesday, October 4, 2011, 3:46pm; Reply: 184
Chloe, have you used those?

I don't know if I ever heard your story Chloe.  Leanne told me you were the one that encouraged her to look into this lyme thing more.  And she encouraged me more.  So, I'm grateful to you.  

Is there anything that you did that made significant impacts in killing this, off the top of your head?  Or are they too numerous too mention?  Maybe some of both.  I apologize if I'd be making you repeat yourself.  This thread is long enough that I don't remember what you all said.  Or if you did say a lot, what page was it?  Have you blogged about your experience?
Posted by: Ribbit, Wednesday, October 5, 2011, 6:03pm; Reply: 185
She wrote about it some on my old thread about my ER trip, which is where I became convinced that's what I had.  And evidently we'd talked about it before, but I couldn't remember it because, well, that's the nature of the beast.

I have a question about healing crises.  Joe--this one's for you.  I've been eating at least one large clove of raw garlic a day.  My stomach hurts for a couple of hours after I eat it.  My tendency would be to avoid raw garlic.  But maybe, just maybe, it's actually doing me some good and I should keep it up.  I guess I've learned over the years to avoid anything that causes pain (emotional or physical), but if it kills something bad in my body, I'm willing to keep it up.  Would you call a stomach ache from garlic a healing crisis?

I also have another thought.  I had thought that every time my skin gets really bad it must be because I ate something wrong or I'm having a flare-up of some sort.  It's taken several years to notice patterns, but what I'm seeing is there are several things that go hand in hand for me: depression, migraine, paranoia, bloating, brain fog and skin boils.  I'm still having these problems occasionally despite my extreme avoidance of nightshade plants which I know for a fact cause it.  I noticed after this last episode that when things started clearing up, I started feeling really good!  I'm able to think clearly and calmly and I'm even cleaning out my closet/bedroom because it's needed it for a long time.  I tend to wonder around in circles, not being able to put a finger on the reasons for my frustrations, and now I can see it all clearly.  I haven't organized efficiently because I haven't had time or energy, and I couldn't even think well enough to see it before.  I don't know how long it'll last. I unloaded on JJ the other night on the phone and really it was just a last straw---I felt like the whole world was crumbling around me.  Now I feel much better and my skin is clearing back up and my face isn't puffy like it's been for a couple of weeks.  It's always associated with a migraine.....Like I almost *needed* to get sick so I could feel better.  Does that make any sense?  Kind of like when I run a fever.  It's rare I run one, because my body temp is low.  But when I can manage to get a little one, I feel so good afterwords!  It burns off all sorts of junk I've accumulated.  I guess I'm beginning to see times of bottoming out as healing rather than getting worse.  My neighbor, who is unofficially counseling me, asked me last week if my skin breaks out when I'm emotionally upset.  It had never occurred to me because I squash emotions partly because I don't know how to deal with them and partly because I don't have the time or the patience to sort through stuff.  But he'd asked me some questions that provoked me to look through a box of stuff I'd stashed away ten years ago, and just being reminded about things (or accidentally reading stuff that I'd never read in the first place--stressful e-mails I'd printed but not read)...it made me feel for the rest of the day like I was going to throw up and I was having trouble even talking to him (the neighbor).  Couldn't complete sentences and all that.  But his question about my skin breaking out when I'm emotionally stressed made me start wondering if it's all tied up together.
Posted by: Kim, Wednesday, October 5, 2011, 6:58pm; Reply: 186
Quoted from JJR
Kim, from what I understand, and you can correct me if I'm wrong, the spirochetes can get into any organ.  Your Brain, liver, spleen, heart, etc etc.  Yet, I don't think I'd want to remove my liver, just because I knew it wasn't functioning as well as it could be without the spirochetes wreaking havoc.  

I just think it has a chance to turn itself around.  That's my point.  But I'm not a doctor, and I could be wrong.


The spirochetes can get into any organ but they are extremely difficult to treat in the gallbladder.  For some reason, the drugs don't penetrate that organ well and that is why many, many lyme patients lose their gallbladder.  Some people do fine when having it out, but others have a problem with diarrhea when they eat any fats and the urgency can be immediate.

I am hanging onto my gallbladder until my next appt on the 25th and then will see if I can duke it out with the lyme doctor.  

I would probably be in pain if not for swami.  I can eat fat all day with no pain.  

I am going to check out some of the links Chloe posted.
Posted by: Ribbit, Thursday, October 6, 2011, 2:02am; Reply: 187
I have a question about fats.  I don't have diarrhea from eating fats, but I'm becoming convinced that animal fat (with the exception of ghee) causes my skin to be excessively oily.  I've quit eating meat except the occasional fish and very occasional bite of turkey.  Oven roasted I can handle (I eat it maybe once a month).  Ground turkey I cannot, perhaps because when it's roasted the fat drips out for the most part.  Is the inability to process fat (so it comes out my skin) caused by a gallbladder problem?  Again, fat doesn't affect my digestive system.  (I also avoid meat because it causes my digestive system to grind to a screeching halt, but that's because I have pretty severe pelvic organ prolapse....possibly because of Lyme, since my connective tissues are weak.)
Posted by: Ribbit, Thursday, October 6, 2011, 2:11am; Reply: 188
I have one more thing to add to the post about my skin break-outs.

My husband reminded me that I'd thought garlic and  onions used to be a problem for me.  He said I used to complain that, eaten raw, they made my skin smell like sulfur.  In fact, I'd quit eating both of them for a period of several months (a few years ago) because I started wondering if they were causing my skin to break out too.

So he said, "When did you get this last break-out?" (He's been out of town.)  "About four days ago," I answered.  "How long have you been doing this raw-clove-of-garlic-a-day thing?" he asked.  "Less than a week?  Maybe about a week?" I answered.

That leads me to another thought then.  Maybe raw garlic does cause skin issues--but maybe that's a good thing!  Maybe it's cleaning out something inside that shouldn't be there, causing it to die off and come through my skin.

Here's something else to make you wrinkle your brow:  I've written before about how when I go through a detox session (aka herx), a mole or two on my right arm will bubble up, itch, turn into a scab, flake off and leave a scar.  One ND I saw, when this happened, said, "Yes, many  moles are viral, just like warts.  If you kill the viruses, they can go away."  So every couple of years without warning, a mole on my right arm will do it again. I have little scars up and down my right arm that have gone through that process.  Cool, huh?  I'd never heard of anybody losing a mole because they detoxed.  So anyway, with this skin break-out this past week, a big mole on the back of my left arm, that's been there for as long as I can remember, bubbled up and today a patch scratched off.  Underneath is new, clean, pink skin.  Yes, folks, I'm not going to think of skin break-outs as bad and "sick" anymore.  I'm going to start thinking of them as my body cleaning itself out of viruses and bacteria that it can't get rid of any other way.  This is the first time I've lost one on my left arm.  
Posted by: JJR, Thursday, October 6, 2011, 2:12am; Reply: 189
Kim, I think it's good to ask the lyme doctor what he thinks about it.  

Ribbit, I'm thankful that I could be there for you.  God is good and I was blessed by the conversation.  There is a lot in your question, and I'll leave Joe to answer his wisdom.  All I wanted to add was I always feel better the next day after having a fever, and secondly, I am tromping through the emotional also.  I do it a little here and there, reading things, etc, trying to uncover past hurts, or whatever.  I know there is a component, as I struggle with fear.  But then again, being really sick can make you fearful, no matter who you are.  Of course I notice that some people are more prone to it than others.  But I know I had a hard childhood, with my Dad being an alcoholic and what not.  But I'm thinking nobodies childhood was a walk in the park.  But maybe some people were more blessed and cared for than others?  I don't know.
Posted by: JJR, Thursday, October 6, 2011, 2:19am; Reply: 190
Wow, on the mole thing.  I had no clue!!!  I have a few that I'd like to see fall off.  
Posted by: ABJoe, Thursday, October 6, 2011, 3:03am; Reply: 191
Quoted from Ribbit
I have a question about fats.  I don't have diarrhea from eating fats, but I'm becoming convinced that animal fat (with the exception of ghee) causes my skin to be excessively oily.  I've quit eating meat except the occasional fish and very occasional bite of turkey.  Oven roasted I can handle (I eat it maybe once a month).  Ground turkey I cannot, perhaps because when it's roasted the fat drips out for the most part.  Is the inability to process fat (so it comes out my skin) caused by a gallbladder problem?  Again, fat doesn't affect my digestive system.

Several things:
1) Ground turkey meat will cause more issues because the fat is all mixed with the muscle tissues.  Whole parts have the fat around the edges, etc., so it separates out easier during cooking...

2) Fat digestion is aided by the bile, so it is possible that the gall bladder could be the problem, although I would think, the liver is more at fault if you aren't having pain at the point where the bottom of the right ribcage turns sideways after going down from the sternum.  

I am detoxing some beef and pork fat and getting the oily skin syndrome.  My liver is working better due to healing I have been doing, but I think there is just so much healing happening that the body is using all of its resources...  I have also been detoxing small hard chunks through the skin.  I don't know what it is, but I'm glad it is leaving.

I have also not been eating much red meat or poultry.  The body just hasn't wanted it...  Fish, eggs, beans and nuts have been the majority of my protein for several months, although I still eat about 2 meals of liver each week...  

Posted by: JJR, Thursday, October 6, 2011, 4:03pm; Reply: 192
It's funny, because I feel the opposite lately.  I have not eaten very much red meat over the last 5 years, that now I'm craving it big time.  And it seems to be helping.  Which I would think it would make my liver sluggish too.  I'm not entirely CERTAIN that it's helping.  But I always seem to feel better after eating it.  Especially lamb.  But venison too.  Beef seems like I could take it or leave it.  But it doesn't seem bad.  
Posted by: Goldie, Thursday, October 6, 2011, 4:49pm; Reply: 193
I would like to know if Dr D ever dealt with this as a whole or in part..

This is a more devastating illness then all else.. and just antibiotics will only do little..

http://www.underourskin.com/

addresses only half the equation.. we need to see this in order to  even come close to understanding any of its effects on the person living with Lyme.. whether inherited in utero or from a sting..

I would be pleased if someone knows where I can find his views.. THANKS..
Posted by: Tom Martens, Thursday, October 6, 2011, 4:52pm; Reply: 194
http://theubshift.blogspot.com/2010/09/any-naturopathic-doctor-practicing-in.html
Posted by: Kim, Thursday, October 6, 2011, 5:44pm; Reply: 195
One thing for sure is that there is no one size fits all protocol for Lyme disease treatment.

Each individual has coinfections that can change treatment, along with the length of time the individual has been infected.  

Any LLMD I have spoken to will tell you they change treatment protocols all the time based on individual needs and all say that the best you can hope for is remission.  


Posted by: Goldie, Thursday, October 6, 2011, 6:44pm; Reply: 196
Yes .. the post above is so correct.. The movie shows only smidgens of hardship.. like hospitalizations ending up in a mental ward, and getting treatment accordingly..

the silence of the voice so similar in autistics.. to where the adult can hear but not respond..

what of kids? that don't even have a clue?

I feel I, feel so for all and wish more would learn.. to recognize the multiple symptoms... We all might depend on it for sanity...  and comprehension what this is all about.. Ignoring any aspects nor the available info is not enough..
Posted by: Lola, Thursday, October 6, 2011, 6:59pm; Reply: 197
Quoted Text
She incorporates the best of naturopathic medicine with traditional medicine when treating Lyme disease and the potentially devastating effects of this endemic problem in Connecticut.

http://www.dadamo.com/clinic/gn.htm
Posted by: JJR, Thursday, October 6, 2011, 8:40pm; Reply: 198
Thank you for the link Lola.  

Interesting enough, I was going through my Louis Hays books and she didn't have anything on Lyme's either.  It's a cover up reaching even Louis???  Just kidding.  
Posted by: Goldie, Thursday, October 6, 2011, 9:25pm; Reply: 199
Ok lets say there are many topics to be covered.. so can I ask about written stuff on one topic at a time..

Once Lyme infected:  what makes them become a person that eventually develops accumulations of all kinds of bugs, worms and the like.  How would one get rid of lets say:  Ringworms, tapeworm, hookworms and their larvae? can that ever be done?

or: how would a person effectively test for such? can they be eliminated from all over the body or only the intestines, ever? or do they hide to well?  how would one even know about any progress? would it show up in certain test's?  

What would be the best test to find out anything?  how long is a test done today good for? how soon do bugs re-infest?  how would anyone know?

Is, what is seen in stool really bugs?      dead or alive.. which should one see?  can they ever be expected to be reduced from the brain area?    

Any answer or link is appreciated.

  
Posted by: Lola, Thursday, October 6, 2011, 9:47pm; Reply: 200
so many compelling stories and testimonials you can look up
http://www.bing.com/search?cp=1252&FORM=FREESS&q=Lyme&q1=site%3Adadamo.com
Posted by: Ribbit, Friday, October 7, 2011, 1:20am; Reply: 201
http://www.nationallymereport.com/symptoms/300_medical_conditions.htm
Posted by: JJR, Friday, October 7, 2011, 3:25am; Reply: 202
Goldie, I think "bugs" is a slang term for bacteria, when we people use that term.  Which technically Lyme isn't.  I guess it's in it's own category.  Called a spirochete.  Now, it IS transferred to humans through bug bites.  And I suppose you could have one latched onto you for some time.  But I have no clue how long, but that's not really the point.  When you test for it, it's in your blood.  And that type of thing.  It's not a parasite.  Per se.  From what I understand.
Posted by: Goldie, Friday, October 7, 2011, 11:56am; Reply: 203
Ribbit... WOW.. YES that is one way to look at it.. 300 items..

and some people never get diagnosed for years or decades.. at least with this list it explains the complexities!!!  Thanks for the link.. and thanks to the doctors who came up with this list..


JJR... yes bug was my term for not KNOWING even what to call the buggers.. bugs is much to kind.. there are so many 'invaders' taking over health in stealth, going unseen for years until way to late..

Can you imagine doing something about it if we don't even understand what it is.. ??? !!!
There are some microrganism and paracitic effects that can be altered with certain treatments, but is there possibly a way to also influence them with foods or spices?      


AND NOW once more the original question:   Is looking at LYME and BTD a separate thing?  is Lyme so different?  are there protocols or sups or whatever?

Is not more written by any of the doctors here?  on what a person might try to follow through to make any difference??  

maybe at least talking about what test would show LYME .. earlier?? or is the diagnosis so bad that one will not want to hear it?    

Is it always to late for early aggressive treatment unless one still sees the tick bulls eye?    

I mean with it being so all over the country? why do we know so little about simple questions on Lyme?


Posted by: JJR, Friday, October 7, 2011, 5:04pm; Reply: 204
For me, the diet alone is not enough to fight it.  At least, that's my experience.  I think it helps tremendously though.  I would be a lot worse off, if I was just eating whatever.  And I know eating the right foods will help strengthen my system.  BUT, I think it can be very aggressive in some of us, or we need to target the lyme at some point to get rid of it.  Some people may just fight it off better than others, with thier immune system.  But I have gotten systematically worse on some levels of my health, over the last 5 years.  I am weaker now than I ever have been.  Despite following this diet very well.  And I believe it's because of the havoc lyme has placed in my system.
Posted by: nowishow, Friday, October 7, 2011, 7:53pm; Reply: 205
Quoted from ABJoe


2) Fat digestion is aided by the bile, so it is possible that the gall bladder could be the problem, although I would think, the liver is more at fault if you aren't having pain at the point where the bottom of the right ribcage turns sideways after going down from the sternum.  



I believe you can also have pain between the shoulder blades. I have this pain (sometimes very strong) and think it may be my gall bladder.
Posted by: nowishow, Friday, October 7, 2011, 7:54pm; Reply: 206
Quoted from ABJoe

I have also been detoxing small hard chunks through the skin.  I don't know what it is, but I'm glad it is leaving.



I've had this for a couple of years, very strange. But I'm also happy to get it out, whatever it is.
Posted by: nowishow, Friday, October 7, 2011, 8:13pm; Reply: 207
Quoted from JJR
It's funny, because I feel the opposite lately.  I have not eaten very much red meat over the last 5 years, that now I'm craving it big time.  And it seems to be helping.  Which I would think it would make my liver sluggish too.  I'm not entirely CERTAIN that it's helping.  But I always seem to feel better after eating it.  Especially lamb.  But venison too.  Beef seems like I could take it or leave it.  But it doesn't seem bad.  


I go back and forth on how much meat I eat. Sometimes I want very little meat and mostly poultry and other times like now I want a lot of red meat. My body is always craving different things and as long as it's on my swami I follow along.  :)
Posted by: nowishow, Friday, October 7, 2011, 8:15pm; Reply: 208
Quoted from Ribbit
Here's something else to make you wrinkle your brow:  I've written before about how when I go through a detox session (aka herx), a mole or two on my right arm will bubble up, itch, turn into a scab, flake off and leave a scar.  One ND I saw, when this happened, said, "Yes, many  moles are viral, just like warts.  If you kill the viruses, they can go away."  So every couple of years without warning, a mole on my right arm will do it again. I have little scars up and down my right arm that have gone through that process.  Cool, huh?  I'd never heard of anybody losing a mole because they detoxed.  So anyway, with this skin break-out this past week, a big mole on the back of my left arm, that's been there for as long as I can remember, bubbled up and today a patch scratched off.  Underneath is new, clean, pink skin.  Yes, folks, I'm not going to think of skin break-outs as bad and "sick" anymore.  I'm going to start thinking of them as my body cleaning itself out of viruses and bacteria that it can't get rid of any other way.  This is the first time I've lost one on my left arm.  


This explains a lot! I've had similar experiences since I started to recover from this desease. Thanks so much for this information!
Posted by: JJR, Friday, October 7, 2011, 8:30pm; Reply: 209
The pain between shoulder blades could be detoxing also.  I'm told sometimes toxins like to seep out of your spine.  

I saw a video today my sister linked about Lyme from Envita Medical Centers.  It was very good.  http://www.envita.com/disease.html

It's only 7 minutes and it does a good job of simplifying and explaining lymes.  Makes me cringe, but it was good.  PLUS, it showed what effective treatment should include.  It said it should include 3 things at the same time.  Boost the immune system, kill the bacteria (with antibiotics and/ or herbal remedies) and deal with the coinfections.  If you do all three at once, they're saying, you'll get a better degree of recovery.  My thing is I have not dealt with the coinfections, beyond eating well.  Which probably helps.  But I think I need someething else to cover those.  I think the homeopaths I'm taking is actually dealing with the lyme itself though.  Yet it seems crazy, because I guess it burrows into our tissues.  UGh.  But that may be why I've been having more joint pain, since starting the homeopathic remedy.
Posted by: TJ, Saturday, October 8, 2011, 1:44am; Reply: 210
(JJ, you need to take the space out of the end of your URL if you want to make a hyperlink.)
Posted by: Ribbit, Saturday, October 8, 2011, 4:13am; Reply: 211
I always, always, always have back pain, particularly between my shoulder blades.  My back has hurt ever since I can remember.  I have mild scoliosis and the disc degeneration of a 50-something-y.o. (according to my last chiropractor), but I don't believe that's the root of the problem.  The MRIs I had done last summer didn't get my upper back--just my lower and middle.  Every time Rob gives me a back rub to loosen up the muscles, my whole spine will crunch.  It freaks him out.  "That's not supposed to happen!"  But it does constantly.  I'm always trying to crunch the area between my shoulder blades.
Posted by: ABJoe, Saturday, October 8, 2011, 4:25am; Reply: 212
Quoted from nowishow
I believe you can also have pain between the shoulder blades. I have this pain (sometimes very strong) and think it may be my gall bladder.

My understanding is that pain between the shoulders is typically related to the stomach...
Posted by: Ribbit, Saturday, October 8, 2011, 4:45am; Reply: 213
It's too late for me to take antibiotics, which is why I'm going the natural route.  Why bother with something even the experts say won't help?  Of course if I went to them, they'd put me on very strong intravenous abx which would make me much sicker.  I'm happy doing what I'm doing, which is actually making me better.

I have read stories of people with negative blood tests starting up the abx drips and after months and months of treatment, they finally get a positive test result.  Evidently it can take months of "stirring it up" with the drugs to get it to show up in the blood.   >:(

The BTD threw my Lyme into remission.  I was using the term "remission" for years before I had a name for it.

A spirochete is a type of bacteria.  
Posted by: ABJoe, Saturday, October 8, 2011, 4:55am; Reply: 214
Quoted from Ribbit
I have a question about healing crises.  Joe--this one's for you.  I've been eating at least one large clove of raw garlic a day.  My stomach hurts for a couple of hours after I eat it.  My tendency would be to avoid raw garlic.  But maybe, just maybe, it's actually doing me some good and I should keep it up.  I guess I've learned over the years to avoid anything that causes pain (emotional or physical), but if it kills something bad in my body, I'm willing to keep it up.  Would you call a stomach ache from garlic a healing crisis?

Ribbit, I would cut down on the amount you are eating...  While it may be a healing crisis, I think it is just too much.  If you have pin-pointed that the garlic is at fault, then I would reduce to half or 1/4 a clove...

Quoted from Ribbit
I also have another thought.  I had thought that every time my skin gets really bad it must be because I ate something wrong or I'm having a flare-up of some sort.  It's taken several years to notice patterns, but what I'm seeing is there are several things that go hand in hand for me: depression, migraine, paranoia, bloating, brain fog and skin boils.  I'm still having these problems occasionally despite my extreme avoidance of nightshade plants which I know for a fact cause it.  I noticed after this last episode that when things started clearing up, I started feeling really good!  I'm able to think clearly and calmly and I'm even cleaning out my closet/bedroom because it's needed it for a long time.  I tend to wonder around in circles, not being able to put a finger on the reasons for my frustrations, and now I can see it all clearly.  I haven't organized efficiently because I haven't had time or energy, and I couldn't even think well enough to see it before.  I don't know how long it'll last. I unloaded on JJ the other night on the phone and really it was just a last straw---I felt like the whole world was crumbling around me.  Now I feel much better and my skin is clearing back up and my face isn't puffy like it's been for a couple of weeks.  It's always associated with a migraine.....Like I almost *needed* to get sick so I could feel better.  Does that make any sense?  Kind of like when I run a fever.  It's rare I run one, because my body temp is low.  But when I can manage to get a little one, I feel so good afterwords!  It burns off all sorts of junk I've accumulated.  I guess I'm beginning to see times of bottoming out as healing rather than getting worse.  My neighbor, who is unofficially counseling me, asked me last week if my skin breaks out when I'm emotionally upset.  It had never occurred to me because I squash emotions partly because I don't know how to deal with them and partly because I don't have the time or the patience to sort through stuff.  But he'd asked me some questions that provoked me to look through a box of stuff I'd stashed away ten years ago, and just being reminded about things (or accidentally reading stuff that I'd never read in the first place--stressful e-mails I'd printed but not read)...it made me feel for the rest of the day like I was going to throw up and I was having trouble even talking to him (the neighbor).  Couldn't complete sentences and all that.  But his question about my skin breaking out when I'm emotionally stressed made me start wondering if it's all tied up together.

Your description of the getting worse, running a fever, and feeling better sounds very familiar...  

I think the cycle will shorten to where it all happens multiple times each day...  I hurt constantly where the toxins are being removed, have brief periods of nausea and/or dizziness.  Brian fog comes and goes quickly...  I haven't gotten to where the muscle spasms are so quick that they don't fixate the spine, but I'm able to relax it again relatively soon and have it move back...  
Posted by: TJ, Saturday, October 8, 2011, 1:11pm; Reply: 215
Quoted from Ribbit
I'm always trying to crunch the area between my shoulder blades.
Same here.  I have low back and neck pain, too, but I can do a little something about that on my own (even if it's nowhere near as helpful as a good adjustment).

Something else I think is related is stimulus sensitivity.  My coworkers keep the radio on in our lab most of the day (hard rock, no less, complete with off-color morning and afternoon talk shows), and it's louder than strictly necessary.  When I first arrive in the morning I can tolerate it fairly well, but it quickly becomes grating on my nerves.  I have to put in earplugs or find work in the other area (where it's quiet), or I just can't concentrate, and I start feeling overwhelmed and mentally violated.  I've made my frustrations clear, but I'm the new guy so I don't want to press my luck with the lead (who is the least tolerant of working without the radio on).
Posted by: ABJoe, Saturday, October 8, 2011, 3:37pm; Reply: 216
Quoted from Ribbit
I always, always, always have back pain, particularly between my shoulder blades.  My back has hurt ever since I can remember.

I have as well, although mine is at the head / neck junction, between the shoulders, and low back.

For me, I always had a high avoid diet up to starting BTD and a major fall at about age 8 really hurt.  I haven't fully recovered from the fall yet, but I'm making huge progress now...

Quoted from Ribbit
Every time Rob gives me a back rub to loosen up the muscles, my whole spine will crunch.  It freaks him out.  "That's not supposed to happen!"  But it does constantly.  I'm always trying to crunch the area between my shoulder blades.
I think those muscle spasms are due to high toxin levels.  Keep working on the gut, pancreas and liver / kidney health...  The more healthy I get in these areas, the more detox happens and the less spasms I have.  It is a long process, but very worthwhile...

Posted by: Chloe, Saturday, October 8, 2011, 5:51pm; Reply: 217
Quoted from JJR
Chloe, have you used those?

I don't know if I ever heard your story Chloe.  Leanne told me you were the one that encouraged her to look into this lyme thing more.  And she encouraged me more.  So, I'm grateful to you.  

Is there anything that you did that made significant impacts in killing this, off the top of your head?  Or are they too numerous too mention?  Maybe some of both.  I apologize if I'd be making you repeat yourself.  This thread is long enough that I don't remember what you all said.  Or if you did say a lot, what page was it?  Have you blogged about your experience?


Sorry, I have no experience with using this protocol...  I think Dr. Nash used them in her practice...From reading all of the information written on this site about Lyme, I came across
the term Unda Numbers...so I researched it.  You'd have to be working with someone who has
experience using these.  

Leanne...do you remember where that thread is?  The one where I asked you if you could get
yourself Lyme tested...because like my experience with chronic Lyme which had no treatment,
you walk around thinking you've got something really wrong with you and each doctor winds
up treating your symptoms.  One actually sent me to a psychiatrist...because I sounded nuts.

My story is that I had just had my second child and was 26 years old....Baby was a year
when we bought our first house. I was planting a garden....noticed I was scratching my neck...
and saw this red bullseye rash that went from the back of my right ear all the way down to my
shoulder...I sort of thought I got a mosquito bite....It was July....when one morning I woke up
with a stiff neck...felt like I had the flu...probably a week after the rash which hadn't gone away.
I was new to the area....My neighbor saw me walking around limping for a few days. Mothers
have a habit of forgetting what's wrong with themselves and just take care of children, the
home and everything else.  So neighbor suggested I go see his chiropractor...and by now I
couldn't lift my right arm in the air.  He called it a pinched nerve....and kept adjusting me, 3x
a week...and eventually my arm moved...but then it was my knees...I could barely walk..and it
went on for 20 years like that....I'd never really get better....and nobody ever thought to test
me for Lyme until I saw a very smart holistic MD in 1990.  Remember Lyme didn't have a name
when I got my bite...so everyone was looking for arthritis and inflammation and allergies.
I had fever off and on and chronic headaches.  Sometimes my temperature was as low as 96.

For the bullseye rash (without knowing I had an infectious issue) I saw a dermatologist who (stupidly -- from my perspective now) gave me cortisone...topically and orally.

For the next two decades, I lived with aches, pains, headaches, severe debilitating depression.
I saw Dr. D in 1988 (before he was famous) for these same issues...and he too didn't find what
nobody was looking for....Tick toxins and co-infections.  But Lyme had no awareness....Lots
of people had to be walking around not knowing what they had...I started following the BTD
for type A and stayed with it until SWAMI came out and found out I'm a Teacher.

And then in 1993, I got an actual tick bite on my shoulder...pulled the little tick out and wound
up with 104 temperature within a few days.  I was then put on abx for 4 months...doxy...but
I walked around with chills and sweating for 20 years so just having an abx in my system at least
made me feel somewhat able to function.  But each time I'd try to go off an abx, my sx came
back...

I decided to try and treat this holistically....Saw a lot of different people....Where I live some of
these alternative Phds are quacks....Some are actually ripping off the public after taking many
classes on "creating a lucrative practice" and were charging thousands of dollars for chelation...
I have a list of those quacks....one my lawyer had to write a letter to and get my money back.
Another I reported to the attorney general's office in my county....He was investigated, his
chiropractic license revoked.  Be careful for this one thing...chiropractors who have re-invented
themselves and telling you they're lyme specialists.  Most aren't..

Found a Lyme literate MD in my area...Had other issues with him...A great doctor if I showed
Lyme titers which my insurance would cover for abx treatment...but by now, everything showed
past infection...nothing active..In other words, I still have something, but it couldn't be identified.

Next was a master herbalist....who used a biomeridian machine to identify which was now close
to 30 something co-infections I was walking around with...viruses....I have a long list which some
day I'll share....but it's not the obvious...It's not bartonella or borellia....Renember, everything your tick carried was transferred to you...and I was told that might include mosquito bites,
chigger bites I got at sleep away camp and just about anything that ever bit me could be
keeping my immune system from attacking it.

I took homeopathic drops for almost a year...thought I felt a lot better after the treatment. It's
goal was to cancel out the vibration of the toxin...Does it work?  Could it have a placebo effect?
It was very expensive but I can't say for sure it cured me.

this is it

http://www.healerswhoshare.com/

My issue with my SWAMI is that I'm overreactive to foods I haven't eaten for years...I gave up
dairy, eggs and meat when I was 30 years old.  And my Teacher status put back dairy and
eggs...so I've spent the past 3 years following my diet with those additional foods and finally
came to the conclusion that they were causing problems for me..I went back to the BTD for A
which doesn't accentuate dairy or eggs....It's simpler....

And then I found out I carry this APOe 3/4 genetic thingy which means I have problems detoxing.
And that seems to be profoundly true...and probably why my diet is better controlled if I eat
simply whole foods that are mostly plant based and not from animals...

I've discovered on my own which foods feel inflammatory....and I measure my progress by
how I feel on a simple diet (fruits, veggies, nuts, seeds, good oils and fats, fish, a little poultry,
no sugar, no caffeine, no alcohol, no eggs, no gluten)

Until I gave up gluten, I had chronic neurological problems....which appeared as sciatica....and
then morphed into nerve pain that travelled...On some level this mimics a B12 deficiency but
I don't have that.  5 years off gluten and no nerve pain at all.

What I decided personally was that I wasn't going to be a victim of this condition...and I do
believe the body knows how to heal itself if you give it the right tools...and so I will do natural
protocols....I currently take a few natural anti microbials which I rotate.  One is olive leaf extract.
I drink olive leaf tea....and take pills only when I feel I need a boost.  I also take a product
called Lauricidin....has a broad range to kill a variety of toxins....many fungal and Lyme

http://lauricidin.com/tech_data/

I am taking Genoma Security which gets rid of bacterial biofilms..

THe thing I've learned is that your body has to be in the best of health to fight a battle like Lyme..and so I would recommend that you consider things like drinking lots and lots of water...
staying away from sugar....eat whole foods....(I hardly eat processed foods)...organic if possible...
plenty of vegetables...meditation....relaxation....a good night's sleep....

I'm not what I'd refer to as cured....I'm managing this condition by eating as perfect
a diet as I possibly can and living in a way that gives me an edge so I feel well. It's a lot of
work....but this is what it takes.  I feel so much better than I once did...and I'm not on drugs...
but I know for the rest of my life I will continue to eat healthfully.  The fact that I can say
that I feel SO much better that I once did is saying an awful lot!~
Posted by: JJR, Sunday, October 9, 2011, 2:21am; Reply: 218
As far as foods go, I came to the same exact conclusion as you.  Whole foods, pure as we can get, especially meats.  No sugar, caffeine, wheat, sweets, etc.  I do eat a tiny bit of high quality chocolate 2x a week.  And I feel no worse for the wear.  In fact, it sometimes seems like it helps my digestion of dinner.  I eat it after dinner on Saturdays and Wednesdays.  But I can't do ice cream and cake for sure.  And cookies.  Forget it.  I might eat a lara bar once in a while, but usually only half, because it's too much sugar for me.  I haven't had in a long time.  I love fish and it seems good for me.  I have given up dairy, except ghee.  I have also given up eggs, although my body is telling me I could eat some yolk at this point.  But I've yet to try it.  I do need red meat more than you.  But I also have some B in me.  It seems to help my immune system, and my adrenals.  Because it always picks my super low BP up.  

Anyways, thank you for sharing.  I might look into that lauricidin. I'm always interested in things that will kill this.  Your story sounds awfully trying.  Mine is very similar, but hasn't gone on as long.  So far.  But I can totally relate to so much of it.  WE ARE NOT ALONE!!!!!!!!!!!!!!!!!  And WE ARE NOT CRAZY!!!!!!
Posted by: Ribbit, Sunday, October 9, 2011, 2:59am; Reply: 219
Chloe, I think my thread was called "My Trip to the ER" or something similar.  It became insanely long after a while because I was outlining everything that was going on.  I'm so much better than I was last summer!  This was in May of '10 that my worst paralysis episode occurred.

Joe, I have multiple dizzy spells a day.  Right now I think I've got *another* ear infection (they seem to be more frequent lately) and I'm sure that contributes.  The brain fog is mostly "On", but about one day every other month or so, it clears completely up and I can think, see, hear, feel normally.  It lasts a few days and then I'm back to where I started.  It's usually after a migraine/fever/skin breakout.  It also coincides with my legs not being so tight.  I have to say, I remember when I was at my worst (that is, before last summer), between the ages of about 12 and 16, I absolutely hated gym class.  We had to do those awful physical fitness tests, and I couldn't do anything!  My legs were so tight I could barely reach past my knees with my legs straight.  I wish I'd had a name for it back then.  People would have left me alone.  I would have done better taking a nap that whole hour. ::)  I didn't need exercise--I needed sleep.

I'm on several Lyme FB groups and they're all encouraging.  Several of us were talking about which side of our body was the worst and we realized that the side opposite the tick bite was affected the most.  Interesting, huh? The bite was on my right shoulder, and my left side is by far the worst (although it's interesting to note that up till now, it was the moles on my right side that blistered up and peeled off).

TJ, I like the term "mentally violated".   >:( :X

I'm taking Genoma Security now too.
Posted by: TJ, Sunday, October 9, 2011, 7:24am; Reply: 220
Quoted from Ribbit
TJ, I like the term "mentally violated".   >:( :X

I'm taking Genoma Security now too.
It seems like the best way to describe it.  It's somehow mentally and emotionally painful.

The reason I'm still up at this crazy hour is because I've been laying in bed worrying about this situation.  I've got to do something about it.  I can't keeping on "sucking it up".  I hate to be confrontational but that might be what it takes.  Some people just won't take a hint.  And I'm right to be angry about this, anyway.  This is a place of business.  It's not a party where I can just leave if I don't like the entertainment.  I have an obligation to be here and work, and I have the right to conditions that are conducive to doing that work.  I shouldn't have to wear earplugs at a job that isn't inherently noisy! The earplugs don't even block it all out, they just make it quieter.  And if they did block out all sound, they wouldn't be appropriate for work because I need to hear when people are talking to me or paging my to take a call from a customer. >:( >:( >:(
Posted by: Goldie, Sunday, October 9, 2011, 11:53am; Reply: 221
IS there a TEST or are there MANY tests that show if someone has Lyme?  

Does it always take YEARS to find out that one has it?

and finally what DOCTORS is best to go to, once one has it?  ND's MD's or Both or ???
  
Posted by: Kim, Sunday, October 9, 2011, 3:18pm; Reply: 222
Quoted from Goldie
IS there a TEST or are there MANY tests that show if someone has Lyme?  

Does it always take YEARS to find out that one has it?

and finally what DOCTORS is best to go to, once one has it?  ND's MD's or Both or ???
  


Lyme hides very well in the body.  It penetrates the tissue, muscle and bone.  That is why there are no blood tests that can definitively test for it's existence.  If it isn't in the blood the day of the test, the test will show negative even thought the person being tested is positive.  There are studies that show that the spirochete morphs it DNA.

It takes years to find out you have Lyme because doctors are told that Lyme is "hard to catch and easy to treat".  It mimics other diseases.  

This is all they are told about it in medical school and the IDSA, as corrupt as they are, write the guidelines for Lyme.  ILADs, another group of doctors, totally disagree with the IDSA views on treatment.

Lyme doctors make a clinical diagnosis based on what they see on other blood tests, exam and patient history.  Lyme patients have certain deficiencies that show up on other blood tests.  The spirochete robs the body of minerals, magnesium being a big one.

In general, the spirochete disrupts hormone, endocrine, digestion, central nervous system, brain, etc.  

This link can give you a great overview of how complicated and difficult Lyme is to treat.  Anyone can be bitten by a nymph tick and never know it until symptoms show up at some point.  Then you have to find a doctor that can recognize what is going on.  You need to see a LLMD.  Some use both antibiotics and homeopathics.  There is not a one size fits all treatment for Lyme.  Everyone responds differently to treatment.  Antibiotics do not work for everyone and the same can be said for homeopathics.  I chose to do both antibiotics and homeopathics.  

http://www.jemsekspecialty.com/lyme_detail.php?sid=8

Posted by: ABJoe, Sunday, October 9, 2011, 7:45pm; Reply: 223
Quoted from TJ
I've got to do something about it.  I can't keeping on "sucking it up".  I hate to be confrontational but that might be what it takes.

You don't have to be confrontational!  Some one is in charge of Human Resources.  They are very interested in: 1) productive employees, and 2) providing a safe workplace - mostly because it is a legal requirement.  If you go in and describe that the radio is bothering your productivity and earplugs are your only answer, but it interferes with your ability to hear pages, etc...  They will be interested.  

Be prepared with some concrete suggestions to solve the problem - whether the radio can be playing the same station at a lower volume, it needs to be more private - whatever...
Posted by: JJR, Sunday, October 9, 2011, 8:04pm; Reply: 224
Or if people want to listen to music, they should bring their own Ipods or what not, instead of blasting everyone else.  I wouldn't like that as well.  

I'm having a bad day.  I left Church Service about 2 minutes early (thank God I made it through most of it), but I felt like I was going to faint.  I was having an anxiety attack.  I think my BP might be real low today.  I'm afraid to check it.  Or, I'm having some kind of gut deal.  Or, there really was mold on that macadamia nut I ate, which is what caused my anxiety.  I was in church, and I saw tiny little dark specks on a macadamia nut I was eating.  In a normal situation, I would've spit it out, just not knowing, but I had no where to do that.  And I kept thinking, I might've just ate mold.  When I got home, I checked the other nuts and they all have small little dark brown specs, that look like part of the shell or something.  I've never had a problem with them before.  I think it was mostly mental.  But I think there is something causing me to be more prone to anxiety at this moment.  

It is something I struggle with though.  I know I've said this before.  I get really anal about the purity, freshness, anything that looks a little off about my food.  And it's near fanatical levels. To the point where I'm worried over nothing, most likely.  I don't want to turn into Howard Hughes, but I feel like it sometimes.  Anybody else have this problem?  I am trying so hard to not fear, but some days it is very tough.  I know there is a probably a spiritual, emotional, and physical reason for this.  But it has not been easy to overcome.  I used to have more anxiety about what was going on INSIDE of me.  But now the focus has seemed to target what goes on outside of me, that might be going in my mouth.  How clean my hands are.  All that stuff.
Posted by: TJ, Sunday, October 9, 2011, 11:06pm; Reply: 225
Quoted from ABJoe
You don't have to be confrontational!  Some one is in charge of Human Resources.  They are very interested in: 1) productive employees, and 2) providing a safe workplace - mostly because it is a legal requirement.  If you go in and describe that the radio is bothering your productivity and earplugs are your only answer, but it interferes with your ability to hear pages, etc...  They will be interested.  

Be prepared with some concrete suggestions to solve the problem - whether the radio can be playing the same station at a lower volume, it needs to be more private - whatever...
That wouldn't fly here.  There is no HR department.  There are only ~20 employees.  Everyone knows everyone.  If I went and "tattled" it could get rid of the music, but it would create huge hostility against me.  I don't want that.  I like these guys (just not their music), and I want to cultivate a good relationship.  They are more likely to respect me if I go straight to them first.  They won't like it, but everything will blow over soon.  If I go talk to the owner, he could see that as me not being a team player, not fitting in with the culture, etc.  He is known to have a, ahem, mercurial temperament.  As much as I dislike it, going straight to the source seems like the best option.

As far as concrete suggestions go, I intend to make it known that I have no qualms with them listening to music/radio as long as they don't make me listen to it, too, which means headphones.  If it seems necessary, I might haggle a bit about eliminating a certain station and keeping the volume low.  That's still not ideal, but I don't want to be a Nazi about it.
Posted by: TJ, Sunday, October 9, 2011, 11:09pm; Reply: 226
More on topic, I joined the LymeNet forums, asked for references to local LLMDs, and received two private messages containing 12 references.  That should be a good beginning once my health insurance papers have come. (woot)
Posted by: Dr. D, Monday, October 10, 2011, 10:28am; Reply: 227
Lyme Disease requires direct one-on-one advice and treatment.

Generalized protocols could be ineffective and possibly problematic.
Posted by: Amazone I., Monday, October 10, 2011, 11:31am; Reply: 228
I use bioresonance and PT  and cardes,sometimes olive leaf or rizoles and essential oils  to treat lyme,with great success... :D(smarty)
Posted by: Goldie, Monday, October 10, 2011, 2:06pm; Reply: 229
Quoted Text
Lyme Disease requires direct one-on-one advice and treatment.

Generalized protocols could be ineffective and possibly problematic.


Thank you Dr D.. for that answer.. It is what I suspected,  


I am really getting scared for all the people that are exposed to Lyme, husbands, wives, and offspring.. scary.  It is one thing to get on illness but not be able to get a test for it is terrifying..   and to wait for years is the making of a night mare.. not to mention old age illness that will follow..

Kim.. yes I saw the movie Under Our .com and it is shocking in many ways, not least of which is HOW ignorant we the public rare about it.   Mistreatment of those who suffer so real, is just one aspect, the cost of finding any help is beyond comprehension.

I do think that ALL types of treatments are needed to make any differences. That includes fortified diets, BLoodtype Geno type for 100%  is a priority.  Good elimination of the 'trash' of dead cells and or spirochetes or micro-organisms and the like, is needed as well.    

There is much learning needed.  I will read the other long thread on Lyme to be sure, and be able to comprehend so much better..  

I am a better person for knowing more about it.  I learned from a person who suffered greatly, I AM so grateful that she let me in on her 'nightmare' so that I might learn and understand and avoid MIS- JUDGMENT.  

THANK YOU ALL who answered here.. I am very appreciative..  

Posted by: JJR, Monday, October 10, 2011, 5:24pm; Reply: 230
I think the more everyone knows about it and is interested in it, the better off we are.  So it's very nice to see your interest!!!  Especially if you don't have it.  But once I knew I had it, it's bizarre how many stories I'm hearing about people with it, and how much it has affected them.  It has been a blessing to know that my struggles are not alone, and there is a reason, but it's still a bummer.  For all of us that have it.  

2011 The year of the lyme.  At least for me.  
Posted by: Goldie, Monday, October 10, 2011, 6:40pm; Reply: 231
2011 will be a pumper crop for ticks.. I have no kids and if I had some I would build a porch to keep them in.  but now with mosquitoes it becomes even more on issue..

I am interested in two ways.. for knowledge and for helping to understand those who have it..  
Posted by: Ribbit, Tuesday, October 11, 2011, 3:32am; Reply: 232
TJ, I got the name of a local LLMD through a private message on that forum too.  Unfortunately I've forgotten my made-up name, password, etc.  I'd have to sign up again and ask again. ::)  I'm talking with a lawyer friend about getting on disability and it doesn't even seem possible, but at least if I have an LLMD give me an official diagnosis, I might be able to make some headway.

I've taken an indirect route with my children upon occasion that usually goes over really well because it makes them laugh.  If you can make somebody laugh, they can hardly be annoyed at you.  You could just say, "Hey, could we turn it down just a tad?"  After all, nobody but you minds it. ;)  (I know, I know, I've got the sensitive hearing too.....Not to mention certain music makes certain people of certain marital statuses lonely.  RUB IT IN WHYDONTCHA--Yes, I remember.) So if you said that when everybody was amused by something else you said, they  might not mind turning it down.  Or, what I do with my kids is wait till they ask me a question, and then I holler, "Sorry, I can't hear you over all the noise!!!"  They laugh and turn down the volume.  I don't know...Introverts always have the tougher problem working around people.

JJ, I have a suggestion for you, but it's going to sound really weird.  It might make more sense over the phone sometime.  Meanwhile, I will pray for peace for you.
Posted by: Kim, Tuesday, October 11, 2011, 2:49pm; Reply: 233
Quoted from TJ
More on topic, I joined the LymeNet forums, asked for references to local LLMDs, and received two private messages containing 12 references.  That should be a good beginning once my health insurance papers have come. (woot)


That is my favorite group... I help out with sending out names of LLMD's in my area.
Posted by: JJR, Tuesday, October 11, 2011, 3:37pm; Reply: 234


JJ, I have a suggestion for you, but it's going to sound really weird.  It might make more sense over the phone sometime.  Meanwhile, I will pray for peace for you. [/quote]


Well I need something!!!  I used to get anxiety all the time, and it went away for a while.  But these last few days it seems like it's really getting to me.  I know there is an emotional / mental / spiritual component, but I also think there is something physical going on that is making more susceptible to desperate thinking right now.
Posted by: Chloe, Tuesday, October 11, 2011, 4:19pm; Reply: 235
It's a full moon right now.....It's sort of making me feel wired, and a bit over the top.
Perhaps this explains the current level of anxiety.

But I do suffer from panic attacks related to Lyme.

Some interesting reads.
http://www.thehumansideoflyme.net/articlelist.php?mid=4
Posted by: Kim, Tuesday, October 11, 2011, 5:42pm; Reply: 236
Hope that full moon doesn't make me any worse!!!  Panic attacks are my middle name.  Of course the forgetfulness causes panic attacks all day.  It is no wonder they are planning to scan my brain.  Not sure I want to know the outcome.  

I panic everyday that I forgot to take something out for dinner.  LOL.  With the way we eat, that could mean nothing to eat.  At some point, I hope I can get food in the freezer ready to eat for those days I can't move.

Sometimes all I feel like eating is fruit or yogurt.  
Posted by: nowishow, Tuesday, October 11, 2011, 11:15pm; Reply: 237
Quoted from Kim
  At some point, I hope I can get food in the freezer ready to eat for those days I can't move.
  


I make big pots of stew or soup and freeze half of it. That way I'm covered when I have a really bad couple of days. It really helps.
Posted by: TJ, Wednesday, October 12, 2011, 12:12am; Reply: 238
I'm still waiting for my insurance paperwork.  Our agent visited today, and I told him.  He got on the computer and verified that I had coverage effective the 1st, so it's just the USPS that's the hold-up now. :-/

Quoted from Ribbit
"Sorry, I can't hear you over all the noise!!!"  They laugh and turn down the volume.  I don't know...Introverts always have the tougher problem working around people.
That would have been a good idea if the circumstances had been more amenable.  I've tried everything subtle I could.  Any mention of it immediately created tension, and you can't foster humor in that environment.  Heck, it seems like since my first mention, that the party in question has been even more insistent on leaving the radio on all the time.  He seems like the passive-aggressive type.

Yesterday I was finally blunt.  It got me some peace for the rest of the day.  Today, it was like what I said yesterday never happened.  I made my needs clear and directly addressed the people (person, mostly) responsible, with no relief, so I no longer felt any qualms about taking my concern to a higher authority.  I sent an email to the technical leader (effectively the second in command after the owner) describing the problem, what I've done so far to address it, the fact that my efforts have been in vain, and a suggestion for how to remedy the problem.  That was mid-day while the other guys were out at lunch.  I got no response today, and I didn't expect to until tomorrow at the earliest.

Fortunately, I can turn off the radio when they're gone, and also fortunately, I found enough to keep me busy out in the mechanical area today so I didn't have to hear that racket.
Posted by: Ribbit, Wednesday, October 12, 2011, 2:40am; Reply: 239
I keep soup in the freezer too.  I freeze leftovers in mason jars with the lids barely on, and then I go back later and tighten them up.  It's not unusual for me to forget I have to cook.  My poor brain....

Today I talked with a "Lyme advocate" that I met on Facebook.  I called her on the phone and she explained what all I need to do to get on disability.  I have to see an LLMD and get tons of test run.  She also said it would help my chances if I got the kids diagnosed.  I just don't even want to think about that yet.(mad)  But her suggestion was to get as much junk down on paper as we could, and it would greatly increase my chances of them accepting my case.
Posted by: Ribbit, Wednesday, October 12, 2011, 2:47am; Reply: 240
My mom says their vet now recommends everybody treat dogs for ticks year-round.  Because Lyme in pets is becoming such a problem. :'(  We talked for a long time on the phone tonight and I was updating her about my current state.
Posted by: Goldie, Wednesday, October 12, 2011, 6:18am; Reply: 241
Quoted Text
My mom says their vet now recommends everybody treat dogs for ticks year-round.  Because Lyme in pets is becoming such a problem.   We talked for a long time on the phone tonight and I was updating her about my current state.


So good to remind us on the pets.. how come they have protection for animals but not humans??

As for talking to mom, when that is possible then there is nothing better.. I miss my mom and the 'not enough time' I had to talk to her more often - in a meaningful way.. I was always to occupied with what was, not what could have been.. somehow the opportunity seldom presented it self.. enjoy those moments when it feels good.

Posted by: JJR, Wednesday, October 12, 2011, 3:32pm; Reply: 242
YES, the MOON!!!!!!!!!!!!!!!!!!!  I had a phone consult with my Doctor's assistant yesterday and she said mentioned the moon.  And I said, hey, isn't it real big now too?  October is the Harvest moon and it's really big and bright.  So yeah, that could really get things wired.  Ours was covered with clouds last night and it was still real bright out last night.  

OK, so I'm not the only one that struggles with anxiety and mind problems.  Actually, my doctors assistant has Lyme's too and she said the same thing.  I think I feel a little better after taking some of my Amino Acid blend I had started in the spring.  I didn't need it after a while, but I guess I'm probably low again in these things.  

She also suggested:

L-Theanine, which is in Green Tea or a supplement, and
Bach Flower Rescue Remedy, which I think many people have talked about on here.


Frozen stew is a good idea.  I need to learn how to make a good stew.  I really think the addition of more red meat in my diet has boosted my immune system.  
Posted by: Kim, Wednesday, October 12, 2011, 3:50pm; Reply: 243
I just need to feel well enough to spend a day putting food in the freezer.  I have been trying to have leftovers, but lately, my dh is lucky to get dinner at all.

Need to find out how to make compliant chili without beans.  Can't eat them yet!!

That full moon thing....I had two meltdown days this past week.  Watching for that next month.

I use L-Theanine at night to help with sleep.
Posted by: nowishow, Wednesday, October 12, 2011, 5:45pm; Reply: 244
Here's some common gall bladder symtpoms:


Quoted Text
Even though, gall bladder symptoms in women are similar to those of men, women usually tend to experience more abdominal discomfort, bloating and gas.

What are the symptoms?

Symptoms include abdominal pain that may begin under the rib cage and migrate to between the shoulder blades or under the right shoulder blade.  Women occasionally feel a dull ache that does not go away.

This pain is caused by gallstone congestion. In some instances gallstones block the cystic duct, which is the channel through which bile travels from the gallbladder, where bile is temporarily stored, to the small intestine. Bile fluid is prevented from flowing to the common bile duct. As the bile becomes more concentrated, it begins to irritate the inner lining, which causes the gallbladder’s wall to eventually become inflamed. This triggers sharp abdominal pain and nausea, vomiting, as well as restlessness.
Posted by: nowishow, Wednesday, October 12, 2011, 5:57pm; Reply: 245
About anxiety - I often experience the anxiety in a physical form without any emotional components. My heart will start racing, my hands will get clammy, and I'll have shortness of breath. But I can also be overly worried about getting something done or whether there are germs on something. Both these obsessions seem justified in a way considering the disease. I often find myself hurrying to get something done just before I'm laid up for a couple of days with pain (maybe I can feel it coming?). And of course I don't want any more "germs" to enter this body. I'm full up!

But even though it's justified, I'm sure it's out of proportion to what is appropriate behavior. I just consider it one of my many symptoms and try not to give myself any grief over it.  :)
Posted by: Chloe, Wednesday, October 12, 2011, 6:25pm; Reply: 246
Quoted from nowishow
About anxiety - I often experience the anxiety in a physical form without any emotional components. My heart will start racing, my hands will get clammy, and I'll have shortness of breath. But I can also be overly worried about getting something done or whether there are germs on something. Both these obsessions seem justified in a way considering the disease. I often find myself hurrying to get something done just before I'm laid up for a couple of days with pain (maybe I can feel it coming?). And of course I don't want any more "germs" to enter this body. I'm full up!

But even though it's justified, I'm sure it's out of proportion to what is appropriate behavior. I just consider it one of my many symptoms and try not to give myself any grief over it.  :)


Welcome to my world...I never had anxiety or OCD or anything that came close to what I'm
experiencing recently.  I sometimes wake up feeling panicked.  I sometimes take no supplements
thinking it's something I'm taking...but interestingly enough, my issues with lyme have totally
changed.  I used to have body aches and pains...so bad I could hardly move...but since I started
going to exercise classes 3x a week, my tight tendons/muscles/connective tissues seem to have
stretched and can handle  movement. In addition, my stamina is light years better.  The fact
that everything shifted into my head, my mind, my thoughts, my nervous system is possibly
in cleansing mode?  Dunno...just throwing it out there for your thoughts (eveyone;s thoughts)....because I seemed to have cleared old issues and developed this strange high level of anxiety which seems to be all fear based.. Irrational, of course.
Posted by: Kim, Wednesday, October 12, 2011, 6:27pm; Reply: 247
Gallbladder disease isn't always easy to diagnose.  I had a HIDA scan.  There are no blockages of any ducts, no stones, just slow ejection fraction.  That could be from the Lyme or the fact that I lost 120 lbs in the past 19 months.

During all the dieting, the gallbladder was just sitting there holding bile and not releasing because it didn't have to.  I am hoping that it is going to wake up and start squeezing better.

I am in no pain.  No gas or bloating most of the time.  I do find that because my digestion is so messed up by Lyme that I can't tolerate beneficial foods on my swami a lot of the time.  One day I can eat something and have no issues and the next day or two later if I eat that same food, gas and bloating result.

I am told that as treatment progresses, foods that I have sensitivities to will go away.  I used to be able to eat everything.

Today I got a stomach ache after eating raspberries.  Go figure. ??)
Posted by: Amazone I., Wednesday, October 12, 2011, 6:36pm; Reply: 248
backpains... related to Dr. Sarno's books...??) ;) ;D ... :o :X(smile) eventually, and as long as we try to find the enemy in the exterieure... no chance.... ;) ;D(eek)(shrug)(think)
Posted by: nowishow, Wednesday, October 12, 2011, 7:25pm; Reply: 249
Quoted from Chloe


Welcome to my world...I never had anxiety or OCD or anything that came close to what I'm
experiencing recently.  I sometimes wake up feeling panicked.  I sometimes take no supplements
thinking it's something I'm taking...but interestingly enough, my issues with lyme have totally
changed.  I used to have body aches and pains...so bad I could hardly move...but since I started
going to exercise classes 3x a week, my tight tendons/muscles/connective tissues seem to have
stretched and can handle  movement. In addition, my stamina is light years better.  The fact
that everything shifted into my head, my mind, my thoughts, my nervous system is possibly
in cleansing mode?  Dunno...just throwing it out there for your thoughts (eveyone;s thoughts)....because I seemed to have cleared old issues and developed this strange high level of anxiety which seems to be all fear based.. Irrational, of course.


Maybe you're healing is taking place in the brain now that your joints are doing so much better and you're having a reaction to the toxin release.

Posted by: Chloe, Wednesday, October 12, 2011, 8:40pm; Reply: 250
Holy cow...have any of you ever read this?  This person had been on the Discovery Channel's
Mystery Diagnosis.  Blew my mind to read it!

http://www.wildcondor.com/lyme.html
Posted by: TJ, Wednesday, October 12, 2011, 11:16pm; Reply: 251
Speaking of anxiety.  My lab lead was all sullen and passive-aggressive with me again today.  The technical leader, who got the email about the radio, who also just today got promoted to company president by the owner, spoke to me briefly today.  He said he agreed that the radio is a distraction, and that he'd had trouble with it himself whenever he had to work in the lab.   He's trying to work out a way to make a change in a way that will minimize the finger-pointing (at me).  That will take some political savvy, no doubt.  There's also no doubt that I'm going to be in for a bumpy ride for a few weeks if the radio disappears.

On top of that, our biggest customer (about 25% of our business) just notified us that they have decided to take their calibration work to another lab.  In the short term, that is definitely bad news, but in the long run, I don't think it's wise for us to be so heavily invested in a single customer.  They had some insane requirements, as well, since they knew they have so much of our business I guess.

I'm not terribly worried over the loss of the customer -- we have built a good rep and shouldn't have trouble rounding up new business -- but this interpersonal tension is getting old.  Today I kept catching myself with my teeth clenched and my gut sucked in.  At times like these, I'm very pleased with my medications.  I'd be an anxiety- and paranoia-riddled basket-case otherwise!  Nevertheless, I am determined to hold my ground.  I'm well within my rights to insist on proper working conditions, and I know it!
Posted by: TJ, Wednesday, October 12, 2011, 11:55pm; Reply: 252
Ok, so just in case you hadn't noticed, my last post had nothing to do with Lyme disease... but I started the rant here, so I figured I should write anything more about it in the same place...  :P
Posted by: TJ, Thursday, October 13, 2011, 1:03am; Reply: 253
Quoted from Chloe
Holy cow...have any of you ever read this?  This person had been on the Discovery Channel's
Mystery Diagnosis.  Blew my mind to read it!

http://www.wildcondor.com/lyme.html
So I'm reading through this now.  Ribbit, I don't know if you've read it yet, but this sounds familiar:
One day I was driving my car while running an errand for my boss at work. I was driving along looking at the mountains when I felt a shooting pain across my chest, right below my bra line. I thought, it must be the bra, is it pinching me? It was the beginning of paralysis, and in the following weeks, I began slurring my speech, stumbling, getting lost, going out in my car and having no idea where I intended to go. I started to wonder if I had some kind of mental illness, since I was so confused in the head. I started to become increasingly forgetful. I could not remember what errands I was supposed to run.  I wandered, lost track of time, got lost in my own town, and spent 4 hours in the supermarket for no reason. My eyes hurt, they ached from the inside out, my vision went blurry, I could no longer sleep with the blinds down, or the window open. The slightest spot of light in my bedroom sent a violent shock wave through my entire body. It was very painful, the only way I can explain it to a healthy person would be to compare it to not having slept in 48 hours, being punched in both eyes, while having the flu, then drinking a 1 pack of beer, getting smashed, finally going to sleep, after puking, sleeping for 4 hours (while having nightmares of dying) and then someone opens the window, the sun hits your face, and you scream, no! I went to the Emergency room unable to feel my own skin, and with tingling and numbness all over my body. They sent me home telling me I had an anxiety attack.

I can personally relate to these bits:
When you have Lyme, everything gets amplified, and its like you can feel every little sound vibrate through your whole body. Damage to your nervous system makes you ultra-sensitive, and puts your startle reflexes on overdrive.
...
[T]wo-thirds of the doctors I saw told me I thought I was perfectly healthy on paper, and that I should see a shrink. I can't even begin to describe the lunacy and degrading verbal bs I had to put up with from dealing with so many ignorant doctors!
...
I was completely denied a normal life, having fun, hanging out with friends, furthering my education, working, and searching for my soul mate. I didn't have any choice, no real options. I had to fight to survive, and make difficult sacrifices because I was 100% dependent on others in order to just exist.
...
If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause!  That's what I'm talking about, hello!
Posted by: JJR, Thursday, October 13, 2011, 4:10pm; Reply: 254
yes yes yes!!!  All fear based but irrational.  That is exactly what I'm dealing with.  I get that way about supps too!!!  I usually don't quit them completely, although there have been a few times that I have.  But I crack mine all open and only take small amounts.  Like 1/8 to 1/4.  It just seems like full doses makes me feel more strange.  But regardless of that, my think is germs and what goes into my body.  I'm washing my hands a lot and almost every meal, when I'm making my food, there is something that bothers me about it.  It's like the Devil is trying to steal my food joy.  I'm fixating on issues that really just aren't issues.  Like, well, a spec in my food that might be darker than I thought it should be.  Etc etc.  Worrying about how clean the plate or bowl is that I've put my food into.  Those types of things.  I've been rinsing out all my utensils, and things, like that's going to help.  I worry about traces of soap still being on there.  And then I worry about germs.  It's all stupid.  I know that our saliva helps with this, certain herbs, salt, etc etc.  And there's no way you can make all the germs go away.  It's totally irrational, but it's been bad the last couple of days.  

I've also had the times where I'm just like high strung and don't even know why.  Like you need to hurry but for no reason.  I'm pretty good about spotting those and just slowing myself down though.  I did it last night a little bit though, and it took me a while to come down from it.  It's probably the weather change.  We went from Sunny and dry to wet and rainy this morning.  I don't know. I'm just glad I'm not alone and this is indicative of what we are struggling with.  We all sound so similar.

Oh, and for what it's worth, before health problems, I never used to think about any of this junk.  I practically never washed my hands, until I had kids and starting changing diapers.  But otherwise, none of these things ever entered into my mind.  It has to be something with the body that it's going through.  And it may be a spiritual battle also.  But we're all fighting it, obviously.
Posted by: Chloe, Thursday, October 13, 2011, 5:40pm; Reply: 255
I think the limbic brain goes into overdrive and can't re-set itself.  I found this guy's video on
youtube and have been practicing this technique and it seems to have made me feel calmer.  Also
full moon is slowly waning...

http://www.calendar-365.com/moon/moon-phases.html

Anyway, this youtube video....Dr. Henry Grayson....he just seems to resonate with my need for calm right now.

http://www.youtube.com/watch?v=1ZUi3XShdqA
Posted by: nowishow, Thursday, October 13, 2011, 11:01pm; Reply: 256
Quoted from Chloe
Holy cow...have any of you ever read this?  This person had been on the Discovery Channel's
Mystery Diagnosis.  Blew my mind to read it!

http://www.wildcondor.com/lyme.html


What I want to know is where did she get all the money to do all those treatments. I know that wasn't covered by insurance. I know I'd do more treatments if I had more money.  :(

But she did make me feel like I'm not that sick. Her symptoms are much more extreme than mine are. So I'm feeling a little grateful right now.  :)
Posted by: JJR, Thursday, October 13, 2011, 11:05pm; Reply: 257
Well, on one hand, I'm like, what the heck, worry about the animals before people???  On the other hand.  They have more hair and no way to check themselves.  Well, they might check themselves, but it probably wouldn't be as thorough as a person.  Or maybe not.  I don't know, but whatever.  It's a problem for all of us living creatures, obviously.  That does sort of confirm it though.
Posted by: Chloe, Thursday, October 13, 2011, 11:39pm; Reply: 258
Quoted from nowishow


What I want to know is where did she get all the money to do all those treatments. I know that wasn't covered by insurance. I know I'd do more treatments if I had more money.  :(

But she did make me feel like I'm not that sick. Her symptoms are much more extreme than mine are. So I'm feeling a little grateful right now.  :)


This is why I shared it....To put everything in perspective.  She wasn't doing a blood type diet...
so she was probably toxic on other levels...lectin damage.  I agree....that was quite an expensive
healing journey.  I know I paid a lot out of pocket for many protocols that weren't considered
medically necessary....but in the long run, I think it made me take full charge of my health...
put me in the driver's seat and forced me to try just about anything natural.

It also made me follow a more spiritual path.....and presently, always thinking about the internal dialogue I have with myself....reminding myself that I can't afford the luxury of negative thinking....Lyme was more than a debilitating painful physical experience....it was an emotionally, devastating reality.  I now focus on more positive thoughts and feelings.....The body only hears what you tell it....even if you lie and say "I feel wonderful....or I am healed"....Anything that comes from the heart is powerful....

I've been on a major quest for spiritual knowledge in the past week...That full moon, causing
so much anxiety propelled me to look for calming solutions.....and I have started to tell myself
"the glass is half full".  It could just as well be half empty...but a positive spin seems to be what
changes my thoughts and feelings.

I too feel grateful for my progress and I always remind myself how bad I once felt....I'm sure you will all get healthier too.  The body does know how to heal itself with the right tools. And
sometimes the greatest teacher comes with the harshest obstacles...The trick is to find the right tools to overcome these obstacles....  Different for all of us.  Never give up :)

Posted by: Chloe, Friday, October 14, 2011, 12:43am; Reply: 259
I am so paranoid about getting another tick bite that I spray myself with an herbal bug repellent before going outside. I spray my dog.

  My holistic vet won't give the lyme vaccine to dogs...He says side effects are not worth it, and it doesn't work very well anyway.... and how do you vaccinate any person or animal for all the potential co-infections?  In addition where I live, equine erlichiosis is rampant..A tick bites a horse that bites a dog. ...My dog has had this 3x.  So what's the point of a Lyme vaccine if her tick carried erlichiosis?

This isn't my vet but the opinion of a local holistic vet in my area.

http://drschoen.com/articles_L1_11.html

And another opinion

http://www.caberfeidh.com/Lyme.htm

And one more

http://www.i-love-dogs.com/forums/dog-chat/20885-lyme-vaccinate-not.html

And I didn't google the dangers of the Lyme vaccine for dogs.  I merely googled "Lyme vaccine for
dogs".  Many dangers came up.
Posted by: TJ, Friday, October 14, 2011, 12:58am; Reply: 260
Ugh, between the radio and the negative energy I was getting, I was at near-meltdown by the time I left work.  When someone is this profoundly affecting by such things, something is wrong.
Posted by: JJR, Friday, October 14, 2011, 1:10am; Reply: 261
I didn't see ribbit say anything about Vaccination.  I don't think there is even such a thing.  Is there?
Posted by: JJR, Friday, October 14, 2011, 1:12am; Reply: 262
Chloe, GREAT POST.

TJ, stress can do that to anyone.  But yeah, it's worse when you're not completely well.
Posted by: Drea, Friday, October 14, 2011, 2:10am; Reply: 263
I merged the two Lyme Disease threads...
Posted by: Chloe, Friday, October 14, 2011, 3:30pm; Reply: 264
Quoted from JJR
I didn't see ribbit say anything about Vaccination.  I don't think there is even such a thing.  Is there?


Yes there are vaccinations for dogs for Lyme prevention but questionable by a lot of vets.

Ribbit said that her mom's vet to wanted to treat dogs for Lyme all year long.  She wasn't specific....
Maybe she'll see this and explain further.  I just happened to mention Lyme vaccination because
it does exist for dogs.

See my post above regarding the Lyme vaccination for dogs.
Posted by: JJR, Friday, October 14, 2011, 3:59pm; Reply: 265
I had some wild dreams last night.  Well, it was earlier this morning.  I have a feeling that's part of all this.  The mind is taking a hit.  Along with the gut.  It's been pretty good, but it's a little more sensitive lately.
Posted by: nowishow, Friday, October 14, 2011, 6:02pm; Reply: 266
Quoted from Chloe


This is why I shared it....To put everything in perspective.  She wasn't doing a blood type diet...
so she was probably toxic on other levels...lectin damage.  I agree....that was quite an expensive
healing journey.  I know I paid a lot out of pocket for many protocols that weren't considered
medically necessary....but in the long run, I think it made me take full charge of my health...
put me in the driver's seat and forced me to try just about anything natural.



It's so expensive! So far I've spent over $8,000  :o in the last year and a half. Most of that was for the initial testing to find out I had Lyme. But everytime I see my doctor it's $350 and I spend over $250 a month in remedies and supplements. I'm so glad that I went outside the mainstream system so quickly or I'd still be incredibly sick and not know why.
Posted by: nowishow, Friday, October 14, 2011, 6:25pm; Reply: 267
Quoted from Chloe


It also made me follow a more spiritual path.....and presently, always thinking about the internal dialogue I have with myself....reminding myself that I can't afford the luxury of negative thinking....Lyme was more than a debilitating painful physical experience....it was an emotionally, devastating reality.  I now focus on more positive thoughts and feelings.....The body only hears what you tell it....even if you lie and say "I feel wonderful....or I am healed"....Anything that comes from the heart is powerful....



Spiritual path - It's funny how things have worked out. I started getting more spiritual and peaceful about four or five years ago. I started reading and listening to Eckhart Tolle a lot and "practicing presence". I would just sit and not think for a half hour or more. I was taking things easier and feeling easier in the world. And then something would come along. First, it was trouble at work with my boss. It only got better once I got present and really opened up. Next came banruptcy, much harder than the trouble at work and I fought it for much longer. But once I surrendered to it everything seemed to fall into place. Then the biggest one of all, my health. I've only just started to be less resistant to the reality of this disease. I've been just waiting for it to be over so I could "get back to my life". But I see that it's going to take a long time and I really need to stop fighting against this and just accept it. Not give up, but stop acting like my life is on hold. There's nothing wrong with now. I have a lot of pain and fatigue, but that's just the way it is right now. I'm sure it will be much easier once I can really let go of my agenda.
Posted by: JJR, Friday, October 14, 2011, 6:49pm; Reply: 268
I've spent way more money than I care to even think about, trying to overcome this illness.  Thousands.  Of course there has been some hefty bills for my son too.  He had big problems as a toddler.  Insurance only covers what they want.  Which is sometimes not a lot.  There have been times we've been blessed by it.  But we also pay a lot into it.
Posted by: ABJoe, Friday, October 14, 2011, 6:57pm; Reply: 269
Quoted from nowishow
...But I see that it's going to take a long time and I really need to stop fighting against this and just accept it. Not give up, but stop acting like my life is on hold. There's nothing wrong with now. I have a lot of pain and fatigue, but that's just the way it is right now.

I found the hardest part of being sick was accepting that I could no longer be sole provider for the family.  I struggled and pushed (to the point of exhaustive collapse) to continue to stay employed, but is was killing me.  I finally had to be open with DW and ask her to pull the weight while I healed.  I still hate it, but the best I can do is heal as fast as possible so I can get back to some sort of reliable income provider...  

For the mean-time, I started a business that I can do part-time.  I'm not earning much, but doing something to keep depression away is probably more valuable to me than the income right now...
Posted by: JJR, Saturday, October 15, 2011, 5:28pm; Reply: 270
I'm right there with you Joe.  For sure. But God knows are struggles and I don't think he's holding it against us that we can't be the provider that we want to be.  
Posted by: ABJoe, Saturday, October 15, 2011, 8:41pm; Reply: 271
Quoted from JJR
But God knows are struggles and I don't think he's holding it against us that we can't be the provider that we want to be.  

That is my only consolation!
Posted by: JJR, Tuesday, October 18, 2011, 4:17pm; Reply: 272
Something weird happened to me last night.  I warmed up some frozen blueberries in the oven on real low and ate them with a tablespoon almond butter, cinnamon and a little sea salt.  Well, this is something I normally eat, except it was a new brand.  I don't always get organic and this was.  But anyways, I ate it and felt like it ramped me up a little, almost like it was kicking off a detox?  

Will blueberries do that?  Maybe all the enzymes?  There was quite a bit of juice in it.  I got out my Berries, nuts and seeds book by Heinerman and it says blueberries are really good for treating dysentery and diahrea and it also is good for "Malaria".  And I was like, wow, Malaria.  Co infections.  I wonder if it is fighting it.  After about 45 minutes, the pain went straight to my knees.  This has been a symptom I'm having this year.  My knees ache a lot.  I've never had that before, that I remember.  Last week I bent over to mess with some wires on the back of the TV, very briefly, and they hurt all afternoon.  Ugh.
Posted by: Chloe, Tuesday, October 18, 2011, 9:02pm; Reply: 273
JJR, you might want to read this:

Hering's Law of Cure:

Hering's Law of Cure is the basis of all healing. This is the way the body heals or cures itself. "All cure starts from within out, from the head down and in reverse order as the symptoms have appeared or been suppressed".

"We don't catch diseases, we create them by breaking down the natural defenses according to the way we eat, drink, think and live". Hering's Law is a very important law to understand and remember. It is imperative to follow this law in order to allow the body to eliminate toxins created daily.

The definition of Hering's Law of Cure is as follows:

"We heal from the head down". This means that before we can even begin to heal we must believe we can heal. We must be mentally prepared and strong in order to allow the body to heal. We must not doubt the body's ability to heal itself.

"We heal from within out". This means we must allow the body to cleanse. In order for the body to eliminate toxins it must be allowed to do so by not suppressing any kind of discharge.

Most over-the-counter medications and prescriptions do suppress discharges. This is not good as these toxins can go deeper into the body and create other weaknesses. The body must be allowed to cleanse itself in whatever manner it needs to without interruption by synthetic suppressive substances.

"We heal in reverse order as the symptoms have appeared or been suppressed". This means that most of the time the last problem someone has is the first problem to be dealt with by the body in the reversal process.

For instance, let's say the last illness you had was a sinus infection and a suppressive medication was used to stop any sneezing, coughing, dripping nose or sinus drainage.

In order for the body to heal itself it must eliminate these toxins and mucous that were suppressed at this time. Since this was the last illness it is the easiest for the body to heal.

The body may stimulate the Immune System to create a fever to burn out the toxins, the toxins may be eliminated through the Lungs or Bronchioles causing a large amount of phlegm to exit these areas, it might eliminate them through the skin causing breakouts or it could eliminate them through the Colon in which case mucous, old feces and food that hasn't been eaten for quite a while may be eliminated. These are just a few ways the body heals itself.

Unfortunately, Hering's Law of Cure is not used today in Orthodox medicine. Orthodox medicine generally believes that because the symptoms are suppressed the problem is cured, or by removing the organ, which is not functioning correctly, it can cure the problem.

Perhaps this is why no one knows what a "Cold" is today. A "Cold" is the body's way of eliminating toxins, which it does by increasing the mucous from the mucous membranes in order to free the toxins. Toxin elimination is imperative in order for the body to stay healthy. Disease reversal is also imperative in order for the body to "cure" a disease.

I found this information interesting....wanted to share it here
http://www.thenaturalrecoveryplan.com/articles/how-the-body-heals.html
Posted by: JJR, Tuesday, October 18, 2011, 11:06pm; Reply: 274
Well I know this, my stomach was the last thing to be terrible, right when my crash started.  And it seems to be for the most part very good for a while now.  I'm more hungry, and I don't need digestive enzymes.  And I'm even eating more meats and everything is still moving.  I'm not eating dairy, but I may start soon again because I feel like I need to fill a black hole in my stomach sometimes.  This is good.  Because for years, eating was something I didn't even want to do.  So, yeah, if it's going backwards, I think the lyme was the thing that started it all, and it feels like it's going after that now.  Possibly.  But it's funny how foods sometimes make me react.  Actually, I feel like I'm needing more grains and less fruit right now.  It might be the colder thing.  Because I'm eating fruit and it's like, "Give me some real food".  The sweet potatoes are hitting the spot and real warming, make you full foods.  But when you're not eating dairy and gluten, it becomes a challenge sometimes.  I do need to make some kind of muffins or something with compliant flours.  It's been too long.  
Posted by: Ribbit, Wednesday, October 19, 2011, 2:42am; Reply: 275
I have an appointment to see Dr. Kalb in a couple of weeks.

http://www.csfmed.net/

I'm liking what my ND has me on, but if I can get a huge long list of co-infections, I'm more likely to get disability, or so I'm being told.

As for the question about treating dogs for ticks, what my mom meant was using tick-deterring collars year-round now.
Posted by: TJ, Wednesday, October 19, 2011, 3:00am; Reply: 276
The radio issue was addressed today in a brief meeting before lunch.  Some compromises were made.  The company will likely provide me with a pair of noise-canceling headphones to wear during the day.  Once the two main instigators leave I get to turn off the radio (which is what I was doing already -- not really a compromise IMO).  I'd like to allow the radio up until noon, or until they go to lunch, whichever is earlier, then have it off the rest of the day.

My cousin in Virginia has been suffering with dizzy spells for the past month.  I just asked her mom on FB if she'd been bitten by a tick this summer. :-/

I have health insurance now, but the plan I picked doesn't cover my regular doctor or any of the LLMDs I was told about.  I talked to our agent today about changing to a different plan, and he thinks it will still be possible because this is the first month of coverage still.  I sure hope so!
Posted by: JJR, Wednesday, October 19, 2011, 4:17pm; Reply: 277
The first thing I would check in Dizzy spells and summer is how much water is she drinking.  It's easy to get dehydrated, because so many people don't drink as much water as they should.  I know I didn't when I was a teenager.  I never had a habit of it.  I remember not liking it.  I also remember drinking lots of other stuff.  We'd drink water on the football field, or in wrestling we'd get a water break.  But otherwise, it was juices.  Which was probably "good enough".  And every once in a while I'd be thirsty and stick my head underneath the faucet and drink a ton of water all at once.  Probably because my body was craving it.  

Anyways, yesterday, I was starting to feel human again, doing the dishes more, had more energy, and then last night we got this huge storm.  It's rainy, super windy, and I feel like I got hit by a mack truck.  It's amazing to me how one can feel hope and physically better and then get knocked down.  I know it's the cycle of things.  And I know I'm not the only one it happens to, but it's frustrating.  And another thing that is amazing is how much I'm affected by the weather.  Weird.
Posted by: deblynn3, Wednesday, October 19, 2011, 5:00pm; Reply: 278
[quote=1211]
My cousin in Virginia has been suffering with dizzy spells for the past month.  I just asked her mom on FB if she'd been bitten by a tick this summer. :-/

After dehydration I'd ask about allergies, and her ears. Only time I'm been dizzy it was allergies which filled my ears with liquid.

(dizzy)
Posted by: JJR, Wednesday, October 19, 2011, 8:42pm; Reply: 279
Good point.  Allergies will mess with your sinuses.  Etc etc.
Posted by: TJ, Thursday, October 20, 2011, 1:43am; Reply: 280
She was supposed to go see a doctor today.  I haven't heard the results.

When I asked my aunt (her mom) if she had been bitten, she replied, "no she has positional vertigo". ::)  So I asked her, "Do you know what's causing it?"  It's that same old problem of confusing the diagnosis with the cause.  I guess I shouldn't expect anything different: even MDs do it.
Posted by: JJR, Thursday, October 20, 2011, 2:34am; Reply: 281
Yeah, they give it a name, but can't say what's causing it.  But it seems like the name makes it a condition that isn't related to something else.  I don't know anything about positional vertigo though.  
Posted by: TJ, Friday, October 21, 2011, 3:21am; Reply: 282
She's supposed to go to a specialist now.
Posted by: JJR, Friday, October 21, 2011, 4:18pm; Reply: 283
Amazing.  Clear skies today and I can tell there's just less ickiness in my bones.
Posted by: TJ, Saturday, October 22, 2011, 1:52am; Reply: 284
My last-minute health insurance plan change went through!  (woot)  None of the LLMDs who were referred to me through the Lyme forum are covered on my plan.  Fortunately, my doctor (nurse practitioner) is quite open-minded about alternative approaches, and I think I can help him get Lyme-literate enough to treat me. ;D
Posted by: JJR, Sunday, October 23, 2011, 12:30am; Reply: 285
Does taking showers or baths ever wear you guys out?  It does me.  It was getting better, until this year.
Posted by: TJ, Sunday, October 23, 2011, 3:59am; Reply: 286
Yeah, sometimes I'd rather not except that I'd feel gross, so I just shampoo and wash the "high spots".
Posted by: ABJoe, Sunday, October 23, 2011, 4:10am; Reply: 287
Quoted from JJR
Does taking showers or baths ever wear you guys out?

It depends...  Most of the time, a shower is refreshing, sometimes it is relaxing so I feel really tired when finished.
Posted by: JJR, Sunday, October 23, 2011, 5:32pm; Reply: 288
Quoted from TJ
Yeah, sometimes I'd rather not except that I'd feel gross, so I just shampoo and wash the "high spots".


Yeah!!!  I'm not alone.  It just seems to fatigue me.  That's what I did last night.  Just quick and I make sure the water is not too hot.  If it's hot, it really drains me.  
Posted by: TJ, Sunday, October 23, 2011, 6:15pm; Reply: 289
Hmm, I'm not a fan of hot showers, either.  Spooky coincidences here, no?

Anyway, I seriously overdid it yesterday.  I bought a bed frame for my mattress this week, and the platform that supports the mattress was too soft for comfort (trampoline material stretched out by springs).  I added six wooden braces under the material to prevent sagging.  It took a lot longer than I expected, and I was exhausted by the time I finished.

One of these days, it will be nice for these projects not the "cost" me so much. :-/  At least I'll sleep better now.
Posted by: JJR, Sunday, October 23, 2011, 8:44pm; Reply: 290
Well, the upside is you have a nicer bed now.  We'll get better.  There's a better day coming.  I had to keep saying it to myself, because I don't want to believe that this as good as it gets.  It would be too depressing a thought.  Plus, it just doesn't help to focus on the negative.  This is just me coaching myself, sharing with you.  I've had a hard week.  
Posted by: Chloe, Sunday, October 23, 2011, 9:42pm; Reply: 291
Quoted from JJR
We'll get better.  


You absolutely WILL! :)

Posted by: ABJoe, Monday, October 24, 2011, 12:25am; Reply: 292
Quoted from JJR
We'll get better.

We're getting better...  We're detoxing and healing at a fast pace and the pace is getting faster as we heal.  All of this discomfort is the healing process working in us.
Posted by: JJR, Monday, October 24, 2011, 1:54am; Reply: 293
I hope you are right Joe.  You are a very wise man, so I need to trust you!!!!
Posted by: ABJoe, Monday, October 24, 2011, 2:31am; Reply: 294
Quoted from JJR
I hope you are right Joe.  You are a very wise man, so I need to trust you!!!!

I only go by personal experience.  You need to trust in God, as he is providing the wisdom (and all else).
Posted by: JJR, Monday, October 24, 2011, 3:31pm; Reply: 295
Yes, Amen.  Romans 8:28 And we know that for those who love God all things work together for good for those who are called according to his purpose.
Posted by: TJ, Tuesday, October 25, 2011, 12:05am; Reply: 296
I have my doctor's appointment tomorrow.  My experiences with him so far suggest that he will be open to treating me for chronic Lyme.  I hope the trends holds.
Posted by: Chloe, Tuesday, October 25, 2011, 12:42am; Reply: 297
Quoted from TJ
I have my doctor's appointment tomorrow.  My experiences with him so far suggest that he will be open to treating me for chronic Lyme.  I hope the trends holds.


Wishing you the best tomorrow, TJ.....hope it all goes well!  :)
Posted by: JJR, Tuesday, October 25, 2011, 3:44pm; Reply: 298
Let us know how it goes!!!!!!!
Posted by: TJ, Wednesday, October 26, 2011, 3:33am; Reply: 299
I told him why I thought I had Lyme.  I showed him the ILADS website, and I sat there like 10 minutes while he looked through the "Chronic Lyme Disease" page.  He seemed impressed with the information presented there.  He was very open to the idea of me having Lyme.  He wasn't ready to diagnose me with Lyme disease, but agreed to put me on doxycycline for a month to see what happens.  I'm seeing him again in 4 weeks.

It turns out that he has another patient with chronic Lyme (I think confirmed by a lab test of some sort).  I'd imagine that he's going to study the ILADS website, and when I come back to see him he will be ready to go forward with a diagnosis.  In the meantime, I got what I was hoping for.  I just hope I don't have a bad reaction to the ABX!  The information insert said it may contain sulfites, and the Dr. said it could cause Stevens-Johnson syndrome if I spent too much time in the sun.
Posted by: Goldie, Wednesday, October 26, 2011, 1:07pm; Reply: 300
Might I ask a in-delicate question?  

has anyone here ever got better then they where when they started feeling the effects of Lyme?

I am apologizing for the question, I hope that the answer will be a resounding yes, and that there are real REASONS for feeling better.. I am asking with the utmost RESPECT. Anyone not wanting to 'go there' I understand. Anyone wanting to email me, I am ok with that also.  

(In my own NON Lyme journey with health pain, it took me years to get to the place of feeling better, but that is no comparison to what you go through.  I just wish to tell you that trying all kinds of things is what fixed me.  I was not ever giving up, and eventually found what worked for me.)   together there might be a way of finding what works for each stage of this illness.  

I feel I am intruding here, but I do want to learn.  I use equipment to 'heal' others and learning from you is invaluable..I am respectfully grateful..
Posted by: nowishow, Wednesday, October 26, 2011, 10:40pm; Reply: 301
Well, I'm much better than I was 1 1/2 years ago, but I've still got a ways to go. I've met a lot of people (through the internet) who have gotten better so I have hope. Since I've been sick so long it's going to take a while. I'm at about 70% or so right now.
Posted by: TJ, Wednesday, October 26, 2011, 11:51pm; Reply: 302
It's hard to say, Goldie.  If this is Lyme, I've been living with it for a minimum of 20 years.  I've grown up with it, and I'm growing older with it (even if I don't look my age).  I don't know what it's like to be "healthy".

So I've been thinking, Lyme flares = bipolar depression.  Especially since the depression comes with a worsening of the other symptoms that could be associated with Lyme.  It's certainly not proof, but there is an internal consistency to the whole idea that's hard to ignore.

The ABx wrecked my stomach this morning.  I had to stop and eat breakfast to get some relief, and was late for work because of it.  I feel fine now, thankfully.  My prescription is for 100mg 2x daily, but in light of what I've read about doxycycline on ilads.org, I took both pills at once today (no doubt contributing to the stomach trouble).  I'll be sure to eat before taking it tomorrow.
Posted by: JJR, Thursday, October 27, 2011, 12:26am; Reply: 303
I just figured out I had lyme.  So.......  this has been a pretty hard year for me health wise though.  Although there were times I was worse.
Posted by: Kim, Thursday, October 27, 2011, 11:46am; Reply: 304
The lyme doctor did not push the issue with the gallbladder but I am still not sure I shouldn't just get it out.  Biliary Diskinesia is what they call a sluggish gallbladder with no stones.  The tests are not always accurate so there could be a stone somewhere. HIDA scan was 26%, 3 years ago and two weeks ago it was 5%.  That is pretty low function.  There are days, I don't feel like eating at all.

Heredity plays a roll here.  Most of the women in my family have gotten stones and their gallbladders are out.  Losing all that weight didn't help the gallbladder function either and with Lyme, weight will continue to be an issue until I get rid of most of the infection.  That is going to take a few years.

I have all the coinfections!!  I am supposed to start the pulsing routine on the 7th of November.  Seriously considering just getting the gallbladder out before I start antibiotics.  I have had pain on and off for 8 years although not as bad at the moment.

Swami has helped that a lot but I still have low stomach acid which doesn't help.  I can't take HCL because it hurts my stomach.  My LLMD believes my gallbladder is inflamed and full of spirochetes.  Antibiotics don't seem to penetrate the gallbladder well.

I won't risk a flush because I have already heard from too many people ending up in the emergency room with a stone stuck from doing a flush.  I wish there was another test to tell me for sure the organ is diseased.  

Just call me "Crazy in VA".  I am so stressed over this.  I need to get off this fence!
Posted by: JJR, Thursday, October 27, 2011, 5:11pm; Reply: 305
I'm so sorry Kim.  I hate not knowing also.  I also know that it is so easy to have anxiety over it.  I've told you what I think about it and I haven't changed my mind.  I need to get my louis hayes book out and see what it says about the gall bladder.  But this I know, stressing about it, won't help it.  Try to tell yourself your gall bladder will get better.  Even if it's not working great, do you think it's harming you?  I don't think it would be.  But again, I'm not a doctor.  But maybe you should just take what the lyme doctor said and use it as a stepping stone.  Something you can nail your fears into.  Trust him.  I was just reading in Proverbs that by wise counsel we wage wars.  We are waging a war against a terrible disease.  And it is sometimes too hard for us to understand it all.  We have to give some credence to the counsel given to us by the others we trust.  I guess you just have to decide what information you are going to trust the most.  But I totally understand, it is not easy at all.  I will be praying for you.

I have a skype appointment with my doctor today.  I planned on going in, but it's an hour away, and I woke up not feeling very well and this will be the next best thing.  Hopefully I'll have some more good "wisdom" to wage this war too.

I wonder how Leanne is coming along.  I think she had an LLMD appointment this week.
Posted by: Kim, Thursday, October 27, 2011, 6:58pm; Reply: 306
My gallbladder is harming me.  It is inflamed and likely full of spirochetes.  This is not an unusual thing to happen to someone with lyme disease.  The function has decreased in spite of my doing all the right things.  It is diseased and to keep it in is going to make it extremely difficult to get my immune system back up and running.  It will make any lyme treatment difficult.  

I do trust God, but he never promised anyone they wouldn't have to have surgery.  I am going to see the surgeon next week and hopefully this will be over by the middle of November so I can start my Lyme protocol.
Posted by: JJR, Thursday, October 27, 2011, 7:27pm; Reply: 307
Aaah, well it sounds like you are decided then.  Your last post made it seem like you weren't.  I'm very sorry.  I didn't mean to irritate you.  I totally understand your concern and frustration and I agree that God never promised that we wouldn't have to have surgery.  I wasn't trying to infer that.  I just thought you had said your Lyme Doctor wasn't necessarily for getting it out.  I apologize.  

My Doctor just gave me some tough love.  Hehehehe.  He told me to GET MOVING!!!!  In so many words.  Among a bunch of other things.  Right now he wants me to concentrate on probiotics with cultured veggies and supplements, more digestive enzymes and a few more things to build my body back up before I can really fight it.  But I'm still supposed to take the homeopath.
Posted by: Lin, Thursday, October 27, 2011, 8:57pm; Reply: 308
JJ,
you mentioned in one of your messages having a day with lots of energy but then a huge storm came and you were exhausted.  The accupuncturist I go to says that wet weather bothers people with "Damp" or Yeast issues. Which I have.  This may  not be case with you but thought I'd mention this.  She recommends staying in doors on days like that and eating foods that won't feel the yeast problem.
Lin
Posted by: Kim, Thursday, October 27, 2011, 9:05pm; Reply: 309
Not irritated at all.  I needed to decide what to do today.  After hearing from many who have lyme disease  and had their gallbladder out, I decided to do get it over with.  My husband has seen me doubled over for 15 hours at a time, and he wants me to do this too.

I don't need that pain and the problem has progressed to the point of no return I think.  I can eat for a few days and then boom, I can't eat anything.  

In the time I have been on Swami, I have had lots of issues eating many of the beneficial foods.  I believe the gallbladder problem in that it isn't releasing bile for me to digest food, has been the culprit.  I can't even begin to enjoy my food list that swami has given me.  I can't take enough digestive enzymes.  

Once the infected organ is out, then I can try to feed my body the right foods.  
Posted by: JJR, Thursday, October 27, 2011, 9:29pm; Reply: 310
Quoted from Lin
JJ,
you mentioned in one of your messages having a day with lots of energy but then a huge storm came and you were exhausted.  The accupuncturist I go to says that wet weather bothers people with "Damp" or Yeast issues. Which I have.  This may  not be case with you but thought I'd mention this.  She recommends staying in doors on days like that and eating foods that won't feel the yeast problem.
Lin



Yeah, that's me and good advice.  I need some more probiotics to start getting rid of some of these bad guys.  My doctor is really pushing the cultured veggies, saying how much they can help.  And probiotics in general.  I've kind of laid off for a while, and need to get back to it.
Posted by: Goldie, Thursday, October 27, 2011, 10:30pm; Reply: 311
Quoted Text
Once the infected organ is out, then I can try to feed my body the right foods.


could you ask that they keep the gallbladder and do a biopsy to see if the spirocetes where there?  I mean I think when we take something out we ought to be told what was IN it even if nothing.

could you ask?  but be sure they don't just tell you while you are groggy __ what they did to me.. I want to KNOW..

In my case I wanted to keep my hip bone for when I needed the bone particles for a graft into my mouth.. when talked to still groggy I forgot and they gave it to others to use.. I wish I had it frozen waiting for me, now I will need other peoples bones inside my gums.. gross@!.

Posted by: Kim, Friday, October 28, 2011, 12:17am; Reply: 312
I thought about that but I would have to get a kit from Igenex, and pay for the surgeon to save it and send it off.  

I may find out how expensive it is.  
Posted by: JJR, Friday, October 28, 2011, 12:21am; Reply: 313
For those of you with Lyme's, what exercises would you recommend, or tapes.  My Doctor says to do some yoga and what not.  I know this has probably been talked about before, and I have asked myself, but I would like to know from you guys that specifically are struggling with this, what seems to help you guys, or what has worked.
Posted by: TJ, Friday, October 28, 2011, 2:02am; Reply: 314
Quoted from Kim
My LLMD believes my gallbladder is inflamed and full of spirochetes.  Antibiotics don't seem to penetrate the gallbladder well.
I keep seeing this theme.  I had my doubts, and decided to do some research.

The first problem is that some antibiotics don't make it into the bile.  There are some that do.  See page 3 of Antibiotics in the treatment of biliary infection for a table showing antibiotics that are excreted in bile at "poor", "moderate", and "good" bile-to-serum ratios.

The second problem is that antibiotics that are excreted into the bile are not as effective/active in bile as they are in serum (also from that article).

So to pull it all together, you have to (1) find an antibiotic that's effective against B. burgdorferi, (2) that is excreted into the bile, and (3) is active enough, in bile, against B. burgdorferi to have a therapeutic effect.

Quoted from Kim
After hearing from many who have lyme disease and had their gallbladder out, I decided to do get it over with.  My husband has seen me doubled over for 15 hours at a time, and he wants me to do this too.

I don't need that pain and the problem has progressed to the point of no return I think.  I can eat for a few days and then boom, I can't eat anything.
Notwithstanding the complexity, I don't think it's impossible (just really difficult) to fix a gall bladder, but it sounds like you would be doing the right thing to have it out, considering your circumstances.  Like you said, sometimes there's a point of no return. :-/
Posted by: Goldie, Friday, October 28, 2011, 8:23pm; Reply: 315
might this be a good thing to share with you..

http://www.teleconferenceinfo.net/successfulmedicine.html  
Posted by: TJ, Saturday, October 29, 2011, 1:53am; Reply: 316
The link was "404 Not Found". :(
Posted by: Ribbit, Saturday, October 29, 2011, 2:39pm; Reply: 317
Y'all, I can't even concentrate enough to read all this.  It makes me mad at myself.  

Kim, you have to get better.  If that means having surgery, for goodness' sakes, get it done!  And that's coming from someone who is very anti-surgery.  (I'm so anti-surgery that when I nearly lost all my pelvic organs with the birth of my most recent baby, I refused to have surgery to have it all put back in place even though my body was becoming more and more toxic by the day.  I'm thankful to God for online networks of people whose knowledge and experience direct us to help.)  But wouldn't you rather know you'd done all you could?  I'm also very anti-antibiotics.  But when nothing else is working and you're desperate, you take the drugs!

When I was at my worst, last summer, I couldn't take very hot showers.  I couldn't take cold showers either.  I couldn't take warm showers because they felt cold.  So I'd take a hot shower and ask DH to help me climb out of the tub and I'd be shaking all over.  When I was little (I'm like TJ--I've had it so long I hardly remember ever feeling okay), I'd do all I could to avoid being wet. Being wet made me cold, and even the knowledge that I'd be warm *in the tub* wasn't enough to get me in it, because I knew it wasn't worth the misery of being cold for a few minutes after I got out. I don't like to admit it, but I'd go long periods of time without bathing.  I was gross.  But I felt awful about myself anyway, so it really didn't make it any worse.  I became my stereotype.  My theory about this is that our thyroids are the issue with bathing.  Because our thyroids are messed up from the Lyme bacteria/viruses, our body temperature isn't properly regulated, so we become sensitive to changes either hotter or colder.  Being wet makes us cold.  Being in hot water makes us overly hot, and then cold while we dry off.  It's *extra* uncomfortable.  We are likely all Highly Sensitive People because the bacteria/viruses are also in our nervous systems.  A couple of years ago one winter I complained bitterly here on the forums about not being able to warm up.  Even though the heat was on, I couldn't get warm.  That's typically how I feel during the winter.  But someone here on the boards suggested I get a wool sweater, and I did.  It made all the difference.  Having on a snug-fitting shirt, a regular shirt and then a wool sweater, plus shoes around the house (which I didn't like to do because I prefer to go barefoot 24/7)....I stayed warmer and less miserable.  It seems to be the sudden changes that get to me.  The first "cooler" day this summer, when the temperature was 80 instead of 98 outside, I had on long jeans, socks, and a jacket.  Because it felt cold to me.  80*.  Yep, that's me.  Now that my body has adjusted, being outside with short sleeves in 60* weather is okay if I'm working.  It's the sudden changes that bother me.  Maybe my ramblings here will help somebody else.

I can't spell today.  All my words have a squiggly red line under them and I have to backspace and fix it.  My left arm hurts--the one that never stops tingling since my paralysis episode 18 months ago.  The fibromyalgia has been bothering me the last couple of days.  And Thursday I fell over a log and banged the back of my leg on something (don't ask me how I did that).  I didn't hit it very hard, but the whole muscle cramped up and it still hurts.  I couldn't find the arnica cream.  I keep hurting myself.  Although it's not as bad as it was last summer.  Remember when I sliced my wrist open on a glass jar?  The pictures are in my old thread about my ER trip.  I still have an impressive scar.  I'm thankful for my ND--I think the stuff she's got me on saved my life.

I totally get what TJ's saying about all the manic depression stuff roaring back along with all the other Lyme flare-ups.  In my own case, oddly enough, ingestion of a plant in the nightshade family brings it all back.  I could see how some people could be so sensitive to gluten or casein and maybe that causes a flare-up.  Solanine causes hallucinations in sensitive individuals and ... well ... I steer clear.  They are poisonous to me.  Thanks to Dr. D's work, I know that.  I wouldn't have ever figured it out otherwise.  If I steer clear of nightshades and if I take all my mood-boosting supplements, I don't get the manic depression.  I feel much more level-headed.  Even if I have a symptom flare-up, it doesn't affect my mind.

My appointment with Dr. Kalb is the week before Thanksgiving.  Here's something else I'm thankful for:  I'm supposed to go off all my supplements and homeopathic drops for about a week before the appointment so they don't "hide" anything from the testing.  I'm afraid of getting really bad, really fast.  My husband was supposed to be gone for that entire week (he travels some for work) and I'd be alone with four children all that time.  I really was afraid.  So Rob just told me his trip was canceled, and he's even going to take a couple of days off in preparation for our trip.  Right after the appointment, we're headed to Florida for Thanksgiving.

(mad)

Ah, well, it'll do everybody good to see me really sick.  Nobody believes me.  Rob advised me to quit talking about it because nobody believes I'm sick.  I look fine, and everybody's always saying how healthy and fit I look.  

Thank you, coffee, for keeping a smile on my face till I get home to crash.
Posted by: Ribbit, Saturday, October 29, 2011, 3:03pm; Reply: 318
Do y'all get frequent nose bleeds?
Posted by: TJ, Saturday, October 29, 2011, 3:50pm; Reply: 319
I don't get nosebleeds.
Posted by: JJR, Saturday, October 29, 2011, 4:11pm; Reply: 320
No nose bleeds.  But your rambling makes me feel better, as it is a lot of the same stuff I'm dealing with.  My wife got me a wool sweater last year, that has a shaw collar and it's so snugly.  It helped me a great deal last winter.  And I wear slippers in the house all the time.  Thicker ones now, in the colder weather.  But yeah, my body doesn't regulate my temperature well at all.  I barely ever sweat, except while in bed.  

I have a feeling I know how you fell over the log.  And it might have something to do with the word "gauge" in it.  Maybe?  Hehehhehe

Part of me wants to tell me you'll be super fine without your supps.  Sometimes our bodies do well to take a break.  But, on the other hand, sometimes the right supps are really the difference between terrible and better.  But I think you'll survive, either way.  I'm SO glad Rob will be there to help you with things.  

For me, the hardest thing lately is mentally overcoming the negative feelings I have from being sick.  I'm so worried about how food is going to make me feel, I'm giving myself the wrong self talk about it.  I need to keep telling myself how good it is for me, and not the opposite. Even the good foods.  I think it's just an anxiety thing that I'm struggling with lately.  Having to do with not feeling well and being short of some kind of mineral or nutrient.  Because a lot of people with lyme's I'm talking to struggle with anxiety.  I guess.  Do you guys find that true?
Posted by: Ribbit, Saturday, October 29, 2011, 4:30pm; Reply: 321
I have an idea that might help you, JJ, but it might sound less strange over the phone. *hint*

I was sitting here trying to figure out what you meant about falling over the log.  Thinking...gauge?  Like I didn't gauge where my foot was and where the log was? True, I usually have that problem. Oh, oh.  Gauge.  Ha. I get it.  No, I wasn't carrying anything or hunting anything when I tripped.
Posted by: Goldie, Saturday, October 29, 2011, 7:07pm; Reply: 322
I remember that LONG thread of last year, it was so frustrating not to be able to make sense with anything that was suggested. I am so glad you persevered.  All the best to all here.  Thanks for all the sharing.  It will help others and it makes me sorry about all my complaints over near nothing.
Posted by: JJR, Saturday, October 29, 2011, 7:09pm; Reply: 323
Quoted from Ribbit
I have an idea that might help you, JJ, but it might sound less strange over the phone. *hint*

I was sitting here trying to figure out what you meant about falling over the log.  Thinking...gauge?  Like I didn't gauge where my foot was and where the log was? True, I usually have that problem. Oh, oh.  Gauge.  Ha. I get it.  No, I wasn't carrying anything or hunting anything when I tripped.



When's a good time?  This is the second time you've told me this, I should hearken the call!!!!
Posted by: Ribbit, Saturday, October 29, 2011, 8:24pm; Reply: 324
Whenever.  Although later on this evening I might be driving to the next town up to get some free arugula and beets that were posted on craigslist.(woot)
Posted by: JJR, Saturday, October 29, 2011, 10:43pm; Reply: 325
Maybe tomorrow afternoon might be a good time.  Elizabeth is taking Jack to get his pictures taken.
Posted by: Kim, Saturday, October 29, 2011, 11:06pm; Reply: 326
Quoted from Ribbit
Y'all, I can't even concentrate enough to read all this.  It makes me mad at myself.  

Kim, you have to get better.  If that means having surgery, for goodness' sakes, get it done!  And that's coming from someone who is very anti-surgery.  (I'm so anti-surgery that when I nearly lost all my pelvic organs with the birth of my most recent baby, I refused to have surgery to have it all put back in place even though my body was becoming more and more toxic by the day.  I'm thankful to God for online networks of people whose knowledge and experience direct us to help.)  But wouldn't you rather know you'd done all you could?  I'm also very anti-antibiotics.  But when nothing else is working and you're desperate, you take the drugs!


You are right.  I have been trying to hang onto an organ that isn't helping me anymore.  In fact, my LLMD says it is hurting me.  He is a stickler for getting pain, inflammation and sleep exactly in order before he starts any antibiotics.  He said he can't get me well if those things are not in some kind of balance.

I have been fighting this disease a long time, although I didn't know that it was Lyme, and I think one becomes accustomed to being in pain all the time.  Also most doctors don't want to give you anything to help the pain because either they are afraid to prescribe a narcotic (or they don't work), or they think you are a hypochondriac.  

For now, I am sleeping all night without interruption for the first time in years.  The pain meds have me at a 4/5 instead of the usual 8-10.  The neuro symptoms have me in a panic over anything and everything.  

That is so hard to do when your husband has late stage neuro lyme too.  I don't know who is holding up whom.  By the grace of God, we will get through this.

What I look forward to every day is going into my sauna for 45 minutes and playing praise & worship music on my mp3 player.  I am working on being "Thank full" for what God has given me and for being with me through all this.  I just have to keep reminding myself, that I am not alone in this.  



Posted by: JJR, Sunday, October 30, 2011, 12:10am; Reply: 327
I hear you on all accounts.  My doctor is saying they don't want me to start killing the lyme and co infections too aggressively, until I get stronger.  Which seems kind of counter-intuitive.  But, whatever, I need to build up my system to a degree better than it is now.    
Posted by: Ribbit, Sunday, October 30, 2011, 12:10am; Reply: 328
No, you are certainly not alone. :K)  You hold each other up, Kim.  I will be praying for the both of you to be able to respond to each other with grace and patience.

That's fine, JJ.
Posted by: Ribbit, Sunday, October 30, 2011, 12:11am; Reply: 329
JJ, what my ND has been doing for the last year is strengthening my immune system so *it* can fight the Lyme.  She waited this long to introduce these homeopathics.  
Posted by: Spring, Sunday, October 30, 2011, 12:37am; Reply: 330
Quoted from Ribbit
JJ, what my ND has been doing for the last year is strengthening my immune system so *it* can fight the Lyme.  She waited this long to introduce these homeopathics.  


That is exactly what I did when I was so overwhelmed with candida. I was on a very strict diet with piles of supplements - as it turned out, all of them were fine for my blood type. I think Someone was definitely looking out for me there! After several months on all that I started the meds and was able to endure the die-offs without killing myself or someone else. The first thing I started taking along with the diet was probiotics. That was the only supplement I could stand in the beginning.
There is no telling how many people all of you are helping with your posts about how you are dealing with lyme's disease. I think all of you deserve some sort of special public service award!
:)
Posted by: JJR, Sunday, October 30, 2011, 3:04am; Reply: 331
You would've thought that's what I've been doing for the last 2-1/2 years of being with this particular doctor.  But actually, I think I was detoxing.  I was heavy metal toxic.  And I had yeast pretty bad.  And I had H.Pylori real bad.  I don't think any of these are completely wiped out by any means, but I think they are more under control now.  So, I guess it makes sense that now it's the immune system.  Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.
Posted by: Kim, Sunday, October 30, 2011, 11:25am; Reply: 332
Link to the IDSA protest in Boston about Lyme disease.

http://www.squidoo.com/lyme-patients-from-across-the-country-gather-in-protest-of-the-idsa-lyme-disease-guidelines
Posted by: Kim, Sunday, October 30, 2011, 11:29am; Reply: 333
Quoted from JJR
You would've thought that's what I've been doing for the last 2-1/2 years of being with this particular doctor.  But actually, I think I was detoxing.  I was heavy metal toxic.  And I had yeast pretty bad.  And I had H.Pylori real bad.  I don't think any of these are completely wiped out by any means, but I think they are more under control now.  So, I guess it makes sense that now it's the immune system.  Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.



As beaten down as we feel from time to time, it is the fight for our lives right now.  According to the Burrascano Lyme guidelines, those that continually show up for appointments feeling beaten down, never recover well.

So do what ever you must to get your "fight response" up and running.  We must do what ever we can to keep our attitude in the right place.

Posted by: Ribbit, Sunday, October 30, 2011, 2:27pm; Reply: 334
I remember being in that very dark place a year ago.  I have told myself over the years of postpartum depression that if I ever lost interest in my music and gardening, that was the end.  The music was the first to go.  And by the end of last summer, I didn't care about the garden anymore.  It scared me.  I honestly didn't care.  It didn't bother me that there were okra pods calling my name or butter beans ripe for the picking.  I couldn't go out there just to putter around or sit quietly.  I didn't care. And it scared me.  My apathy was frightening--looking back.  I figured the baby was old enough to survive with someone else as her mother, and I started wondering who DH would marry after I was gone.  And then I started seeing Dr. E and I began to get better.  Yeah, when the adrenals give up the fight, it's hard to drum up the resistance to keep kickin'.
Posted by: TJ, Sunday, October 30, 2011, 2:35pm; Reply: 335
Quoted from JJR
Because the immune system is so important.  And that might be the whole thing about red meats for me too.  For a long time, I didn't want them, I couldn't digest them.  And I was better off without them.  Now, I'm craving them, I'm eating them more, I'm not stopped up and my swami says I should be.  And I'm pretty sure red meats will boost your immune system.  At least if they're right for your type.  

So, I guess I need to start talking to my immune system.
At this point, I don't think my own immune system is enough by itself, no matter what supplements I take or what dietary practices I follow.  That's not to say that it doesn't help to have a strong immune system!  To that end, it's good to be back on the Nomad diet.  Considering the toxic conditions I was in back in NC, the Explorer diet was a good thing then, but once that trial was over it was time to move on.  Realizing that I actually had a "receptor" type immune system (instead of the Explorer "reactive" type) has made a big difference in how I approach diet and supplements.  I'm sad that I needed to spend so long taming down my immune system, but it was necessary at the time. :'(

I've been thinking about the ways in which Lyme cripples me.  I had my doubts, and I'm sure most others who know me do, too.  I still appear "smart", i.e. mentally sharp.  To a degree, I am, but only if I have all the time I need to think things through, or if I've already thought it out.  I can't think quickly, and thinking things through is a huge drain.  If I get caught with something with "time pressure", I often fall apart.  Day to day, I don't look like I have serious balance or coordination problems, but when I get tired I see them clearly.  It's like I can do most things I need to do to look "normal", but it takes a lot more energy and time to do them than it should.  I can (and do) put on a good front, but it's very very tiring.  But what else can I do?  I have to have it "together" to a certain degree to work and interact with other people, and I don't always feel like it's so much work.  Maybe the flare has died down during those times.  When I'm feeling wrecked, I do what I have to do and go home.  I don't look sick during those times, just irritable, tired, and mildly depressed.

I wish there was some good way to get in touch with my doctor and find out if he's doing the research on Lyme that I hope he's doing.  He's very busy with patients at his office, and if I pester him it will look like I "protesteth too much" and that I want a Lyme diagnosis too badly (hypochondriac).  It's hard to be patient, and I'm not sure what I'll tell him when I go back if he hasn't studied and come to the right conclusion on his own.  But I've done what's reasonably within my power to do (state my case and make him aware of the information he needs to study), and now I just have to trust in the Lord that he will prepare the way before me.
Posted by: JJR, Sunday, October 30, 2011, 4:58pm; Reply: 336
Psalm 139:14
I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.

I didn't sleep well last night because my legs and knees were aching to beat the band.  That is something I've never had before until this year.  It was bad enough to keep me up a good amount.
Posted by: Ribbit, Sunday, October 30, 2011, 9:42pm; Reply: 337
I was up till after 2 a.m. just laying there. >:(
Posted by: Ribbit, Sunday, October 30, 2011, 9:43pm; Reply: 338
TJ, I'm the same way.

JJ, I'm at home.  I just couldn't get to the phone that fast.  Talk longer next time.   ;)
Posted by: TJ, Monday, October 31, 2011, 1:22am; Reply: 339
The Physician as a Patient: Lyme Disease, Ehrlichiosis, and Babesiosis — A Recounting of a Personal Experience with Tick-Borne Diseases - a doctor's experience with Lyme disease.

Quoted Text
The [infectious disease] specialist was barely polite. His attitude was dismissive and annoyed. He implied I was wasting his time. The ring had faded by the time I got an appointment. He said it was not possible for the same person to have had two Lyme disease bull's eye rashes over time. He said he would not treat non-symptomatic deer tick bites, even if he were convinced the rash was Lyme related. Anyway, “Only 10% of those bitten by infected ticks get Lyme disease.”

Quoted Text
In my first ever trip to an Emergency Room as a patient, I begged the doctors there to admit me—they refused because my “numbers were good.” Next day, my cardiologist admitted me to another hospital for evaluation. I tried to explain my prostration in the presence of “good numbers” by rambling on to the admitting doctor about trivial stresses. I realized much later that I was trying to make sense of it myself, I was grasping at straws for an explanation of what was happening to me. I had extreme body weakness and severe multiple, specific muscle pains and tenderness that I only can describe as unearthly.

I really identify with this last one, especially the "psychologic timidity".
Quoted Text
Then occurred a dramatic lack of confidence in doing even the routine things I love to do and still was able to do—a daunting physical sense of psychologic timidity. Seeing the usual full day's number of patients was unthinkable because of this alone. I felt as if the self I knew was dissolving. I found myself impulsively irritable at inappropriate times.
Posted by: JJR, Monday, October 31, 2011, 3:08am; Reply: 340
Yeah, those last two I've experienced in full force.  It's not pretty.  But regardless, I'm trying to have joy.
Posted by: Spring, Monday, October 31, 2011, 11:02am; Reply: 341
I really identify with this last one, especially the "psychologic timidity". TJ
Quoted Text
Then occurred a dramatic lack of confidence in doing even the routine things I love to do and still was able to do—a daunting physical sense of psychologic timidity. Seeing the usual full day's number of patients was unthinkable because of this alone. I felt as if the self I knew was dissolving. I found myself impulsively irritable at inappropriate times.

I can really relate to that feeling too, TJ. I can create patterns and make decent looking garments from them, but I got so bad with the feelings described here in this quote that I would sit at my sewing machine and cry because I didn't have the courage to attempt anything. I would hang garments in view that I had made before and think to myself, "Did I really make that?" If I finally did make an attempt to sew I would be in a cold sweat. I completely lined the garage with a wall covering when I was a lttle better but not a whole lot. It was over a year before I could walk through there and actually be convinced that I had done the job myself. It seemed like soneone else had done it. I had no confidence in myself whatsoever.

One question I would like to ask all of you is this: Do you take B-vitamins? I tried to take B-12, 1000 mcgs., separately from food, etc., the way the folks at NAP suggested but it does not work for me that way for some reason that I don't understand. A horrible feeling would come over me that is hard to describe but it was basically disabling to the point that I would have to lie down. I found out, though, that as soon as I would eat something the feeling would go away. So I tried a little experiment. Now, I take all my B-vitamins together, separately from food, etc., and I have gradually increased the NAP B-12 until I am around 400-500 mcgs. per day. I intend to keep increasing it until I get to 1000 mcgs. - if no problems turn up.  This regimen has been a tremendous help to  me with the panic attacks etc., and I feel so much calmer and self-assured. One thing I would like to mention is that I am very careful about the balance of the B-vitamins and go to a bit of trouble splitting pills so I can get the right one that works for me. I suggested this way of taking B-vitamins to one of my sisters and when I saw her recently I could not believe how much better she seemed and so much happier and relaxed! Before, she had been otherwise healthy as a horse except for those panic attacks! Just thought I would mention this.........
Posted by: JJR, Monday, October 31, 2011, 3:19pm; Reply: 342
I've never been told to take B vitamins away from meals.  Huh.  I always take mine with meals.  
Posted by: Spring, Monday, October 31, 2011, 6:41pm; Reply: 343
Quoted from JJR
I've never been told to take B vitamins away from meals.  Huh.  I always take mine with meals.  


I always did before, but the benefits were not even close to what they are now. Not remotely. Dr. D. recommends taking it  away from food in his protocols.
Posted by: JJR, Monday, October 31, 2011, 9:32pm; Reply: 344
I never noticed that on his bottles.
Posted by: Spring, Monday, October 31, 2011, 9:58pm; Reply: 345
Oh, dear........... It is in the Protocols.
Posted by: TJ, Monday, October 31, 2011, 10:47pm; Reply: 346
Today is day 7 on antibiotics.  It's interesting to note that, when I saw the doctor last week, I was well on my way back out of my latest funk -- or should I call it a flare?  Anyway, by Friday I was going back down again.  Should I be sad?  Should I be happy?  It's not fun to be feeling worse and more disabled, but on the other hand, if I feel worse on antibiotics, that's another indicator that there is a bacterial problem involved, and more evidence to support the Lyme theory; otherwise the antibiotics shouldn't make me feel better or worse.

Quoted from Spring
One question I would like to ask all of you is this: Do you take B-vitamins? I tried to take B-12, 1000 mcgs., separately from food, etc., the way the folks at NAP suggested but it does not work for me that way for some reason that I don't understand. A horrible feeling would come over me that is hard to describe but it was basically disabling to the point that I would have to lie down. I found out, though, that as soon as I would eat something the feeling would go away. So I tried a little experiment. Now, I take all my B-vitamins together, separately from food, etc., and I have gradually increased the NAP B-12 until I am around 400-500 mcgs. per day. I intend to keep increasing it until I get to 1000 mcgs. - if no problems turn up.  This regimen has been a tremendous help to  me with the panic attacks etc., and I feel so much calmer and self-assured. One thing I would like to mention is that I am very careful about the balance of the B-vitamins and go to a bit of trouble splitting pills so I can get the right one that works for me. I suggested this way of taking B-vitamins to one of my sisters and when I saw her recently I could not believe how much better she seemed and so much happier and relaxed! Before, she had been otherwise healthy as a horse except for those panic attacks! Just thought I would mention this.........
Spring, I take a 2500 mcg sub-lingual methyl-B-12 lozenge in the morning, if I remember to.  At lunch, I take a multivitamin that has my B vitamins in it.  I have done some experimenting with B vitamins, and I think I'm getting what I need right now.  I don't feel an acute difference on days I forget my B-12 from the days I take it.  If you react to B12, it may be a good idea to do some research on the possible adverse effects of B12 supplementation.  I am happy that it's helping your sister!

I looked at a few of the protocols as you mentioned.  I only saw B12 in those I looked at, but it does recommend B12 on an empty stomach.  Were there "away from food" recommendations for other B vitamins?  When I take my lozenge it's usually in the morning before work and before I eat.
Posted by: Kim, Monday, October 31, 2011, 11:59pm; Reply: 347
TJ- My lyme doctor has me injecting methylcolbalamin twice a week.   With lyme, we need more than healthy people and we usually don't absorb food and supplements well.  

Maybe you could ask your doctor if you might do better with injecting B12.
Posted by: TJ, Tuesday, November 1, 2011, 2:45am; Reply: 348
Quoted from TJ
I don't feel an acute difference on days I forget my B-12 from the days I take it.
It's still helping, I just don't notice if I miss a day. :)
Posted by: Spring, Tuesday, November 1, 2011, 3:39am; Reply: 349
TJ, I was going by your previous post about the feelings you have and wondering if B-vitamins would help that. After I started taking all my B's at one time away from food, I don't have any bad feelings at all, and stopped having panic attacks. There is some info on this Medline site about Vit. C causing a problem with absorption. Maybe a little mini refresher course about what the B-vitamins actually do for us would help to relate to any symptoms we have that they might be able to help. Hope this makes sense - I have been up since 5:30 this AM and I definitely am getting sleepy! :)
http://www.nlm.nih.gov/medlineplus/druginfo/natural/926.html
Posted by: TJ, Wednesday, November 2, 2011, 4:42am; Reply: 350
I have two more symptoms to note today.  This morning, my right shoulder joint had a strange soreness in it.  It's gone now.  I can't think of any good mundane reason for it.  The other is that I noticed this evening that my left foot is breaking out with something like athlete's foot again.  Especially, there is a red sore bump in the middle of it.  It looks like a zit, only on the bottom of my foot.  Weird.  Otherwise, I've had fair energy and mental clarity today.
Posted by: Goldie, Wednesday, November 2, 2011, 12:29pm; Reply: 351
I have been told that the right shoulder is often more painful.  

I just checked here in the whole thread. There are seemingly no more then 17 posters including Lola and my self and a few who contributed only once....   so that makes me think there are about 8 people with Lyme here. I wonder if a conference call together might be interesting?

I would be willing to set it up.    
Posted by: JJR, Wednesday, November 2, 2011, 3:51pm; Reply: 352
What would be the focus of the discussion that we're not doing here?
Posted by: Kim, Thursday, November 3, 2011, 10:48pm; Reply: 353
I have pre-op tests tomorrow and surgery to take out my gallbladder is Monday, November 7th.  Prayers would be appreciated.  
Posted by: Chloe, Thursday, November 3, 2011, 11:07pm; Reply: 354
Quoted from Kim
I have pre-op tests tomorrow and surgery to take out my gallbladder is Monday, November 7th.  Prayers would be appreciated.  


I will be keeping you in my prayers, Kim...Wishing you the best possible outcome and a speedy recovery.  {{{{hugs}}}}

Posted by: Chloe, Thursday, November 3, 2011, 11:12pm; Reply: 355
Quoted from Goldie
I have been told that the right shoulder is often more painful.  

I just checked here in the whole thread. There are seemingly no more then 17 posters including Lola and my self and a few who contributed only once....   so that makes me think there are about 8 people with Lyme here. I wonder if a conference call together might be interesting?

I would be willing to set it up.    


Goldie, do you have Lyme?  I am wondering about the necessity for a conference call.  It seems to
me that we're doing a pretty good job of communicating with one another right here. Speaking
for myself only....I prefer not to be included in a conference call.

Posted by: TJ, Friday, November 4, 2011, 1:45am; Reply: 356
No conference calls for me, either.
Posted by: deblynn3, Friday, November 4, 2011, 2:14am; Reply: 357
Quoted from Kim
I have pre-op tests tomorrow and surgery to take out my gallbladder is Monday, November 7th.  Prayers would be appreciated.  


I'll be thinking and praying for your quick recovery.  Don't forget the surgery protocols for your type.

Best wishes :)
Posted by: Lola, Friday, November 4, 2011, 5:57am; Reply: 358
ditto
Posted by: Kim, Friday, November 4, 2011, 10:53am; Reply: 359
I am already taking bromelain and vitamin e and can get the other two supplements today.  It won't be two weeks ahead of surgery for the gotu kola and the horsetail, but I can take it for two weeks afterward.

Thanks for reminding me! ;)
Posted by: Goldie, Friday, November 4, 2011, 11:13am; Reply: 360
All the best wishes for your surgery, I am glad you will be feeling at ease soon.. worry is not a good thing, being proactive is the only way to live.  8)    
Posted by: JJR, Friday, November 4, 2011, 3:12pm; Reply: 361
That's my Dad's birthday.  I'll be saying prayers for you!!!!!!!!!!!!!!!!!!!  God will guide their hands.  It will be just fine.  
Posted by: JJR, Friday, November 4, 2011, 7:00pm; Reply: 362
It's funny, yesterday, it was all rainy and stormy and when I woke up, my whole body ached and I felt lousy.  I felt better once I got going.  But today, it's nice and clear and sunny, and I woke up calm and barely any aches.  I know I keep saying this, but it's bizarre how much the weather messes with me.  It just seems CRAZY!!
Posted by: TJ, Saturday, November 5, 2011, 2:05am; Reply: 363
So, I got downsized today. :o  The company president met with me at the end of the day to tell me.  We lost our biggest customer about a month ago, and they took about 25% of our business with them.  Now the company doesn't have enough work to keep everyone working profitably. :(

I'm not sure what to think about this, and I certainly don't know what to do, but perhaps there is a roundabout link to Lyme disease.  If my doctor decides to go forward with the Lyme diagnosis and treatment, I may find myself unable to work for a while, and not needing to work will make me less hesitant to press forward with an aggressive treatment approach.

There is a good side.  I'll be on the payroll until the end of the month, which mean two more paychecks.  The president assured me that I had done my job well and that he'd be glad to give a good reference, or perhaps to rehire me if business picked up again.  Since I didn't get "fired" or voluntarily quit, I'll qualify for unemployment benefits.

I guess tomorrow I'll have a bit clearer idea of what needs to happen next.  My head is still spinning right now. :-/
Posted by: Chloe, Saturday, November 5, 2011, 3:33pm; Reply: 364
Quoted from TJ
So, I got downsized today. :o  The company president met with me today at the end of the day to tell me.  We lost our biggest customer about a month ago, and they took about 25% of our business with them.  Now the company doesn't have enough work to keep everyone working profitably. :(


I'm so sorry, TJ :(  I hope something wonderful will come your way.  It's been said "when one door
closes, another opens".  Perhaps the universe has bigger and better plans for you right now...Wishing you the best of luck however this all turns out.  Wanted you to know I'll be thinking
about you and sending good thoughts and prayers your way!  :)

Posted by: Goldie, Saturday, November 5, 2011, 5:17pm; Reply: 365
Ditto.. all the best..
Posted by: JJR, Saturday, November 5, 2011, 11:14pm; Reply: 366
I'm so sorry to hear this TJ.  I'll be praying for you.

I was in the ER last night.  Hehehhe.  I went out to go get some Panera, and I all of sudden had tons of anxiety.  I thought it was just that, but I got all inflammed and had flank and upper torso pain.  I wasn't real bad off, but I felt like something was wrong.  So, they did an EKG which was completely fine and they said there was blood in my urine, but no infection.  So, I went home.  There's no need to push it with more tests.  This happened to me last year, around the same date.  And the year before.  I think it's part of this stupid lyme thing.  It's like a virus rears it's ugly head at the same time every year.  When we look at the dates, they are only  few days apart as to when I have this happen.  

Anyone else get this?
Posted by: Chloe, Sunday, November 6, 2011, 2:27am; Reply: 367
JJR, I've had some of your symptoms in the past.  Blood in urine with no infection.  Panic. Wound up
in the ER more than once....stayed for hours with an IV drip of electrolytes....For some odd reason, all of this would coincide with panic but also severe weakness and super low electrolytes....I couldn't stand on my feet or hold my head up if I sat down... Do you need to be treated for blood in your urine?  Do you have kidney stones?  Hope you feel better!  
Posted by: Goldie, Sunday, November 6, 2011, 5:06am; Reply: 368
I am not LYME but I do get ill seasonally.. I have for years not known that I am allergic to Oaks, until I realized that I go to the doctor every OCT for some darn cold over and over, year after year.. Yes some things are SEASONAL.

My friend with Lupus/Sickel cell anemia and gets sick starting in OCT and by Dec she goes to hospital for a transfusion.. NOW I remind her of that and at least she does not have to FEAR that she is SICK again, she is accepting the CYCLING of it.  Recognizing some such things makes for much peace of mind.  Keeping track helps for next year.
Posted by: Chloe, Sunday, November 6, 2011, 3:07pm; Reply: 369
I just wanted to add this very comprehensive website link to this Lyme thread.

http://www.curelymedisease.com/
Posted by: JJR, Sunday, November 6, 2011, 5:44pm; Reply: 370
Quoted from Chloe
JJR, I've had some of your symptoms in the past.  Blood in urine with no infection.  Panic. Wound up
in the ER more than once....stayed for hours with an IV drip of electrolytes....For some odd reason, all of this would coincide with panic but also severe weakness and super low electrolytes....I couldn't stand on my feet or hold my head up if I sat down... Do you need to be treated for blood in your urine?  Do you have kidney stones?  Hope you feel better!  


Yeah, the other times I got an IV drip too.  This time I didn't because my vitals were just not as bad as the other times.  So, I guess that's a good thing.  But my insides have been aching.  Especially in the kidney area.  And I get shortness in breath come and go.  That, my doctor says is lymph fluid overwhelmed and sluggish.  They had me on a spleen supplement for a while, but took, me off 2 weeks ago.  I have a feeling I need it again.  

But yeah, this has been going on for years in November or right around my son's birthday (october 31st), I start to feel really bad.  It will probably last for a couple of weeks.
Posted by: Kim, Sunday, November 6, 2011, 9:43pm; Reply: 371
This is it guys!!  I have to be at the hospital at 7:25 am tomorrow morning and surgery is 9:25 am.  

Wish I could stop shaking. :(
Posted by: Chloe, Sunday, November 6, 2011, 9:50pm; Reply: 372
Quoted from Kim
This is it guys!!  I have to be at the hospital at 7:25 am tomorrow morning and surgery is 9:25 am.  

Wish I could stop shaking. :(


Kim, my thoughts and prayers are with you right now......and throughout your surgery.  Can you
try meditating?  Alternate nostril breathing?  I'm someone who easily goes into panic mode and
shaking is a hallmark for me.

Magnesium oil, if you have it is soothing.  So is SIp Right Tea for type A...chamomile, Holy Basil,
tryptophan.  I sometimes take them all.  

Wishing you well and sending you many, many  {{{{{hugs}}}}}} Hope surgery goes well and that you have an easy recovery!!!

Breathe!!!!!   (holding breath leads to hyperventilating)

PS. I'm quite sure you have little time to be reading this right now...but for all who easily become
stressed and panicked, there is a correlation to acidity.  I find if I'm starting to feel ultra stressed, I put some green powder in water and drink it.  If I can get myself alkalized, I usually start to feel calmer.  For blood
type A, it is especially important to think about trying to staying alkalized.

http://neuroskeptic.blogspot.com/2009/12/in-brain-acidity-means-anxiety.html





Posted by: JJR, Sunday, November 6, 2011, 10:15pm; Reply: 373
My prayers are with you!!!  I wish I could say something that calms your fears.  There's all kinds of scripture, like Psalm 23, and reading it can help.  But I know that it can be very difficult to overcome that.  When something like this happens for me, I tell myself I can back out if I want, and that helps my mind.  Definitely not focusing on it would be good.  Like play some games or go on the computer or something.  I know, easier said than done.

  God is with you.

Oh yeah, Phillipians 4:4 is awesome and directly talks about something like this.  
Posted by: Goldie, Monday, November 7, 2011, 1:21am; Reply: 374
My BEST wishes go with you that all should be over and done with as soon as possible.  8)
Posted by: deblynn3, Monday, November 7, 2011, 3:07am; Reply: 375
Kim, you have made up your mind, you know this is the right thing for you to do, you understand that this is going to help you heal. Relax, meditate on how this is helping you, visualize how much better you will be once this is over.

All our prayers and thoughts will be only for your recovery.

Cheers to your recovery.  I like Isaiah 35:3-8
Posted by: ieatmeatnlikeit, Monday, November 7, 2011, 7:15am; Reply: 376
The other night I was told about a truly off the wall Lyme protocol. I'm waiting to get the details from the person but thought I'd share what I was told so far and see what folks think considering it is so off the wall but did evidently work for this person who by the way resisted doing it even though another person kept persistently advising it until they did it just to sort of stop the pestering to just do it.
Nine days of nothing but whole milk, then whole milk, cranberry, cayenne and slippery elm for a few more days. That's all I (can remember) know right now.
The milk in the gut draws all the spiroquits(?) out of the body and into the gut. The herbs kill them there and out they go. I can not imagine only milk in me for nine days but I suppose it has been done before in other cultures. The person who told me this is glad she finally listened to the pest.
I'll add more to this as soon as I know more. Last related detail: An expensive west coast homeopath sets up shop on the east coast to diagnose and render this treatment.
My personal comment: I just read every post to make sure this wasn't mentioned before because I forgot it when I first posted here a while back. I might be wrong but I didn't see any mention of INFRARED Sauna sessions. Or hyperbaric (?) chambers. Both are supposed to be ways to get started when you just can't seem to move yourself around much anymore.
iemnli
Posted by: JJR, Monday, November 7, 2011, 3:41pm; Reply: 377
Might work for someone.  
Posted by: JJR, Monday, November 7, 2011, 6:06pm; Reply: 378
Kim, I was praying for you this morning and can't wait to hear about how it went.



My Doctor's assistant was telling me about "Earthing" today.  It's funny because she brought it up before I did.  I was meaning to ask her because of what I heard here about it.  Thanks for planting the seeds you guys!!!!!  I was curious about it when somebody on here was talking about it in a thread somewhere, and now I'm super interested. I forget what thread it was.  Huh.  
Posted by: Goldie, Monday, November 7, 2011, 6:55pm; Reply: 379
Quoted Text
Nine days of nothing but whole milk, then whole milk, cranberry, cayenne and slippery elm for a few more days. That's all I (can remember) know right now.


NOW if this would work, then the person would get a Nobel Prize in Medicine!..  as crazy as it sounds.. it could work.. worth a try.. worth for someone in a lab trying this on mice..

I can see how this might work.. (Possibly)  Tapeworms are interested in B12 I think if I remember correctly.. if they dont get enough then they attack the meat on the body.. If something similar might happen here what a great discovery this would be.. I mean even if one had to do it 4 times a year, it could be do-able..

Yes get more info on this .. I will hear or at least listen..    
Posted by: ruthiegirl, Monday, November 7, 2011, 8:25pm; Reply: 380
Quoted from JJR
Kim, I was praying for you this morning and can't wait to hear about how it went.



My Doctor's assistant was telling me about "Earthing" today.  It's funny because she brought it up before I did.  I was meaning to ask her because of what I heard here about it.  Thanks for planting the seeds you guys!!!!!  I was curious about it when somebody on here was talking about it in a thread somewhere, and now I'm super interested. I forget what thread it was.  Huh.  


I hope these links work. I'm copying and pasting the results from putting the word "earthing" into the search engine on this site.

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1319746681/s-108/highlight-earthing/#num108

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1200430012/s-31/highlight-earthing/#num31

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1318356776/s-22/highlight-earthing/#num22

I reserved this book from my library, but I'm still waiting for my copy.
Posted by: Kim, Tuesday, November 8, 2011, 4:59pm; Reply: 381
Still in hospital with complications.  Two stones in bile duct have to come out laparoscopically down the throat.  they go through stomach into duoddenem.  doing that this afternoon.  Won't go home till tommorrow.
Am miserable.  No food since Sunday.
Posted by: TJ, Tuesday, November 8, 2011, 5:23pm; Reply: 382
Hang in there Kim: it will be over soon, then you can reap the benefits!
Posted by: ruthiegirl, Tuesday, November 8, 2011, 5:24pm; Reply: 383
Hugs Kim. I wish you a speedy recovery.
Posted by: JJR, Tuesday, November 8, 2011, 6:31pm; Reply: 384
I'm thinking and praying for you!!!!
Posted by: Chloe, Tuesday, November 8, 2011, 6:58pm; Reply: 385
Sending you my prayers and best wishes, Kim...{{{{{{hugs}}}}}
Posted by: Ribbit, Tuesday, November 8, 2011, 7:10pm; Reply: 386
Kim, I'm praying for you as well.  Please keep us updated as things happen.  Are you going to be allowed to eat your own food?  I hope they don't bring you jello and junk.....

JJ, I'm sorry to hear about your ER trip. :(  Do you have Rescue Remedy? I'd keep it on hand if I were you and take drops when you start feeling panicky.  Also, a quick fix is Emergen-C packets.  There's one kind that doesn't have fructose in it, and we use it for times when we just feel "off" or are in the middle of an out-right, full-blown "crash".  It restores the electrolytes very quickly.  

TJ, at least you don't have to listen to loud music now. :P

I went off all my supplements so I'll have everything out of my system before I go see the LLMD.  I wondered how fast I'd go downhill, and it's interesting to watch symptoms pop back up one after another. What's surprising to me is the order in which the Lyme symptoms are returning.  The first thing to come back was fibromyalgia-like pain in my left arm.  It's not constant, but when it comes on, it's excruciating.  The always-present (since my paralysis episode 18 months ago) tingling in my left hand is stronger and I find myself rubbing my hands and arms to try to relieve the pain. I keep pulling on my wrists to "pop" them to relieve pressure.  The lower lip quiver has returned and if I'm lucky I might get the Bell's Palsy diagnosis as a co-infection thingy.  It's like a little muscle twitch in part of my lip.  It happens a couple of times a day--enough for me to note that it's back.  My feet and ankles are puffy in the mornings and my legs are so stiff I can't go downstairs until I walk around for a few minutes---the way I used to be every morning.  My  memory is lapsing worse and I'm beginning to avoid driving very far because I don't want to forget where I am.  It's not anything so bad as it was a year ago (getting lost even with the GPS), but before the next two weeks are up, it might get to that point again.  I'm trying to document things as they come back so I have a list of symptoms before my brain shuts off entirely.

Spring, you mentioned not being able to sew.  I love sewing, but I packed up my machine a while back because I could no longer thread the needle or remember how to wind the bobbin.  My hands would not do what I wanted them to do.  I couldn't think well enough to follow the steps putting something together.  I've been able to sew again lately, but my left hand does misbehave some.  I understand what  you're saying about looking at something you've made and not believing you actually did it.  Because of my memory loss, I will look at old artwork or read something I wrote and have no recollection of drawing/writing/sewing it.  Most of the time I'm quite honestly impressed that I did something so well.  I just wish I could remember doing it....you know?  

I pulled a box of photos out of the basement and realized we haven't had family portraits done since the baby was born---over two years ago now.  I asked nearly with tears in my eyes why we hadn't had them done.  If feel like I've missed out on two years of their lives by not having pictures done.  DH said, "Darlin' we've been busy trying to keep you going.  Plus, you didn't want pictures taken of you when you were 180 pounds." Oh yeah.  That.  I like being less than 130.  I like being less than 125.  How vain is that?

I'm living each day as it comes.  Because I can't feel the passage of time (I've never been able to), I feel like I'm stuck in this spiraling repeat of events.  I'm always caught off-guard by the mundane, and have to remind myself that if the clock says it's 5, it means I need to start supper even if I honestly feel like I just ate breakfast.  I rely on my oldest daughter sometimes to tell me what day of the week it is.  I used to call DH at work and ask him what day it was (and I don't mean the date--many people don't know the actual date, but I think most people know what day it is), but now that I've taught E to read a calendar, we keep each other in tune with what the day is.  It's helped her stay on task with daily activities (like whose day it is to feed animals, because I forget they have to eat until they start meowing/clucking/etc.) and it helps me feel time passing.  I know it's bad when I still can't figure out the day even after studying the calendar.  I'm better than I was.  At least now I can figure it out if I get confused.  There were several months a year and a half ago where I was so clueless it wasn't funny.  Now I can laugh at myself.

Unfortunately DH is beginning to show some ADD, which right now we can joke about, but it's only to stay sane.  I say, "Hey.  I'm allowed to have ADD, but you're not.  Somebody has to keep up with things."  He's got the hyperactivity part (tamed by the diet), but he's always had a good memory, and I rely on that.  I don't want to admit that he has Lyme too.  But chances are, growing up in New York as a Boy Scout.....

JJ, there's an article in this month's National Geographic about that ~5,000 year old body they dug up that has the Lyme bacteria--the one you mentioned a few weeks ago to me.  I asked DH about it and he said, "Yes, it's been around, it was just *tampered with* in Germany and on Plum Island."

I may have mentioned this before, but I can't remember.  None of the children showed signs of Lyme at birth.  On a daily basis I don't notice anything out of the ordinary (except DS's ADD and DD#2's speech delays) but I think that's because I haven't had anybody to compare them with.  We're now part of a homeschool group where I see them interact with similar-aged peers.  Oh my. My oldest can't keep up energy-wise.  She has a lot of fun, but when we get home she crashes and has to recover for at least the rest of the day.  Sometimes the whole next day.  I told her, "Don't you realize that if you were in a typical school, you'd be doing this from 8:30 a.m. to 3 p.m. and then have a couple of hours of homework on top of that?  Every single day?"  She told me she would never survive, and I agree.  She wouldn't be able to handle the work load.  As it is, we only do the "school day" with the homeschool group at most once a week.  And it's only from 10-3 or so.  I guess I'm realizing that she's not doing as well as I thought she was.  Even though socially and academically she's great, she is physically smaller and weaker than her peers.  She's almost 9 and she's smaller than some 6 year-olds I know.  My son is 6 and he can't keep up on the playground.  He seems normal until you put him with his peers, and then you see that he can't play as long or as hard and he just does not have the physical strength the others do.  And he pulls at his shirt and says he can't breathe.  I'm afraid he has Type 1 diabetes and I'm not prepared to start trying to deal with it.  My 4 year old is physically exceptionally strong and has been since birth.  She reached her milestones way early, but she's dizzy, clumsy and difficult to understand.  When we found out she was an O and not the B we thought she was, I took her off dairy and within a few weeks' time she's less dizzy, able to carry a tune singing, and she's learned a few letters.  Before, they were a total mystery to her.  Dairy is bad, bad, bad for her but we didn't know it because as a B, she was supposed to eat it...I thought.  The youngest appears to have the least problems, but she's petite and skinny.  I'd like to see her and her oldest sister gain some weight.

All that to say that I thought the children were okay until we joined this homeschool group two months ago and I started comparing them to other kids.  Now of course these other kids are high on sugar and artificial junk, and maybe that's what's keeping them going. But it's embarrassing to have to leave events early or slow down a group on a field trip because we, the health food freaks, can't walk that fast.  >:(
Posted by: deblynn3, Tuesday, November 8, 2011, 7:10pm; Reply: 387
{{{{hugs}}}}  I'm sending these to everyone.  
Posted by: TJ, Tuesday, November 8, 2011, 7:37pm; Reply: 388
Quoted from Ribbit
TJ, at least you don't have to listen to loud music now. :P
Yes, another silver lining.

Quoted from Ribbit
All that to say that I thought the children were okay until we joined this homeschool group two months ago and I started comparing them to other kids.  Now of course these other kids are high on sugar and artificial junk, and maybe that's what's keeping them going. But it's embarrassing to have to leave events early or slow down a group on a field trip because we, the health food freaks, can't walk that fast.  >:(
I have a hard time selling people on BTD for the same reason. ::)

Quoted from Ribbit
I went off all my supplements so I'll have everything out of my system before I go see the LLMD.  I wondered how fast I'd go downhill, and it's interesting to watch symptoms pop back up one after another.
I think it might be a good idea for me to do the same thing before my next visit.  It is a scary prospect...
Posted by: TJ, Tuesday, November 8, 2011, 8:36pm; Reply: 389
I just went through all my supplement I take regularly.  Here they are:In addition, I currently take 200 mg doxycycline, 10 mg Prozac, and 300 mg Lamictal.

Going forward, until I see the doctor again, I'm going to try surviving on just the Genoma Security (because it helps the antibiotic be more effective), the Turkey Tail (because it has antibacterial properties), and a probiotic (to counter the damage the antibiotic is doing to my gut flora); in addition to the medications.

The rest of the supplements are mostly there so I feel and function better.  It will be interesting to see how this works out.  In the meantime, I'm going to try moving up my doctor's appointment so I have a few days after seeing him and before going home to try to get my supplements back in me and be fit for travel.  This already seems like a scary experiment, but he needs to see how I really am!
Posted by: Ribbit, Tuesday, November 8, 2011, 11:23pm; Reply: 390
Quoted from TJ


I have a hard time selling people on BTD for the same reason. ::)



Right.  [Insert whiny voice] "If the diet is so great, why do you have all these health problems?"  [Insert reasonable voice] "Well, just think how bad off I'd be without it.  You didn't know me before."  Sounds lousy.
Posted by: Ribbit, Wednesday, November 9, 2011, 12:26am; Reply: 391
In addition, my stomach hurts constantly, the nausea is only a matter of degrees, and I have ZERO appetite.  I keep forgetting to eat meals.

And I made the big mistake of eating some whipped cream last night.  It was left over from something I made it for (had a bunch of people over) and .... ugh .... Horrible.  I think Cool Whip wouldn't have made me feel this yucky.
Posted by: TJ, Wednesday, November 9, 2011, 2:32am; Reply: 392
Quoted from Ribbit
And I made the big mistake of eating some whipped cream last night.
Mmmmm, aerated fat. (drool)
Posted by: JJR, Wednesday, November 9, 2011, 3:27am; Reply: 393
Wow, no wonder we all stick together so tightly and this thread has lasted so long.  We alls gots us some problems.  It sure does make it easier to have people we can vent to and that seem to understand.  TJ, that's quite a list.  But I think Leanne and I both take that much, or have at some point or another.  For 2 years I was on that much and more, and then I would do several oils every day to help too.  For some reason though, my body doesn't want the oils any more and I don't really like overdoing the supps.  Small inputs do a lot for me.  My Doctors assistant THINKS that it's my body not wanting band aids, but it wants to heal itself, and those things just overload it.  And that's how I feel.  Hopefully that is correct.  I pray that my body will start rebuilding sometime soon.  It still seems like it's in a bit of a detoxing cellular mode.  Among other things.

Leanne, if you need someone to vent to, I'm here and you can give me a ringy dingy.  I'm hoping Rob's around to get you through this though.  
Posted by: Ribbit, Wednesday, November 9, 2011, 1:15pm; Reply: 394
JJ, yes, Rob's here (well, I mean not at the moment, but he's at least local).  Thank God they canceled his trip to MS for this week.  (pray)

Re: spleens.  I misunderstood where my spleen was.  After talking with JJ, I understand my back's anatomy a little better, and I see that the area where my spleen is hurts non-stop.  Especially in the early  morning hours, it will hurt quite severely and I wake up 90% of the mornings with it hurting.  Changing positions doesn't always help. If I get out of bed, sometimes it will stop instantly, but sometimes it hurts a little while longer.  My old chiropractor had thought it was intercostal muscles (between ribs).  My current chiro, when I mentioned it to him last week, said it's likely those muscles, but it could be spleen or kidney stones.  I'll ask my ND next time I see her.  It has continued to hurt this morning after I woke up and moved around.  How does one flush out one's spleen?  Or kidneys, for that matter?  Should I start another thread about that?  I have no idea where to start.
Posted by: Goldie, Wednesday, November 9, 2011, 2:16pm; Reply: 395
Ribbit.. You are a trouper!!  wow .. what a story and history.. I can see where KNOWLEDGE has made all the difference in your fear and reality.   All best wishes for you.  
Posted by: nowishow, Wednesday, November 9, 2011, 8:16pm; Reply: 396
Red Root tincture works really well for my spleen pain. The first time I used it within an hour I felt this bubbling sensation in the spleen area. The pain decreased every day and within a week the pain was gone.  :)
Posted by: Ribbit, Wednesday, November 9, 2011, 8:47pm; Reply: 397
I just looked it up and it says Red Root is good for asthma and lymph drainage too.  Sounds like something I need.
Posted by: nowishow, Wednesday, November 9, 2011, 9:49pm; Reply: 398
About memory - I've lost so many of my memories in the last 10 years. I didn't even remember two visits from a close friend (from back east). Can't remember dates or days either. I'm so much better now, but still have trouble when my symptoms are stronger. I also have a hard time finding words and lately have started to stutter when I'm feeling really bad. That's new.

About ability - I still feel like I can do something that I can't anymore (or right now). I start trying to do a task that would have been no problem for me and I keep getting surprised that I'm unable to do it. A couple of months ago I was raking and picking up small branches in the yard and I tried to break a stick in half by putting one end into the ground and bending the other end until it broke. Well, I ended up falling flat on my face! It was the oddest thing. I've done that probably over a thousand times in my life but now my body completely forgot or was unable (maybe both).

I'm working seven hours a day now, but I still have to lie down in my office twice a day to make it through the day and I rest most of the night after I get home. I take about 3-4 times the amount of supplements on TJ's list. It's a little insane, but every time I stop one I notice - so I keep taking them. I'm going to try added some enzymes and see if it helps me absorb the supplements better. Maybe I won't have to take so many then!

I am getting better, but it's so very slow that I often wonder if I will ever get well. Or by the time I get well I'll be too old to do any of the things I used to enjoy.

One day and a time, right?  :)
Posted by: TJ, Wednesday, November 9, 2011, 10:33pm; Reply: 399
Nowishow, have you looked for supps that don't have stearates or stearic acid in them?  That stuff is believed to reduce absorption.
Posted by: nowishow, Wednesday, November 9, 2011, 10:41pm; Reply: 400
Quoted from TJ
Nowishow, have you looked for supps that don't have stearates or stearic acid in them?  That stuff is believed to reduce absorption.


Yep I stay away from that, I usually feel naseous if I take a supplement with those additives in them. Thanks for the advice.
Posted by: Kim, Thursday, November 10, 2011, 12:30am; Reply: 401
Finally got out of the hospital today.  This particular hospital had great service in their cardiac wing when my husband was there a few times, but on the surgical floor, they actually are horrible.

It took two hours to get anything from them.  Because they found stones in my bile ducts, there had to be a second procedure done on Tuesday.  They have to go after the stone endoscopically.  Meanwhile, I was NPO from Sunday evening until this morning.  Major migraine going on from that.

The second procedure was rough.  I had to lay on my stomach on a table and turn my head to left.  Between the surgical pain and my neck pain they had to heavily sedate me.   At some point last night, my heart rate ended up in the 40's.  Thank the Lord, I did wake up.

I also think the anesthesiologist did not listen when I said I had herniated discs in my neck and that he could not bend my head back far to put in the breathing tube.  So I still have a raging headache.  

This morning after fighting with the nurses, they finally brought me a gluten free tray.  Now tell me, if someone hasn't eaten in three days, you don't bring them scrambled eggs and sugary gluten free cereal!  I wasn't going to eat that.

I got so mad, that I called the nurse, and 15 minutes later when she showed up, I told her to take the IV out because I was going home.  I said if the doctor won't release me, I am leaving AMA.  Told her that the service at this hospital was not adequate to take care of someone that was sick and they took hours anytime I needed anything.  

They took the IV out and my husband was up in 30 minutes to get me.  Now I am hoping that my neck isn't injured or I am going to have to contact that doctor and do something.

Ate a little bit today.  Trying to go slow as I am full after a couple of bites.  Still pretty sore, but with 3 stones in my bile ducts, I really dodged a bullet.  Still more stones in the gallbladder, but the ones in the bile duct could have really caused an ER visit.

Thanks for all the prayers to get me through this.  I was scared to death, but am so happy to be home.  My dogs were a wreck until I came home.  They haven't left my side since I got home.  Those slobbery kisses are the best medicine. ;D
Posted by: deblynn3, Thursday, November 10, 2011, 12:39am; Reply: 402
:)  Glad your home, hope no damage done.  I checked myself out at midnight once. Never went back or saw that Doc. again.  But I really liked the Doc. etc the one other time I had to be in.  Wish there was a way to know "the bad, the good and the ugly" before we go.
Posted by: ruthiegirl, Thursday, November 10, 2011, 12:56am; Reply: 403
I'm sorry you had such a horrific experience in the hospital, but I'm glad it's over, and you're home and on the mend.

Be gentle with yourself. It may take you a few weeks to fully recover.
Posted by: JJR, Thursday, November 10, 2011, 6:36pm; Reply: 404
I'm glad you are home!!!

I had a horrible day yesterday.  But better today!!  Praise the LORD.  

I have been really anxious about everything having to do with food.  Is this going to hurt me, is that.  Did that, is this dirty.  Etc Etc.  It's getting out of hand.  I think I need some seretonin.  I'm real germ anal, washing my hands a lot and worrying about if the food is clean, like lettuce.  Last night I ate oatmeal and had an anxiety attack because:  It was the only thing different in my diet the night before and I thought it might have been what made me feel real bad the next day.  And I didn't think about it until after I ate half of it.  So I freaked.  But I got over it.  Then, here's a funny one for you.  I have a friend that is over in Tunisia, and he had sent me a gift.  My wife brought it in and opened up the box.  It is a beautiful, hand woven basket, with a polo shirt from the US Embassy.  And I got a wiff of the basket and I was like, oh no!!!  Who knows what germs he sent me from Tunisia.  He told me he gets the runs every 3 days because of the food and I was just having a hard time not thinking I've been poisoned with the tunisian dropsy.  So I had my kids open the windows, despite it being 40 degrees out.  Run a fan.  Then I had them tape the box back up.  Then, after thinking about it further, I had them put the box in a garbage bag and put it out in the garage.  HOW TERRIBLE OF ME!!!!  A friend sends me a gift and I freak about getting some kind of tunisian terror.  That's bad.  Can anyone relate to this?  Or are you guys like, OH MY, you need a life!!!  I know being low on minerals or the right things has helped do this to my mind, but I'm not sure what to do about it.  Same with the food.  It's all the times in the past, feeling lousy after eating something, my mind is not doing well with the thought.  Anything that just tastes slightly off, I'm spitting it out.  Etc.  It's distressing.  Anyone deal with this and have ways to overcome this?

ribbit, my spleen has been killing the last couple of days. It's either that or my kidneys.  Or probably both.  I get a twinge there now and then.  Actually it's not as bad today as it was yesterday.  But yeah, the spleen is not happy.  I take spleen PMG or dessicated spleen by standard process and it does seem to help.  I haven't tried the red root yet.  

My hands are terribly dry and cracking.  Anyone got a solution that won't freak with my mind?  I don't want to use coconut oil because I'm having a hard time with wanting that lately.  I was thinking of just rubbing a little olive oil on it.  We have this "Kiss my face" olive oil butter my wife has, but I don't know if it has other junk in it.  It doesn't say on the canister.  I should look it up.

Signed Crazy in Wisconsin.
Posted by: TJ, Thursday, November 10, 2011, 7:24pm; Reply: 405
JJR, I think I'd be in the same crazy neighborhood without my meds.  The Prozac helps me to physically relax and slow down.  The Prozac is supposed to be for anxiety, but the Lamictal does a lot of good for that, too.  Without the Prozac, I'd have a hard time falling asleep at night; I'd be rushing around like a spaz, wearing myself out, then totally crashing; and I'd be somewhat germaphobic myself.  Without the Lamictal, I'd be getting emotionally depressed in addition to the other "depression" symptoms; and I'd be constantly assuming the worst about other people's motives.  They both tone down the intensity in my brain.  My brain shouldn't be working that way, but that's how it is right now, and it might always be that way, depending on if the damage can be healed.

The meds are a crutch for me, and make it much easier to use my limited resources to deal with other things.  This has been my experience.  I'm not trying to sell you on meds, but still, it may be a good idea to talk to someone about your anxiety and getting medication for it.
Posted by: TJ, Thursday, November 10, 2011, 7:25pm; Reply: 406
BTW, I decided to drop the rest of the supplements today.  Genoma Security has Siberian ginseng in it, and I figured a few days off it won't make much difference for the biofilms.

Kim, how are you doing today?
Posted by: Chloe, Thursday, November 10, 2011, 7:59pm; Reply: 407
Glad you're home Kim. Hope you're feeling better today. :)
Posted by: ABJoe, Thursday, November 10, 2011, 8:11pm; Reply: 408
Quoted from JJR
Anyone deal with this and have ways to overcome this?

Just because you're paranoid, doesn't mean they aren't out to get you... ;D ;D ;D

Seriously, my overreactions were of a different nature, but were mostly handled once I accepted that I really was as sick as I was and that I couldn't continue to pretend that I was functioning "normally".

I have put things out to air when I had a problem - usually with a scent, but generally don't "create" problems when not experiencing one.  In these cases, I allow the item to breathe so anything "wrong" can dissipate without me being around.

If I'm not sure whether something is bothering me, I usually try it again later when I can focus on any possible symptoms before I make a decision.

Posted by: JJR, Thursday, November 10, 2011, 8:46pm; Reply: 409
Joe, I don't quite understand all of what you're saying.  As far as the "scent" goes.  I talk to my wife about it, and other people, and it helps.  It doesn't make me less germaphobic though.  As far as waiting to feel how I feel when eating something, it's been a real battle.  I like to be feeling at least somewhat normal before introducing something new.  Oatmeal isn't new.  I have at times found it hard to digest, especially if it's real thick.  But last night was different.  It was a rush right away.  Now I figured it was 2 or 3 things.  It was a ruch of minerals that I needed, and was beneficial.  Because my wife said I got hot.  Or, it was anxiety.  Which can probably do that too.  Or it was a little of both.  Because I feel better today than yesterday, even with eating the oatmeal.  Although it was about half of what I ate the night before.  But the night before, I felt completely fine after eating it.  It's just one of those things.  It could've been the oatmeal.  But was it a good or bad thing is the mystery.  And one that's hard to reconcile in my brain.

Another thought I had is it might just be that my body is craving cooked foods more now.  Which is why maybe I'm having a deal with the salads more.  I find myself wondering about how clean the leaves are, etc.  But when I cook veggies, I'm not really worried about them.  Except if the dishes I used were clean or not.  


TJ, I've been off of my seretonin support for over a week now.  And I'm pretty sure that's what making it worse.  I would rather try supps before a drug.  Although if it was bad enough, I'd go the drug route and understand.  But it would be a last resort for me.  You could see if your ND might could prescribe a supp that might help.  But, I totally understand.  We have to function.  Plus I know you don't have a job now.  I pray you find a replacement soon.
Posted by: nowishow, Thursday, November 10, 2011, 10:02pm; Reply: 410
JJR - The fact that you notice how anal or anxious you are says, to me at least, that you are not too bad. If you were really crazy you would think you are reacting perfectly normally. But still, I would start taking some 5HTP (seritonin precursor) and/or Ashwaghanda. Both of these have been really helpful for me.

I sympathize and I really know what you're going through. I've felt much the same at many times. It's all part of the illness. Hang in there  :K)
Posted by: nowishow, Thursday, November 10, 2011, 10:05pm; Reply: 411
Kim - I'm so glad you're home  :) my dog was very concerned about me while I was in the hospital as well. Dogs make the best nurses, don't you think? It sounds like it was a really good idea you had the operation. I hope your recovery is very speedy, but take it slow  :K)
Posted by: JJR, Thursday, November 10, 2011, 10:36pm; Reply: 412
Quoted from nowishow
JJR - The fact that you notice how anal or anxious you are says, to me at least, that you are not too bad. If you were really crazy you would think you are reacting perfectly normally. But still, I would start taking some 5HTP (seritonin precursor) and/or Ashwaghanda. Both of these have been really helpful for me.

I sympathize and I really know what you're going through. I've felt much the same at many times. It's all part of the illness. Hang in there  :K)


It does make me feel better to know it's somewhat normal to be feeling like this.  Thank you.  I have another supplement I'm suppose to try also called L-Theanine.  Supposedly that helps and it's in green tea.  But I do have seretonin support which is: 500 mt or L-TYROSINE and 50mg or L-5 hydroxytryptophan.  Which must be what you're talking about.  So, tonight I'll be adding it back into my regiment and see how it works.  They had me off of it since my last appointment, but now I need it again.  

Posted by: ruthiegirl, Friday, November 11, 2011, 2:05am; Reply: 413
IIRC, L-tyrosine increases dopamine, not  seratonin. The  L-5 hydroxytryptophan sounds like a form of tryptophan, which does increase seratonin,
Posted by: JJR, Friday, November 11, 2011, 3:49am; Reply: 414
Well, the supp I take has both of that.  It has seemed to help me in the past.
Posted by: ABJoe, Friday, November 11, 2011, 4:28am; Reply: 415
Quoted from JJR
Oatmeal isn't new.  I have at times found it hard to digest, especially if it's real thick.  But last night was different.  It was a rush right away.  Now I figured it was 2 or 3 things.  It was a rush of minerals that I needed, and was beneficial.  Because my wife said I got hot.  Or, it was anxiety.  Which can probably do that too.  Or it was a little of both.  Because I feel better today than yesterday, even with eating the oatmeal.  Although it was about half of what I ate the night before.  But the night before, I felt completely fine after eating it.  It's just one of those things.  It could've been the oatmeal.  But was it a good or bad thing is the mystery.  And one that's hard to reconcile in my brain.

JJ,

I've had that reaction - the hot while or just after eating...  I found that when this happens, I either hadn't been eating enough to power the body as needed, or I had a bunch of toxic junk that I flushed out after eating a specific food, etc...  I have to be careful to eat (and supplement) often enough to maintain energy levels so the detox can continue without bogging me down...

I fully understand the not knowing whether some reaction is good or bad...  I have had to just trust the practitioner, whether it be Dr. D.'s recommendations or my other practitioner(s).  I've had some doozy reactions that were very beneficial for me...
Posted by: TJ, Friday, November 11, 2011, 12:44pm; Reply: 416
Quoted from JJR
Another thought I had is it might just be that my body is craving cooked foods more now.
It is getting cooler now.  Cooked food is warmer, temperature-wise, and I suspect it is also warmer energetically.

Quoted from JJR
TJ, I've been off of my seretonin support for over a week now.  And I'm pretty sure that's what making it worse.  I would rather try supps before a drug.  Although if it was bad enough, I'd go the drug route and understand.  But it would be a last resort for me.  You could see if your ND might could prescribe a supp that might help.  But, I totally understand.  We have to function.  Plus I know you don't have a job now.  I pray you find a replacement soon.
I don't have a ND.  The meds are working for me, and I don't want to fix what ain't broken, even though I'd rather not be medicated!

Quoted from JJR
But I do have seratonin support which is: 500 mg of L-TYROSINE and 50mg of L-5 hydroxytryptophan.  Which must be what you're talking about.  So, tonight I'll be adding it back into my regiment and see how it works.  They had me off of it since my last appointment, but now I need it again.
Tyrosine is a precursor to catecholamines.  ABs are like Os in that they have trouble clearing those out.  You may want to do some research on how tyrosine can affect that.
Posted by: Kim, Friday, November 11, 2011, 2:44pm; Reply: 417
I spent all of yesterday in the ER.  Someone, I am assuming the anesthesiologist, bent my head back beyond where he was supposed to to put in the breathing tube.  I am trying to figure out how to get transcript of the surgery to find out which doctor actually put the breathing tube in.

If I have more damage to my neck, I am going to sue the doctor.  I am on heavy narcotics so that I can even sit up.  You don't have to worry about belly pain from a lap chole when your neck is all screwed up.  

This is the first full day I will be home actually resting.  Trying to eat now.  No foods bothering me but weight went up 6 lbs with 3 days of no food.  Hospital said that was just fluids.  I thought I was going to lose it when I got on the scale and saw that 3 days of just water made me gain 6 lbs.  
Posted by: deblynn3, Friday, November 11, 2011, 3:04pm; Reply: 418
Are you talking "hospital fluids"?  As in IV ?  If so then your talking sugar  water. If your holding water, once you loose that your neck might get somewhat better.  I sure hope so.

Wishing you a speedy recovery
Posted by: JJR, Friday, November 11, 2011, 4:47pm; Reply: 419
Quoted from TJ
It is getting cooler now.  Cooked food is warmer, temperature-wise, and I suspect it is also warmer energetically.

I don't have a ND.  The meds are working for me, and I don't want to fix what ain't broken, even though I'd rather not be medicated!

Tyrosine is a precursor to catecholamines.  ABs are like Os in that they have trouble clearing those out.  You may want to do some research on how tyrosine can affect that.


Thank you for the tip!!!
Posted by: JJR, Friday, November 11, 2011, 4:51pm; Reply: 420
Quoted from ABJoe

JJ,

I've had that reaction - the hot while or just after eating...  I found that when this happens, I either hadn't been eating enough to power the body as needed, or I had a bunch of toxic junk that I flushed out after eating a specific food, etc...  I have to be careful to eat (and supplement) often enough to maintain energy levels so the detox can continue without bogging me down...

I fully understand the not knowing whether some reaction is good or bad...  I have had to just trust the practitioner, whether it be Dr. D.'s recommendations or my other practitioner(s).  I've had some doozy reactions that were very beneficial for me...



I also figured out last night I might be passing a stone.  I had more pain in my groin like I've had in the past when passing one.  And I think when I eat, it may be causing internal pain.  The stomach might move the kidney or put pressure on the area in general.  And my spleen.  That might be a factor.  I'm not completely sure, but my urine was much darker last night too.  It's a distinct possibility because last year at Mayo they told me I had 3 left.  So.....  But what you say makes sense too.  It does seem like it might've been the rush of minerals because I didn't eat real well that day.  It really tasted good too.
Posted by: TJ, Friday, November 11, 2011, 9:50pm; Reply: 421
I feel royally cr*ppy today... and I thought yesterday was bad.  On the right side, I'm achy from the base of my neck down to my shoulder muscle (deltoid).  My brain was off wandering in space until I roped it in to check the forums.  I'm clutzy and off-balance: I dropped one of my glass casseroles, but amazingly it didn't break, and when I stood up and turned in the same motion I almost lost my balance.  I went to bed around 10 pm, woke up around 3:45 am, went back to bed around 7:15 and didn't wake up again until around 11:30.  I'm in slow motion mode.  I feel lethargic and depressed, and I can't seem to get it together to get anything else done today.

I have to admit, I deal with most of this most of the time in small amounts, but this is not typical.  Is this what I'm really like without the supplements as a crutch??? :'(
Posted by: JJR, Friday, November 11, 2011, 10:20pm; Reply: 422
Probably so.  I know that so many times in my journey dealing with health issues, the supps seem to really fuel me.  But, you may need to lay low for a bit and let the body recoup.  Maybe tomorrow will be better.  Maybe time will tell with patience.  But I realize you have a life to live and that makes it a little tough.  Especially if you have to get up and feed yourself.  Stay strong man, it will get better.  Our bodies want to heal.  It just takes time.  !!!!!!!!!!!!!!!!!!!!
Posted by: Ribbit, Saturday, November 12, 2011, 12:39am; Reply: 423
Man, we are a really depressing bunch the last few days, aren't we? I think it's funny that TJ and I are both going off our supplements/drugs/whathaveyou at the same time.  I'm spiraling downhill by the hour and it ain't funny.  I'm hardly eating anything.  My appetite is totally 0.  My body hurts.  I'm dizzy and disoriented and I had a friend tell me yesterday that I look awful. >:(  GOOD.  Maybe a doctor will actually take me seriously.  The cramping in my left hand is coming back and it's tremoring a little.  GOOD.  I can't think of words. I yelled at my kids because I was  mad at myself for forgetting what the word "blanket" was.  I couldn't think of it, so I gestured and they totally ignored me.  I glared at DH and said, "I can't think!  They get to be sloppy and messy because I can't THINK!"  He said, "Then go away.  SHOO."  I thanked him and came down here to report my activities to the only people who understand. >:(  I guess they're cleaning up their junk under Daddy's supervision.  'Cause I can't do it. *fume*  I tell you what, people.  As soon as this trip to the LLMD is over with, I'm going back on all my supplements in time to see our inlaws at Thanksgiving.  I can't seem too crazy in front of them.  No, I'm not paranoid at all.  *extra fume* ::)

JJ, you're scaring me.
Posted by: Ribbit, Saturday, November 12, 2011, 12:47am; Reply: 424
And my ankles and lower legs hurt really bad.

And I have to tell myself to breathe.

Isn't breathing one of those nervous system responses that's automatic?  I find myself suddenly thinking, "I should breathe now," and I take a deep breath as if I breathed in a while.  I don't mean to hold my breath.  I'm not trying to.  It's just that whatever it is in my brain that's supposed to tell my body to breathe isn't working all that well.  That had gotten better.

Oh, yes, I'll be good and sick by the time my appointment rolls around.  It's been a good reminder for DH to see that our ND really is doing me a whole lot of good. (You know, since he's dishing up the money to see her.)
Posted by: JJR, Saturday, November 12, 2011, 1:32am; Reply: 425
I'm scaring you???????  Oh my goodness!!!!!!  Which part?  All the mental gymnastics of germs or kidney stones?  I have no clue why I have stones, except that my genetic test showed I lack glutathione in there.  But otherwise, I don't know.  I've been drinking tons of water every day for about 4 years now.  Right now I've been drinking over 3 liters to help push through whatever is happening.  I've been waking up in the middle of the night to slam a bunch of water.  It was like that last year this time.  I keep trying to figure out what I might be eating that is causing all this, but I just think my body is going through some crazy time.  As it does every year this time.  But, it's hard for my mind to relax about what it is I might be eating.  I've spent the afternoon studying food borne germ practices.  I think were doing fine, for the most part, but who knows what you could pick up from the store.  It's like I just want to cook the snot out of everything.  Although there are many fruits that I like better fresh.  

I'll try to remember to keep praying for you Leanne up until your appointment.
Posted by: nowishow, Saturday, November 12, 2011, 1:55am; Reply: 426
Quoted from Ribbit

And I have to tell myself to breathe.

Isn't breathing one of those nervous system responses that's automatic?  I find myself suddenly thinking, "I should breathe now," and I take a deep breath as if I breathed in a while.  I don't mean to hold my breath.  I'm not trying to.  It's just that whatever it is in my brain that's supposed to tell my body to breathe isn't working all that well.  That had gotten better.



I'm so glad you said this! I have had this exact symptom for the last 1 1/2 years and have never heard another Lymie mention it. It's so hard to explain, but it is like I have to tell myself to breathe. It wakes me up at night because I will stop breathing and my body will wake up and I calmly say to myself "oh  I need to breathe, I haven't been breathing". And it's not sleep apnea, which I've been tested for, and it happens to me during the day as well as the night. Thanks Ribbit! I don't feel so weird now.

By the way guys, it was a full moon last night which may be contributing to all of our symptoms. I was up until 4:30AM with chest pain and palpitations. Needless to say I didn't go to work today. I'm not sure if it's the full moon or because I've been increases my remedy dosage the last couple of weeks. I take A-Bab and A-Bart. I hope we all feel better tomorrow.
Posted by: TJ, Saturday, November 12, 2011, 5:18am; Reply: 427
Quoted from Ribbit
Man, we are a really depressing bunch the last few days, aren't we? I think it's funny that TJ and I are both going off our supplements/drugs/whathaveyou at the same time.  I'm spiraling downhill by the hour and it ain't funny.
Ribbit, you gave me the inspiration to go off the supplements before seeing my doctor (not that I'm blaming you for my misery).  It really is a good idea from the big picture perspective, but it sure is miserable down here in the present moment.  I don't know why I'm surprised.  But I'm also kind of happy about it, in a perverse way, because the doctor will see what I look like when I'm trying to stand up on my own.

Generally speaking, I still have my appetite, just not the motivation to cook, so I'm eating finger food.

Quoted from Ribbit
And my ankles and lower legs hurt really bad.
I had a (un)healthy dose of that today, too.  I actually went back to bed AGAIN after my last post -- two hours -- and I was achy from the knees down.  Well, more achy than in the rest of my body.

I just finished watching three hours of NCIS.  My head aches, and I feel hungry but not sure if it's a good idea to eat anything at the moment. :X  At least I had something to take my mind off it, and I had a few good laughs, too.
Posted by: Kim, Saturday, November 12, 2011, 3:38pm; Reply: 428
Quoted from Ribbit
And my ankles and lower legs hurt really bad.

And I have to tell myself to breathe.

Isn't breathing one of those nervous system responses that's automatic?  I find myself suddenly thinking, "I should breathe now," and I take a deep breath as if I breathed in a while.  I don't mean to hold my breath.  I'm not trying to.  It's just that whatever it is in my brain that's supposed to tell my body to breathe isn't working all that well.  That had gotten better.

Oh, yes, I'll be good and sick by the time my appointment rolls around.  It's been a good reminder for DH to see that our ND really is doing me a whole lot of good. (You know, since he's dishing up the money to see her.)


I have the same breathing symptom you do.  It is a sign of Babesia.  I catch myself holding my breath, like my body forgot it was supposed to do it.
Posted by: nowishow, Saturday, November 12, 2011, 3:53pm; Reply: 429
Does anyone know if Babesia can go into a cyst form. I know "Lyme" can but I don't know if Babesia can.
Posted by: TJ, Saturday, November 12, 2011, 4:29pm; Reply: 430
I don't know nowishow, but I just did a little reading on it.  The babesia microorganism is actually a protozoa, not a bacteria.
Posted by: JJR, Saturday, November 12, 2011, 7:50pm; Reply: 431
You guys make me feel so at HOME!!!  nowishow:  last night I was battling a little more inflammation than normal and this morning too.  So, yeah, I think the full moon did it.  I tried to look out and see it last night before bed, but it was too high up for my overhangs.  But I could see the ground and everything.  It makes everything look so beautiful at night, but it sure does mess with us, I think.  Actually the new moon does it to me too.  Seems like on the full moon I'm more hungry than other times.  

And yeah, I get the leg pain too.  Knees, feet, whatever.  Also nowishow, the last 3 or 4 nights I've been sleeping more propped up like you've talked about before.  It seems to take pressure off of the areas that are hurting right now.  Like my kidneys.  I just use two pillows instead of one.  I don't usually do this, but during these times where I feel particularly lousy, I've done it and it seems to work.

The breathing thing you guys are talking about is SCARY!!!

TJ, my wife and I have turned into NCIS fans.  I used to hate TV, but now I find shows that I enjoy watching.  Netflix has some cool old shows too, if you can get it streaming.  I've been watching "The Rockford Files" quite a bit lately, among others.  It reminds me of my childhood.  My Dad resembles him very much.  Plus, I love seeing all the old cars.  Those types of shows.  I just watched the first "Mission Impossible" the other night and I didn't really like it.  But here's the ones I've been watching.  And I kid you not, some of these really help me take my mind off of things and relax.  Maybe it's a crutch, but it sure is nice.  And I read quite a bit too.  

Besides the ones I just mentioned some shows I like that are streaming on Netflix:

Top Gear (for some reason this show just makes me smile practically the whole time, and it is really nice to do.  I think my son looks at me and is amazed because he doesn't normally see me smile so much.)
Hawaii 5-0.  We watch the new show too.
Have Gun Will Travel (kind of corny)
Oliver's Twist (Jamie Oliver cooking)
Take Home Chef (The Aussie, whatever his name is Curtis Stone??)
All Creatures Great and Small (I can't say enough good things about this show.  It's unlike anything I've ever seen in my entire life.  It's very realistic, with some British humor and quirkiness and it's just crazy good, in my opinion and I think would appeal to a lot of people, especially you Kim, because it has horses a lot)
Macgyver (the kids really like this)
Monk (We were heavy into this show, and I'm starting to wonder if his OCD hasn't rubbed off on me, but I don't really think that's it, but his fears hit a nerve)
The A-Team (just stupid fun)
Shaun the Sheep (This one is awesome)
Wallace and Grommet (looks like the same type of thing as Shaun the Sheep)
American Muscle Car (for the gearheads)
The Rat Patrol (kind of corny again)
The Virginian (I've only seen one and it was kind of interesting, but slow, almost strange for a Western and long.  Maybe it will get better)
Gunsmoke (watched the firs one last night)
Overhaulin (Love that show, for gearheads)

Another note healthwise (I've been having to drink about 3-4 liters a day, where I was typically drinking 2 or a hair less.  For whatever reason.  But it seems like if I don't I'm messed up.  1 liter is usually while I get up during the night a few times.

Posted by: nowishow, Sunday, November 13, 2011, 1:04am; Reply: 432
When I was really sick last year I streamed a lot of old TV shows. There were all I could handle.  I watched Perry Mason, Maverick, Murder she wrote, and lots of old movies. Some of the newer shows are too hard on my senses. They're too loud and they jump around too much visually. It's so hard for my brain to follow along and I end up trembling. I'm a bit better now, but I still can't watch action films or fast paced comedies.
Posted by: JJR, Sunday, November 13, 2011, 4:38am; Reply: 433
Yeah, I get overwhelmed at times at the movies.  We did see Cars II, but it's kind of like, woooooaaaaaah, to watch.  And I agree, the older ones are more easier on the senses.  We definitely have different tastes.  Something about that Murder She Wrote lady I don't like.  Maybe I should watch one and give it a chance.  What is "Maverick"?  It sounds familiar, but I don't remember exactly.  I've never watched a whole Perry Mason either.  Hmmmmm....
Posted by: TJ, Sunday, November 13, 2011, 5:16am; Reply: 434
JJR, I loved MacGyver and the old Mission Impossible shows.  I've seen one episode of Top Gear, when they were dropped off in the middle of a jungle in South America with some beat up old 4x4's and had to drive to the coast.  I liked that.  I've never watched Monk, but it looks like it could be interesting.  Overhaulin' appeals to my car guy side.  I like to watch Star Trek:TNG reruns whenever I catch them on air.

Quoted from nowishow
Some of the newer shows are too hard on my senses. They're too loud and they jump around too much visually.
I've had this same experience with movies and TV shows.  For me, it's not just the sensory experience.  Too much emotional intensity is just as bad.  I think it's a sorry state that our society at large has gotten into when we've become so emotionally numb and calloused that such intensity is required to keep us interested. :(

On a totally different subject, my roommate complained that there was an off smell in the fridge, and asked about my saurkraut.  It had been in there quite a while.  So took it out and smelled it.  It didn't smell very strong, but it was covered with mold, and naturally I accidentally got my lungs full of it. :X  As if things weren't bad enough.  I just hope this headache doesn't turn into a migraine.
Posted by: Ribbit, Sunday, November 13, 2011, 2:05pm; Reply: 435
It's called air hunger.  I've had it for a long time, but I didn't have a name for it until I repeatedly read through lists of Lyme symptoms.  I thought air hunger was an appropriate term.

The moon was indeed beautiful.  It looked like it had snowed, everything was so white.

If nothing else, being sick has caused me to slow down and appreciate the little things more.

We've gotten interested in Netflix too.  We like to find a series to get into because watching one or two episodes at night works better than trying to fit in a whole movie.  I'm not a TV fan either, but it is a good distraction and it's something to look forward to after a long day.  

I do have to say that I think having a job to do (children) is what's keeping me going.  I don't have a choice but to get up and take care of things, so I ignore the pain and just do what I need to do.  When I was at my worst 1 1/2 years ago (which sounds like where JJ is now), I couldn't do anything BUT lay around.  I did not have the physical strength to do anything more than cook.  

With all the problems that are coming back from not taking supplements, at least I'm still not as bad as I was two springs ago.  I'm thankful for that.

I'm assuming all my tests will come back negative.  I've just had it too long for it to show up.  But I'm happy that Dr. Kalb gives Lyme diagnosis based on symptoms.
Posted by: Ribbit, Sunday, November 13, 2011, 2:09pm; Reply: 436
The other thing keeping me going is caffeine.  If I didn't have my pot of coffee in the morning (as DH likes to joke), I would not stay vertical.  Even with coffee, two springs ago I would go back to bed after breakfast.  Just the process of getting clamoring children fed wore me out so bad I'd have to go take a nap.
Posted by: JJR, Sunday, November 13, 2011, 4:03pm; Reply: 437
Wow TJ, we had similar circumstances with the mold.  

ribbit, I used to drink coffee a lot when I was feeling well.  It was the only way I survived then, when I was getting up with Jack 4-5 times a night so he wouldn't scratch himself bloody.  But now, it will kick my heart into arrhythmia real quick.  So even my green tea is decaf.  

My son woke up this morning and hurled.  Now I don't want to go anywhere near that bathroom.  My wife cleaned it, but dang.  It never ends.  He hasn't even been out of the house for a few days.  So I suspect food, or what I've been fighting lately.  But I didn't puke.  Or it's something new.  My Daughter has left the house and went to a Christmas Tea with my Mom.  I hope she didn't bring something back.  Oh well.  It's in God's hands.  Sometimes it feels like we're just surrounded by garbage and sickness though.  It gets annoying.
Posted by: TJ, Sunday, November 13, 2011, 4:29pm; Reply: 438
Quoted from Ribbit
It's called air hunger.  I've had it for a long time, but I didn't have a name for it until I repeatedly read through lists of Lyme symptoms.  I thought air hunger was an appropriate term.
I hate to be a copycat, but this is another symptom I can relate to, mostly when I'm trying to go to sleep. I often catch myself holding my breathe when I'm feeling tense or if I'm trying to concentrate on something.

I'm thinking about making a list of all the symptoms I've suffered with on a regular basis over the years.  I'm talking about everything I can think of, not just stuff that seems like it might be related to Lyme.  If I wasn't so thoroughly programmed to put on a good face in front of other people (including doctors), this stuff would be more obvious.  I hope the doctor doesn't just think I'm a head case.
Posted by: TJ, Sunday, November 13, 2011, 4:31pm; Reply: 439
Quoted from JJR
Wow TJ, we had similar circumstances with the mold.
Yeah, I've got gritty eyes, sinus congestion, a headache, and a gunky throat today.
Posted by: Chloe, Sunday, November 13, 2011, 4:40pm; Reply: 440
I had air hunger yesterday...But after drinking a large glass of raw organic juice, it went away.  I
was calm and I could easily breathe...I suspect there's an acidic body component.  Raw juices
are alkalizing.

"A surprising number and variety of physical problems and diseases can be caused by acidity. Today, the vast majority of the populace in industrialized nations suffers from problems caused by acidification, because both modern lifestyle and diet promote acidification of the body’s internal environment.

In general, the current standard diet is primarily composed of acidic or acidifying elements (proteins, cereals, sugars). Alkaline foods such as vegetables are eaten in much smaller quantities; their alkaline content is insufficient to neutralize surplus acids. Stimulants like tobacco, coffee, tea and alcohol are also extremely acidifying. Stress and physical activity (both insufficient or excessive amounts) also cause acidification."

Do you exhibit signs of acidification? Find out with this checklist of 30 symptoms.

1. Lack of energy, constant fatigue, loss of physical tone and psychic drive, sensation of heaviness in the limbs, feelings of inability to cope.
2. Lower body temperature; frequently feels cold.
3. Tendency to get infections.
4. Loss of drive, joy and enthusiasm.
5. Depressive tendencies.
6. Nervousness, agitation without cause, hyperactivity, sensitivity to high-pitched noises and easily stressed.
7. Very pale face.
8. Headaches.
9. Eyes tear easily.
10. Conjunctivitis.
11. Inflammation of the corneas and eyelids.
12. Acidic saliva.
13. Loose teeth.
14. Inflamed, sensitive gums.
15. Mouth ulcers.
16. Cracks at the corners of the lips.
17. Recurring infections of throat and tonsils.
18. Teeth are sensitive to hot, cold or acidic foods.
19. Teeth have a tendency to crack or chip.
20. Pain in the nerves of the teeth.
21. Excess stomach acid.
22. Acid regurgitation.
23. Gastritis.
24. Ulcers.
25. Nails are thin and split and break easily.
26. Hair looks dull, has split ends, and falls out.
27. Dry skin.
28. Skin tends to be irritated in regions where there are heavy concentrations of sweat.
29. Hives.
30. Leg cramps and spasms.

Adapted from The Acid-Alkaline Diet for Optimum Health, by Christopher Vasey, N.D. (Inner Traditions, 2003).

Read more: http://www.care2.com/greenliving/are-you-too-acidic-symptoms.html#ixzz1dbWZ0bpU
Posted by: JJR, Sunday, November 13, 2011, 6:58pm; Reply: 441
I eat lots of veggies, but still suffer from some of those sypmtoms.  Hehhehee.  Maybe not enough.
Posted by: nowishow, Sunday, November 13, 2011, 7:14pm; Reply: 442
Quoted from Ribbit
It's called air hunger.  I've had it for a long time, but I didn't have a name for it until I repeatedly read through lists of Lyme symptoms.  I thought air hunger was an appropriate term.



I thought "air hunger" was when you couldn't get enough air, kind of like shortness of breath (which I also have) not this suddenly noticing that you haven't been breathing. I've never heard it described like that. I'm glad to hear that is what it is.
Posted by: JJR, Sunday, November 13, 2011, 9:17pm; Reply: 443
Yeah, I get the shortness in breath type of air hunger now and then.  It comes and goes.  Not with physical activity, sometimes with physical activity.  My doctors assistant says it's slow lymph fluids.  Did you know you have more lymph fluid than blood?  Supposedly.  That's pretty interesting.
Posted by: Kim, Monday, November 14, 2011, 2:10pm; Reply: 444
I spent all day Thursday in the ER.  I would bet money that the anethesiologist ignored me when I showed him an MRI report that said I had herniated bulging discs in my cervical spine and one of them is flattening the spinal cord.  I wanted him to know this before he put a breathing tube down my throat.

I told the anesthesiologist, all the nurses and my surgeon that I do not have full range of motion of my neck.  You know sometimes we see something that isn't exactly the way it is, so I asked my husband what he thought the anethesiologists reaction was when we told him about my neck issue.  That doctor looked irritated like something just got complicated for him.  I know they can be careful putting a breathing tube in but I don't believe he was careful at all.  I get a copy of the surgical transcript Thursdday so I will know which doctor tubed me.  There were three people handling that part of the surgery.

I was afraid that when they put the breathing tube in, they would hurt the existing problem in my neck.  The raging headache/neck ache did not go away when I got home and it got so bad Thursday, that the my surgeon told me to go to the ER.

So I have another MRI tomorrow morning. I have to take dilauded, a strong morphine drug so that I can even stand the pain, along with muscle relaxers.

My tummy is sore from the gallbladder surgery, but it was positively the right thing to do. The heaviness in my upper abdomen is gone.  I am able to tolerate grains for the first time without any pain. My weight is dropping every day.  I can still stand to lose a few pounds so the weight dropping is not a problem.  

So far, I can eat anything.  I did splurge on some ice cream, and no problems at all.  I am following my swami as much as I can and trying to eat 4 small meals a day.  My appetite still is strange.  One day I am hungry all day and the next, I don't feel very hungry at all.

Big problem is my neck now.  Can't do anything at all.  I have ice on and off of it most of the day.  This anesthesiologist had to bend my neck back further than I told him I can comfortable do so.  If this is just some inflammation from the surgery, I will ride it out until it is better.  BUT, if there is further damage to my neck, I am finding an attorney. :'(
Posted by: ruthiegirl, Monday, November 14, 2011, 3:58pm; Reply: 445
Homeopathic arnica may also help the swelling. I'm sorry you're going through this.
Posted by: 11080 (Guest), Monday, November 14, 2011, 4:00pm; Reply: 446
Quoted from Goldie
Might I ask a in-delicate question?  

has anyone here ever got better then they where when they started feeling the effects of Lyme?

I am apologizing for the question, I hope that the answer will be a resounding yes, and that there are real REASONS for feeling better.


Hi Goldie,

I can give you "a resounding yes."  I won't go into all the details of my symptoms, but I will say that I have had chronic Lyme Disease (a spyrochete bacteria) and co-infections including Babesia (a malaria-like parsite) and Bartonella (a bacteria) for 10 years.  I contracted it in August 2001.

I started BTD last year, which helped with some symptoms but I only felt about 20% better.  Then in April 2011, I had a frozen shoulder--I couldn't move my right arm without excrutiating pain.  My Dr sent me to an ortho Dr who wanted to give me a cortisone shot to reduce inflammation.  I suspected Lyme Disease at that time and told him that I understood that cortisone would turn off my immune system and that I thought a cortisone shot for someone with chronic Lyme Disease would be dangerous.  He ignored my concerns saying that the small amount of cortisone he would give me would not turn off my immune system and he didn't seem to believe in chronic Lyme Disease.  I had not been officially diagnosed with Lyme Disease so I got the shot.  Big mistake!

My symptoms came flooding back.  My immune system shut down.  I have at least 30 symptoms of Lyme Disease and co-infections.  So I found an amazing LLMD, who happens to be the same LLMD that Kim is seeing--Dr. Jemsek in Washington, DC.  http://www.JemsekSpecialty.com

I got my first appointment in May 2011, which was a four-hour medical history.  They sent me for diagnostic tests and I returned to the LLMD in June 2011.  Based on medical history and diagnostic test results, he diagnosed me with Lyme Disease, Babesia, and Bartonella.  I also had positive results for Eptsein Barr Virus and a few other viruses.  The LLMD said there was no treatment for the viruses but that as his patients start to eliminate Lyme and the co-infections, their immune systems are able to get the viruses under control.

The LLMD requires his patients to have pain and sleep under control before he will start them on treatment.  With his non-narcotic prescriptions for pain, I quickly got my pain and sleep under control.  Also, he requires his patients to be gluten-free because he does not want the immune system to be dealing with gluten while he is training it to recognize Lyme Disease and co-infections during treatment.  I was already gluten-free because I went on BTD in June 2010.

By July 2011, I started treatment.  I was so excited!  My treatment was intravenous antibiotics because the Lyme Disease was so entrenched in my brain.  Oral abx would not penetrate the brain.  Plus I have a history of gastrointestinal problems and stomach ulcers.  I healed my gut on BTD but did not think that my system could handle oral abx long term.

I know a lot of people on this forum are so opposed to antibiotics and would refuse to consider a treatment that includes them.  But I truly believe that for me, I would never get better with a natural-only approach.  Of course, my LLMD adds many natural supplements to his protocols and he requires patients to be on high doses of probiotics.  Under theses circumstances, I have had very few problems during treatment with my gastrointestinal issues.  Usually, I only have gut problems if I eat something not compliant with BTD.

Even with this aggressive treatment, my LLMD said it would be a long haul and recommended eight months of intravenous antibiotic treatment.  Note that it is not daily IVs.  He pulses the antibiotics, which means that:

-- for the first two months, I am on IV abx for three weeks (3 days per week), then off all medications for the fourth week (the "drug holiday").  I still take the supplements and probiotics during the drug holidays;
--for the third and fourth months, I am on IV abx for two weeks, then have a drug holiday for the third week;
--the rest of the treatment period (months five through eight) I am on IV abx for two weeks, then drug holiday for two weeks.

The theory behind the pulsed abx treatment is that on the weeks of the drug holiday, the immune system picks up where the abx leave off.  The immune system starts to recognize the "enemy" bacteria and parasites and eventually learns to keep them in check.

So, to finally answer your question, Goldie, YES, I AM BETTER.  I am in my fifth month of treatment and about half of my symptoms are completely gone.  Early on in my treatment, I had a lot of "herxing" from the treatment because as the abx kill the bacteria and parasites, the dead bugs are released into the bloodstream, which, to my system, feels like a new infection.  The symptoms of herxing are similar to the symptoms of the actual disease.  But even during herxing, the symptoms were never as bad as when I was sick with the disease.

My primary care physician was extremely skeptical and hostile to the idea of me going to see the LLMD because she said that Lyme Doctors were quacks and the subject of more malpractice lawsuits than any other specialty.  But because my LLMD is an infectious disease specialist, she didn't put up too much of a fight.  Now she sees my tremendous progress and has stopped hassling me.  After all, she's the one who sent me to all the specialists over the past 10 years and I just kept getting sicker and sicker.

When I complete the full eight months of treatment, I'll report back.  But I fully expect to be the person I was more than 10 years ago.  Lyme Disease and its co-infections rob you of who you really are.  I'm starting to see that person again.  I am very optimistic and I am so glad that I finally found the correct diagnosis and treatment.  

I hope this helps.  Also, I'm glad to see this thread and so many good questions and information-sharing.  BTD definitely plays a role in recovering from Lyme Disease but in my opinion, it will not work alone.  Thanks to everyone for contributing.
Posted by: TJ, Monday, November 14, 2011, 5:02pm; Reply: 447
Thanks for your post spinnakertech.

Quoted from 11080
My treatment was intravenous antibiotics because the Lyme Disease was so entrenched in my brain.  Oral abx would not penetrate the brain.  Plus I have a history of gastrointestinal problems and stomach ulcers.  I healed my gut on BTD but did not think that my system could handle oral abx long term.
FYI, doxycycline (what I'm taking) does penetrate the blood-brain barrier, but that won't help with the other problems...  After everything I've done, my gut still doesn't seem to be healed.  I think some aspect of Lyme disease is responsible for preventing the expected healing.

Quoted from 11080
I know a lot of people on this forum are so opposed to antibiotics and would refuse to consider a treatment that includes them.  But I truly believe that for me, I would never get better with a natural-only approach.

...BTD definitely plays a role in recovering from Lyme Disease but in my opinion, it will not work alone.
I agree.  Natural remedies have a place, but when the immune system is so beaten down from years of fighting, some outside help is needed.  I feel like eating right for my type has done a great deal to help me heal, and has positioned me for the fight.

Quoted from 11080
When I complete the full eight months of treatment, I'll report back.  But I fully expect to be the person I was more than 10 years ago.  Lyme Disease and its co-infections rob you of who you really are.  I'm starting to see that person again.  I am very optimistic and I am so glad that I finally found the correct diagnosis and treatment.
I hope to be the person I never was, but should have been!

Posted by: TJ, Monday, November 14, 2011, 8:36pm; Reply: 448
I've been feeling a lot better today than I have over the past week.  I've got the crock pot going, I fixed a lunch that didn't consist of finger food, and I'm going out to do some work on my car after I finish this post. :o

On (what I believe to be) a related note, I noticed today that my Sunday dose of antibiotics was still in my pill box, meaning I forgot to take them yesterday.  Yep, there's definitely something going on.
Posted by: JJR, Monday, November 14, 2011, 10:39pm; Reply: 449
Very good post and perspective spinnakertech.
Posted by: Ribbit, Tuesday, November 15, 2011, 6:34pm; Reply: 450
Quoted from nowishow


I thought "air hunger" was when you couldn't get enough air, kind of like shortness of breath (which I also have) not this suddenly noticing that you haven't been breathing. I've never heard it described like that. I'm glad to hear that is what it is.


Maybe I'm wrong.  
Posted by: TJ, Tuesday, November 15, 2011, 8:25pm; Reply: 451
Quoted from TJ
On (what I believe to be) a related note, I noticed today that my Sunday dose of antibiotics was still in my pill box, meaning I forgot to take them yesterday.  Yep, there's definitely something going on.
Blegh, back in the toilet again today, and it's not just the nasty weather.
Posted by: Ribbit, Wednesday, November 16, 2011, 2:16am; Reply: 452
I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.  But boy, TJ, I know why you take antidepressants.
Posted by: ABJoe, Wednesday, November 16, 2011, 3:47am; Reply: 453
Quoted from Ribbit
I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.

Going back to your previous post, I'm sorry that you have to prove to an MD that you have the symptoms.  Hopefully, it will be worth it once you get past the appt.  
Posted by: TJ, Wednesday, November 16, 2011, 4:10am; Reply: 454
My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!

Also, I just placed more supplement orders, just to rev up my immune system:That should last me a couple of months and get me geared up to kick Lyme's butt.
Posted by: Chloe, Wednesday, November 16, 2011, 2:35pm; Reply: 455

Sending you all prayers, healing wishes and my loving support..

Ribbit, extra special {{{{{hugs}}}}} to you... I just wanted you to know how much I really DO care.


Posted by: Goldie, Wednesday, November 16, 2011, 3:33pm; Reply: 456
spinnakertech

I am pleased for you to see improvements.  I was getting to the point where I thought there is little hope, but reading your post has made me believe again: Trying everything, Never giving up trying new things -  is the way to live...and going to a good doctor is important..

... it was how I got better (not Lyme but 63 years of pain). Had I stopped I would have died miserable.  Keep up your good effort.

My mantra for any doctor.. if he or she does not fix something within 3 treatment opportunities then it's time to move on... The least they should do is listen and try ne wthings with you.  [u]All the best to you..    
Posted by: ruthiegirl, Wednesday, November 16, 2011, 3:40pm; Reply: 457
Good luck at the Dr today TJ

(((HUGS))) Ribbit.

I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.
Posted by: deblynn3, Wednesday, November 16, 2011, 4:25pm; Reply: 458
Ribbit when is your appt. ? not to far off I hope. {{{{hugs}}}}}
Posted by: 11080 (Guest), Wednesday, November 16, 2011, 4:45pm; Reply: 459
Quoted from ruthiegirl
I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.


Ruthiegirl,

You're in New York and there are many more Lyme specialists there and along the northern East Coast than in other parts of the country.  I have a terrific one down here in DC in Dr. Jemsek.  I would recommend him to anyone and if you could make the trip down here I would highly recommend it.  But, as I said, there are some terrific Lyme doctors in New York and Connecticut.  Lyme Disease is hard to diagnose and only Lyme Disease specialists are really qualified to do it.  Regular doctors, and especially rheumatologists, are hostile to chronic Lyme Disease and most will do everything in their power to shun your pain and symtoms and tell you there is no cure.

My only diagnosis from a rheumatologist, after going through a battery of blood tests and medical history, was Fibromyalgia and an unidentified auto-immune disorder.  The problem with that is that Fibromyalgia, like Chronic Fatigue Syndrome, and even Multiple Schlerosis, is just a symptom of another disease that these so-called specialists (rheumatologists) have not identified.  Something like 90% of Lyme Disease patients had earlier been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Multiple Schlerosis, and even Parkinson's Disease before they finally were diagnosed with Lyme Disease.  Then once they were properly treated for Lyme and co-infections (Babesia, Bartonella, Mycoplasma) the Fibro, CFS, MS, and Parkinson's symptoms disappeared!

Too many people with Fibro and CFS have Lyme Disease and its co-infections as the underlying culprit.  It took an infectious disease specialist in Dr. Jemsek to track down the actual source of the Fibromyalgia diagnosis for me.  I am so glad I did not stop with the Fibromyalgia diagnosis!  I never would have gotten the real help that I needed.

I also had terrible fatigue, muscle pain, joint pain (especially in the larger joints for years and then moving to my hands eventually) and brain fog.  These were just a few of the dozens of other symptoms that I didn't know were related.  I'm not saying that you have Lyme Disease but if it were me (and it was for a long time) I would go to a Lyme specialist to get real answers; whether those answers are Lyme Disease or not.

Best of Luck!!!
Posted by: Chloe, Wednesday, November 16, 2011, 4:52pm; Reply: 460
Ruthie, FYI......Dr. Nash's expertise is treating Lyme disease.  
Posted by: Goldie, Wednesday, November 16, 2011, 5:15pm; Reply: 461
I agree with the suggestions to see THE most trained doctors.   I suffered for decades only to get well eventually.. in my case my hip injurie was causing all sorts of issues.. once I found Prolo-therapy, my lower back got better and along with it the rest of me..   Now if I could find the cause of recurring 6 hour headaches I would be ...... happy.
Posted by: TJ, Wednesday, November 16, 2011, 6:07pm; Reply: 462
Quoted from ruthiegirl
I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.
To reiterate what spinnakertech said: Saying that you have fibromyalgia doesn't say anything about what's causing it.  "Fibromyalgia" just describes a set of symptoms, much like "Major Depressive Disorder" or "Restless Legs Syndrome".
Posted by: JJR, Wednesday, November 16, 2011, 8:19pm; Reply: 463
Leanne, I keep forgetting when you say your appointment is.  I'm going to pray with my family right now for you.  

You will make it!!!  I love you so much and you have helped me so much and I don't know what else to say but God is holding you up, just like you said.  The enemy is all around us, trying to steal our joy and our physical well being, but there is a better day coming.  God hears your sighs and counts your tears.
Posted by: nowishow, Wednesday, November 16, 2011, 11:17pm; Reply: 464
Quoted from ruthiegirl
I'm feeling pretty crappy today too. Definitely another fibro-flare. It's just so frustrataing when I start to feel better and then- BAM! I feel awful again. Brain fog, fatigue, muscle pain.I don't think I have lyme's but I'm not sure how I'd be diagnosed for that, or if fibromyalgia truly can explain everything that's  going on with my body.


I don't want to scare you but I have read about studies done showing a high percentage of fibromyalgia patients testing positive for Lyme.  :o  You might want to do some reading and see if it seems like a good fit.
Posted by: nowishow, Wednesday, November 16, 2011, 11:21pm; Reply: 465
Quoted from Ribbit
I feel like I'm dying and I feel like nobody cares.  How's that for a cheery greeting.  I know it'll get better once I'm back on my supplements.  But boy, TJ, I know why you take antidepressants.


I know exactly how you feel. I have spent many days feeling like that. I'm so sorry!!! It will get better, my thoughts are with you.
Posted by: nowishow, Wednesday, November 16, 2011, 11:23pm; Reply: 466
Quoted from TJ
My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!


Good luck!!! I hope it went really well. Keep us posted.  :)
Posted by: nowishow, Wednesday, November 16, 2011, 11:30pm; Reply: 467
I stopped my medication last Thursday as I was starting to miss work again from too much pain. I was trying to increase my meds (as my doctor would like) but it kicked my butt too hard. So I've taken a week off the bug killing type meds. I'm still taken my supplements so actually I feel a lot better. When I start again on Friday I'm going to start at a lower dose. If I didn't have to work I could stay with the higher dose and get through this faster, I think, but I've got to work. We have no savings having spent it all on the hospital and tests when my body crashed in 3/10. My dad helps out a lot which I'm so grateful for, but I certainly can't do the kinds of treatment I would if I had a bunch of money. I'll just have to be a patient patient.  :)
Posted by: JJR, Thursday, November 17, 2011, 12:30am; Reply: 468
TJ, I forgot to say, God be with you, good luck, break a leg, all that stuff!!!  It will be great.  You will learn a lot and be able to share it with us!!!!

Nowishow, I can relate to everything you just said.  Except I am not really working like you right now.  But we've spent a ton of money on trying to get me, and my son, better.  Although probably more on me.  But we had to do a lot of work with him too, not covered by insurance.  Seems like MOST things that are worthwhile aren't.  Although I have to admit, our insurance has covered some things that I'm super thankful for.  But we've spent a ton of money out of pocket.  And a lot of it was gifted money also.  God is good and provides.  But it sometimes is wait and pray, figuring out how it's going to all work out.
Posted by: Kim, Thursday, November 17, 2011, 2:01am; Reply: 469
Quoted from 11080


So I found an amazing LLMD, who happens to be the same LLMD that Kim is seeing--Dr. Jemsek in Washington, DC.  http://www.JemsekSpecialty.com




I am not as happy with jemsek as you are.   I can never get an appt with him because his clinic doesn't manage how many new patients they take each month.  I am supposed to follow up every 10 weeks and see Jemsek but can't get in for at least 4 1/2 months.  I am not feeling like I am going to get better seeing a doctor only 3 times a year.

They know my husband and I are not happy.  Still they are not making any accommodations to get us in to see either Jemsek or  PA without waiting longer than we are supposed to for follow up.  I am on orals but getting ready to change to a different LLMD.

If they can't listen and fix their problems with appointments for people already coming there, then money is more important than the patients.  If they add more staff, that doesn't fix my getting into see Jemsek.  He has to manage the patient load before that is going to happen.

He is a great doctor but I think it speaks volumes when an LLMD continually takes in new patients and doesn't manage his time for the people who have already waited months to get into the system but can't be seen in a timely fashion for necessary follow up appts.  

IV patients get preferential treatment because they pay $2K a month extra to the clinic.  Not a good recipe for success for the patients on orals.
Posted by: Goldie, Thursday, November 17, 2011, 1:22pm; Reply: 470
I would insist on getting my next two appointments set for the time 'your' calendar allows.

If you were secretary of state you would not be able to just come in or wait.. make them do it .. make you're time valuable as theirs.. tell the doctor in writing that you were not able to make a timely appointment and that he needs to intervene.  If he advised a visit in 2 month then so it should be and he needs to accommodate this.

If you put this in writing with paper copies to the nurses or appointment makers, and the Doctor, you will show them that you are serious.

Any doctor who can't follow up properly is liable for neglect.  He has rights to certain issues, but 'neglect' is not one of them.  
Posted by: ruthiegirl, Thursday, November 17, 2011, 3:52pm; Reply: 471
I'm just wondering how I could go about getting tested for lyme's or co-infections. Bear in mind that I haven't been healthy enough to work in years, and receive SSI for Fibromyalgia. The SSI is supposed to cover just my own living expenses, but with an unemployed ex husband, I'm not getting any child support, so that money needs to support them as well. Thank G-d for my mom's support- without *not having to pay rent* and being able to borrow money for true emergencies (food stamps ran out for the month and I need groceries, the car needs a repair I can't afford, etc) I don't know how I'd  be able to manage at all. Money is tight for her too right now, and I don't want to take advantage of her generosity.

There is simply no way I can afford any "out of pocket" medical expenses right now. It's frustrating how Medicaid would gladly pay for surgury or drugs, but I need to scrounge up the money for supplements. Medicaid will cover any tests I can convince my MD to order, as well as referrals to "in plan" specialists.

I've been trying to muddle through on my own the best I can. It's very frustrating to me that I'm following my SWAMI yet I'm still not well. I've had two major flares since finding out my secretor status and further refining my diet. I'm not sure if these are some kind of herxing reactions, or a sign that there are deeper issues that food alone won't heal.
Posted by: 11080 (Guest), Thursday, November 17, 2011, 4:00pm; Reply: 472
Quoted from Kim


I am not as happy with jemsek as you are.   I can never get an appt with him because his clinic doesn't manage how many new patients they take each month.  I am supposed to follow up every 10 weeks and see Jemsek but can't get in for at least 4 1/2 months.  I am not feeling like I am going to get better seeing a doctor only 3 times a year.

They know my husband and I are not happy.  Still they are not making any accommodations to get us in to see either Jemsek or  PA without waiting longer than we are supposed to for follow up.  I am on orals but getting ready to change to a different LLMD.

If they can't listen and fix their problems with appointments for people already coming there, then money is more important than the patients.  If they add more staff, that doesn't fix my getting into see Jemsek.  He has to manage the patient load before that is going to happen.

He is a great doctor but I think it speaks volumes when an LLMD continually takes in new patients and doesn't manage his time for the people who have already waited months to get into the system but can't be seen in a timely fashion for necessary follow up appts.  

IV patients get preferential treatment because they pay $2K a month extra to the clinic.  Not a good recipe for success for the patients on orals.


Kim,

It is tough getting the first few appointments.  But because you are local, you can put your name on a waiting list and when they get a cancellation, they will call you.  That's what I did and I got my follow-up appointment two months earlier than I would have otherwise.  I started my treatment the first week of July instead of the September appointment that I had previously scheduled.  Also, once you start treatment, you will see Dr. Jemsek every 4 to 6 weeks.  I don't know why you think you would only see him three times per year.  He has always been available for my follow-up appointments.  I see him now that frequently--every four to six weeks.  He carefully monitors my treatment protocol and listens to everything I say about how I am doing on the various medications.  He also answers every question I have.

Yes, he is in high demand and it is hard to get the first two diagnostic appointments prior to starting treatment.  He is doing the best he can to help as many people as he can.  He did not create this Lyme epidemic but he has devoted his career to developing what I consider to be the most successful treatment protocol.  He is constantly on the cutting edge of new drugs and incorporates them with success.

By the way, you do not have to pay the $2,000 per month fee even if you are on IV treatment.  There are several payment options--you can do the per diem option where you just pay for the specific medications and supplies as you need them.  Even if you do the $2,000 per month option, they structure the invoice with specific line items, much of which is reimbursable from your health insurance.

I understand your frustration in getting the first few appointments scheduled.  You said that the reason is because the office DOESN'T manage the number of new patients but it is just the opposite--it is hard to get the initial diagnostic appointments because they DO manage the number of new patients.  They're not going to get too many people started at once because they are committed to giving such close attention to each patient once they do get started.  Once you get started on treatment, Dr. Jemsek is very attentive.  Like I said, let the appointment desk know that you are local and want to be put on a waiting list for cancellations.  They usually give you several days to one week advance notice so it's not a last minute thing.
Posted by: 11080 (Guest), Thursday, November 17, 2011, 4:05pm; Reply: 473
Quoted from Goldie
Any doctor who can't follow up properly is liable for neglect.  He has rights to certain issues, but 'neglect' is not one of them.  


Goldie,

I think you misunderstand Kim's situation because she did not explain it completely.  Kim has had her first one or two diagnostic appointments but has not yet started on treatment with Dr. Jemsek.  Once she starts treatment, Dr. Jemsek is quite prompt with appointments and is always available for the follow-up appointments in the time that he says.  Dr. Jemsek is not liable for neglect under these circumstances.

Complaining in writing will not likely be effective.  What she can do is get herself on a waiting list for cancellations.  That works very well.
Posted by: JJR, Thursday, November 17, 2011, 5:28pm; Reply: 474
I would imagine it's got something to do with the fact that the cases of Lyme Disease are skyrocketing.
Posted by: 11080 (Guest), Thursday, November 17, 2011, 5:35pm; Reply: 475
Quoted from JJR
I would imagine it's got something to do with the fact that the cases of Lyme Disease are skyrocketing.


I agree.  Now that people are more empowered through the internet to research their own medical issues when doctors have told them for years that there is no hope and no cure to their ailments, Lyme Disease is finally starting to get the attention it needs.  Of course, it will take a political change in tides to make a real difference; but maybe that will happen through an uprising of the population as more and morereally sick people are realizing that they have a well-known bacterial infection that can be treated with antibiotics.

The number of Lyme Disease cases has risen sharply over the past few years and I expect that trend to continue dramatically.  I'm afraid it will become harder to find qualified LLMD's to provide treatment for the current and upcoming surge of Lyme cases.
Posted by: TJ, Thursday, November 17, 2011, 6:55pm; Reply: 476
Quoted from TJ
My appointment is tomorrow.  I'm excited and nervous.  I hope he sees reason and has done his homework!
It could have been worse, but could have been better, too.  He didn't do his homework. :-/  He is still somewhat of the mind that ADD, depression, bipolar, anxiety, and fibromyalgia are diseases (rather than syndromes as I described above).  He wasn't willing to make the diagnosis based on clinical symptoms because he thought these "conditions" explained my symptoms.  [On the other hand, he did give me some unexpected insight on the mental/emotional conditions: there have been studies examining the brain function of children (via MRI) that have shown physical changes in the brains of children subject to abuse or otherwise "unsafe" home environments (think), and my childhood home was not an emotionally safe place.]

On the plus side, he didn't disregard the possibility that it's Lyme disease.  He said he is going to try to find a Lyme specialist he can get me in with before my insurance runs out.  The University of Utah (with a medical school) is right up in SLC, so there should be someone there who can help me, even if they aren't a LLMD.  I hope that the Genoma Security and antibiotics have been enough to help me develop some antibodies against Lyme that will show up on whatever tests they do (if I can get in to see someone soon enough, that is).

Meanwhile, I got my unemployment papers showing that I will get about 15% of my former salary as a benefit.  This really frustrates me.  In deciding what my benefit should be, they considered Q3 and Q4 of 2010, and Q1 and Q2 of 2011 to determine my "income".  The problem is that I started work in June (end of Q2), and I earned more money in Q3 of 2011 than I did in the previous four quarters combined. >:(
Posted by: Goldie, Thursday, November 17, 2011, 7:59pm; Reply: 477
I am somewhat frustrated that sufferers still have to follow the good 'name' of a doctor rather then be able to follow a group of tests that will then be followed by some given treatment.  There can not be that many protocols to hit or miss?  

Yes everyone can be treated individually for this or that, but I would bet that there are no more then 100 ways to deal with 100 issues, parasites and all.  I can not believe that specialists don't know enough about issues by now --- that they can not openly SHARE the info.   I mean even NEEDING to ask WHICH type of test is needed, or how something will determine some answers or treatment -- This just seems really counter productive.. Some test could be done any where.... or at least I think so..

There has to be a list to follow or a view even for clients to review.  Knowledge is important.... where is it being taught or info exchanged?  I am frustrated, and I am not even sick but I fear the out doors enough that I would build enclosures for kids to play in, and avoid the woods, next year when there is to be on epidemic year for new LYME infections.  

I mean even waiting for years to get really sick is a sick idea in the first place.  There must at least be certain tests that could be streamlined to save on furthering 'infection' time.  

Is there not a 'INTERNET' place where clients- sick people- can get such comparison info? .. even if they had to do their own reporting one item at a time? I feel for those who are sick even now and don't even know it.  The enormous cost of loss in employment alone should demand such a response..   I am sorry if I vent here, where you are suffering, but is there not a place to make such a difference?  and can not healthy people help? how would one go about it?
Posted by: TJ, Thursday, November 17, 2011, 8:15pm; Reply: 478
Oh, I almost forgot: I restarted my supplements last night.  I still spent 10 hours in bed last night, but I'm feeling better today: particularly, I'm thinking more clearly, and I will need that to deal with the unemployment paperwork and writing an appeal.
Posted by: JJR, Thursday, November 17, 2011, 8:51pm; Reply: 479
Quoted from Goldie
I am somewhat frustrated that sufferers still have to follow the good 'name' of a doctor rather then be able to follow a group of tests that will then be followed by some given treatment.  There can not be that many protocols to hit or miss?  

Yes everyone can be treated individually for this or that, but I would bet that there are no more then 100 ways to deal with 100 issues, parasites and all.  I can not believe that specialists don't know enough about issues by now --- that they can not openly SHARE the info.   I mean even NEEDING to ask WHICH type of test is needed, or how something will determine some answers or treatment -- This just seems really counter productive.. Some test could be done any where.... or at least I think so..

There has to be a list to follow or a view even for clients to review.  Knowledge is important.... where is it being taught or info exchanged?  I am frustrated, and I am not even sick but I fear the out doors enough that I would build enclosures for kids to play in, and avoid the woods, next year when there is to be on epidemic year for new LYME infections.  

I mean even waiting for years to get really sick is a sick idea in the first place.  There must at least be certain tests that could be streamlined to save on furthering 'infection' time.  

Is there not a 'INTERNET' place where clients- sick people- can get such comparison info? .. even if they had to do their own reporting one item at a time? I feel for those who are sick even now and don't even know it.  The enormous cost of loss in employment alone should demand such a response..   I am sorry if I vent here, where you are suffering, but is there not a place to make such a difference?  and can not healthy people help? how would one go about it?


One of the frustrations of myself and others is that I suspected it early on, got tested, and came back negative a couple different times.   So it wasn't like I wasn't trying.  But the "normal" tests doctors run just don't do it right I guess.  Why is Igenex the only one doing it right?  And why do we have to pay out of pocket for a test that is done properly, and then insurance will cover ones that don't work.
Posted by: nowishow, Thursday, November 17, 2011, 9:58pm; Reply: 480
Quoted from 11080


What she can do is get herself on a waiting list for cancellations.  That works very well.


This is what I did with my doctor as well. It worked well for me.
Posted by: nowishow, Thursday, November 17, 2011, 10:09pm; Reply: 481
Quoted from ruthiegirl
I'm just wondering how I could go about getting tested for lyme's or co-infections. Bear in mind that I haven't been healthy enough to work in years, and receive SSI for Fibromyalgia. The SSI is supposed to cover just my own living expenses, but with an unemployed ex husband, I'm not getting any child support, so that money needs to support them as well. Thank G-d for my mom's support- without *not having to pay rent* and being able to borrow money for true emergencies (food stamps ran out for the month and I need groceries, the car needs a repair I can't afford, etc) I don't know how I'd  be able to manage at all. Money is tight for her too right now, and I don't want to take advantage of her generosity.


I know what you mean. If I wasn't in a critical condition I wouldn't have paid for all the tests that I got and I'd still wonder what was wrong with me. I got a lot of help from friends and family thank goodness, but it's so expensive to pay for all this yourself. It's really a terrible situation when you can't afford medical care.

Are you taking anything that helps with detox? That would be a basic thing you could do to help yourself. It is the biggest piece of the healing in my opinion.

Chlorella
Apple Pectin
Vitamin C
Alpha Lipoic Acid
Omega Oils - I like hemp

If you have pain in the liver area, you might want to try milk thistle

If you have pain in the spleen area, you might want to try Red Root

At least you're eating right and that helps a lot.  :)
Posted by: Goldie, Thursday, November 17, 2011, 10:47pm; Reply: 482
Quoted Text
One of the frustrations of myself and others is that I suspected it early on, got tested, and came back negative a couple different times.   So it wasn't like I wasn't trying.  But the "normal" tests doctors run just don't do it right I guess.  Why is Igenex the only one doing it right?  And why do we have to pay out of pocket for a test that is done properly, and then insurance will cover ones that don't work.


So could I ask, here or in another thread..   would you share in specifics , maybe even time and laboratory.. sharing all the failures and then eventually the BINGO?  would you share so that others could know the cost or coverage -- or that new people could at least EXPEDITE certain test's that brought you closer to proper treatment?  

What test did you take that did nothing - for knowledge or diagnosis?

What tests's did you take to rule out  this or that.. ?

What Test did you take that showed you had this or that? excluding or including Lyme.. ?
Posted by: JJR, Thursday, November 17, 2011, 11:12pm; Reply: 483
Quoted from Goldie


So could I ask, here or in another thread..   would you share in specifics , maybe even time and laboratory.. sharing all the failures and then eventually the BINGO?  would you share so that others could know the cost or coverage -- or that new people could at least EXPEDITE certain test's that brought you closer to proper treatment?  

What test did you take that did nothing - for knowledge or diagnosis?

What tests's did you take to rule out  this or that.. ?

What Test did you take that showed you had this or that? excluding or including Lyme.. ?


It would be super long.  I could, and if others want I will.  It would take me a while to do it though.  I'd have to pull out my notes and such and even then I'd probably miss something.  And putting a price on it would be very difficult.  But it's significant.  I'll give you an overview in a nutshell:

5 years old.  Bit by tick.  Someone removed it with Gasoline.  It was on my head.
1999 or so. Up north Camping.  I believe I was bit, not sure, had a weird rash on my knee.  Looked kind of like a circular bruise with it being clear in the middle and I had never seen anything like that before.  Was sick for a week or two after that.  Got tested at a Doctors office for lymes and it came back negative.
Not long after that I developed a heart arrhythmia that comes and goes.
2006 October.  Digestion crash.  Could not eat.  Lost 20 pounds in one month.  Have been losing ever since.  Went to regular docs, got all kinds of testing, including lymes.  Nothing.  High BP.  It's in my head.  Starting looking for new doctor.
Chiro did some tests.  H.Pylori positive.  Yeast too.
and it goes on and on and on from there.
ND told me I had lymes.  But I had so much other junk going on, it wasn't top of my list to look into.  Plus, he was an ND.  No blood test.  Biofeedback.
Got hooked up with Holistic doctor that deals a lot with autistic children and chronic problems. Lots of tests with him.  Digestion, acetylation, food allergies. Lots of problems found.  
Last fall went to mayo clinic in Jacksonville.  got a full work up for a week.  Most significant was I failed neurological testing and came back and got diagnosed with POTS by my cardiologist.  
This spring my Holistic doctor muscle tested me for lymes and told me according to them I have it.  And started treating me with homeopath.  That made it better and pulled me out of a bad spot.  

But I am in no way out of the woods.  I'm still trying to figure out what to do.  I've had a rough two weeks here.  But that's not uncommon.  For the last 4 years I've ended up at the ER and admitted one year at this time.  All within a week of November 7 every year.  

Right now I'm going to start counseling to see if that helps too.  Father was an alcoholic.  Maybe something buried I can't get rid of.  I struggle with fear and anxiety and insecurity and love according to some people.  So....

Then, I have to figure out what the best course is to deal with the lymes.  I'm not sure yet. I'm just not 100% sure there is a particular protocol that works.  My aunt is from up north and was talking to my Mom the other day.  My mom said she had a laundry list of people she knew that got lymes and some got better, some never did, and none are really ever the same.  She said, "You know he'll never be the same".  She's kind of a crass woman and my Mom was anything but encouraged.  I was encouraged because it shows why I feel as lousy as I do.  Or at least shows how it can make such a huge impact on someone.  As it is me.  But my point is, I'm just not sure which way to go with it.  Go to an LLMD.  Stay with my current doc.  Do both.  Shoot myself.  Which I'm not going to do.  I feel like a baby starting out life again having to take each step overcoming my fears, anxiety's, questions, worries.  Etc.  

But God is good.  And he's holding my family close.  

I can easily say we've spent over 30K on all this.  That much I know.  But it's more than likely more than that.  

And then there was my sons health problems.  That's another long drama.  But had an impact on my health too I believe.  


Posted by: Goldie, Friday, November 18, 2011, 2:31am; Reply: 484
I thank you for that enumeration

.. I wish you and others would enumerate, because then at least other people could avoid going on the merry go round.  
Maybe those who come here early in misery could save some cash they will need later.  
I just wish there was at least ONE test that would be correct..

Bio- body-energy testing can work, but it is a different kind of science, and will most likely not get the best treatments soon enough.. It takes a brave Doctor to follow through on treating Lyme.  

for me a data base program would always be a better answer then not.... I do thank you for the time you took..THANKS


  
Posted by: 11080 (Guest), Friday, November 18, 2011, 3:38am; Reply: 485
Some people I've talked with have spent $50k on treatment.  These people mostly were on IV antibiotics for several months after having tried orals for a while.  What's funny is that not one of them complained about the money because they got better.  I also am not complaining because I'd rather spend the money on getting my life back than on anything else.

I have found some ways to cut costs with my IV abx and I expect to spend about $30k to $35k on treatment, even with 7 months of IV antibiotics.  This includes doctors appointments, home health nursing care, cost of drugs, cost of supplements and  cost of supplies to maintain my IV line and administer the drugs.  I put as much as possible on credit cards, including doctor's costs, home health nursing care, supplements, supplies, and much of my shopping expenses at the grocery store and drug store to reserve my cash.

Fortunately for me, I was employed full-time before I started treatment and went out on Short-Term Disability, which covered 6 months of treatment at 80% of my salary.  For the seventh month, I may have to return to work or my Long-Term Disability might kick in.  I think Long-Term Disability will probably kick in so that I can finish the IV part of my treatment.  There will still be a maintenance period of taking oral abx a few times per month.  I should be able to work during that time without much difficulty.

But I've definitely turned the corner on this disease.  I am in my fifth month and I can list out many symptoms that have completely disappeared.  There are more and more symptoms that disappear every two weeks or so.  I am very optimistic that I will be healthy again and able to work.  Then I can focus on paying off the credit cards.  The interest rate on my credit cards is between 0% (for another six months) and 7.99% so it's not so bad.

I know for a lot of people, they get financial help from their friends and families.  I am thinking that when I'm healthy again, I'd like to start a non-profit organization to raise money and help people pay for this treatment.

Until about 2007, health insurance companies regularly paid for many months of IV antibiotic treatment for Lyme Disease patients.  But politics got in the way and a bunch of doctors (some rheumatologists, not infectious disease specialists) published articles saying that long-term antibiotic use was not scientifically proven to get rid of Lyme Disease and they characterized the treatment as experimental.  The insurance compaines jumped all over these published reports to start denying claims for long-term IV antibiotic use for Lyme Disease calling it experimental treatment.  They now will only pay for the first 30 days, which they did in my case.

As doctors cure more and more patients with long-term antibiotics, I'm hoping insurance companies will be forced to start paying agin.  In the meantime, it is the insurance companies, not patients or other doctors, who are the ones filing lawsuits against LLMDs to try to run them out of business.  It is a huge political problem, which is just fed by the difficulty in diagnosing the disease.

So, I'll get off of my soap box and focus on getting better.  I don't have the luxury of getting angry right now.  I just have to heal.  Later I'll get angry enough to try to do something about it.  Right now, I'm just grateful for doctors like Dr. Jemsek who is truly helping me to get better.
Posted by: TJ, Friday, November 18, 2011, 5:01am; Reply: 486
Quoted from 11080
Some people I've talked with have spent $50k on treatment.  These people mostly were on IV antibiotics for several months after having tried orals for a while.  What's funny is that not one of them complained about the money because they got better.  I also am not complaining because I'd rather spend the money on getting my life back than on anything else.

I have found some ways to cut costs with my IV abx and I expect to spend about $30k to $35k on treatment, even with 7 months of IV antibiotics.
What do you do if you don't have money to spare?  That is my catch 22.  I don't have the money, I can't get it unless I work, I don't know how long I can work, and right now I'm out of work.  I'd been managing up until I got laid off, but could I have kept it up indefinitely?  I don't know.  I'd like to think I could have, but then I wonder how the treatment would affect me, plus I wasn't earning enough to pay for specialists and IV antibiotics out of pocket.  I could afford my regular general practitioner, and I could afford orals (generics at least), but if that wasn't effective enough, what then?
Posted by: Goldie, Friday, November 18, 2011, 3:10pm; Reply: 487
spinnakertech....  THANK YOU SO MUCH..

The great cost of this treatment is one area where one can have opinions .(I had been misdiagnosed for many years and even more years mis-treated with ineffective treatments).

Yet the one concern I seem to come back to is the high cost of WAITING to get the diagnosis.  I still have not seen anyone here having A NAME for the first or last TEST you all took to find out what is really going on.. A name of a test... or accumulation of test names.

I am understanding that there might be 10 or twenty different ones, and some may come from one symptom to the next SYMPTOM, and then eventually someone putting them all together.. but there has to be a connecting thread of TESTS you all are going trough.. reg meds or Nd's and the like.....

The frustration by some who are in pain and suffer greatly and then see one doctor or another, or a specialist of this or that.. does it not finally come down to one set of Tests and possibly one set of lets say antibiotics or some other form of treatment.

NOT wanting to change the discussion from medical tests to diet.. expecting BTD is always helpful, how far into your LYME DIAGNOSIS did you start BTD eating?  did you eat BTD before getting sick? or after you where sick with LYME already? Is this question even important?  How much has diet made a difference to the LYME and finally LYME long term doses of antibiotics??  

Quoted Text
What do you do if you don't have money to spare?  


That is why I am asking the questions here, hoping to shorten that infection time, by looking at 'cutting out' all the waisted time while waiting, waiting, and waiting to get worse instead of getting what you need.      ===   I mean we as humans don't make cancer patients WAIT until they get sicker!  
Posted by: ruthiegirl, Friday, November 18, 2011, 3:27pm; Reply: 488
Quoted from nowishow

Are you taking anything that helps with detox? That would be a basic thing you could do to help yourself. It is the biggest piece of the healing in my opinion.

Chlorella
Apple Pectin
Vitamin C
Alpha Lipoic Acid
Omega Oils - I like hemp

If you have pain in the liver area, you might want to try milk thistle

If you have pain in the spleen area, you might want to try Red Root

At least you're eating right and that helps a lot.  :)


I'm not noticing any pain in the liver or spleen area; when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.

I'm not taking chlorella, althought that's a supplement I've been considering. Apple is an avoid, so apple pectin would be a poor choice. Most commercial vitamin C supplements are corn-derived, but I do drink rosehip tea daily (and eat the softened rose hips.)

For supplemental oils, I take black currant seed oil, and I usually eat the reccomended portion of fish each week. I've compared DD1's dose of fish oil with the package of sardines, and a can of sardines has as much EPA as 2 days' worth of her supplements (or 4 days' worth of the amount reccomended on the bottle.) The fish oil I currently have in the house for DD1 includes anchovy oil, which I won't take because anchovies are an avoid for me (but neutral for her.)
Posted by: 11080 (Guest), Friday, November 18, 2011, 4:14pm; Reply: 489
Quoted from Goldie

Yet the one concern I seem to come back to is the high cost of WAITING to get the diagnosis.  I still have not seen anyone here having A NAME for the first or last TEST you all took to find out what is really going on.. A name of a test... or accumulation of test names.

I am understanding that there might be 10 or twenty different ones, and some may come from one symptom to the next SYMPTOM, and then eventually someone putting them all together.. but there has to be a connecting thread of TESTS you all are going trough.. reg meds or Nd's and the like.....

The frustration by some who are in pain and suffer greatly and then see one doctor or another, or a specialist of this or that.. does it not finally come down to one set of Tests and possibly one set of lets say antibiotics or some other form of treatment.

NOT wanting to change the discussion from medical tests to diet.. expecting BTD is always helpful, how far into your LYME DIAGNOSIS did you start BTD eating?  did you eat BTD before getting sick? or after you where sick with LYME already? Is this question even important?  How much has diet made a difference to the LYME and finally LYME long term doses of antibiotics??  



That is why I am asking the questions here, hoping to shorten that infection time, by looking at 'cutting out' all the waisted time while waiting, waiting, and waiting to get worse instead of getting what you need.      ===   I mean we as humans don't make cancer patients WAIT until they get sicker!  


Goldie,

The point many of us have been making is that there is NO TEST for Lyme Disease that is accurate.  The blood test used by the CDC was originally intended to measure trends across a large community of people to see whether there was a measurable increase in Lyme Disease within communities.  This is the Western Blot test.  Unfortunately it has only a 60% chance of accurately spotting Lyme Disease (leaving 40% with false negatives and untreated) and it has what some doctors claim to be a 20% - 50% chance of creating false positives.

The problem with blood testing is that Lyme Disease and its co-infections stay in the blood stream for only a short period of time after the patient is infected--only 2-4 weeks.  Once the bugs are out of the blood stream, they won't show up on tests.  The other problem is that the Western Blot checks the immune system's response to the bugs through antibodies.  But a weakened immune system may not create the proper antibodies.  Also, if the patient received a short dose of antibiotics (e.g., Doxycycline) shortly after being infected, the immune system may never make antibodies to the bugs, so the Western Blot test would be negative.

Two other problems with the Western Blot test is that it only tests for ten possible immune responses (bands) and five of the ten must be present for the CDC to consider the test positive for Lyme Disease.  But four of the ten bands are not specific for Lyme Disease.  What's worse, two of the most specific bands for Lyme Disease were removed from the Western Blot test in the early 1980's when some private companies tried unsuccessfully to create a vaccine for Lyme Disease.  These two very specific bands were never added back into the Western Blot test because anyone who got the vaccine (which was only on the market for a very short time) would test positive on those two bands and it might be a false negative.

Now the most appalling part of the testing.  Doctors have relied on the Western Blot test as the only tool to test for Lyme Disease.  Even if someone had four of the ten bands as positive, the doctor would say that it came back negative because five of the ten were not positive.  BUT THE WESTERN BLOT WAS NEVER INTENDED TO BE USED AS A DIAGNOSTIC TOOL!!!  Even the CDC has said that Lyme Disease should be diagnosed based on symptoms and reaction to antibiotic treatment NOT based on the Western Blot test alone.  The CDC has clarified that the Western Blot was developed only to see trends among large populations of people; NOT to diagnose an individual with Lyme Disease or to rule out Lyme Disease for an individual.

There are other tests available through Igenix Labs in California which test for DNA of Lyme Disease, Babesia, and Bartonella in the blood stream.  But the DNA of these bugs will only be in the blood stream if the bugs are killed or during the time that they are reproducing, which is for a very short time every 4-6 weeks.  So you have to get the blood drawn at the right time.  But who knows when that time is?

Now back to your question--how does one get diagnosed with Lyme Disease?  The answer is that regular physicians are not qualified to provide the diagnosis.  Even specialists such as rheumatologists, neurologists, orthopaedists, gastroenterologists cannot diagnose Lyme Disease.   The ONLY WAY is to go to an LLMD who truly knows how to interpret the blood test (a positive test on band 41 of the Western Blot means the patient was exposed to Lyme Disease at some point) and based on symptoms.  They can rule out symptoms that are not Lyme related but also they can see the whole picture of symptoms in a Lyme patient.

Regular physicians will try to treat the symptoms one by one like my primary care physician did for 10 years.  But I just kept getting sicker and sicker over those 10 years.

To answer your other question, I started on BTD one year before I was diagnosed with Lyme Disease.  i thought I only had an autoimmune problem (because of positive ANA blood test) but the autoimmune problem was actually caused by the Lyme Disease sitting in my organs, muscles, and joints and my immune system was attacking it but my immune system was way overloaded and outnumbered.  This showed up as an autoimmune disease but my rheumatologists, through countless expensive blood tests, could never identify which one.  The BTD eased many of my symptoms and actually turned my positive ANA (autoimmune disease) to a negative ANA.  This happened because BTD helped to boost my immune system.

But I never got better on BTD and when an orthopaedist gave me a cortisone shot in March 2011, my immune system shut down (which happens with cortisone) and the Lyme Disease had a field day jumping back into my organs, muscles, and joints, and causing a relapse.  That's when I knew I had Lyme Disease and I finally went to an LLMD in June 2011 and finally got the diagnosis.

By the way, another test is a Brain MRI.  Lyme Disease loves the tissue of the brain and will cause scarring and lesions in the brain.  But be careful-a neurologist will diagnose the scarring and lesions as Multiple Schlerosis or Parkinsons and will say it is not treatable.  They don't know what causes Multiple Schlerosis or Parkinsons, though, so they don't have a cure.  Many of those diagnosed with MS and Parkinsons actually just have a bacterial infection (Lyme Disease), which is treatable with aggressive antibiotics.

So BTD helped me heal my gut and improve my immune response prior to starting the aggressive Lyme Disease treatment.  It has been invaluable in preparing me for this difficult treatment; plus I am handling the treatment much better than many because of BTD.  I can feel better on BTD, but it alone will not cure Lyme Disease.  It only helps some with the symptoms and it won't help if my body has a crisis, like getting a cortisone shot, or needing surgery, or getting another disease such as cancer.  If any of those things happen, your body will be dealing with the stress of those issues plus Lyme Disease will be able to multiply again and you will relapse.

So, to find out if you have Lyme Disease:
--DO NOT got to a phsycian or a traditional specialists
--DO GO to an LLMD who will do a battery of blood tests AND will make a record of symptoms

Do start on BTD as soon as possible so that your body is more prepared to handle the treatment.  And be prepared for long term antibiotic use.  However, even long-term IV abx will be over in 6-7 months if I respond to treatment well.  And after that, there will be a period of oral abx, but I'll take those only about 4 days per month and only for 9-12 months.  After all that, if there is still any Lyme Disease in my system, my immune system will keep it under control and I expect to feel as good as I did 10 years ago.

Posted by: Goldie, Friday, November 18, 2011, 4:50pm; Reply: 490
Quoted Text
So, to find out if you have Lyme Disease:
--DO NOT got to a physician or a traditional specialists
--DO GO to an LLMD who will do a battery of blood tests AND will make a record of symptoms

Do start on BTD as soon as possible so that your body is more prepared to handle the treatment.  And be prepared for long term antibiotic use.  However, even long-term IV abx will be over in 6-7 months if I respond to treatment well.  And after that, there will be a period of oral abx, but I'll take those only about 4 days per month and only for 9-12 months.  After all that, if there is still any Lyme Disease in my system, my immune system will keep it under control and I expect to feel as good as I did 10 years ago.


THANKS this seems to be where I am looking to make sense out of this frustration....

I think in future I would send many more 'clients' that feel miserable to a LLMD sooner rather then later, especially IF they exhibit many signs as listed in another post way earlier here (THANKS for that list also) ...  

I agree that BTD is 'the' important part of supporting one self.. the cure with it is not expected by me.. But reading that it might have helped you with your immune response is impressive and in my book expected, especially if one was eating all kind of junk just to feel better.. which I can understand as well.

Have any of you dealt with not only feeding the body, meds and foods, but also with dealing internally with ELIMINATION of whatever might be discarded.  Have any done colon cleanses, to at least facilitate easy elimination of what might be lurking in the colon? (water and or coffee enemas?) if not why not or has no one mentioned it as PART of the other available treatments?

I am aware that there are many micro-organisms normal in the body but many also are not and having them linger or shed their own skins or fecal matter might better be washed out, gently..
What is the general view on it????? or is one just to exhausted to do even one more thing?

Quoted Text
THANKS FOR A GREAT response!!  The lack of a test, or series of tests is incredible!!!  
  
Posted by: ABJoe, Friday, November 18, 2011, 5:18pm; Reply: 491
Quoted from ruthiegirl
... when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.

This sounds like lymph backup (causing the neck and shoulder pain), then release and drain into the gut causing the toxic headache and muscle aches.
Posted by: TJ, Friday, November 18, 2011, 6:05pm; Reply: 492
I'm fully back on my supplements, and I feel pretty good again today -- at last!  I woke up early, made a stencil for my dehydrator trays, cut out parchment liners for them, and loaded them up with apple and banana slices and "rice cakes" (cooked rice squished together into a patty; I hope they stick together).  Those little pills and powders make a remarkable difference.

Even if my doc can get me in with a specialist, I don't know if it's a good idea.  Knowing my luck, I'd get a diagnosis now that would be considered a "pre-existing condition" when I get insurance again and treatment wouldn't be covered.  On the other hand, if he/she doesn't diagnose me, I will have wasted a lot of money on tests using up the deductible on an insurance policy I won't have after this month.  So I'll just sit tight, keep taking supps, and look for another job with health insurance benefits.

Quoted from Goldie
I mean we as humans don't make cancer patients WAIT until they get sicker!
Lyme patients aren't quite in such immediate peril as cancer patients, are they?
Posted by: Chloe, Friday, November 18, 2011, 6:07pm; Reply: 493
I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were
found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide
in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance
would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months...
but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up
with fibromyalgia and neurological symptoms that were better helped when I found a master
herbalist.

Still if anyone lives within reach of Dr. Ginger Nash in Wilton, CT (she works with Dr. D) it might be worth getting another opinion, especially if conventional medicine isn't helping.

I dunno....medical technology to determine tick toxin pathology isn't coinciding with the vast symptoms of Lyme for way too many people.

And then again, all fibromyalgia isn't Lyme Disease.  I found my fibro to have a huge emotional
component...stress, negative thinking and lots of fear.  Sometimes addressing emotional issues
and spiritual issues are profoundly beneficial.  
Posted by: 11080 (Guest), Friday, November 18, 2011, 8:44pm; Reply: 494
Quoted from Chloe
I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months... but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up with fibromyalgia and neurological symptoms that were better helped when I found a master herbalist.


In my opinion, tt's too bad you didn't just spend that "total fortune" on antibiotics--you probably would be cured by now, especially given your positive response to doxycyline, and your money would have been better spent.
Posted by: Goldie, Friday, November 18, 2011, 10:09pm; Reply: 495
As I see the problem -doctors might not treat aggressively (any more, for fear of persecution) since promises of :"you probably would be cured by now,"  might not be so, no matter the meds.. long term one just does not know.. but then I would take any 10 years feeling better if that is: 'all there is' ,,,, then indeed: then lets keep dancing..

I think the decision to 'consider' that one might have LYME is like 'coming out of the closet' .. one can hide from ones own SELF.. but the body still knows and has no hesitation to remind you that you have not met it's needs yet.. Sticking the head in the sand will not work.. (not for medical doctors either!) It takes knowledge and forbearing to ORDER the test and then - be ready to be disappointed - when one proves negative.  ESPECIALLY when those negative tests are so misleading.

I feel for those who 'know' that they are ill, but are told it's all in their head.. happened to me up to the day before I opted to change doctor and got the correction I needed... I got lucky, but over 30 years later I am still ANGRY.. I lost my youth to misdiagnosis, and offered up my health for test after test, poisoning me with radiation.
  
Later, I had new injuries and was not 'fixed' by a score of 'therapies'.. I needed to accept that many things don't get fixed by meds or pills.  Looking elsewhere at least NOW is easy via INTERNET.. I suffered 63 years, and only recently 4 years am painfree-outside of daily 6 hour headaches-I feel for the frustration of going from Peter to Paul to Tom, Dick and Harry.. the cost in hopes dashed is way to big to pay. -Never mind the money-. I lost 63 years of living and 40 years of income to feeling miserable, I am so sorry for all who go through the same.

I am going to pull out the posts that show the list of symptoms and the long lists of trials and tribulations... so if I ever need to show it to others who are suffering without the benefit of a label can at least get the info to consider.

Labels are mostly useless, but the movie Under Our Skin is at least showing others (family members and doctors) that the sufferer is not 'crazy'/  that is a big thing.

If I did not own equipment that is protecting me from great pain, I would be taking endless drugs.. and those same drugs would cause me to be sick.. (a friend just developed near blindness from harmful drugs.    

I am grateful for all your responses!!
    




  
Posted by: JJR, Friday, November 18, 2011, 10:23pm; Reply: 496
Quoted from Chloe
I have never tested positive for anything related to Lyme disease.  Dozens of co-infections were
found on biomeridian testing but not in conventional tests.  The spirochetes become stealth...hide
in the body...latch onto the immune system in a way that detection is often difficult or impossible.  Yet, I had a bullseye rash, 104 fever in the middle of the summer...pulled a tiny deer tick out of my shoulder that was discovered by my husband with a magnifying glass.  And still I didn't test positive.  Imagine how it feels to find a LLMD to determine what to do with me.... but insurance
would not cover treatment because the doctor couldn't prove he was treating a patient with Lyme or any of its co-infections.  It's why I spent a total fortune on everything alternative known that I could possibly do.  I did get a holistic MD in the early 90s to treat me with doxy for 4 months...
but it was just to see if symptoms would be eradicated.  Initially, yes...long term, no...I wound up
with fibromyalgia and neurological symptoms that were better helped when I found a master
herbalist.

Still if anyone lives within reach of Dr. Ginger Nash in Wilton, CT (she works with Dr. D) it might be worth getting another opinion, especially if conventional medicine isn't helping.

I dunno....medical technology to determine tick toxin pathology isn't coinciding with the vast symptoms of Lyme for way too many people.

And then again, all fibromyalgia isn't Lyme Disease.  I found my fibro to have a huge emotional
component...stress, negative thinking and lots of fear.  Sometimes addressing emotional issues
and spiritual issues are profoundly beneficial.  



That last part is the part I'm really digging into now.  I know that my anxieties and fears just make it worse.  Adds more stress on the body.  It's not strange to have it, as it seems common with all this, but I need to learn how to master it, if possible.  So it doesn't spin out of control and make the physical worse.  It's not an easy thing to overcome though.   I just got done with my pastor and it was a good session.  He gave me on physical tip though.  He said if you're not eating 2000-3000 calories a day, your body will start eating itself and you're going to have problems.  Mentally, physically, etc.  He said, I need to start pushing the boundaries on how much I eat.  He was nice and said he didn't want to make me feel worse, but I have to get the right caloric intake.  And I do forget that sometimes.  

Spinnakertech, from all the research I've done, Antibiotics are not enough alone to kill it all.  From what I understand you have to train your immunse system or boost it, you have to kill the lyme, and you have to deal with the coinfections.  ABX might not cover all the coinfections.  Possibly.  I am glad that you're doing better and I'm sure you're on the right track though.
Posted by: nowishow, Saturday, November 19, 2011, 12:28am; Reply: 497
Quoted from ABJoe

This sounds like lymph backup (causing the neck and shoulder pain), then release and drain into the gut causing the toxic headache and muscle aches.


Ruthiegirl - I agree with this. This product really helps me.
http://www.pharmacyspecialties.com/site/679199/product/BR136

I apply it on any areas of my neck, upper back, or upper chest that feel knotted up and it seems to get the lymph system draining in that area. I've been using it for at least a month and it has continued to help me. It might be worth a try.  :)
Posted by: Kim, Saturday, November 19, 2011, 1:52am; Reply: 498
Quoted from 11080


Goldie,

I think you misunderstand Kim's situation because she did not explain it completely.  Kim has had her first one or two diagnostic appointments but has not yet started on treatment with Dr. Jemsek.  Once she starts treatment, Dr. Jemsek is quite prompt with appointments and is always available for the follow-up appointments in the time that he says.  Dr. Jemsek is not liable for neglect under these circumstances.

Complaining in writing will not likely be effective.  What she can do is get herself on a waiting list for cancellations.  That works very well.


Spinnertech, you are mistaken.

I am on antibiotics and supposed to see Jemsek by the first week of January after my third cycle.  You are getting better treatment because you are giving that practice that huge IV monitoring fee each month.  So if you do orals, you are at the bottom of the list.   They are overbooking new appts and follow up appts with Jemsek and he only puts his calendar out 3 months at a time.  So I couldn't even make a couple of appts ahead of time.

The cancellation list hasn't worked for anyone I know.  I don't drive and need a days notice to get into DC.  

Not everyone is enamored with this doctor.  Their PA's aren't consistent either.  

I already sent in a deposit and paperwork to see another doctor who does have time for me to see them.  This one won't charge me $2K  a month to be on IV antibiotics.  

Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.
Posted by: Goldie, Saturday, November 19, 2011, 12:37pm; Reply: 499
Quoted Text
Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.


Thanks I will do so.  

I will also actively do something about this situation that makes every sick person spend their last available dollar for years, all because there is not a better plan available.  The money spent on such situations is ridiculous.  I had done it for my condition, and know the hardship of it.  I have every intention to make a small difference somewhere, somehow.  

Those lists of enumerations of your situations above help a lot.  Even just listing the name of antibiotics you are on, that seemingly work,  could have a cumulative effect.  Possibly there are different kinds and strength and maybe different tests, but in the end it comes down to some few things, few protocols, and few items that help.  

Few might be 10 25 or 50, but even that would not be a big thing to understand if there was such a list some place.  There are enough Lyme sick people by now, to band together in some pro active way -  to make a registry useful.  Maybe that is something to be considered.  YET,   the only effort it might take is a need for healthy individuals, healthy bystanders to take up the cause to help those who are just to tired and to sick.  

Kim does the book you mention have such a place for Lyme sick people to congregate? like this little THREAD here is at least give voice to a dozen or so people, who came here accidentally by design and have at least a voice here.  Better then nothing...

I know of some other websites that have LYME good info, I will look to see if there is a combined effort someplace that can be used to get a bigger 'home' place VOICE on the Internet...  I remember certain sites mentioned in early postings here, I will start there and if there are ideas to be added to my search, point them out or even let others (healthy/strong) people join me.  There has to be some way to accomplish 'something'.  
Posted by: Kim, Saturday, November 19, 2011, 2:51pm; Reply: 500
There are lyme organizations that have forums like this one where those affected by Lyme disease and coinfections can help each other out.  The book will mention a few of them.

Turn the Corner Foundation.com
Lymenet.org
lymefriends.org
http://www.mdjunction.com/forums/lyme-disease-support-forums/

I spend most of my time on Lymenet.org.  I also one of the people who give out names of LLMD's to people in VA,MD and DC.
Posted by: nowishow, Saturday, November 19, 2011, 4:55pm; Reply: 501
Quoted from ruthiegirl


I'm not noticing any pain in the liver or spleen area; when I get fibro-flares, I tend to get the most pain in the neck and shoulders, along with headaches and all-over muscle aches.



You might try high doses of vitamin D, like 5,000 to 10,000 units a day. It really helps with my muscle aches. It would be better if you could get a test first to see if you are low, but most of us are extremely low. As a group we tend to need much higher doses of supplements then the general public.
Posted by: nowishow, Saturday, November 19, 2011, 5:03pm; Reply: 502
Quoted from TJ
What do you do if you don't have money to spare?  That is my catch 22.  I don't have the money, I can't get it unless I work, I don't know how long I can work, and right now I'm out of work.  I'd been managing up until I got laid off, but could I have kept it up indefinitely?  I don't know.  I'd like to think I could have, but then I wonder how the treatment would affect me, plus I wasn't earning enough to pay for specialists and IV antibiotics out of pocket.  I could afford my regular general practitioner, and I could afford orals (generics at least), but if that wasn't effective enough, what then?


I don't know of a good answer to this question. It might be a good idea for you to ask this question on one of the Lyme boards that Kim has mentioned and see if someone has some good ideas. I'm taking an herbal approach to healing and still it is very expensive. I wish you the best of luck and help.
Posted by: nowishow, Saturday, November 19, 2011, 5:12pm; Reply: 503
Quoted from TJ

Lyme patients aren't quite in such immediate peril as cancer patients, are they?


Actually some of us are. This disease affects our organs and it is believed many people die from Lyme disease (and co-infections) that were never diagnosed. I have lots of heart symptoms caused from this and if I hadn't been taking such good care of my body when I got infected I probably would have had a heart attack and died two years ago.
Posted by: JJR, Saturday, November 19, 2011, 5:27pm; Reply: 504
Yeah, it's affected my heart too.  And my Mom's Pastor has it and he's had heart complication from it too.  It can really mess with you.  In fact, it seems like it might be an underlying, undiagnosed cause to a lot of serious illnesses.  

A church member I know is diagnosed with Parkinson's and I wonder if it's really not lyme related.  Regardless of if it is or not, his life is very limited also.  He has to take a ton of meds to overcome his symptoms for brief periods in the day.  Then after they wear off, his hands start cramping and his face starts drooping and he just has to sit and is not able to do much.  It's no way to live and  it's not any worse or better than some people with canccer.  Now, I have no clue if it's caused by lymes or not, but the point is, cancer is not the only devastating situation to be in.
Posted by: TJ, Saturday, November 19, 2011, 6:13pm; Reply: 505
Quoted from nowishow
I'm taking an herbal approach to healing and still it is very expensive. I wish you the best of luck and help.
That's what I've decided to do at this point: use herbs and other supplements to boost my immune system, and keep on with the Genoma Security so my immune system can get at the little buggers.

I didn't realize how acute the Lyme dangers could be, yikes!  I am grateful that I haven't had heart problems on top of everything else.
Posted by: nowishow, Saturday, November 19, 2011, 6:28pm; Reply: 506
Goldie -

I've been bit numerous times by ticks over the last 18 years. Looking back I probably started showing symptoms about 15 years ago (axiety, fatigue). But it was the two ticks about 8-9 years ago that really made me very sick. I was driving home from photographing on the coast and felt a deep pain in my chest, since it was on the right side I wasn't worried that it was a heart attack and waited until I got home to investigate. I found 2 ticks under my bra on the right side. I removed them without any trouble. But had that deep chest pain for weeks. No rash, no flu symptoms, no fever. So I never went to the doctor.

I very slowly got sicker and sicker. At the time I was working two jobs and had very little money so I wasn't eating as well as I do now (and no supplements). I also didn't know that I was a non-secretor so I was still eating wheat, as that was ok for a B. I started having very intense night sweats/chills (had them during the day as well) my fatigue increased every year. My depression and anxiety increased. I thought I was just menopausal and when you get sick that slowly at this age you might think you were "just getting old" as I did. I started having roving joint problems. I suddenly gained 20 lbs. almost overnight. My hair, nails, and skin started looking very unheathly and I was getting increasingly more constipated. I was drinking more and more tea to stay awake at work and finding it almost impossible to function in my life but I kept trying.

I finally found this website. I'd been on the BTD since 1999 I think, but I never looked at the website. Well I found out about the GTD and decided to give it a try. I also decided to get a test to find out my secretor statis. BIG CHANGE! Within three months of the diet I was getting better and worse at the same time. My nails, hair, skin, and eyes looked so much better but my fatigue, constipation, and pain were increasing. In fact I started having trouble with my heart. I now know that my immune system was starting to kick in and trying to take care of the infection.

I ended up in the hospital with heart attack symptoms in March 2010. I was so sick I couldn't sit up for more than 10-15 minutes without my heart pounding out of my chest and my blood pressure dropping. The hospital sent me home saying nothing was wrong with me. This happened a few times. After about six weeks (I was on disability, not working) I decided to spend money to see a doctor outside my insurance. I spent about $4,000 on tests alone because the doctor didn't test for Lyme right off the bat. But I did end up with positive Lyme and Erlichia tests as well as many other viruses.

I did one month of doxy but decided to go the herbal route instead of anti-biotics because I do so poorly on any Rx drugs. I'm extremely chemical sensitive and that includes perscription drugs. I was only off work for 3 1/2 months. But, I went back sooner than I should have as I was out of benifits and money. I'm with a different doctor now who's closer to home and is actually a Lyme specialist and I'm taking the Bryon White formulas (A-Bab, A-Bart, A-L). This doctor says my biggest infection is Babesia even though I didn't test positive for it. My second is Bartonella and Lyme is the least of my infections. The thinking is if you don't take care of the co-infections you'll never get rid of the Lyme infection. So we concentrate on taking care of the Babesia mostly.

I've been improving although I had a huge relapse last July (a return of heart symptoms). My doctor says I have at least another year to go.  And to answer one of your other questions, yes attention is paid to my bowels. I do bowel cleansing and all kinds of detoxing. Most of what I do is to support the body in detoxing and improving the immune system.

I hope this helps.  :)
Posted by: Kim, Saturday, November 19, 2011, 8:53pm; Reply: 507
Lyme disease shuts off the immune system. Think about all the infections and viruses that go through our bodies that our immune system takes care of.  Once the immune system gets confused, the good guys don't go after and kill the bad guys.  Cancer is one big thing to worry about.  

No matter what, no lyme doctor will talk me out of staying on my swami.  I am not going to change my diet unless swami tells me to.

Nowishow/TJ-  Turn the Corner Foundation and National Capital Lyme have organizations that can help with paying for medications for treatment.  They can also help if you need an Igenex test.  Go through the website for the link for help. If you qualify, it could be a huge relief for you.

By the way, even if you do just oral antibiotics, many people can get better with them (spend less money) and add herbals at the end to clean up things.  I am considering getting a rife machine at the end of all the antibiotics.  There are always other options to help treat and beef up the immune system.  Swami is number one!!!
Posted by: JJR, Saturday, November 19, 2011, 10:42pm; Reply: 508
Quoted from nowishow
Goldie -

I've been bit numerous times by ticks over the last 18 years. Looking back I probably started showing symptoms about 15 years ago (axiety, fatigue). But it was the two ticks about 8-9 years ago that really made me very sick. I was driving home from photographing on the coast and felt a deep pain in my chest, since it was on the right side I wasn't worried that it was a heart attack and waited until I got home to investigate. I found 2 ticks under my bra on the right side. I removed them without any trouble. But had that deep chest pain for weeks. No rash, no flu symptoms, no fever. So I never went to the doctor.

I very slowly got sicker and sicker. At the time I was working two jobs and had very little money so I wasn't eating as well as I do now (and no supplements). I also didn't know that I was a non-secretor so I was still eating wheat, as that was ok for a B. I started having very intense night sweats/chills (had them during the day as well) my fatigue increased every year. My depression and anxiety increased. I thought I was just menopausal and when you get sick that slowly at this age you might think you were "just getting old" as I did. I started having roving joint problems. I suddenly gained 20 lbs. almost overnight. My hair, nails, and skin started looking very unheathly and I was getting increasingly more constipated. I was drinking more and more tea to stay awake at work and finding it almost impossible to function in my life but I kept trying.

I finally found this website. I'd been on the BTD since 1999 I think, but I never looked at the website. Well I found out about the GTD and decided to give it a try. I also decided to get a test to find out my secretor statis. BIG CHANGE! Within three months of the diet I was getting better and worse at the same time. My nails, hair, skin, and eyes looked so much better but my fatigue, constipation, and pain were increasing. In fact I started having trouble with my heart. I now know that my immune system was starting to kick in and trying to take care of the infection.

I ended up in the hospital with heart attack symptoms in March 2010. I was so sick I couldn't sit up for more than 10-15 minutes without my heart pounding out of my chest and my blood pressure dropping. The hospital sent me home saying nothing was wrong with me. This happened a few times. After about six weeks (I was on disability, not working) I decided to spend money to see a doctor outside my insurance. I spent about $4,000 on tests alone because the doctor didn't test for Lyme right off the bat. But I did end up with positive Lyme and Erlichia tests as well as many other viruses.

I did one month of doxy but decided to go the herbal route instead of anti-biotics because I do so poorly on any Rx drugs. I'm extremely chemical sensitive and that includes perscription drugs. I was only off work for 3 1/2 months. But, I went back sooner than I should have as I was out of benifits and money. I'm with a different doctor now who's closer to home and is actually a Lyme specialist and I'm taking the Bryon White formulas (A-Bab, A-Bart, A-L). This doctor says my biggest infection is Babesia even though I didn't test positive for it. My second is Bartonella and Lyme is the least of my infections. The thinking is if you don't take care of the co-infections you'll never get rid of the Lyme infection. So we concentrate on taking care of the Babesia mostly.

I've been improving although I had a huge relapse last July (a return of heart symptoms). My doctor says I have at least another year to go.  And to answer one of your other questions, yes attention is paid to my bowels. I do bowel cleansing and all kinds of detoxing. Most of what I do is to support the body in detoxing and improving the immune system.

I hope this helps.  :)



My story is very similar to yours.  Different, but very very similar.  And by the way, the heart situation your having sounds like what I found out at Mayo last year when they did a tip table test.  My BP would fall gradually.  My cardiologist called it POTS.  It's where the messages aren't being sent properly to the vessels around your heart to constrict at the right times.  I guess some people will get up quick and faint.  I've had times when I would get up and get dizzy.  I don't get it as much now that I'm drinking 1700000000 gallons of water a day to keep blood volume up.  But whatever.  I'm not sure if that's what you have, but that's what it sounds like.  When the BP drops, the rate will go up and try and make up for it.  I also get an arrhythmia.  That was the first symptom I got after I believe I was bit in about 99.  
Posted by: nowishow, Sunday, November 20, 2011, 3:53pm; Reply: 509
Quoted from Kim

Nowishow/TJ-  Turn the Corner Foundation and National Capital Lyme have organizations that can help with paying for medications for treatment.  They can also help if you need an Igenex test.  Go through the website for the link for help. If you qualify, it could be a huge relief for you.


I think you meant to address this to Ruthiegirl as I already had an Igenex test. I think this is a great idea if anyone wants to take advantage of it as that test is very expensive.  :o
Posted by: JJR, Sunday, November 20, 2011, 4:45pm; Reply: 510
Reeeeeeaaaally.  That is nice!
Posted by: ruthiegirl, Monday, November 21, 2011, 1:56am; Reply: 511
Quoted from nowishow


Ruthiegirl - I agree with this. This product really helps me.
http://www.pharmacyspecialties.com/site/679199/product/BR136

I apply it on any areas of my neck, upper back, or upper chest that feel knotted up and it seems to get the lymph system draining in that area. I've been using it for at least a month and it has continued to help me. It might be worth a try.  :)
That's a lot of money for a supplement that may or may not help me. I understand enough about homeopathy to be wary of ready-made combination remedies for specific medical issues; I'd rather research individual remedies and take JUST what my individual body needs.

Quoted from nowishow


You might try high doses of vitamin D, like 5,000 to 10,000 units a day. It really helps with my muscle aches. It would be better if you could get a test first to see if you are low, but most of us are extremely low. As a group we tend to need much higher doses of supplements then the general public.
I'm taking 10,000 iu of Vitamin D per day already. I had my levels checked for the first time last year, and they were down to 33. 15,000 iu a day (when the dr only told me to take 10,000 and to get tested again every 3 months) got my levels up to 83, then I lowered my dose for a while, felt sicker, starting taking 10,000 iu per day again, and then when I got tested again (about a month later) I was at about 63.

I finally got the book Earthing out of the library and I've been reading it. For the past 2 days, I've made sure to get about an hour of "outside time" touching the earth, and I do seem to have a little less pain already.
Posted by: Chloe, Monday, November 21, 2011, 2:47am; Reply: 512
Ruthie....this is interesting.

http://www.youtube.com/watch?v=te4WPdIsBtQ

Part 2

http://www.youtube.com/watch?v=nFcGXedC2zw&feature=related

continuation parts can be found as well
Posted by: 11080 (Guest), Monday, November 21, 2011, 5:52pm; Reply: 513
Quoted from Kim


Spinnertech, you are mistaken.

I am on antibiotics and supposed to see Jemsek by the first week of January after my third cycle.  You are getting better treatment because you are giving that practice that huge IV monitoring fee each month.  So if you do orals, you are at the bottom of the list.   They are overbooking new appts and follow up appts with Jemsek and he only puts his calendar out 3 months at a time.  So I couldn't even make a couple of appts ahead of time.

The cancellation list hasn't worked for anyone I know.  I don't drive and need a days notice to get into DC.  

Not everyone is enamored with this doctor.  Their PA's aren't consistent either.  

I already sent in a deposit and paperwork to see another doctor who does have time for me to see them.  This one won't charge me $2K  a month to be on IV antibiotics.  

Goldie-read the book "Cure Unknown" by Pamela Weintraub.  Excellent book that explains the whole political and medical views of Lyme.


Kim,

I certainly did not mean to mis-characterize where you are in your treatment.  I just recall that back on October 27th, just three weeks ago, you said that you had not started your antibiotic therapy with Dr. Jemsek and that you would start around November 7th.  Then you had your gallbladder surgery so I didn't think you had even started.  My mistake.

But apparently you have gotten the appointments you needed with Dr. Jemsek when you needed them.  And your next appointment is in January, which I assume is already scheduled.  When you go for follow-up appointments, they make the next appointment with you before you leave the office, which is what they did during your November appointment, correct?  They don't let ANYONE make appointments beyond the next one, not even IV patients.  This is because they don't know how your protocol might change until they see how you react to the current protocol.  You might be on a four week protocol in the future or an eight or twelve week protocol in the future.  How can they schedule appointments into the future without knowing when to schedule them?

Please don't think that because you are an oral patient instead of an IV patient that you are not getting the same amount of attention.  I know many people who are oral patients with Dr. Jemsek and they get the same high quality of care and attention that I get.  They are all very happy that they are getting better under such high quality care.

By the way, I've clarified before that IV patients DON'T HAVE TO pay the $2,000 per month fee.  IT IS OPTIONAL.  You keep mischaracterizing that as the only option.  IV patients also have the option to pay as they go, paying separately for every dose of drugs, all supplies, every phone call, and every office visit.  It ended up being more predictable for me to pay the flat fee instead, which includes all of the office visits, phone calls, etc.

Finally, have you even tried getting on the wait list?  It is NOT TRUE that it doesn't work.  It worked for me and others on this message board have said it worked for them.  And you must be ignoring the fact that I said that they usually give you several days' notice, if not a whole week.  So it's no problem that you need a day's notice--they usually give you much more than that.

But if you want to go to another doctor for treatments, of course it is your option.  I've already told you about a doctor in Germantown, Maryland, who takes health insurance.  The problem is that I know someone who is seeing him and he only prescribes IV Rocephen, which is a very old treatment for Lyme Disease and it doesn't help with the co-infections.

Please keep in mind that Dr. Jemsek did not give any of us Lyme Disease.  He is one of the few who is brave enough to keep trying to help us even with state medical boards breathing down his neck and revoking his license.  Also, his wife was diagnosed with cancer and two weeks later his young daughter was diagnosed with Leukemia.  Any other doctor might have closed down his practice to be with his family.  But not Dr. Jemsek.  He truly cares about our well-being and about continuing his research into the latest treatments.

Best of luck with your treatment and with your husband's treatment.  No one should have to suffer with this disease longer than they should merely because they end up with the wrong doctor.
Posted by: Lola, Monday, November 21, 2011, 7:12pm; Reply: 514
As a reminder, all the guidelines of respect and courtesy regarding others and their opinions always apply.

We cannot monitor every post of every thread. When something gets by us, we rely on other members to call our attention to it. If there is something that needs to be called to our attention, please do so. It is part of being in the community and helping all.

Do not make us have to lock this thread.
Posted by: nowishow, Monday, November 21, 2011, 7:58pm; Reply: 515
Quoted from ruthiegirl
That's a lot of money for a supplement that may or may not help me. I understand enough about homeopathy to be wary of ready-made combination remedies for specific medical issues; I'd rather research individual remedies and take JUST what my individual body needs.

I'm taking 10,000 iu of Vitamin D per day already. I had my levels checked for the first time last year, and they were down to 33. 15,000 iu a day (when the dr only told me to take 10,000 and to get tested again every 3 months) got my levels up to 83, then I lowered my dose for a while, felt sicker, starting taking 10,000 iu per day again, and then when I got tested again (about a month later) I was at about 63.

I finally got the book Earthing out of the library and I've been reading it. For the past 2 days, I've made sure to get about an hour of "outside time" touching the earth, and I do seem to have a little less pain already.


Sounds like your Vitamin D levels are good. And I know what you mean by not wanting to try something that is too expensive and you don't feel right about it. I say the very same thing to my doctor all the time.

I've been trying to sit on the ground as often as possible lately too. It seems like a really good idea and it just feels good to be outside, even when it's cold.
Posted by: 11080 (Guest), Monday, November 21, 2011, 8:32pm; Reply: 516
Quoted from Lola
As a reminder, all the guidelines of respect and courtesy regarding others and their opinions always apply.

We cannot monitor every post of every thread. When something gets by us, we rely on other members to call our attention to it. If there is something that needs to be called to our attention, please do so. It is part of being in the community and helping all.

Do not make us have to lock this thread.


Thank you for the reminder, Lola.  I have removed the objectionable portion of my post that was critical of the other member.
Posted by: Goldie, Monday, November 21, 2011, 8:49pm; Reply: 517
Quoted Text
Do not make us have to lock this thread.


Why??? Is expressing frustration such on issue for monitors?  I mean even if someone is upset, as fellow friends and sick people,  cant we not just take the good stuff and leave the rest..  
try taking the high road..

I just today learned from another 'frustration' post that asking:  "WHAT is really making me upset?", may give me the answer quicker then from avoid food or any other remedy.. I am grateful for that message..

Even my responding in this post - I need to ask that question now.. I guess its because I don't 'get' the 'upsetting post????'    

I have learned much about LYME from this thread.. and hope that even though it is a long thread, it will be allowed continuation .. surely getting individual help is more important then what might affect this or that one on any bad day/moment he or she may have?    

'Sensitivity' is a personal thing.. and often expressed by those who are sick and need time to heal from the inside out, from the head on down.  

I can not imagine any complaints about what was posted here or elsewhere.. .. (If I am really wrong then I guess you are monitoring well enough for me to never see those post complaints..)
  
IN the interim.. THANKS for all threads.
Posted by: JJR, Monday, November 21, 2011, 9:53pm; Reply: 518
Yeah, this thread has been really nice.  Hopefully it doesn't get locked.  Plus there are some resources in here that are great.
Posted by: Kim, Tuesday, November 22, 2011, 11:58pm; Reply: 519
Quoted from 11080




Best of luck with your treatment and with your husband's treatment.  No one should have to suffer with this disease longer than they should merely because they end up with the wrong doctor.


I know that Jemsek cares.  But if you don't manage how many new people you take into the practice and manage your apptointent schedule, people can't follow up when they need to.  At the end of each appt. we are going way, way past the time we are supposed to return because no one, not even PA's have open slots.  As sick as we are, we can't be seen only 3 times a year and that is what is happening with scheduling.

We have had issues with calls not being returned from every dept in the building.  Triage should call back with 48 hours.  They don't.  There are times  that not one of the extensions even goes to voice mail. When that happens, I can't even leave anyone a message.  One of the PA's was very upset that we couldn't get in to way past our time.  

I connected with many who are also disgusted with the scheduling.  Jemsek does not account for the load of people he takes in every month in regard to follow up.  I can't get in to see him.  Even getting into a PA for my husband was pushing his appt out from two months to almost 4 months.  

I was thrilled to be there in the beginning, but I need a doctor who is accessible for questions and can give me a follow up appt. when I am supposed to be seen.  I was assured before my first visit I would not have any problems following up with seeing the doctor, but that has not proven to be true at all.

I am glad you are happy.  Wish I knew all this before we paid the big fees up front for two people getting appts.  We are already set up with a new doctor, not the one that you suggested that takes insurance.  

I hope you continue to do well.
Posted by: nowishow, Wednesday, November 23, 2011, 6:00pm; Reply: 520
Good luck Kim - You have to do what you feel is best

Ruthiegirl - Are you taking any Zinc? If not, you might try Zinc Picolinate. How about magnesium? Magnesium glycinate is the one most recommended by Lyme doctors, I believe.
Posted by: ruthiegirl, Wednesday, November 23, 2011, 6:10pm; Reply: 521
I've been using topical magnesium oil. I'm not taking any zinc supplements, but I think I get plenty in my diet. I eat a lot of red meat, greens, and bone broths.
Posted by: nowishow, Wednesday, November 23, 2011, 7:01pm; Reply: 522
Quoted from ruthiegirl
I've been using topical magnesium oil. I'm not taking any zinc supplements, but I think I get plenty in my diet. I eat a lot of red meat, greens, and bone broths.


Many of us respond to exta zinc. You might want to give it a try and see what happens. It actually gave me a herx response when I added zinc to my protocol. I'm planning on doing some hair analysis soon and see what that shows.
Posted by: Ribbit, Saturday, November 26, 2011, 8:20pm; Reply: 523
I wasn't able to read the two pages of posts since my last one.  I've got a headache and I can't focus.

My appointment with Dr. Kalb was frustrating.  They took 12 vials of blood and I fully expect everything to be negative.  The "bands" aren't going to be there 25 years after the bite.  He did say, however, based on my symptoms, "It's not a matter of *if* you have Lyme, but *which* co-infections you have."  He gave me a prescription for two different antibiotics and an anti-fungal something-or-other.  When I find the papers, I'll post the names of the recommended drugs.  I also did a stool test for parasites.

When I asked if there was paperwork for him to sign for me to get help with getting on disability, his whole demeanor changed and he had nothing else to say to me.  I was really annoyed by that.  Afterword I wondered if he thought I was making it all up just so I could have him say I was too sick to work.  Maybe that's just me being paranoid.

Ruth, if you could get disability payments "just" for fibromyalgia, surely I can too, with all the junk I've got going on.  But when I talked with the Lyme advocate, she said I haven't worked enough years to draw social security.  I only worked maybe 5 years, and only part-time, before we were married, and I've done very little since then.  I've never been able to work full-time because of my pain and lack of energy.  Dr. K wanted to know if an MD had diagnosed me with fibromyalgia, and that was annoying too.  As if I had to have somebody official tell me I had it! Grrr.  I feel like I wasted a whole bunch of time and money going to see him.  I won't have results for another 6 weeks.  I have no idea how much it's going to cost.  I can't even begin to guess how many tens of thousands of dollars I've spent over the last 15 years.  I currently spend about 500 bucks each time I see my ND, and that's just supplements to keep my body going.  She doesn't charge all that much per visit just to see her.  I should see her about twice as often as I'm going, but we don't have the money, and DH says we can't keep it up as it is.  The children likely have Lyme as well (Dr. K agreed with that), but we can't afford to test or treat, so they stay as they are until I'm better enough to slack off on my supps.  So I may have to do the antibiotic route just so we can have financial help.  Even if it destroys my gut flora and even if it makes me sick.  Either that or we lose the house and go live in a trailer park where I can get sick from mold and feel unsafe with druggie neighbors.

Someone told me you can draw on your spouse's social security without them being "penalized" and losing benefits themselves if they ever need it.  This is something we will look in to.
Posted by: JJR, Sunday, November 27, 2011, 12:28am; Reply: 524
Man.  Our world is turning too because of money.  We're going to sell our house and move back into my Mom's duplex.  It'll be cheaper.  We can share internet with them.  We'll probably go down to one car.  Etc etc.  Of course I've never really cared about keeping up with the Joneses.  At least we're fed.  God has blessed us that way.  But we're running out of money to fight this whole thing.  It is frustrating.
Posted by: ABJoe, Sunday, November 27, 2011, 2:20am; Reply: 525
Ribbit,
I understand the huge bill for supplements.  For a number of years, I took several hundreds $ worth of supplements each month - and continued to get worse, but without the supps, I'd have gone downhill much faster.

Fortunately, once I started eating per BTD, the whole body worked better a little at a time and now I mostly take homeopathic remedies and a few supps to support the major detox organs and gut flora as needed.  I'm still detoxing a bunch of chemicals, etc. and healing the cranium and nerves, so deal with much pain and other fuzzies...

Sorry to hear about your financial setbacks as well, JJR.  We are fortunate to have been able to maintain our house, etc. through all of my/our health problems - Deo Gratias.
Posted by: ruthiegirl, Sunday, November 27, 2011, 2:24am; Reply: 526
Leanne, I didn't work enough years to qualify for SSDI either. What I get is SSI, which doesn't have any "prior work" requirements but does have income limits. If I earn too much money, or if I had too much money in the bank, or if I marry somebody who's rich, I'll lose my benefits.  You may not qualify for this program at all, since you're married to somebody who's working. As a single mother, child support payments from my ex (when he's able to pay them) don't count as "my income" but rather "my kids' income." But if we were still together, his income would be "household income" and might interfere with SSI.

I also didn't qualify for SSI the first time I applied.  I was rejected at first, and had to appeal. I'm just thankful I only had to appeal once.
Posted by: JJR, Sunday, November 27, 2011, 4:18am; Reply: 527
Thank you Joe.  We still have a lot to be thankful for.  And moving closer to my Mom is a good idea anyways.  It seems like this is where God is leading us and it's all going to work out for the better anyways.
Posted by: Ribbit, Sunday, November 27, 2011, 4:52am; Reply: 528
Ruth, I don't even know the differences. :-/  I don't know who to ask.  I'll probably have to talk with another lawyer.  The first one I spoke with said there was no way I could ever pull it off.  Other people say it has nothing to do with *his* income and they haven't had trouble at all.  It makes me wonder if it's by state or what-not.  Or is it federal?  I'm so confused.  I never in my life thought it would come to this.  R is already working two jobs, one part-time and one full-time.  There aren't any more hours left in the day for him to work.  If it weren't for the GTD, he'd be in hot water himself.  I've been wracking my brains trying to figure out something to do here at home that would at least cover the cost of my vitamins.  There's probably stuff I could do and just haven't thought of it yet.  Like gift wrapping for people.  There are a couple of really nice neighborhoods around, and I could offer to wrap gifts for a certain amount per gift.  I'm artistic.  I can make bows.  I could do custom paper too.  Dark blue sparkly snowflake stamps on brown paper.  I'm likin' it already.

JJ, I'm sorry you're selling your house.   :'(  But maybe it'll be a good thing.
Posted by: ruthiegirl, Sunday, November 27, 2011, 1:35pm; Reply: 529
Basically, there are two separate programs, one for "people who have worked and paid into the system" and if you qualify for that program, it doesn't matter how much money you have in the bank or how much your spouse makes or if you win the lottery while receiving benefits.

The other program is for "the poor who are too sick to work." People can qualify for this program if they haven't worked enough hours during their "working lives" but then there are strict rules about how much income you're allowed to have. If you make too much or have too much in the bank, you stop qualifying for this program, just as people would stop qualifying for Food Stamps or Medicaid if they begin to make too much money.

Both are Federal programs, but your local Department of Social Security handles it. So if you get a judge who's never heard of Fibromyalgia or Lyme Disease, he or she may not approve your application, even if a judge in another area of the country might have approved it.

Both programs have the same "medical requirements" which can be very hard to prove. I had my fibromyalgia diagnosis a few years before I applied for SSI. I was declined at first. I was very fortunate that I only had to appeal once, and that my lawyer (free assigned lawyer since I couldn't afford one) knew what he was doing.  I also hadn't worked in a number of years and all 3 kids were in school (including the preschooler) and my parents were helping with childcare after school on my "bad days."  I'd also been fired from my last job for calling in sick too many times.

The fact that you're homeschooling 3 kids and caring for a toddler may work against you. Caring for 4 children full-time is a difficult job, and any judge who recognizes that may think "you're healthy enough to raise your kids, so you can't be disabled."
Posted by: Goldie, Sunday, November 27, 2011, 1:51pm; Reply: 530
Can some of you enlighten me some more.. co-infections, what are some that you had, and what did you do to get rid of them, or does one ever get rid of them?  

I still see everyone taking stuff that works, but no consensus on what when or why.  Its like they trow the kitchen sink at you and hope to accomplish something/ no doubt some helps and some works, but it does seem like a c**p shoot.. If any of you feel that there is one item that works, or one item that made a difference for some specific item to be - interpreted --  as a good sign, going in some/one 'direction'...

Like: what is a parasite, we have many as it is even if 'healthy', what are some numbers or loads that make a difference in diagnosis, and which are treated with what or how? and is one parasite in all who suffer, are there 10 different ones in all who suffer and what exactly does that or those parasites do to on organ, or the brain?

I am sorry to ask, but if no one ever compares notes, how is anyone ever going to get better?

There are hundreds of sups available, I bought hundreds of bottles, (I don't have Lyme but I had pain for decades) I spent thousands and know that for some I trusted others to no avail and some I bought because I wanted to buy in hope -- except for one --- they all where not effective enough to notice a difference.  Maybe they did no harm, but as for doing much I could not say, and I bought them from quality stores and 'professionals'.

I think there has to be a spreadsheet to be made entering whatever data, starting with situations like what Ribbit went through last year, and then showing what she finally did to make it through her day today and what she will be learning about her symptoms and expressions once she learns more about what she is expected to do.

I mean you all are experiencing more or fewer of the symptoms as shown in Under Our Skin, as detailed as that film is, it still skips over all of them, and it certainly does not deal with what works when and for what.  That is the place where I start to ask all my questions.  Don't you also?

DO any think such a spreadsheet would help?  I might create it if it would serve to preserve a record of 'what works, and what did not.  Some things can be killed off, some things can only be put back into balance by changing the environment within..  

DO any think such a spreadsheet would help?  I might create it, if it would serve to preserve a record of 'what works, and what did not.      

  


  

  




Posted by: Kim, Sunday, November 27, 2011, 2:02pm; Reply: 531
Quoted from Goldie
Can some of you enlighten me some more.. co-infections, what are some that you had, and what did you do to get rid of them, or does one ever get rid of them?  


There are over 800 coinfections and the doctors don't know what a lot of them are.  Some medical experts would have you believe that ticks don't migrate.  Technically they aren't supposed to.  But, coinfections only seen on the West coast are showing up on the east coast.  They say an Japenese lyme bacteria is showing up in the US.

Over time the most I know can get rid of the coinfections.  If you have lyme disease for a long time, you never can get rid of it.  The best you can hope for is remission.  Your immune system has to be strong enough to keep it under control.  

Go to Ilads.org sometime.  Tons of information there about all of this.




Posted by: Ribbit, Sunday, November 27, 2011, 2:18pm; Reply: 532
Yes, and that is my fear, Ruth.  That if they decide I'm too sick to work, I must be too sick to care for my children.  It won't matter that I cook three fabulous meals a day and regularly declutter so I don't have to clean as much.  I clean on days when I feel good, just like any other person.

I called HSLDA (Home School Legal Defense Association) and they said there are many families who are members of HSLDA who are on disability and that it's not usually any trouble at all because homeschooling is legal in all 50 states and it's not based on whether the mother is sick or not.  They said if I have any trouble, to just give them a call.  Their lawyers are standing by to defend us.  ...........   That's an interesting thought.  I wonder if I could get one of their lawyers to help.  We already pay for the service.
Posted by: Goldie, Sunday, November 27, 2011, 2:51pm; Reply: 533
Thanks Kim.. will LOOK again, but I had not seen a spreadsheet.. or anything like it .. something simple for self reporting..

Ribbit.. I don't think sickness is based on work history..
You are 'not' looking for Social Security.. you need to ask for SSI not SSD..  you would qualify  differently.     Work history only applies to 'disability'.  House wifes are not compensated for work time so you would not qualify under that.. ask your lawyer about the right terminology.  then see any doctor for that.. you are just as sick by any doctor - see your history and hospital stays.. as you would be under the other doctor..    
Posted by: ruthiegirl, Sunday, November 27, 2011, 3:32pm; Reply: 534
I'm not worried that you'd get disability and then CPS would swoop in and make you put your kids in school. I'm more worried that the Disibility Judge will look at all you do and determine that "you're not really sick"  because you're caring for 4 young children. In my case, the lawyer talked about how my on again/off again illness would interfere with employment- how could I "maintain employment" if I called in sick twice a month? If you're not looking to be employed, it may be harder for you to get approved.

What you need is a lawyer who's familiar with disability cases in your area, preferably one who's also experienced  with homeschooling families and knows how to present your case so you're more likely to be approved.
Posted by: Goldie, Sunday, November 27, 2011, 4:15pm; Reply: 535
Ribbit If that where the case then I would ask my doctor to request that he request public health care to COME into the house.  Then after that is going on for a while there would be enough History.. there are home health care workers and home care nursing staffs for that.. this I think is not income based, and yet even then you seem to be short on money any way to at least be eligible.. you have handicapped children or a child that needs help...

Also the children may be eligible for help to study, speech and other things.. looking into that might help as well.. I am not in favor of doing that, but as a means to getting help to help your self, I am suggesting that you look into that.  
Posted by: nowishow, Sunday, November 27, 2011, 6:20pm; Reply: 536
Ruthiegirl - You might be a good candidate for Teasel. It's fairly inexpensive and I have an unopened bottle that I'd be happy to send you. If you try it, increasing the dose everyday and get a herx response (increase in symptoms) then it may be a good fit for you. Many have been helped tremendously by it. Please PM me and let me know. I tried Teasel and it didn't seem to effect me at all, but I've met many others who have gotten great improvement from it. I believe it's very good if you have lots of "Lyme" bugs (I have mostly Babasia).

Goldie - There is a someone on the Buhner forum that made a spreadsheet. I haven't seen it. But, we are all so different and have such varied bodies and infections that no one treatment works for everyone. The book "The Top 10 Lyme Disease Treatments" explains this much better than I can here (you might be able to pick it up at the library, I did). There's no easy answer or one good cure. Patients all need different kinds of treatment and support because of the different bugs in their systems and how their bodies have been compromised. My heart is greatly affected, but my joints are only slightly affected. But for many people it would be the opposite or something entirely different. It's not just a matter of killing the bugs. You have to get the immune system working again, detox the body, correct the hormones, and heal the damage done. So you can see that one system cannot fit all. Just like this diet, we are all individuals.  :)
Posted by: JJR, Sunday, November 27, 2011, 7:44pm; Reply: 537
I have a bottle of teasel also, that I've not tried yet.  

Goldie, good questions.  I think there are probably more co infections than they even know.  Like Nowishow said, we're all so different.  I know I had yeast terribly.  But it was after having quite a few antibiotics from a tooth going bad and killing H.Pylori in my stomach.  The ND I used to go to said I had the babesia/maleria co infection.  And I also think I had crypto spirridium.  Which might have been more about the water in our city.  There was an outbreak about 15 years ago that killed some people, because the drinking water from the city wasn't sanitary.  

So, the two I think I've had that are recognized are:

Yeast/ Candidiasis
Babesia / Maleria.  

And then there were two that I had / have probably from having a compromised immune system:

Helicobacter Pylori (stomach thing)
Crypto Spirridium.


Who knows what else.  But I know when I worked at the daycare, I was constantly getting sick.  It was like every 3 days.  Especially in winter.  I think it was just picking up the bugs the kids brought.  Which seemed like a constant struggle.
Posted by: Kim, Tuesday, November 29, 2011, 4:31pm; Reply: 538
For anyone who is interested, I decided to chronicle my Lyme treatment journey on caringbridge.org.  I also want to make sure that anyone who visits to follow my progress knows about Dr. D's work on epigenetics.   Thank you Dr. D, I know I would be much worse off if not for following my swami.  Many don't think about their immune system until it crashes.  

I just started the website so it does not have that much content yet, but I will add to it during the next week as my health permits. For now, I am bedridden.

Here is the link:

http://www.caringbridge.org/visit/kimbrown777

You usually have to log in to visit anyone's site.  
Posted by: nowishow, Tuesday, November 29, 2011, 5:54pm; Reply: 539
I have another friend who has used caringbridge since she was diagnosed with brain cancer seven years ago. Yes seven years and she's still here to tell the tale. She has an enormous spirit and drive to get well.

It was great to see a photo of you. Hang in there! It will get better. I'm looking forward to your next entry.  :)
Posted by: Goldie, Tuesday, November 29, 2011, 6:07pm; Reply: 540
I just answered you there.. good idea, more people should do it..

I have decided to do another round for my diet Jan 1 during vacation.. actually looking forward to it.. doing good so far..

I do not like you being bed bound.. care to call me.. You might be able to help your body to correct itself.. ..
Posted by: ruthiegirl, Tuesday, November 29, 2011, 9:03pm; Reply: 541
I've been using Caringbridge to keep up with family I met online years ago. She had a homebirth for her triplets, then a few months later one of them had a seizure and nearly died. She's now severely brain damaged and has numerous serious health problems.

Kim- I just signed up to get email updates from caringbridge whenever you update your journal.

nowishow- tell me more about this teasel stuff.
Posted by: nowishow, Wednesday, November 30, 2011, 7:56pm; Reply: 542
Quoted from ruthiegirl

nowishow- tell me more about this teasel stuff.


A lot of Lymies use teasel. Some people claim to have been cured by it. I don't get any response from it at all and I bought two bottles, by mistake. I have it in tincture form. So I'd be happy to send the unopened one to you. Here's a link to a site about it.

http://www.ladybarbara.net/html/using_teasel.html
Posted by: TJ, Wednesday, November 30, 2011, 8:53pm; Reply: 543
Quoted from nowishow
A lot of Lymies use teasel. Some people claim to have been cured by it. I don't get any response from it at all and I bought two bottles, by mistake. I have it in tincture form. So I'd be happy to send the unopened one to you. Here's a link to a site about it.

http://www.ladybarbara.net/html/using_teasel.html
Thanks for sharing the link.  I especially liked one point she clarified that I'd felt was true already.

Quoted Text
Here I’d like to explain my sense of the difference between a HERX and a flare-up. The classic Herxheimer response happens when SO many spirochetes have been clobbered suddenly that your liver, kidneys and lymph glands just can’t HANDLE it. Lots of folks think this shows that something is working. Fact is, this is BAD for your body and needs to be avoided.
Posted by: JJR, Wednesday, November 30, 2011, 10:06pm; Reply: 544
Isn't that interesting.  I know I just don't like herxing.  But, it has been a part of my journey.  I don't know if you can avoid it completely though.  It'd be nice if you could find the right balance between killing the junk and not overwhelming your system.  It's a hard thing to balance for sure!!!
Posted by: Kim, Wednesday, November 30, 2011, 10:38pm; Reply: 545
As far as I know, you can not avoid herxing.  The point is not to overload the immune system so much with die off that you set yourself back.   What ever treatment you choose should be appropriate to where you are with your infection load.

Teasel is a great herb, but everyone responds differently to all the elements of treatment for Lyme disease and coinfections.  
Posted by: nowishow, Thursday, December 1, 2011, 12:25am; Reply: 546
I believe the GTD started me herxing so I don't think it can be avoided if food is enough to give you a herx. I think it's a good idea to keep herxes to a minimum if possible though.
Posted by: TJ, Thursday, December 1, 2011, 12:54am; Reply: 547
This is the paragraph following the one I quoted above:
Quoted Text
By contrast, depending on where in your body the spirochetes are hiding out, taking Teasel can cause a return of previous symptoms because it’s ‘calling out’ the spirochetes exactly THERE. Again, adjust your dosage to where you can stay comfortable/functional.
I think there is a difference between the pains of healing and a true Herxheimer reaction:
Herxheimer reaction - Wikipedia

I'd expect there to be some minor discomfort, but if the level treatment leaves you incapacitated, you need a less aggressive treatment regimen... unless of course you enjoy suffering, are financially independent, and have people around to handle all your housekeeping business!
Posted by: Goldie, Thursday, December 1, 2011, 1:46pm; Reply: 548
Quoted Text
By contrast, depending on where in your body the spirochetes are hiding out, taking Teasel can cause a return of previous symptoms because it’s ‘calling out’ the spirochetes exactly THERE. Again, adjust your dosage to where you can stay comfortable/functional.


Quoted Text
I think there is a difference between the pains of healing and a true Herxheimer reaction:


Are some confusing/exchanging homeopathic reactions with Herxheimers as being good versus the one being to strong and thus debilitating?  I am just asking, I seem to be unsure...

In my work with body 'energy' - it is never the intention to kill, but to make uncomfortable, to create on environment where replication might not be as great, where long life might be shortened, or where nutrients goes to / feeds the good guys and leaves the other over populated and starving, thus creating new paradoxes, new synergy, new interactions, healing...

'Killing' as a concept with antibiotics, seems to make the critters only more and more resistant.. I take anti's for when I need them, but when I took them for a full year (mild form) it did not prevent another (herpes) outbreak 4 month later - and even 2 while on anti's in between.  The 'recent' outbreak was less painful, but still there, in the same spot affecting a nerve down the back of my leg..(not Lyme related)    

I think in some way I would be much more interested to 'see' what comes out of LYME patients every day.. just normal fecal matter, or small stringy things or round things or colored things, or changes from one food / meds item to the other... I would think that output is much more then just 'interesting'...  I wonder if science lab / research techs would approach this question differently?  
Posted by: ruthiegirl, Thursday, December 1, 2011, 2:08pm; Reply: 549
So would a herxing response from Teasel mean that I do in fact have lyme, and "no reaction" would indicate that I don't have it?
Posted by: Goldie, Thursday, December 1, 2011, 3:02pm; Reply: 550
Ruthygirl, I work with microorganisms.. many times several will come to the fore front, some times Lyme is included, other times not but the reason I respond is that there are hundreds of such names... would they all mean that one might have this or that.. yes and no.. only further tests would prove it out...  With LYME I think it comes down to symptoms first and test second and follow up third.. I hope no one new has it.. stay out of the 'out of doors'.  
Posted by: JJR, Thursday, December 1, 2011, 5:05pm; Reply: 551
I think teasel might address parasites and junk in general.  Just as garlic or something like that.  I don't think it's necessarily designed to go to a specific target.  I could be wrong though.
Posted by: nowishow, Thursday, December 1, 2011, 9:16pm; Reply: 552
Quoted from ruthiegirl
So would a herxing response from Teasel mean that I do in fact have lyme, and "no reaction" would indicate that I don't have it?


Maybe but not definitely, is my opinion. But that's why I thought you might want to try it. That is one of the ways my doctor confirmed that I have Babesia. I show a strong herx response to two different Babesia remedies so that makes a strong case for me having Babesia.

Posted by: Kim, Thursday, December 1, 2011, 10:19pm; Reply: 553
Goldie, when Lyme doctors hit Lyme bacteria with antibiotics they usually use 3-4 different types of antibiotics at the same time and alternate them with another antibiotic that is a cyst buster.  

Lyme evades antibiotics by taking on different forms.  It actually alters it's DNA.  The different antibiotics at higher strengths get all the Lyme forms.  Also pulsing, gives the immune system time to wake up and start working while giving the body time off the antibiotics to prevent any resistance.

There is no one process that is totally successful, but of the people I know who got well and stayed that way, usually used either or antibiotics, homeopathics and either rife machines, bionic 880 or the PE1.  
Posted by: 11080 (Guest), Thursday, December 1, 2011, 10:35pm; Reply: 554
Quoted from Kim
Lyme evades antibiotics by taking on different forms.  It actually alters it's DNA.  The different antibiotics at higher strengths get all the Lyme forms.  Also pulsing, gives the immune system time to wake up and start working while giving the body time off the antibiotics to prevent any resistance.  


Kim is exactly right.  Lyme Disease spends much of its time as a spirochete, which is a spiral bacteria, like a corkscrew.  It uses its corkscrew shape to quickly get out of the bloodstream and drill through blood vessels into organs and basically any part of the body that it wants to invade.  When the spirochete form is threatened, the Lyme bacteria can straighten itself out like a worm.  When the worm form is attacked, the Lyme bacteria can form itself into a cyst, in which it creates a strong outer shell around its core.

Some antibiotics work against the spirochete form, some against the worm form, and some against the cysts.  That is one reason why the best Lyme doctors use different types of antibiotics to attack the different forms of Lyme Disease.

And, as Kim said, pulsing is very important to train the immune system, which has been too overloaded and too confused for too long, to finally start recognizing the enemy and start fighting against it.  Pulsing does this because the antibiotics expose the enemy and when the antibiotics are pulsed off, the immune system then starts to recognize the enemy and can start fighting it.


Posted by: 11080 (Guest), Thursday, December 1, 2011, 11:19pm; Reply: 555
I just had a follow-up appointment with Dr. Jemsek yesterday and I wanted to report some great progress.  In June, I was finally diagnosed (after 10 years with the disease) with Lyme Disease, Babesia, Bartonella, Mycoplasma, and several viruses including Epstein Barr virus.  I started my IV treatment with Dr. Jemsek in July.

I have been on various pulsed IV antibiotics (focusing, at different times, on Lyme Disease, Babesia, and Bartonella) and several oral medications (including anti-malarials for Babesia) for five months now.  In addition, have been on a cyst buster (Flagyl) during the entire treatment program.  And recently Dr. Jemsek added a biofilm scrubber into my program, which will continue now through the rest of my program.  The biofilm scrubber has released even more hiding bugs that are being attacked and eradicated by the antibiotics.

Yesterday, Dr. Jemsek reported that I was doing very well and was a little ahead of schedule.  And the best news of all was that he said I have killed off most of the Babesia bugs and finally got the Babesia under control!!!  Most LLMDs agree that Babesia is the toughest bug to eradicate and that patients with Lyme Disease and co-infections will not get better without dealing with Babesia early on.

Dr. Jemsek said that my immune system is getting stronger and is starting to take a more active role in the battle against the bugs.  He also estimated that I only need two more treatment cycles and that I should be able to finish up my IV treatments by mid-January!!  I'll be on orals after that just a few times each month--a cyst buster, a biofilm scrubber, and one antibiotic--as a maintenance program and those will end after a few months.

I feel like I finally turned a corner in November.  I feel SO MUCH better than I did before I started treament.  Dozens of my previous symptoms are gone, I have so much more energy, and I now only need 8-9 hours sleep each night to feel completely rested (as compared to the 10-11 hours sleep I needed earlier this year).  I've also lost about 10 pounds since July, mainly because Babesia messes up one's metabolism and causes weight gain, which it did for me for many years.  I've got a much better metabolism now and with the increased energy, I am so much more healthy.

So there is hope out there.  Patients need to work closely with their LLMDs to find the best treatment program for them.  But the experts are out there and in my opinion their protocols work!
Posted by: JJR, Thursday, December 1, 2011, 11:41pm; Reply: 556
Gaining weight has not been my problem.  But I think that's more of a mental thing with me and food.  I started viewing food as the enemy and wasn't eating enough.  My Pastor brought up an issue that was so timely for me.  He said I need to eat 2k calories a day or more in order to not be messed up.  If I'm less, I'm going the have problems.  So, I started tracking it using this pretty good online calculator at http://www.everdayhealth.com.  And the first day I did it I was only at 1157 calories.  So, I've been eating as much as I can ever since.  And it seems to be helping my energy levels.  I was starving myself.  

I think it's also helping my anxiety not be as bad.  It's not the only answer for me, but it seems to be helping and my doctor wants me to get stronger before we really go after the lyme and coinfections.  They use something called Transfer Factors.  So, hopefully I'm getting stronger.  I'm at least not losing weight and I've hit just over 2000 calories a day a couple of days.  It took me a while.  I want to get to 2250 or so.  Or in the neighborhood.  I'm not really sure where I should stop, I'm so underweight.  But I'm sure my body will let me know.   :)
Posted by: ABJoe, Friday, December 2, 2011, 12:02am; Reply: 557
I am glad that you got that figured out.  Healing does take much energy.  I have at times also not eaten enough, but I have to keep in mind that I need it to get better.  

I'm not going to say that everything will magically be a bed of roses, but it will get better.
Posted by: 11080 (Guest), Friday, December 2, 2011, 12:07am; Reply: 558
JJR, I've heard that Babesia makes people gain weight and Bartonella makes people lose weight.  Who knows what happens when you have both??  I had both, but the Babesia showed up stronger on my blood work, so perhaps that's why I gained weight with Lyme and co-infections.

Best of Luck!
Posted by: nowishow, Friday, December 2, 2011, 12:16am; Reply: 559
JJR - Anorexia can be a sign of Babesia as well as weight gain. You might want to check out this link http://www.personalconsult.com/posts/babesia-checklist.html Dr Schaller is the leading expert on Babesia.
Posted by: JJR, Friday, December 2, 2011, 1:06am; Reply: 560
Interesting.  I used to weight 165.  Now I weigh 115.  I'm 5'7".  I am an ectomorph, so 165 was overweight.  At that time I used to exercise and I couldn't lose weight.  But I had a terrible diet.  But I think I might have had lymes then.  

My goal is 140.  Hopefully eating more will help.  It's at least a start.  Because I certainly wasn't eating enough.  
Posted by: TJ, Friday, December 2, 2011, 3:39pm; Reply: 561
On Wednesday I started taking the Astragalus and Cordyceps sinensis supps I purchased.  They are already working!  I had a sore throat and sinus congestion by the time I went to bed last night.  I feel like I have a cold.  That means they are working, right?  Unless I actually caught the cold?
Posted by: JJR, Friday, December 2, 2011, 3:57pm; Reply: 562
Well, it could be either or.  I've taken astragalus in the past though and it's supposed to be an immune booster.  
Posted by: Goldie, Friday, December 2, 2011, 4:23pm; Reply: 563
KIM... and others... I found that a cold gelpack rolled up in a thin sock makes for a good neckroll for comfort, the cold is nicer then ice.. try it.. it stays soft and molds to the neck.. about 7.- at the chiro..  
Posted by: 11080 (Guest), Friday, December 2, 2011, 5:49pm; Reply: 564
Quoted from Goldie
KIM... and others... I found that a cold gelpack rolled up in a thin sock makes for a good neckroll for comfort, the cold is nicer then ice.. try it.. it stays soft and molds to the neck.. about 7.- at the chiro..  


Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.
Posted by: JJR, Friday, December 2, 2011, 7:09pm; Reply: 565
I've been eating pineapple on a regular basis.  I think it helps.  
Posted by: Kim, Friday, December 2, 2011, 9:11pm; Reply: 566
Quoted from 11080


Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


Wish I could do the heat.  I have herniated discs with spinal cord involvement so I have to use ice to bring down the swelling.  And, the neurologist said that with this type of injury, heat increases the inflammation.  Dr. J knows I am using ice.
Posted by: TJ, Saturday, December 3, 2011, 5:24am; Reply: 567
Quoted from TJ
On Wednesday I started taking the Astragalus and Cordyceps sinensis supps I purchased.  They are already working!  I had a sore throat and sinus congestion by the time I went to bed last night.  I feel like I have a cold.  That means they are working, right?  Unless I actually caught the cold?
I talked to my brother Josh today, and he caught the cold.  My little sister has it, too.  Looks like it's not (just) the supplements.
Posted by: JJR, Saturday, December 3, 2011, 5:52am; Reply: 568
Well, it should help fight off your cold.
Posted by: TJ, Saturday, December 3, 2011, 7:33am; Reply: 569
Yay, I finally have a fever!  It's a good sign.  I can't remember the last time I had one.  My immune system is awake at last.
Posted by: TJ, Saturday, December 3, 2011, 7:36am; Reply: 570
I was about say I spoke too soon.  I could keep my eyes open by 11 pm, but I didn't sleep and was back up at midnight.
Posted by: Goldie, Saturday, December 3, 2011, 8:24am; Reply: 571
Yes I think.. Getting a real case of temp is a good thing, but one seldom gets it..  If I ever have temp I go to the hospital.. yet I think a lot of illnesses could be fixed with high temps if one survived it..

I hope you feel better soon, go to bed, read a book, stay warm and drink..
Posted by: Goldie, Saturday, December 3, 2011, 8:25am; Reply: 572
Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


awesome post
Posted by: Kim, Saturday, December 3, 2011, 3:06pm; Reply: 573
Quoted from Goldie
Just a note:  people with suspected Lyme Disease or co-infections should not use cold to reduce inflammation.  Heat should be used instead to relax the area and reduce pain.  The reason is that the bugs like cold and not heat.  They can reproduce in cold but often die off in heat.

Traditional anti-inflammatory remedies don't work with Lyme patients--it often makes them worse.  Diet is a good way to control inflammation--stay away from sugar and the nightshade vegetables.  And take Bromelain or other natural anti-inflammatories.


awesome post


I emailed my doctor about this question of ice vs heat with someone with lyme disease.

The quoted email:

Question in email "ice on the  injury with someone who has Lyme disease makes the bugs replicate faster and you should use heat".

This is not true and I can't imagine who came up with this and why!"

end of doctor's quote,
Posted by: Ribbit, Saturday, December 3, 2011, 6:18pm; Reply: 574
Actually, it makes total sense with what I've experienced.  I think Lyme brings the body's temperature down.  Don't we all have underactive thyroid?  I feel *horrible* when I'm cold.  I hate winter.  I used to be afraid of it.  Now I wear wool sweaters and wool socks and I build fires in the fireplace.  My body shuts down when I'm cold.  In the rare times when I can actually run a fever (not counting the times last year when I was running a low-grade fever just about every afternoon), I feel fantastic afterwords.  I think getting a fever is one of the best things for me.  For 10 years now my husband has been telling me the reason I feel so good after a fever is because it's killing something off.  We believed it was Candida, but now I think it's Lyme bacteria/viruses.

I don't want to talk about the disability stuff anymore.  I got the info I need from someone on the Facebook group I moderate and she knows exactly what's going on--she's in an identical situation to mine.  Yes, Ruth, I was seeking employment because we face loosing the house if I don't work.  But I can't work, and my "bad days" are more than just twice a month headaches.  Anyway, as soon as we can, we will pursue the next step.  First we have to wait till all the tests come back from the LLMD, and then I will see the neurologist at Emory I saw 1 1/2 years ago.  He'll be the one I'm most likely to get help from.  No, Goldie, a doctor is not a doctor is not a doctor.  It matters very much who I see.  Because I have an invisible illness and I do not look sick (unless I'm having a skin breakout like I am now--then I look like I've been stung by 100 bees).  I have to be very particular about who I see.  And nobody should welcome CPS into their homes.  They cannot come without a substantiated report.  All they can do is make noise and talk to your lawyer.  You do not have to let them into your home.  This is America.
Posted by: JJR, Sunday, December 4, 2011, 12:32am; Reply: 575
HSLDA Baby.  Oh that remeinds me, I have to pay them!!!

yeah, I get the fevers in summer pretty regularly.  Low grade, but they're there.  And I usually feel better the next day than I had previous to the fever.  Problem is I get stretches of them.  I'll have a week or two and from about 2:30 PM to 5:30 - 6:00 PM I'll be so wiped out with fatigue, all I can do is sit and walk through mud when I do stuff.  But, I know it's probably doing good also.  So.....  It is what it is.

Ribbit, I'll be praying for your financial situation.  

How are you today TJ?  Seems like a fever is a bit stiff for a cold.  I don't always get a fever just from a cold.  
Posted by: TJ, Sunday, December 4, 2011, 10:44am; Reply: 576
Quoted from Ribbit
I think Lyme brings the body's temperature down.  Don't we all have underactive thyroid?  I feel *horrible* when I'm cold.  I hate winter.  I used to be afraid of it.  Now I wear wool sweaters and wool socks and I build fires in the fireplace.  My body shuts down when I'm cold.  In the rare times when I can actually run a fever (not counting the times last year when I was running a low-grade fever just about every afternoon), I feel fantastic afterwords.  I think getting a fever is one of the best things for me.  For 10 years now my husband has been telling me the reason I feel so good after a fever is because it's killing something off.  We believed it was Candida, but now I think it's Lyme bacteria/viruses.
I am so there.  I didn't realize the cold thing was related.

Quoted from JJR
How are you today TJ?  Seems like a fever is a bit stiff for a cold.  I don't always get a fever just from a cold.
Much better today.  I was miserable yesterday, but the fever broke last night and today has been productive; and I'm not just talking about quantity of mucus I produced. :X  I haven't had the nausea I'd suspect from the flu, so I'll consider it a bad cold.

Does anyone know of a good way to induce a fever?
Posted by: JJR, Sunday, December 4, 2011, 7:19pm; Reply: 577
Let your body decide when to.  That would be my thinking.  Hot weather does it for me.  Actually, now that I remember, it seems like when I take elderberry it sometimes will kick the fevers into gear.  I haven't had it in a while.  
Posted by: TJ, Sunday, December 4, 2011, 7:37pm; Reply: 578
I just did some reading on it.  I had a big "DUH" moment when use of a sauna was mentioned.  That's probably safer than taking something internally to induce a fever (or more accurately, hyperthermia).

I guess I need to get back in the habit of going to the gym even if just to use the sauna.

BTW, I'm not feeling as good today... maybe since I didn't have the fever yesterday?
Posted by: ruthiegirl, Monday, December 5, 2011, 4:29pm; Reply: 579
I don't get fevers often either. I went well over a decade without ever having one. The last time I had a fever, I was so excited that my immune system was finally working properly, even though I truly felt awful at the time, it was a "good" kind of feeling awful KWIM? I think I've had a fever twice in the past year.

Whoever offered me a bottle of teasel- thanks, but no thanks. My body has been acting crazy enough lately, I really don't think  this is a good time for me to possibly induce another healing crises. Frankly, I've been having enough fibro-flares that I'm not sure I'd even be able to recognize a reaction to a new supplement.
Posted by: JJR, Monday, December 5, 2011, 5:31pm; Reply: 580
I know how you feel ruthie.  I've been there all too often.  As far as introducing something new.  What is "KWIM"?
Posted by: ruthiegirl, Monday, December 5, 2011, 6:18pm; Reply: 581
KWIM= Know What I Mean
Posted by: TJ, Monday, December 5, 2011, 8:41pm; Reply: 582
My temp was 97.0 today. :(  I just don't understand this!  Come on, hypothalamus, wake up and get to work!

I've been doing some reading about what affects our body temperature setpoint, and anything that increases basal metabolic rate seems to do it: regular intense exercise, eating more, stimulants, etc.  If I have a sub-optimal body temperature, if means that my metabolic rate is sub-optimal, right?  So why is that?  Is my body trying to conserve calories?  That would make sense for anyone with malabsorption or gut integrity issues.  What do you think?  My white lines cover the whole inside of my fingers and my palms, not just my fingerprint area. :-/

Also, does anyone have any ideas how the Lyme bacteria can induce lower body temperature?

I recently cut back my Prozac dose to 5 mg in an effort to help my metabolism pick up.  Since then, I'm generally not feeling quite as sensitive to the cold, and my thinking is a bit faster/clearer.  It's been obvious for a few years that as my Prozac dosage increases, my metabolism decreases.
Posted by: JJR, Monday, December 5, 2011, 9:29pm; Reply: 583
I've been pretty low at times.  And I'm consistntly under 98.6.  I haven't checked lately.  I'm tired of checking it.  I think because I had a stint for a while, when I wasn't feeling well, that is it was consistently in the low 98's.  So I just stopped fretting.  But I've had times when I woke up in them morning and checked it and it would be high 95's or low 96's and I was concerned.  I think it's an adrenal thing.  Or yeah, metabolism.  Not sure if they are exactly the same or not though.  My blood pressure would usually be really low at those times too.  And I would always feel like I need "something".  My doctors assistant told me if that ever happens I could try some salt water.  The times it's happened in the last year, I've made myself some lamb and it seemed to help boost my system up.
Posted by: TJ, Monday, December 5, 2011, 11:11pm; Reply: 584
I'm currently up to 97.5 now at the time of day when body temp is supposed to be at its peak.  What you said about BP is interesting, too.  I don't have a monitor, but when I do check it, the top number is very rarely above 110 and is often below 100.  Perhaps these are hand-in-hand with BMR.

I'm going to lay off the Prozac for a few days and see what happens...  besides anxiety/hypomania, that is. :'(
Posted by: JJR, Tuesday, December 6, 2011, 4:34am; Reply: 585
Are you still underweight?  But yeah, my BP has been low for a long time now.  I think that is also tied to adrenals, but I'm sure being underweight is a factor too.  I would imagine.  But they also diagnosed me with POTS, from failing my neurological tip table test.  And to me, that goes hand in hand with the Lymes because it eventually attacks your neurological system.  
Posted by: TJ, Tuesday, December 6, 2011, 5:51am; Reply: 586
I'm up to 135 now, but yes, still underweight.  The extra five is all in my gut.

I went to the gym today.  I spent 20 minutes in the sauna, and got my temperature up into the mild fever range.  I tried to do some exercise after, but I ran out of steam after two sets (one of seated rows, one of dumbbell bench press).  After the two sets, I got back in the sauna for another 30 minutes.  After showering, my temperature was about 99.7.

As I write this in my 75 degree bedroom, my feet are cold and I'm back down to 98.2 (slightly higher than my usual).  I'm interested to see how tomorrow goes.
Posted by: Ribbit, Tuesday, December 6, 2011, 9:18pm; Reply: 587
Rob says he's going to build me a dry sauna.  I've read they're healthier.  TJ, I think the reason Lyme brings your body temp down is because one of the organs the bacteria attacks is your thyroid.  
Posted by: nowishow, Wednesday, December 7, 2011, 12:24am; Reply: 588
Quoted from Ribbit
Rob says he's going to build me a dry sauna.  I've read they're healthier.  TJ, I think the reason Lyme brings your body temp down is because one of the organs the bacteria attacks is your thyroid.  


I'm so jealous I love dry saunas!  :)

There aren't any gyms anywhere near me and it's too expensive and stressful to drive the 40 minutes to get to one. So I do without, but I'm sure it would help. I've thought about just putting a portable heater in the bathroom on high and sitting in there, but I'm sure that's not the same.  ::)
Posted by: TJ, Wednesday, December 7, 2011, 12:47am; Reply: 589
Quoted from Ribbit
Rob says he's going to build me a dry sauna.  I've read they're healthier.  TJ, I think the reason Lyme brings your body temp down is because one of the organs the bacteria attacks is your thyroid.
I feel worse today than yesterday, but that may be because of the attempt at exercise.  Heck, maybe I actually have the flu (and not a cold) without the nausea and other gastrointestinal symptoms.  The sauna at the gym wasn't really dry, but it wasn't a steam room either.

Thyroid inflammation sure fits as a good reason for low temperature.  I thought also that if a body isn't getting enough fuel (because of malabsorption or some other digestive problem, for example), that it may go into a sort of "power saving" mode, slowing down all metabolic processes to conserve energy.  Inflammation, insufficient fuel/nourishment, and toxins from pathogens could explain all the Lyme symptoms.
Posted by: Goldie, Wednesday, December 7, 2011, 11:00am; Reply: 590
Quoted Text
I thought also that if a body isn't getting enough fuel (because of malabsorption or some other digestive problem, for example), that it may go into a sort of "power saving" mode, slowing down all metabolic processes to conserve energy.  Inflammation, insufficient fuel/nourishment, and toxins from pathogens could explain all the Lyme symptoms.

Yes...  good deduction..

LOW temp is more associated with low Iron/Iodine.. for Iodine the patch test would net results quickly,

Quoted Text
There aren't any gyms anywhere near me and it's too expensive and stressful to drive the 40 minutes to get to one. So I do without, but I'm sure it would help. I've thought about just putting a portable heater in the bathroom on high and sitting in there, but I'm sure that's not the same.  


You can try it in different ways.. dry heat in a hot room.. or moist heat over a boiling pot of water, under a towel..

I would go to a spa first and try out the different types.. I had several types and in the end never use any.. like exercise equipment..

But the discussion ought to more specific as to what HEAT might do to infestations, or infections...there is a different mechanism at work when the body creates fever temp.. I don't think that environment can be MANUFACTURED for 'health' unless you are healthy to begin with.. .. BUT I am ignorant on the subject..

On the other hand 'I' am more inclined to say that creating a CHANGED environment within the body - is a good thing no matter how you achieve it - To make the body do it's work of eliminating bad invaders I do it with electromagnetic waves, stimulating the body to do its work ....      
Posted by: JJR, Wednesday, December 7, 2011, 5:18pm; Reply: 591
Goldie, can I ask which machine you use?  A chiro I used to go to used this machine that you hooked up these straps to your wrists, ankles and head and I always felt better after a session on that thing.  It was some kind of "biofeedback" machine, but I forget which one it was called.  It was run through a computer.  I could tell it brought healing, but it also seemed temporary.  I'm sure every little bit helped in the larger scheme of things though.  
Posted by: Ribbit, Thursday, December 8, 2011, 5:17pm; Reply: 592
JJ, the one my ND uses is called the Indigo.  She used to use the SCIO.  Sounds exactly like what you're describing.

TJ, I'm not sure if "inflamed" is the right word to describe our thyroids. I don't know if they're actually inflamed or not.  They're just under-active.  Maybe under-active does mean inflamed.  I don't know.

I had a pretty rotten day yesterday.  I dug through an old vitamin box and found some dandelion tincture and burdock tincture and decided to use them up.  I don't think my feeling yucky really had anything to do with feeling bad....but maybe doing BodyTalk (per Debra O+'s suggestion) did it.  Ask Debra about it.  It's pretty cool.  Anyway, I had to go to bed, so I put H (2 y.o.) down for a nap, put a Leap Frog video on for the others, and I went to bed. I felt so horribly out-of-it that I honestly didn't know if I was going to wake up if I went to sleep.  I prayed a while, did some soul-searching, basked in the knowledge that I was at peace with God if He took me, rested in the knowledge that millions of children over the past 6-10,000 years have lost mothers and survived the experience.....and if I didn't wake up, they would be okay.  I gave in and was at peace with the idea.  With tears streaming down my face, I fell asleep, physically numb unless I moved.  I could feel the sheets if I moved, but I felt like I was floating on clouds.  I slept for 3 1/2 hours and woke up feeling much better!
Posted by: JJR, Thursday, December 8, 2011, 5:41pm; Reply: 593
Wow.  I'm glad you woke up!!!!!!!!!!!!!!!!!!!!!!!!!!!

God is with our families.  For sure.
Posted by: ruthiegirl, Thursday, December 8, 2011, 6:11pm; Reply: 594
That's kind of scary to read Ribbit! I'm also very glad you woke up, especially if you were home alone with the kids at the time!

I'm also glad that you felt so much better after your nap. You must have really needed the sleep AND you probably also needed something mentally/spiritually out of the experience; having a good cry and putting ALL your faith in the Allmighty.
Posted by: TJ, Thursday, December 8, 2011, 7:19pm; Reply: 595
Ribbit, that's really scary to feel like that!  I'm glad the nap helped.  It's amazing how much a nap can help.  Do you have any ideas about what brought on all that misery?

I spent 30 minutes in the sauna last night.  I didn't even try working out.  By the time I got home, I was very relaxed and had that pleasantly tired feeling I should get after a workout, provided that I didn't overdo it.  When I woke up today I felt pretty beat up (like if I had worked out).  Maybe I didn't drink enough after the sauna, or maybe I just liberated a lot of toxins.  Who knows?  I'm going back to bed after I finish on the forums.  I'm still fighting the cold. :(
Posted by: Goldie, Thursday, December 8, 2011, 7:39pm; Reply: 596
Ribbit, your 'nap' was a healing time for you .. good that the children could manage, both the 3 hours and on their own.. you needed that experience..

It's like for me.. years ago I decided that this life time "'I will never get what I want'"  It sounds  like giving up but more then that it was like giving in to the struggle and being at peace.  I stopped being disappointed.. just acceptance (when it works) I still fight but much less.

Glad you are here to post on..  ;D
Posted by: Ribbit, Friday, December 9, 2011, 12:22am; Reply: 597
Quoted from Ribbit
I don't think my feeling yucky really had anything to do with feeling bad....


Uh...that was supposed to read, "I don't think my feeling yucky really had anything to do with taking those tinctures."
Posted by: Ribbit, Friday, December 9, 2011, 3:30am; Reply: 598
Quoted from TJ
Ribbit, that's really scary to feel like that!  


That's the thing.  It wasn't scary.  It was okay.
Posted by: ABJoe, Friday, December 9, 2011, 5:04am; Reply: 599
Quoted from Ribbit
That's the thing.  It wasn't scary.  It was okay.

I'm in a mental state of total acceptance, as well.  Whatever happens is fine because we "finally" realize that we aren't in control of anything.  Take advantage of whatever time we have, because it can end at any moment.
Posted by: Goldie, Friday, December 9, 2011, 4:39pm; Reply: 600
Yes that moment when we can surrender - to life - as it is, can be peace.  A way of living the moments.  A worthy discovery.  and once done, it make life less expecting, less hassled, less competitive.

All that in my life yes, but Ribbit (tip my hat) and others have so much more to consider.  Children and adults who depend on us.. I have near none left and that is freeing. It makes it easier... and yet I expect to have a long life which is a burden in some ways.  Like: I did all my suffering while young and feeling well now, and having little do do with it.. not complaining just stating facts..  I used to wish to make a difference, today I accept that I will only do so in very small ways.. knowing 'that' is also taking a burden off, but it does leave one wondering what will come alone.  

    
Posted by: JJR, Friday, December 9, 2011, 5:55pm; Reply: 601
Yeah, and living for the day at hand.  I used to always been so concerned about how I would feel when this was coming up or that was coming up.  I'm trying to focus on one day, this one.  And doing what I can.  I have been a lot more peaceful internally also.  Still working through some anxiety issues with germs, but it's working.  My pastor has helped me a lot with a Bible study and his counseling.  And I'm sure eating more has helped the old noggin.  
Posted by: ruthiegirl, Friday, December 9, 2011, 6:03pm; Reply: 602
Quoted from Ribbit


That's the thing.  It wasn't scary.  It was okay.


For YOU in that moment it was OK. For those who care about you, it's scary to know about it after the fact, thinking we could have lost you. That the time you were in NY and my son was sick so I told you not to come, might have been my only chance to meet you in person.
Posted by: Chloe, Friday, December 9, 2011, 6:26pm; Reply: 603
Quoted from ruthiegirl


For YOU in that moment it was OK. For those who care about you, it's scary to know about it after the fact, thinking we could have lost you.


I agree...but Ribbit,

Am I right or wrong in assuming that the kids were home alone and totally on their own for 3 1/2 hours while you slept?  How old is the oldest child and how responsible could that child be if
there were an emergency?

If this is true and the kids were alone while you didn't care if you died in your sleep, then from that perspective, it's rather terrifying for me to even read this! You were in a complete state
of disconnect and delusion and I find it beyond just scary.  It's so terrifying that I'd want to suggest you let a neighbor know or someone know if you're going to go to sleep when
you're in charge of the kids........or that you make some kind of safe arrangements for your children before ever doing this again.  I can't tell, Ribbit, if you're sending
out an SOS signal to us and nobody is really tuning into your situation or saying the right things
so you get the right kind of help.....or was this just one strange afternoon?

It sounds like you could use some help at home so you can get adequate rest.  Do you have
any family nearby?  Anyone you could hire?  A high school kid, even for a few hours so you
could take a planned nap?

Posted by: JJR, Saturday, December 10, 2011, 12:20am; Reply: 604
Her oldest is old enough and smart enough to handle it.  There's a lot more I could say but I'm not sure if she'd want me to, so I'll just leave it at that.  I'm sure they were fine.  But I can understand your concern.   :)
Posted by: Chloe, Saturday, December 10, 2011, 2:46am; Reply: 605
Quoted from JJR
Her oldest is old enough and smart enough to handle it.  There's a lot more I could say but I'm not sure if she'd want me to, so I'll just leave it at that.  I'm sure they were fine.  But I can understand your concern.   :)


Thanks for adding that oldest child is totally capable.  It's a big relief knowing this!  :)
Posted by: JJR, Saturday, December 10, 2011, 4:40pm; Reply: 606
No problem!!!!  
Posted by: 11080 (Guest), Saturday, December 10, 2011, 9:28pm; Reply: 607
Quoted from Kim


I emailed my doctor about this question of ice vs heat with someone with lyme disease.

The quoted email:

Question in email "ice on the  injury with someone who has Lyme disease makes the bugs replicate faster and you should use heat".

This is not true and I can't imagine who came up with this and why!"

end of doctor's quote,


It's a published fact by LLMDs that the bugs don't like heat and are not as active or able to replicate in heat.  Was it a LLMD who you asked?  And the way you asked the question in your e-mail misses the point.  I wasn't saying that people who need ice because of a herniated disk should not use it.  Just a caution that people with Lyme Disease should understand how temperature affects their disease. I think my comment led to a very productive discussion by many members about temerature and Lyme Disease, so I'm glad I made the comment, even if you felt you had to run to the doctor and misinterpret my point to him.
Posted by: Kim, Sunday, December 11, 2011, 1:53am; Reply: 608
Quoted from 11080


It's a published fact by LLMDs that the bugs don't like heat and are not as active or able to replicate in heat.  Was it a LLMD who you asked?  And the way you asked the question in your e-mail misses the point.  I wasn't saying that people who need ice because of a herniated disk should not use it.  Just a caution that people with Lyme Disease should understand how temperature affects their disease. I think my comment led to a very productive discussion by many members about temerature and Lyme Disease, so I'm glad I made the comment, even if you felt you had to run to the doctor and misinterpret my point to him.


I just asked the question of the doctor to make sure I wasn't causing further damage as far as the lyme disease goes by using ice on my neck.  The email is below.  

Here is the response from Dr. J's office.

Hi Kim,
I am of an opposite view to your friend’s. In a study done in 1995 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC173648/pdf/634535.pdf ), it was revealed that the spirochete replicated and migrated faster at 35 0 C as compared to 230C. This makes sense because the spirochete replicates in the human blood which is closer to 350C than 230C. (Most people have a normal temperature of 370C).
So, I don’t think cold temperatures will increase the replicative abilities of the spirochete. Also, cold padding is encouraged in the treatment of all forms of arthritis including Lyme arthritis. Cold padding numbs the inflamed nerves and this reduces pain, while hot padding relaxes the tension in the tendons and this also reduces pain.  

End of email from Dr. J's office.
Posted by: TJ, Sunday, December 11, 2011, 4:29am; Reply: 609
Now y'all play nice, ok?
Posted by: Ribbit, Sunday, December 11, 2011, 2:28pm; Reply: 610
All I know is that when I'm cold, I'm miserable.  When I'm not, I'm miserable.  When I'm luke-warm, I'm comfortable.  But when I'm hot, I'm less miserable than when I'm cold.  Before I started taking vitamin D, I dreaded the beginning of every winter.  I moped and dragged myself around.  I wear layers upon layers especially when I go anywhere because my body's reaction to temperature change is extreme. This early menopause thing isn't helping matters any.
Posted by: TJ, Sunday, December 11, 2011, 3:09pm; Reply: 611
What really annoys me about being cold is that it makes my metabolism slow down even more.  Shouldn't it be picking up the pace to keep me warm???
Posted by: JJR, Sunday, December 11, 2011, 4:02pm; Reply: 612
Are you eating more warming foods now?  That might help.  
Posted by: TJ, Monday, December 12, 2011, 12:02am; Reply: 613
Yes, stews, meats, grains, etc.

I recently saw a TV on eating disorders.  The episode I watched featured a woman with anorexia and a woman with bulimia.  The anorexic complained of being cold all the time, and her body temp was typically around 96.  To me it looks like another example of a body slowing down to conserve energy.  She was malnourished from not eating enough calories, and therefore her metabolism was slowed.

It's pretty clear to me that I'm somewhat malnourished.  It's also clear that, for me, it's not because I don't eat enough calories.  Those calories just aren't making it to where they "should" be.  I wish I knew how this is related to Lyme.  Does Lyme cause malabsorption in the digestive system?  Does it interfere with the metabolism of food into usable energy, or the use of metabolized food?  Is the immune system drawing away resources to fight the infection leaving too little for other functions?  This last one seems less likely, seeing how the immune system seems so sluggish in fighting off this infection for so many people.
Posted by: Chloe, Monday, December 12, 2011, 12:21am; Reply: 614
Quoted from TJ
Yes, stews, meats, grains, etc.

I recently saw a TV on eating disorders.  The episode I watched featured a woman with anorexia and a woman with bulimia.  The anorexic complained of being cold all the time, and her body temp was typically around 96.  To me it looks like another example of a body slowing down to conserve energy.  She was malnourished from not eating enough calories, and therefore her metabolism was slowed.

It's pretty clear to me that I'm somewhat malnourished.  It's also clear that, for me, it's not because I don't eat enough calories.  Those calories just aren't making it to where they "should" be.  I wish I knew how this is related to Lyme.  Does Lyme cause malabsorption in the digestive system?  Does it interfere with the metabolism of food into usable energy, or the use of metabolized food?  Is the immune system drawing away resources to fight the infection leaving too little for other functions?  This last one seems less likely, seeing how the immune system seems so sluggish in fighting off this infection for so many people.


I think once you find out you're gluten intolerant, you have to restore the damage that gluten did to your gut when you were eating it. The gluten flattens out the lining of the intestinal tract,
allowing a leaky gut...allowing toxicity to keep traveling all over your body. Given the large percentage of your immune system that IS located in the gut, it stands to reason that the immune system is weakened just by the gluten damage... Combined with Lyme toxicity, it takes a lot of work to get the gut operating properly.  I honestly think it's better to be a grazer when you have gut problems...and especially if your body feels chilled.  Eating is like gas in your car...You can't
drive without putting your foot on the gas pedal.  Eating often keeps the engine in your body
going.  Make sure your mineral intake is high...and that you get plenty of sea salt...Our bodies
thrive in an alkaline environment...Not talking about the nature for some blood types to make
adequate HCL.  I find on days I eat the most vegetables, the better I feel. Easier to do in cold
weather if you make a vegetable soup and eat it a few times a day. Food usually makes me feel
warmer.  I do avoid drinking or eating really cold food in the winter.

Ever try roasting root vegetables?  Yum...parsnips, carrots, onions, beets, squash...Lately I'm
living on a lot of root veggies.

In Chinese medicine, they speak about constitution...Cold, hot, damp, dry.  We usually wind
up unbalanced when we're ill.  Might help to read up on these conditions.  You might find clues
to help balance yourself with foods.
Posted by: ABJoe, Monday, December 12, 2011, 3:33am; Reply: 615
Quoted from TJ
What really annoys me about being cold is that it makes my metabolism slow down even more.  Shouldn't it be picking up the pace to keep me warm???

It sounds like the body isn't able to keep up with the energy needs.  It may be either the thyroid or adrenal systems at fault, or it may be that the gut isn't absorbing enough energy from the food to allow the body adequate energy to drive the metabolism to create the body warmth.

I'm sure there are probably more possibilities, as well.  
Posted by: C_Sharp, Monday, December 12, 2011, 3:47am; Reply: 616
I just wanted to mention Ginger Nash's recent blog on treating Lyme.

http://genotypediet.com/nash/?p=50
Posted by: JJR, Monday, December 12, 2011, 4:44am; Reply: 617
That is a great little write up.  A lot of potency in a few paragraphs.  
Posted by: TJ, Monday, December 12, 2011, 5:29am; Reply: 618
Quoted from Chloe
I think once you find out you're gluten intolerant, you have to restore the damage that gluten did to your gut when you were eating it.  ...Eating is like gas in your car...You can't drive without putting your foot on the gas pedal.  Eating often keeps the engine in your body going....

Ever try roasting root vegetables?  Yum...parsnips, carrots, onions, beets, squash...Lately I'm living on a lot of root veggies.

In Chinese medicine, they speak about constitution...Cold, hot, damp, dry.  We usually wind up unbalanced when we're ill.  Might help to read up on these conditions.  You might find clues to help balance yourself with foods.
I've been mostly gluten-free since the GTD book came out.  By mostly I mean no gluten grains, and only traces of gluten contamination.  I still haven't healed my gut.  That's why I suspect that the Lyme is keeping my gut from healing.

I eat carrots and occasionally sweet potatoes, but rarely roasted.

I figured there was something like what you said about constitution.  I mentioned that earlier in the thread.

Quoted from ABJoe
It sounds like the body isn't able to keep up with the energy needs.  It may be either the thyroid or adrenal systems at fault, or it may be that the gut isn't absorbing enough energy from the food to allow the body adequate energy to drive the metabolism to create the body warmth.
That sounds about right.  I don't have enough gas to run the engine at full power.

Quoted from C_Sharp
I just wanted to mention Ginger Nash's recent blog on treating Lyme.

http://genotypediet.com/nash/?p=50
Thanks!  Read it.
Posted by: ruthiegirl, Monday, December 12, 2011, 3:13pm; Reply: 619
There are also "warming spices" such as ginger and red pepper that "heat up" the metabolism, regardless of the physical temperature of the food. There are also "cooling spices" that you may want to minimize or avoid. There are lots of spices in both categories, so it should be easy enough to find ones that are compliant for your SWAMI and use them in your soups and stews and such.
Posted by: JJR, Monday, December 12, 2011, 4:59pm; Reply: 620
TJ, you said that you're eating enough.  Well, are you sure?  I thought I might have said this all in here but I've had a huge shift in thinking lately because my Pastor made something clear.  If you're not getting enough calories, it's not good.  He said 2000-2500 calories per day.  And then I talked to my doctor about it and what not.  But I hadn't really tracked my calories for a long time when my pastor brought it up.  So I found a free calculator on http://www.everydayhealth.com and started tracking it.  The first day I tracked it, I was only eating 1100 calories.  That's a 1000 less than I should be.  So I got busy.  It is not easy, but it seems to really be helping.  I have more energy lately (praise God) and am now going up in weight instead of down.  I had thought the problem was my guts weren't working.  And they're probably not completely perfect.  But what I was really doing was starving myself.  I had convinced myself that food was hurting me.  I know you probably don't have that problem, but if you're not actually calculating your calories, it may be part of the problem.  Because some of us when we don't feel good, stop eating.  Others eat when they don't feel good.  I'm the opposite, and I'm training my mind not to blame the food for every ache and pain or weird feeling I might have.  And on top of that, I figured it's better to have some strange things happen from eating, rather than starve myself to death.  

Joe has spoken this truth to me before and I didn't quite get it.  At times we might eat some good food and feel lousy, but it might be because it's helping detox or whatever.  But in the past I started just avoiding things that make me feel lousy.  But that's not really smart, because it might be a one time thing.  So I've been adding stuff back in every day.  And trying to really let my mental guard down and be.  Now of course if we notice patterns and what not, we should probably consider acting on them.  But I was just going overboard with blaming food for everything.  When my pastor came over a little over a month ago, I was down to 114.  Last night I got on the scale it said 117.5.  God is good.  

I'm just saying you might want to track your calories and see.  And if you are still losing, eat more calories.  Even if your gut isn't working well, it's probably good to figure out where you need to be daily to not lose weight.  Brinyskysail has shared in another thread that she was eating 3k a day to gain weight because her guts weren't working great either.  And she's smaller than you and I.  That's a lot.  And she wasn't active at the time.  So....  Anyways, just thought I'd throw this out here for you to chew on.

Oh, and by the way, one of the foods that I started to ease up on when I was losing weight were grains.  Because "grains are bad" type thinking.  And I know B's might struggle a little more than others with them.  But I'm now eating 1/2 cup dried of either oatmeal or brown rice every night with a good amount of nuts and it's a power packed, calorie dense meal.  And it tastes oh so good and is very fulfilling to my soul.  I know that is one food category that has made a big difference.  And more red meats.  Although they aren't all real high in calories.  Lamb is.  But it's funny, the turkey burgers I get are higher than the beef and venison burgers I get.  Anyways...  I'm hungry, gotta go eat some new food!!!  Praise the Lord hallelujah!!!
Posted by: Ribbit, Monday, December 12, 2011, 5:06pm; Reply: 621
TJ, chronic Candida goes hand in hand with Lyme.  Candida causes leaky gut too.  So while we've all got gluten damage, we've also all likely got Candida damage.  The reason Rob had his theory about me feeling better after running a fever is because yeasts and fungi flourish at slightly lower than body temperature.
Posted by: Ribbit, Monday, December 12, 2011, 5:09pm; Reply: 622
114?  JJ?!  Dude!  I'm very thankful your relationship with food is improving.  I've been worried about you.
Posted by: JJR, Monday, December 12, 2011, 5:24pm; Reply: 623
I was worried about me too.  But, the fact is, I think it was right place and right time, right message, God's timing is perfect.  Because the fact of the matter is, the more I eat, and push myself to eat, the hungrier I am.  I'm not sure if that would've been the case in the past.  There had been times my stomach just didn't like food.  I'd eat something and it's sit like a rock.  But even then, I was eating more than I was when my pastor came over.  I just had to take other things to coax my stomach to digest it.  At times I'd been on several digestive enzymes at one meal.  At one time I was taking 4 digest gold and 2 lypo gold at one meal.  That's TONS.  Right now, I don't need any.  And I'm hungry.  I haven't even been taking a probiotic.  I probably should, but I'll add that in when the time need be.  I don't want to detox right now, I want to build.  And my body seems to be agreeing with that.  Again, it's all timing.  But what I weigh is scary light.  And the plain stupid fact of the matter is, much of it was in my mind.  Yes, dealing with this disease and past struggles has shaped it, but I need to learn to push, instead of give up mentally.  I'm still going about adding foods somewhat slowly, but I try something new every darn day.  It might not always be a NEW food, but it's always some kind of stretch.  Like I just ate two figs that I've never had before.  I've had "black mission figs" before, but I've never had this companies.  And they look a little different than the ones I've been buying.  And that is a red flag to my mind, like it could cause a problem.  Which is crazy.  But that's what I've worked myself into.  And, there is probably some reason for trepidation.  But I have to throw some caution to the wind and just eat.  And not think about how it's going to affect tomorrow.  Live for today and the calories I need today.  I used to constantly worry about how it might affect me and how I might feel lousy and not be able to do such and such the next day.  Well, it made me not want to try any new foods and play it safe.  Again, I'm not saying that's what TJ is dealing with, I'm just saying what I'm dealing with.  

I ate a 1/3 of an egg on Saturday.  It had been about 3 months since I had eggs.  I felt kind of lousy that day and want to blame the eggs.  But there is also a cold going around and it could've been that and I'm telling myself that's what it is.  Now if I see patterns that are real hard to ignore, I'll give them some credence, but I'm done blaming food for all my ailments.  I NEED food, big time.  And this last month has shown me how true that is, and how helpful it CAN be.
Posted by: Chloe, Monday, December 12, 2011, 6:14pm; Reply: 624
I agree with RIbbit....It's candida/Lyme/gut dysbiosis...all going on at once. I always want fruit because my body is craving something that balances salty/savory...and although it sits well temporarily, I don't always feel well hours later. Does fruit cause rapid detox?  I want and need good carbs.  It's probably very difficult for a blood type A with chronic Lyme to avoid foods that feed yeast and candida...And I'm saying type A because our diets aren't supposed to be unbalanced with excessive protein.  All too acidic..There would never be enough calories in just plant foods minus fruit. Not many calories in soy foods.  How many nuts and seeds/beans can a person eat?  How many calories could there be in vegetables?  For anyone who is trying to gain weight, it's not easy. And trying not to lose is sometimes a great battle as well.  I seem to do best by eating every few hours rather than allow too much time to pass between meals because eating
does seem to generate more energy and make my body feel warmer. Just can't eat huge meals
because then I wind up feeling like I'm not digesting anything very well.

How many of us forget to eat slowly and chew every bite?  Drink fluids away from meals....breathe... exercise....or at least move around often.

JJR...sometimes it isn't just about the food.  I agree with you on that point.
Posted by: JJR, Monday, December 12, 2011, 6:21pm; Reply: 625
Yeah, I'm not trying to say that many of us don't have food challenges.  Because I totally understand that.  I just have taken it too far I believe.  I know not everyone has.  It probably does sound like that.

I eat more frequently also, and smaller portions than most to try and combat this thing.  I don't know how some people just put it away all at once.  And yeah, chewing has been a real focus for me.  I sometimes forget about that too.  And I have experienced having to deal with candida, how it makes you feel, how foods can mess with you, etc etc.  So, I'm sorry if I'm sounding like food sensitivities aren't part of the equation.  My father in law is a sugar junkie and keeps trying to tell me I need to eat more chocolate and little debbies if I want to gain weight.  Well that's just stupid.  I'll feel so lousy from it, that I'd be doing myself harm.  That's the extreme other end though.  It's funny because he has terrible health, has had cancer several times but doesn't equate it to diet at all.  And maybe it's not.  I think he just got to the point that he doesn't care if he eats food that might be hurting him.  Mentally it makes him happy.  And he's addicted to sugar.  And pushes it on everyone around him.  Including my kids.  Anyways.....  I'm going on and on today, I should let someone else talk for a while.  I need to go make lunch anyways.  hehehhehe
Posted by: Chloe, Monday, December 12, 2011, 7:09pm; Reply: 626
Too many people are unhealthy due to eating garbage.I can't see how eating Little Debbies
and more chocolate can be in your best interest...although dark chocolate has it's healthy benefits
in moderation. Don't feel the need to apologize for anything JJR....You, like many of us face
food sensitivities and food intolerances..  I wound up with many food intolerances because of chronic Lyme. I guess it's just about putting everything in perspective.  Each day is different...sometimes
feeling better, other times feeling worse.  Although my energy level is good...my weight not
a problem, it's still all about my gut....and I have to tread lightly when it comes to what I eat....
I totally get it...I think we all do!  :)
Posted by: JJR, Monday, December 12, 2011, 8:32pm; Reply: 627
Yeah, I've yet to delve out into the foray of restaurants and that type of thing.  99.5% of everything I eat is made from these hands at home.  We do eat panera every Friday night, because it's the only place that seems like it doesn't mess with me.  I get a salad with turkey meat on it.  Less a lot of avoids, like dressing and sesame seeds, etc etc.
Posted by: TJ, Monday, December 12, 2011, 9:03pm; Reply: 628
Quoted from JJR
TJ, you said that you're eating enough.  Well, are you sure?  I thought I might have said this all in here but I've had a huge shift in thinking lately because my Pastor made something clear.  If you're not getting enough calories, it's not good.  He said 2000-2500 calories per day.  And then I talked to my doctor about it and what not.  But I hadn't really tracked my calories for a long time when my pastor brought it up.  So I found a free calculator on http://www.everydayhealth.com and started tracking it.
I took your advice.  I used http://www.thecaloriecounter.com/ (that other one wanted me to register to use it).  I calculated 1541 so far today and that's just breakfast and lunch.  Another 500 will be a piece of... um, will be easy. ;)  I eat all day.  I eat when I'm bored or if I just need some stimulation.  I didn't think too few calories was a problem, but it was still good to check.  I have been eating plenty of grain, rice and oatmeal lately.  I put butter and/or CO on everything.  I will have at least one more big meal today and a couple snacks.

Quoted from Ribbit
TJ, chronic Candida goes hand in hand with Lyme.  Candida causes leaky gut too.  So while we've all got gluten damage, we've also all likely got Candida damage.  The reason Rob had his theory about me feeling better after running a fever is because yeasts and fungi flourish at slightly lower than body temperature.
That makes sense to me.  Check this out, regarding low BT: http://www.mall-net.com/mcs/coldbody.html

Quoted from Ribbit
114?  JJ?!  Dude!  I'm very thankful your relationship with food is improving.  I've been worried about you.
I second that.  Chow down JJ!  I'm holding steady at 135 lately, but it's all in my gut.  My pants are getting snug.  I wish that could be said of my shirts.

Quoted from Chloe
How many of us forget to eat slowly and chew every bite?  Drink fluids away from meals....breathe... exercise....or at least move around often.
Chewing has been a challenge lately.  My fillings don't fit quite right.  I'm going tomorrow to see if that can be corrected.  Lately I've been seeing a lot of "rabbit pellets" full of undigested food particles.

This whole package is a downward spiral.  Get infected -> malabsorption -> malnutrition -> low metabolism/body temp, weakened immune system -> more comfortable environment for the infection -> escalation of symptoms, ad nauseum. :X  This is indeed a fight our bodies can't win without some outside help to break the cycle.
Posted by: JJR, Monday, December 12, 2011, 10:12pm; Reply: 629
Wow!!!  What did you eat for lunch and breakfast to get you that many calories?????  I don't hit that until the evening right now.  And I wasn't even hitting it before.  But, you may need more calories than the average person, due to activity level, etc etc.  

But yeah, I'm sure gut flora has something to do with it.  Biofilms, etc.  
Posted by: TJ, Tuesday, December 13, 2011, 1:13am; Reply: 630
I haven't been active lately, laying in bed or sitting in front of the computer all day with this "cold".  For breakfast, I had a large banana, about 1/3 c. each of macadamias and almonds, and a medium apple, with some cranberry-blueberry juice blend.  For lunch, I had my turkey stew (about 1 1/2 c) over rice (about 2 c).  I cook rice 3 c dry at a time with a whole stick of butter.  I just finished a bowl of rice (2 c) and canned kidney beans (1/2 c) and some watermelon (2 c) for about 685 more calories.
Posted by: JJR, Tuesday, December 13, 2011, 4:35am; Reply: 631
Oh that all sounds delicious.  YUM!  The calories are in the butter and nuts I see.  And the rice.  Where's your veggies though?  
Posted by: Lola, Tuesday, December 13, 2011, 5:44am; Reply: 632
slow wins the race
Posted by: TJ, Tuesday, December 13, 2011, 7:45am; Reply: 633
Veggies are in the stew.  I probably should be eating more veggies, but that would mean fewer calories.  There's only so much room in there, ya know?
Posted by: JJR, Tuesday, December 13, 2011, 6:33pm; Reply: 634
Well, I don't mean to sound like a prude or a mother, but there are nutrients in veggies that you don't get in the other stuff.  Plus, it's a lot of sugar.  I always crave salty and savory to balance out the fruits.  That's just me.  And I feel like I totally need the roughage, or veggie fibers to keep me regular.  But I got the A thing and you don't.  hehehe.  

ALSO, there are vegetables that are high in calories.  I've found some I just love.  Peas are very high in calories.  I'll eat a huge bowl of them sometimes and it's like 150 calories.  Throw some butter in them or olive oil, some meat or nuts and you've got quite the caloric bowl of food.  Carrots are high. I just buy frozen and peas boil up in a couple of minutes.  Fast food.   8)  Squashes are somewhat high.  I buy cans of butternut squash and pumpkin and a half a can has like 100 calories.  Again, mix it with some other things and it's getting up there.  

Like Dr. D says the Talmud says "Woe the person who doesn't eat veggies".  I know, I know, I sound like your mother.  I'm just trying to help.  I'm glad you can eat well, but you never know, throwing in some veggies might help balance out the whole deal and might make your assimilation a little better.  I don't know.  Just a thought.
Posted by: ruthiegirl, Tuesday, December 13, 2011, 6:38pm; Reply: 635
Quoted from TJ
  I calculated 1541 so far today and that's just breakfast and lunch.  Another 500 will be a piece of... um, will be easy. ;)


Piece of steak. ;)
Posted by: TJ, Tuesday, December 13, 2011, 11:31pm; Reply: 636
JJ, if you're counting beans as veggies, I'm getting plenty.  Peas, kidney beans, navy beans, cannellini beans, string beans...

Quoted from ruthiegirl
Piece of steak. ;)
Lol, excellent!

Posted by: TJ, Wednesday, December 14, 2011, 1:18am; Reply: 637
I have a visualization I'd like to share.  I'm no graphic artist, and this was done freehand on GNU Paint (ever tried drawing with a mouse?), but hopefully it's clear enough that the point gets across.



For us to stay alive, we have to keep water in the tank.  There's always a little going out (nozzle on the right) for our basal metabolism.  Anything we do above just staying alive in ideal conditions is represented by the little floodgate on the left.  The faucet pouring water in is everything that nourishes us.  Ideally, we should be able to increase what's coming in, thereby increasing our capacity to think, act, grow, and cope with stress (represented by the water flowing out).  You might also think of leaks in the tank, representing inefficiencies and wastes of resources in our metabolism.

For some of us, the gate won't open as far as it ought to (thrifty metabolism, for example), so the tank fills up and starts spilling into the overflow (we get fat).  To fix the problem, we've got to get the gate working at full range again.  In the short term, we could reduce the incoming water pressure, but that will just force the gate down farther.

For some of us, we've only got a trickle coming in, and/or our tank is riddled with leaks from stresses and illness over which we don't have (immediate) control.  We can't afford to open the gate much.  Just getting by day to day is taxing, because anything above the minimum runs the tank down to a dangerously low level, and then we have to rest while it refills -- and if some unexpected extra stress comes along, we don't have the reserve to deal with it effectively.

There's also an unfortunate group that suffers from the fatigue and diminished capacity of the second group, who also struggle with maintaining a healthy weight (imagine the overflow much closer to the bottom of the barrel).

It's not elegant or thorough, but I like visual representations of ideas -- they are easier for me to understand, and maybe for others too.  I think a good way to look at Lyme disease is as a big leak in the tank!

If anyone would like to take this idea and recreate, refine, or elaborate on it, you have my blessing.  I'd like to see a neater rendition of it myself.
Posted by: ABJoe, Wednesday, December 14, 2011, 2:06am; Reply: 638
Quoted from TJ
JJ, if you're counting beans as veggies, I'm getting plenty.  Peas, kidney beans, navy beans, cannellini beans, string beans...

I would count green beans or green peas (the wet vegetable type only) as vegetables.  

All of the dried beans should be counted in the vegetable protein category.
Posted by: JJR, Wednesday, December 14, 2011, 3:36am; Reply: 639
I'm with you joe on that.  Beans are high starch foods.  Just like grains.  With some fat and protein.  But they are quite different from veggies.  But I do lump green peas, not dried split peas, into veggies.  In fact, that might coincide with Dr.D's lists now that I think of it.  I think peas are on vegetable protein list, but whatever.  That was only one of them I mentioned.  Squash, carrots, parsnips, all have pretty good calorie counts for veggies.  Now like cucumber and lettuce and others, got nothing.  But they have nutrients that are vital.  Like celery I think has like no calories, but it has quite a bit of minerals and nutrients, from what I understand.  
Posted by: TJ, Wednesday, December 14, 2011, 11:59am; Reply: 640
Regarding the illustration: it would be even better to think of this as fuel rather than water, to think of the "minimum metabolism for life" as the fuel needed to keep an engine idling, and the gate as what is needed to rev up the engine enough to do some work with it.
Posted by: TJ, Wednesday, December 14, 2011, 12:09pm; Reply: 641
Quoted from ABJoe
I would count green beans or green peas (the wet vegetable type only) as vegetables.  

All of the dried beans should be counted in the vegetable protein category.
Yes, true.  I usually crave broccoli, but lately I haven't wanted it.  Most of my veggies come from my stews currently.
Posted by: Chloe, Wednesday, December 14, 2011, 2:41pm; Reply: 642
The vegetable I crave most lately is brussels sprouts and I'm eating some every day. I light
roast them in the oven with EVOO and sea salt.

http://home.howstuffworks.com/brussels-sprouts3.htm

Peas have always been one of my favorite vegetables.  I often add a handful to miso soup.  Even
frozen peas defrost very quickly if you pour boiling water on them...then i add the miso paste.

Carrots, parsnips and beets are awesome roasted.... with EVOO sprinkled on top and
some good sea salt. i can eat bowls of vegetables prepared this way. Also butternut squash...I
just poke holes in it, place it on a baking sheet and roast the whole thing whole....When it gets
soft, I just peel off the skin and pull the squash apart, leaving the seeds.  Otherwise it's a very
difficult veggie to peel and chop.  I like to roast everything whole....especially beets...I peel
the skin off after it's roasted...

I think the problem with learning to eat a lot of  vegetables as a primary ingredient is the way we've learned to prepare them.

THe other night I took a whole rutabaga and grated it....along with an onion....squeezed out the
liquid....added an egg and a little bit of rice flour...salt...and took small handfuls and squeezed
them into a muffin pan lined with individual foil muffin cup "papers"....froze the whole batch
uncooked...When I want to make one...I pop it into the oven, drizzle it with EVOO and sea salt
and just let it bake.  Saves me from frying anything...and tastes to me like a potato pancake...
the potato "latkes" at Chanukah time that I used to love so much.

Green beans are also great roasted.....add chopped garlic before they're done and remove
pan when garlic is golden in color.

I am really focused on vegetables...learned to love them rather than just see them as wet flavorless green stuff sitting on a plate....

Really, appetites improve greatly when you make food you love to eat!

Sorry for hijacking this thread and making it all about food.....but sometimes I think about
the need for everyone to find joy in something they're doing.  I was never a great cook...but
just by using my imagination, I've learned to make foods I love to eat.  I think that's a very
good thing for anyone trying to overcome health challenges of any kind!

Here's to getting more enjoyment from the foods you're all eating, everyone!  :)
Posted by: Goldie, Wednesday, December 14, 2011, 3:00pm; Reply: 643
Quoted Text
Regarding the illustration: it would be even better to think of this as fuel rather than water, to think of the "minimum metabolism for life" as the fuel needed to keep an engine idling, and the gate as what is needed to rev up the engine enough to do some work with it.


effective rendition.. make a few squiggles on all sides for different illness or conditions... and you are home free.. Thanks for the effort.. VISUALS are really so much better then words.. that is why I like the new little booklet (other thread)  so much- few words big visuals.. simple.. and sticks in the mind longer..
Posted by: JJR, Wednesday, December 14, 2011, 5:36pm; Reply: 644
Chloe, that is super interesting about the butternut squash and acorn.  I cut the acorn in half and scoop out the seeds first.  But that makes sense as to how you're saying you do it.  That is great!!!  Yeah, roasting is one way to make veggies sing!!!!!!!!!!  YUM.   I made some rutabaga's the other night where I just cut the peel off and cut into cubes and stuck in a high oven with whatever else I was baking, covered with some water, and let them basically bake.  They turned out perfect.  Soft and the flavor is so good.
Posted by: nowishow, Wednesday, December 14, 2011, 8:07pm; Reply: 645
I like salad with lots of different veggies in them like:

Butter lettuce
Red lettuce
Kale
Bunch cilantro
Fennel bulb
Red Bell pepper
Carrots
Green beans
Peas
Beets

I make dressings out of:

Meyers lemons
Garlic
Thyme, Oregano, Salt, red pepper
Agave
EVOO

I also love to make stir fry meals. I either use ground meat or leftover meat and a little rice, quinoa, or canned beans. Lately I've been using:

Bok Choy
Any kind of peppers
Onions
Carrots
zuchini

And has anyone tried pea greens? They are so yummy. You can eat them raw in a salad or cook them in boiling water for about 30 seconds.

And Chloe - I'm with you! I can eat a lot of Bussel Sprouts! I like to cut them in half and fry them in ghee and EVOO with jalepeno peppers!
Posted by: JJR, Wednesday, December 14, 2011, 8:35pm; Reply: 646
Do you mean like sugar snap peas in the whole pod?  Those are awesome.  I'm not sure what "pea greens" are.  

Yeah, stir fries are yummy.  I haven't done too much of that lately.  I need to do that again.
Posted by: nowishow, Wednesday, December 14, 2011, 8:40pm; Reply: 647
Quoted from JJR
Do you mean like sugar snap peas in the whole pod?  Those are awesome.  I'm not sure what "pea greens" are.  



Pea greens are sprouts. I assume they're sprouted peas. They look similar to bean spouts. If you like peas, I think you'd like them.
Posted by: JJR, Wednesday, December 14, 2011, 11:57pm; Reply: 648
I don't have too many foods I don't like, taste wise.  There are a few things.  Strangely enough, it's sometimes foods that are avoids.  
Posted by: TJ, Thursday, December 15, 2011, 3:58am; Reply: 649
Quoted from JJR
I don't have too many foods I don't like, taste wise.  There are a few things.  Strangely enough, it's sometimes foods that are avoids.
That's a good sign.

I had my vegetables today, steamed broccoli, cauliflower, and carrots seasoned with salt, butter, cilatro, and basil.
Posted by: JJR, Thursday, December 15, 2011, 5:05am; Reply: 650
Sweeeeeeeeeeeeeeeeeet!  I mean, savory!!!!!!!!!!!  Hehehehe.   That sounds really good.  I think I need some carrots soon myself.  
Posted by: Ribbit, Saturday, December 17, 2011, 12:47am; Reply: 651
JJ, that made me laugh.  I like your drawing, TJ, but I can't think well enough to come up with anything to do differently.
Posted by: JJR, Saturday, December 17, 2011, 3:30am; Reply: 652
I had carrots at lunch today.  YUM.  About 2 cups of carrots with 4 oz of canned salmon and a little bit of evoo.  It was good.  I followed it up with about a cup of brussel sprouts and pecans bout an hour later.  Is it me or do pecans go with almost anything.  I'm learning to really enjoy my food and thanking God for a good amount of hunger.  Thank you LORD!!!
Posted by: Ribbit, Saturday, December 17, 2011, 10:21pm; Reply: 653
That's wonderful, JJ!
Posted by: nowishow, Monday, December 19, 2011, 8:16pm; Reply: 654
JJR- I'm so happy to hear you're enjoying your food!  ;D
Posted by: JJR, Tuesday, December 20, 2011, 2:04am; Reply: 655
It has been a huge blessing.  HUGE!  Now I need to get over some of these phobias.  My brain is getting tired trying to keep it all straight.  Hehehehe.  Plus, it's just kind of hectic around here, as it probably is for everyone else too.
Posted by: JJR, Sunday, December 25, 2011, 1:25am; Reply: 656
I need a sounding board to whine.  My wife and kids went down to her parents house in Alabama.  I'm staying at my parents so I don't have to be alone.  

My anxiety level is really not so good.  Every time I eat I'm starting to freak.  Tonight I made venison burgers and I was just freaking about if they were completely done.  I baked them and I usually flip them.  Well, this time I didn't.  The internal temp was fine, and I'm coming down from my anxiety with a little help from essential oils.  But I'm just mentally all out of sorts.  I'm not at home, my parents are nice but not as understanding about my situation as my wife and you all here.  They like to watch TV constantly with the volume so loud, it's just not relaxing.  Plus it's all movies I've seen a million times, or ones that are just dumb.  Like the Return of Zoro or some c**p.   And you just have to know my Dad.  He's watching the Movie Sahara and he acts like we should all have our eyes glued and when I told him I've seen it a few times already, he's completely surprised.  Because he's the kind of guy that thinks if he hasn't done it seen it, nobody else could know about it besides him.  

I have to go up a flight of stairs to a bedroom, which last night seemed to get my lymph's moving and I was fighting that no breath thing, even though my heart rate was real low.  

Then, my Grandma and other Dad went over to my sisters today.  They were expecting me to come, even though we're planning on having them up for Christmas at our house when my wife gets back.  And all this stress is making me not feel so good.  So I didn't go.  And I could tell my Grandma was not happy with me.  

I'm more inflamed than normal and I don't really know what's causing it, other than I'm not at home, and I'm stressed.  My Mom likes to think she has a super healthy household, but she uses all kinds of chemical soaps and what nots and I can't tell what dishes are clean and what aren't.  Etc etc.  

I want to go into the night and run away screaming, IF I could actually manage it.  

I'm trying to hold onto God and his provision and care for me, but I have to admit, I'm not doing a very good job of it.  I'm not doing a very good job at rejoicing in my troubles.  I guess I need to start.  

Anyways, thanks for listening.  Any prayers and good vibes are welcomed.  I'll be fine, I just wanted to whine to someone.  I know you guys really know what's up and how these things can affect us.  It's like everything is heightened by not feeling well.  And the part that's frustrating is I was feeling better before all this.  I had a feeling it would all come to this, but I'd rather just be at home with my wife and kids.  Soon enough.  
Posted by: nowishow, Sunday, December 25, 2011, 5:42am; Reply: 657
I'm so sorry you're having such a hard time JJR. I'm home by myself (well me and my cat). My spouse has gone to her family's house for Christmas. I haven't been able to handle a party situation for a long time so I know how you feel. It's all too much and I just get sicker and sicker. And there's no good way to explain how you feel too your family. So I end up feeling bad for not going or I end of feeling terrible (physically and emotionally) if I go.

This year I'm going to meet with family later in the week. I'm hoping some of the craziness will have calmed down by then. But I know it will still be hard on me. The drive is three hours and that will have me in tremors by the time I get there. But I do want to see my family and show them I care.

I wish you the very best. I'm thinking of you and sending you a big hug.  :K)
Posted by: JJR, Sunday, December 25, 2011, 6:54am; Reply: 658
Thank you.  Yeah, it's a darned if you do and darned if you don't situation.  I so understand what you're going through.  And no one can understand what our minds and bodies deal with, because they're not where we're at.  I know sometimes I should just give in and go.  But like you say, you pay for it.  I'm paying for it just being somewhere else than home, and anything more is just really over the top for me, right now.  

I made some of my Mom's Brown rice last night, it was Goya long grain, and my Mom's cooktop is a little hotter than mine.   Well, it was really dry and I ate a good amount anyways.  And I think I paid for it.  It's just things like that can really make an impact on how I feel.  When I'm at home, I have so much more control over what goes into my body.  And I think it makes a difference.  Oh well.  Sooner or later, it will be over with and things will be back to normal.  I guess I need to just relax, think happy thoughts about future days.  Endure what I can, the best I can, with the best attitude I can muster.  But man I want it to be over with.  I'll say a prayer for your upcoming trip.  IT'LL BE GREAT!!!  You're so strong.  But I will say a prayer for you.  
Posted by: TJ, Sunday, December 25, 2011, 8:16am; Reply: 659
The most stressful situations I ever deal with are ones in which I don't have enough control of what is happening to me.  I understand what that's like.  I hope you can hang in there and have enough downtime to recover when you get home.
Posted by: deblynn3, Sunday, December 25, 2011, 2:51pm; Reply: 660
{{{hugs}}} to all who find this time for whatever reason stressful.
Posted by: ruthiegirl, Sunday, December 25, 2011, 4:07pm; Reply: 661
I'm sorry JJR.
Posted by: Chloe, Sunday, December 25, 2011, 4:11pm; Reply: 662
Quoted from deblynn3
{{{hugs}}} to all who find this time for whatever reason stressful.


I ditto what deblynn3 said!

Just want to add that when things have gone out of control for me, I remind myself not to feel
victimized by the behavior of others...not to get caught up in their issues....issues that clearly aren't mine to get sucked into or really care about.....I try to find a quiet spot somewhere to get away from the chaos and just sit and meditate for awhile...pull the plug on the world around me and detach myself from egos that I find difficult to cope with.

Sometimes just listening to calming music or a guided meditation CD helps me.  Although I totally understand the frustration you feel when having to deal with behavior of others that you find so annoying. You need some survival skills so you can take control back of your life. Finding something positive to replace the negative energy that engulfs you might make you feel more self empowered...:)

I hope things get better for you JJR..
Posted by: Kim, Sunday, December 25, 2011, 4:28pm; Reply: 663
JJR-  I know that telling you that going through lyme treatment produces all the feelings that you are going through isn't going to make it better.  The roller coaster of emotions starts and feels like a boiling pot of water that you can not stop.

For me, I try to find one alternative activity that will get me off the current panic episode.  I get into the shower or to take a bath.  Call a good friend and rant on the phone if it helps.  Sometimes just listing to some praise and worship music will help.  Find that one thing that can distract you.  

The lyme die off is messing with your central nervous system.  That is a sign that your treatment is killing those little critters.  I have to keep telling myself that this is a long marathon.

Merry Christmas!!!!
Posted by: JJR, Sunday, December 25, 2011, 5:47pm; Reply: 664
Chloe, I had a good morning and got to do just what you said.  I had some Bible reading time of psalms, I listened to some music that I love on my laptop that I brought with, and I meditated on some verses.  I asked God to help me and my and show me the way.  I'm wanting to go home, but I'm not sure which day, as I don't necessarily want to be alone for days on end.  I may go back at the end of tomorrow, so I can sleep in my own bed, and I'll have a day and a half before my wife gets back.  But regardless, I had a good quiet time, and it helped.  I think I'll get more today, because my Mom and Dad are planning on going to a movie and I think I'll stay home and listen to some more music.  Plus, I have to skype my wife and kids.  And I have to keep getting good food in me.

Oh yeah, I fried a perfect egg at breakfast this morning.  I think it was God's gift to me.  I had other stuff too, but for some reason when an egg is done just right, it makes me all fuzzy inside.  

Thank you all for giving me a sounding board and  understanding hearts and minds.  And the support is such a blessing.  I don't know if I've said it enough, but this place has been such a huge blessing and comfort in times of trial for me.  I have gleaned information, help, and so much more.  I've gotten love from so many and it means a ton.  I hope I can return a portion of what has been given to me.  I thank God for you all, and even if we don't have the same spiritual beliefs, I still feel the same way about all of us that support each other.  What a great place to be.  And I'm especially thankful right now.
Posted by: TJ, Sunday, December 25, 2011, 7:48pm; Reply: 665
Quoted from JJR
I had other stuff too, but for some reason when an egg is done just right, it makes me all fuzzy inside.
Fuzzy like a loaf of bread that's been out too long? ;)
Posted by: JJR, Sunday, December 25, 2011, 8:37pm; Reply: 666
No no, a good kind of fuzzy.  C'mon, don't be messing with me like that with all my germaphobia.  hehehhe.
Posted by: ABJoe, Sunday, December 25, 2011, 8:40pm; Reply: 667
Quoted from JJR
I made some of my Mom's Brown rice last night, it was Goya long grain, and my Mom's cooktop is a little hotter than mine.   Well, it was really dry and I ate a good amount anyways.  And I think I paid for it.  It's just things like that can really make an impact on how I feel.

I'm not sure it makes that big of a difference...  I can have varying responses from the same food item cooked the exact same way...  I think it has more to do with what the body is doing internally, or other inputs combined, rather than a minute difference in the preparation of 1 food item.

I understand the logic you went through to arrive at your decision, but I'm not sure it is a valid conclusion based on the immense number of variables that aren't taken into account.
Posted by: Goldie, Sunday, December 25, 2011, 8:56pm; Reply: 668
I am glad for all times we can say things and be understood.. I used to get all crazy with family, but as I got older and AM EXPECTING less of my self, I am able to cope better with holidays.. I used to feel inadequate or as if I should be more.. what I had no idea, since I was giving it my all, but still I was nudgy/uncomfortable to me.. ME... Later I started to VOTE with my feet and leave even if only into another room when things got to tense.. IT took years but now it is understood that I will not stay to be abused no matter what kindness is expressed.. when I feel myself starting to get emotional I walk out, away, or at least to a bathroom.  It just is not possible to recover otherwise.. and recover I have to, or I would have no life at all.

Be good to all of you and tell your 'self' that you deserve whatever you need and there is nothing wrong with any request, even if it can not be fulfilled always.

all the best and soon the hard times will be over.. a good thing, just as is the anticipation..  

    
Posted by: TJ, Monday, December 26, 2011, 5:37am; Reply: 669
Quoted from JJR
No no, a good kind of fuzzy.  C'mon, don't be messing with me like that with all my germaphobia.  hehehhe.
Perhaps I could interest you in some superstition instead? (as I notice that your post is number 666)
Posted by: Lin, Monday, December 26, 2011, 12:34pm; Reply: 670
Chloe, I do agree with your comment :

I think the problem with learning to eat a lot of  vegetables as a primary ingredient is the way we've learned to prepare them.

And I love some of the ideas you jotted down and plan to try some, especially the roasting squash whole.  I'm often put off making something if it feels like a lot of work but that is such a simple idea.  Perhaps we should have a thread for cooking veggie's!

thanks, Lin
Posted by: Chloe, Monday, December 26, 2011, 2:41pm; Reply: 671
Quoted from Lin
Chloe, I do agree with your comment :

I think the problem with learning to eat a lot of  vegetables as a primary ingredient is the way we've learned to prepare them.

And I love some of the ideas you jotted down and plan to try some, especially the roasting squash whole.  I'm often put off making something if it feels like a lot of work but that is such a simple idea.  Perhaps we should have a thread for cooking veggie's!

thanks, Lin


You're welcome Lin. :)

I know there have been many threads over the years on sea vegetables and cultured vegetables and I think I remember reading and writing about cooking vegetables but unless threads attract interest they seems to disappear from the search engine. I'll start one on cooking vegetables.  Let's see if it sparks any interest.  The forum is forever changing.  You never know when a vegetable expert will appear.  :)
Posted by: JJR, Monday, December 26, 2011, 5:14pm; Reply: 672
Quoted from TJ
Perhaps I could interest you in some superstition instead? (as I notice that your post is number 666)


If man is 5, then the devil is 6, THEN GOD IS SEVEN!!   ;D
Posted by: ruthiegirl, Monday, December 26, 2011, 6:03pm; Reply: 673
Quoted from TJ
Fuzzy like a loaf of bread that's been out too long? ;)


I think he means fuzzy like a hypo-allergenic cotton fleece blanket, freshly washed and sanitized in hot water with pure, gentle soap, still warm from the dryer.
Posted by: JJR, Tuesday, December 27, 2011, 2:04am; Reply: 674
That's awesome ruthie.  Made me laugh!  And yes, feels good too.
Posted by: TJ, Thursday, December 29, 2011, 3:17am; Reply: 675
Have any of you heard of or tried lumbrokinase, nattokinase, or serrapeptase?  They are enzymes that purportedly help break up Lyme and other types of biofilms.
Posted by: JJR, Thursday, December 29, 2011, 7:21am; Reply: 676
No, I haven't even heard of them.  I can run it past my Doctor.  Where did you hear of them?
Posted by: Goldie, Thursday, December 29, 2011, 10:58am; Reply: 677
actually while we are laughing.. I bought a jacket that feels so soft and smooth and light as soon as I put it on, it feels like the hair on a cat -on my skin.. it is so warm..  but its not fuzzy just soo soft
Posted by: TJ, Thursday, December 29, 2011, 11:49am; Reply: 678
http://www.lymediseaseresource.com/wordpress/betaine-hcl-protocol/

You can also do a search for "lyme busters".
Posted by: Goldie, Thursday, December 29, 2011, 1:05pm; Reply: 679
I just came to page 21 and found this again..

There are lyme organizations that have forums like this one where those affected by Lyme disease and coinfections can help each other out.  The book will mention a few of them.

Turn the Corner Foundation.com
Lymenet.org
lymefriends.org
http://www.mdjunction.com/forums/lyme-disease-support-forums/
Posted by: Ribbit, Thursday, December 29, 2011, 9:49pm; Reply: 680
Quoted from TJ
Have any of you heard of or tried lumbrokinase, nattokinase, or serrapeptase?  They are enzymes that purportedly help break up Lyme and other types of biofilms.


Are those enzymes found in Genoma Security?  I've been taking that.
Posted by: Ribbit, Thursday, December 29, 2011, 9:50pm; Reply: 681
JJ, you got my number if you need somebody to talk to.
Posted by: JJR, Thursday, December 29, 2011, 10:41pm; Reply: 682
Thank you Leanne!!!  Elizabeth is home and I've been home for a couple of days now.  It was good to be home, even it it was alone for a day and a half.   ;D
Posted by: Ribbit, Thursday, December 29, 2011, 10:43pm; Reply: 683
I'm sorry I didn't check this thread earlier.  I really should check in every day.  We need each other.
Posted by: TJ, Thursday, December 29, 2011, 11:05pm; Reply: 684
Quoted from Ribbit
Are those enzymes found in Genoma Security?  I've been taking that.
I don't know.  Maybe these could be useful additions to Genoma Security.

So I'm finally getting on the vitamin D bandwagon.  I went out and actually managed to find a supplement that used olive oil as a base instead of some avoid oil like soybean or safflower. (dance)  It's a ray on sunshine in the middle of a period of misery.  I guess I'm flaring or herxing or something unpleasant.  Yesterday I quit taking the supplements that I bought specifically for boosting my immune system just to give myself a break.  Then when I'm feeling better again I'll give them another go -- a "pulse" approach.
Posted by: Kim, Friday, December 30, 2011, 10:53pm; Reply: 685
I take Genoma Security plus the nattozymes to bust up the biofilm.
Posted by: Ribbit, Saturday, December 31, 2011, 1:33am; Reply: 686
Quoted from TJ


So I'm finally getting on the vitamin D bandwagon.  I went out and actually managed to find a supplement that used olive oil as a base


Yes.  Nature's Answer has Vitamin D-3 drops that are in olive oil.  That's what I've been feeding the rest of the family.  Mine is in soybean oil, which I'm not crazy about but at least I'm not allergic to it.  I'm pretty sure the fact that we've been taking D for a couple of months has kept us from being sick.  They're just getting over a very mild case of chicken pox, but *none* of us has had anything remotely related to a cold this fall/winter yet.
Posted by: Kim, Wednesday, January 4, 2012, 1:41pm; Reply: 687
I finally got a thread going on BTD on Lymenet.org.  The thread started out talking about Lyme disease and type A's but I got some folks talking about it anyway.   ;D
Posted by: TJ, Thursday, January 5, 2012, 1:46am; Reply: 688
Quoted from Kim
I finally got a thread going on BTD on Lymenet.org.  The thread started out talking about Lyme disease and type A's but I got some folks talking about it anyway.   ;D
How's that thread going?  Are you getting positive feedback and discussion?

I bought a copy of Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections by Stephen Harrod Buhner.  So far I've gotten through the intro and most of chapter one.  He has sifted through a great deal of scientific literature on Lyme and so far it looks like a very thorough treatment of the subject.  A fair amount of what I've read so far is over my head, but I've gotten a much better idea of how insidious and adaptable this thing is.  I haven't gotten to the treatment protocols yet.  I'll share more as it seems appropriate, but from the little I've read so far, I'd recommend it for your reading.
Posted by: TJ, Thursday, January 5, 2012, 3:52pm; Reply: 689
I just found my first bit of practical advice in the book.  It's regarding Astragalus, which is one of the supplements I was taking to support my immune system.  Apparently, Astragalus is a good supplement to protect against infection, or to fight infection if you've just been infected.  However, if you're dealing with late-stage/chronic Lyme, it should be avoided because it can aggravate "auto-immune-like aspects of late-stage infection."  It's no wonder I was feeling so rough while I was supplementing for immune support.
Posted by: Spring, Thursday, January 5, 2012, 5:43pm; Reply: 690
Quoted from TJ
I just found my first bit of practical advice in the book.  It's regarding Astragalus, which is one of the supplements I was taking to support my immune system.  Apparently, Astragalus is a good supplement to protect against infection, or to fight infection if you've just been infected.  However, if you're dealing with late-stage/chronic Lyme, it should be avoided because it can aggravate "auto-immune-like aspects of late-stage infection."  It's no wonder I was feeling so rough while I was supplementing for immune support.


You just proved again that old saying of Frances Bacon: Knowledge is power!
Posted by: JJR, Thursday, January 5, 2012, 6:01pm; Reply: 691
I was taking it once a long time ago too (astragalus), and then when I went to my current doctor, they told me I didn't need it.  There are so many types of supps and cures for all types of things, that it's a very complex thing to know what to take when.  And our bodies are always changing. All I know to do is pray, and trust my doctors.  And informing ourselves with good books is good too.  But sometimes information get so convoluted because of how many things there are a person could do.  I mean, there's probably over 3 dozen supps that would be "Good" for me, but there's no way I'm taking them all at once.  No way.  So, therein lies the 30 billion dollar question.  What to do and when to do it.  But that I have to rely on some intuition and some kind of guidance from others and above.

I'm interested to hear more about what this guy has to say though, if you're up to talking about it.  I might have to read it myself sometime.
Posted by: nowishow, Thursday, January 5, 2012, 11:20pm; Reply: 692
Quoted from TJ
Have any of you heard of or tried lumbrokinase, nattokinase, or serrapeptase?  They are enzymes that purportedly help break up Lyme and other types of biofilms.


I've been taking serrapeptase for about three months and I think it does help. I take it at night before going to bed.
Posted by: nowishow, Thursday, January 5, 2012, 11:29pm; Reply: 693
Quoted from TJ
How's that thread going?  Are you getting positive feedback and discussion?

I bought a copy of Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections by Stephen Harrod Buhner.  So far I've gotten through the intro and most of chapter one.  He has sifted through a great deal of scientific literature on Lyme and so far it looks like a very thorough treatment of the subject.  A fair amount of what I've read so far is over my head, but I've gotten a much better idea of how insidious and adaptable this thing is.  I haven't gotten to the treatment protocols yet.  I'll share more as it seems appropriate, but from the little I've read so far, I'd recommend it for your reading.


That's a very good book. Just so you know he's changed the protocol a little. I think you can get the update on his website. Let me know if you can't find it and I'll hunt it down for you. The support protocols are what I use the most from that book. It's a great source.
Posted by: TJ, Friday, January 6, 2012, 3:24am; Reply: 694
Quoted from JJR
I'm interested to hear more about what this guy has to say though, if you're up to talking about it.  I might have to read it myself sometime.
I'd recommend it.  The core herbs are Andrographis paniculata, Japanese Knotweed, and Cat's Claw.

Quoted from nowishow
I've been taking serrapeptase for about three months and I think it does help. I take it at night before going to bed.
I just bought some nattokinase tonight.  One poster on Buhner's website had lots of good things to say about it, and suggested that it could help the herbal protocol to be even more effective.

Quoted from nowishow
That's a very good book. Just so you know he's changed the protocol a little. I think you can get the update on his website. Let me know if you can't find it and I'll hunt it down for you. The support protocols are what I use the most from that book. It's a great source.
The only thing I could find was:
BOOK CORRECTIONS
Page 106, under “Specific indications for Lyme disease:” last line. This should be “bartonella coninfection.” NOT “ehrlichia coinfection”.
I'd appreciate knowing where those updates are!
Posted by: TJ, Friday, January 6, 2012, 3:43am; Reply: 695
Quoted from JJR
I'm interested to hear more about what this guy has to say though, if you're up to talking about it.  I might have to read it myself sometime.


JJR, this might be more interesting than what I posted above:
Rather than making it a priority to kill the Lyme spirochetes in any form, Stephen's approach is as follows:
1. Support collagen structures so that damage to the body systems ceases;
2. Enhance immune function so that the body can deal with the organism itself;
3. Shut down the inflammatory pathways the spirochetes initiate, especially in the CNS;
4. Treat symptoms;
5. And only then, try and kill the spirochete.
The full protocol is listed on the page I linked.
Posted by: JJR, Friday, January 6, 2012, 6:10am; Reply: 696
Yeah, that sounds like a good list of priorities.  The trifecta I had heard from another source was, 1. Kill the lyme spirochete 2. build immune system 3. deal with the coinfecdtions.  

I like that guys list a little more because of the inflammatory part.  Because I know I've had plenty of that over the last 3 years.  Especially when trying to be active.  
Posted by: TJ, Friday, January 6, 2012, 6:14am; Reply: 697
Ok, here's an even better link.  This is from 2009:
http://www.publichealthalert.org/Articles/scottforsgren/Buhner.htm

Apparently Andrographis is no longer in the core protocol, but Siberian ginseng is.
Posted by: nowishow, Saturday, January 7, 2012, 12:13am; Reply: 698
Quoted from TJ
Ok, here's an even better link.  This is from 2009:
http://www.publichealthalert.org/Articles/scottforsgren/Buhner.htm

Apparently Andrographis is no longer in the core protocol, but Siberian ginseng is.


Is Eleutherococcus also called Siberian Ginseng?
He lowered the statis of Andrographis because a lot of people had bad skin responses, but many people really benifit from it.
Posted by: TJ, Saturday, January 7, 2012, 1:11am; Reply: 699
Quoted from nowishow
Is Eleutherococcus also called Siberian Ginseng?
Yes: Eleutherococcus senticosus is the proper Latin name.
Posted by: Ribbit, Tuesday, January 10, 2012, 3:11pm; Reply: 700
1. Support collagen structures so that damage to the body systems ceases;
2. Enhance immune function so that the body can deal with the organism itself;
3. Shut down the inflammatory pathways the spirochetes initiate, especially in the CNS;
4. Treat symptoms;
5. And only then, try and kill the spirochete.




That's sort of what my ND has done.


I'm considering getting the whole collection of tinctures in the Cowden protocol and dealing with this myself.   :-/
Posted by: Kim, Wednesday, January 11, 2012, 12:05am; Reply: 701
I am also now using acupuncture to boost the immune system.  Also helps with all the other Lyme symptoms.  
Posted by: TJ, Wednesday, January 11, 2012, 12:34am; Reply: 702
Ribbit, what is the Cowden protocol?
Posted by: ABJoe, Wednesday, January 11, 2012, 3:13am; Reply: 703
Quoted from TJ
Ribbit, what is the Cowden protocol?

TJ,

Here is a link to the Nutra-medix website that talks about it - Month 1 shown, other months are accessible in left menu bar...
http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=5&idproduct=15#details
Posted by: Kim, Thursday, January 12, 2012, 10:35am; Reply: 704
I just found out I have inflammation of the optic nerve in my left eye which is typical of lyme disease.  The lyme doctor said topical steroids were okay.  

In the next few days if my vision doesn't worsen, I am good, but if it does worsen the only way to stop permanent vision loss is oral steroids.

I consulted my lyme doctor and she said to take the steroids with my antibiotics and of course save my eye.  There is a chance I could lose the vision in my left eye.

This is very common in Lyme patients.  The steroids are not good for lyme disease at all but losing vision in an eye isn't either.  
Posted by: nowishow, Thursday, January 12, 2012, 6:36pm; Reply: 705
I'm so sorry Kim. That sound very scary. I'm wishing you the best.  :K)
Posted by: nowishow, Thursday, January 12, 2012, 6:41pm; Reply: 706
Has anyone heard from spinnakertech lately? I just tried to send a PM but her box was full.
Posted by: TJ, Thursday, January 12, 2012, 7:17pm; Reply: 707
Quoted from Kim
I just found out I have inflammation of the optic nerve in my left eye which is typical of lyme disease.  The lyme doctor said topical steroids were okay.
I have trouble with my left eye, too, but it's nothing as serious as that, thankfully.
Posted by: JJR, Thursday, January 12, 2012, 8:28pm; Reply: 708
Oh my.  I'll be saying a prayer for you Kim.  
Posted by: TJ, Friday, January 13, 2012, 5:49pm; Reply: 709
Article: Herxheimer Reaction Is A Good Thing. The Worse, The Better! REALLY???

Quoted Text
When a doctor uses an antibiotic to kill some Lyme spirochetes in a patient, there is often a resultant Jarisch-Herxheimer reaction (Herx) — a worsening of the patient’s symptoms in response to the increased release of bacterial die-off toxins. The toxins are deposited into the bloodstream and are circulated throughout the body until they can either be eliminated or become lodged in areas of weakened tissues. As neurotoxins, they are preferentially taken up by nerve tissue. These lodged toxins are one of the reasons that symptoms can persist even after the actual Bb infection is gone; the toxins can remain as an irritant in the tissues for years.

In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!
Posted by: JJR, Friday, January 13, 2012, 5:53pm; Reply: 710
Interesting.
Posted by: ABJoe, Friday, January 13, 2012, 6:07pm; Reply: 711
Quoted from TJ's post
In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!

This is why you need to heal the gut first or at least be doing things that will help it while you are doing any bacterial killing.  

You have to continue to keep the gut healthy as some of the waste can be very difficult to move out, but you want it to move out as quickly as possible.
Posted by: JJR, Friday, January 13, 2012, 8:51pm; Reply: 712
I have to say something about this.  My doctor is really into eating probiotic foods.  Like kefir, cultured veggies, etc.  It's supposed to be really good for you and help populate your gut.  But I'm so sensitive to the amounts of these.  If I just eat just a hair too much of that stuff, I get the herxing so bad, it's just no fun.  My body just really gets tore up.  I get so inflammed.  And I tell them that.  And I personally, have just quit eating stuff like that for now.  I know it has actually done good in the past though.  Despite the herxing.  I KNOW that it helped heal my gut from where it was to now.  And believe me, it's a whole lot better now.  But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.  

Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.  How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?
Posted by: ABJoe, Friday, January 13, 2012, 10:39pm; Reply: 713
Quoted from JJR
But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.  

Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.  How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?

I know exactly what you are talking about, JJ...  I have a practitioner that works with homeopathic remedies that help me tremendously.  Thing is, once I get one thing under control, another pops up, so it is a continuously changing game.

The On-Fire feeling is when the body is ripping toxins away from nerves or nerve centers.  If anyone can tell me how to eliminate the pain, without pharma drugs, I'm happy to listen.  I'd rather have the pain than drug induced brain fog - at least I know pain is a real indicator.
Posted by: TJ, Friday, January 13, 2012, 11:09pm; Reply: 714
Quoted from JJR
I have to say something about this.  My doctor is really into eating probiotic foods.  Like kefir, cultured veggies, etc.  It's supposed to be really good for you and help populate your gut.  But I'm so sensitive to the amounts of these.  If I just eat just a hair too much of that stuff, I get the herxing so bad, it's just no fun.  My body just really gets tore up.  I get so inflammed.  And I tell them that.  And I personally, have just quit eating stuff like that for now.  I know it has actually done good in the past though.  Despite the herxing.  I KNOW that it helped heal my gut from where it was to now.  And believe me, it's a whole lot better now.  But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.
I'm there.  I went through a period in which probiotics were big trouble for me.  Then I had a period in which they were no problem.  Now they are giving me trouble again.  I quit taking them because I have a life to live.  Perhaps there is a strain in my current supplement that is incompatible.  Who knows?  I'm not going to force myself to suffer for a benefit that may not materialize, or worse, do something in the name of healing that leaves me worse off than before.

Quoted from JJR
Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.
Something good for you can feel bad if done to excess.  JJ, I don't doubt that treatment helped, but couldn't it have still helped if done more slowly and moderately, without causing such suffering?  If you expect to feel miserable during treatment, how can you distinguish between a mere Herx reaction and an adverse reaction to the treatment itself?  If I try any treatment, and find that I feel worse for it instead of better, let that be a sign to me that I need to either reduce the intensity or discontinue it entirely.

Quoted from JJR
How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?
The herbs in the core protocol do this.  These herbs have anti-bacterial properties, but their main function in Lyme disease is to get the causal mechanisms of the symptoms under control.  There's too much to write out in this post -- 15 pages on the #1 priority herb Japanese Knotweed.  Stephen Buhner doesn't believe that the borrelia spirochetes can be completely eliminated from the body, but that the symptoms can be controlled and the spirochete activity shut down to a minimum, or so I understand it.  His approach deals for symptoms as causal factors.
Posted by: Chloe, Saturday, January 14, 2012, 12:13am; Reply: 715
Quoted from TJ
I have trouble with my left eye, too, but it's nothing as serious as that, thankfully.


I have trouble with my left eye too...A vitreous gel tear...macular pucker...I need eye surgery
because i can barely see out of my left. But something caused my left eye to disintegrate...I
attribute it to Lyme too!

Yikes, Kim...I hope you will be alright!  Sending you my best wishes.

Posted by: JJR, Saturday, January 14, 2012, 5:14am; Reply: 716
Quoted from TJ
I'm there.  I went through a period in which probiotics were big trouble for me.  Then I had a period in which they were no problem.  Now they are giving me trouble again.  I quit taking them because I have a life to live.  Perhaps there is a strain in my current supplement that is incompatible.  Who knows?  I'm not going to force myself to suffer for a benefit that may not materialize, or worse, do something in the name of healing that leaves me worse off than before.

Something good for you can feel bad if done to excess.  JJ, I don't doubt that treatment helped, but couldn't it have still helped if done more slowly and moderately, without causing such suffering?  If you expect to feel miserable during treatment, how can you distinguish between a mere Herx reaction and an adverse reaction to the treatment itself?  If I try any treatment, and find that I feel worse for it instead of better, let that be a sign to me that I need to either reduce the intensity or discontinue it entirely.

The herbs in the core protocol do this.  These herbs have anti-bacterial properties, but their main function in Lyme disease is to get the causal mechanisms of the symptoms under control.  There's too much to write out in this post -- 15 pages on the #1 priority herb Japanese Knotweed.  Stephen Buhner doesn't believe that the borrelia spirochetes can be completely eliminated from the body, but that the symptoms can be controlled and the spirochete activity shut down to a minimum, or so I understand it.  His approach deals for symptoms as causal factors.


It was really hard for me to control amounts.  Because I was so sensitive.  I mean for example, I'd take an 1/8 of a teaspoon of fermented butter/ cod liver oil, and I would herx for a day.  Or, Manuke honey.  Or, insert certain fermented food.  Now I would make carrots and then eat a 1/4 of one, and work up slowly each day, but then by the time I started herxing, it was too late to control how painful it got.  It just didn't take much is my point.  One time, I put the last 1/3 of the tines of a fork into kefir and ate it, and it sent me into a bad herx for a day.  Just that little bit.  Kefir really caused strong reactions from like practically nothing.  It's just bizarre.  It seems really strange, but my doctors assistant has said the same would happen to her with certain things too.  So, I'm not alone, but it's just crazy.  She is battling lyme's also.
Posted by: TJ, Saturday, January 14, 2012, 5:20am; Reply: 717
Man, this stuff is pure evil.
Posted by: JJR, Saturday, January 14, 2012, 6:59am; Reply: 718
I hear these stories of people drinking gallons of kefir, or how passion princess took a bunch of coconut oil and got rid of a bunch of junk in two weeks and I'm like, NO WAY AM I DOING THAT!!!  I think my head would explode or something.  Hehehehe.  I'd be so inflamed that, well, I don't know what.  I've had a mind to try it and just get it all over with, but my doctor said that wouldn't be good either.  Those inflammation pathways are just blocked in me.  I've always wondered if some NAET wouldn't help that.  But I have no clue how you'd do the treatment for that.  As it's not really an allergy.  I don't think.  Or maybe I could use the food that causes the inflammation during the treatment and then see if I could handle it better.  My son really benefited from NAET when he was about 2 years old.  It helped his allergies a lot, helped calm his system down and eliminated a bunch of eczema.  But the chiro that was doing the treatments is no longer there, and I've yet to find another I want to try to go to.  It's something I may do someday though.  What about you Joe, have you ever tried to use NAET for the inflammation part?
Posted by: Ribbit, Tuesday, January 24, 2012, 6:50pm; Reply: 719
I bet NAET would help you not be so sensitive, JJ.  Maybe.

Joe, I've been wanting to tell you about something.  I've been reading "Healing Lyme" that TJ has talked about, and one section about skin problems really stuck out in my mind because it sounds like some of what you've dealt with.  If it's what they're describing, it's a pretty rare reaction, but it does happen.

It's my left eye that's weaker too, and that's the one that the migraines show up in.  That said, the last two times I went to the eye doctor, they changed my prescription to be not as strong...because my eye sight has improved.  Cool, huh?  Surprising.

I'm not doing very well, y'all.  I have good days and bad days, but I think the truth is, it's only a matter of time.  I have asked God for ten more years.  For my kids' sakes.  But I don't know if I'm going to make it or not.  I've convinced myself that my family would be better off without me because I'm such a drag.  All I'm doing is slowing them down.

I'm not sleeping very well.  I'm so cold at night and I can't get warm.  It took me 9 hours in bed last night, under lots of covers, for me to finally warm up.  I mean, most of the time I was asleep, but I still felt cold all the way down to my bones.  Twice I woke up sweating and chilled.  The heat was set on 68, so it's not like it was really all that cold.

I have quit alcohol.  I was using it to help calm my nervous system, but when we figured out how much we were spending (estimated) per month on red wine, we decided that was better used for supplements.  So I just use earplugs nearly all the time so my nervous system isn't on as high alert.

I was eating about 75% raw, or better, but it's not enough.  I still can't digest my food, even taking digestive enzymes and using magnesium oil to keep things moving.  I was needing more than 1 heaping tablespoon of CALM (magnesium) every night to even loosen my bowels a little by the next morning.  I've managed to fracture 3 bones in the last few months.  My digestive system, my central nervous system, my muscular system and my skeletal system are disintegrating.  I'm forgetting how to spell words and I have red squiggles everywhere in my typing and I have to go back and fix them.  I can't think well enough to figure out what's wrong with the word.  And I've always been a good speller.

Oh, well, that should cheer you up real good.

It's NutraMedix I'm going to get the Cowden Protocol from if we chose to go that route.  After finishing this Buhner book, I might do that instead.  We'll see.  They likely overlap a good bit.
Posted by: Chloe, Tuesday, January 24, 2012, 7:58pm; Reply: 720
Oh Ribbit...I feel so sad for you....the struggling you endure...making no progress with this horrible Lyme disease is heartbreaking to hear...

Just wanted to reach out and send you some {{{{{hugs}}}}}.  Wish I had some answers...Only person
I can think of you contacting would be Dr. Nash. I think she's had success with her Lyme patients.
Ever contacted her?  I know, she's far away..but just wondering if she'd have any suggestions for
you...
Posted by: TJ, Tuesday, January 24, 2012, 8:05pm; Reply: 721
Ribbit, you can't give in to that pessimism!  "It's only a matter of time" for all of us.  Your family would be lost without you.  Mothers and wives are the heart of the family.  You aren't holding them back; you are holding them together, like the hub of a wagon wheel.  You take the love you receive and multiply it and send it out again to the rest of your family.

I'm not saying that to put pressure on you, just to remind you how important you are just for being there.  If you don't believe me, show Rob what you wrote here and he will set you straight!  The Lord knows your suffering and will provide for what is needed in every way that you can't provide for on your own.  Remember that your children were his children first.  He gave them into your keeping, knowing that the experience they would have with you was an experience they (and you) needed.

I hope you'll also remember that Job was in pretty bad shape for a while, then he came back better than ever.  You and I may yet do the same.  Don't lose hope.
Posted by: JJR, Tuesday, January 24, 2012, 8:18pm; Reply: 722
Oh my God.  Hear her voice.  Lift her up, close.  
Posted by: ABJoe, Tuesday, January 24, 2012, 10:19pm; Reply: 723
Quoted from Ribbit
Joe, I've been wanting to tell you about something.  I've been reading "Healing Lyme" that TJ has talked about, and one section about skin problems really stuck out in my mind because it sounds like some of what you've dealt with.  If it's what they're describing, it's a pretty rare reaction, but it does happen.

Thanks, Ribbit,

I'll have to see if I can find the book.  I'm pretty sure that I've never had Lyme, but some of the nerve damage in my spine / cranium may be similar enough to be indicated in the Lyme symptoms...

As for not being able to regulate temperature well...  I go through that all of the time.  It is rare for me to not fluctuate from too warm (usually only briefly) to too cold and have a long time getting warm.  Sometimes I need to eat more, take some supplements or just rest / sleep.

I'm not able to do much either, so share your frustration.

There are so many times my WW has heard me say something very similar to your "I don't know how much longer...".  None of us knows what time we have left, but I will tell you from my experience, that healing (nerve damage especially) is harder than getting sick.  When I was getting more sick, the body blanked out so much pain that I can't even imagine how much it was.  Now that I'm healing, I seem to have so many more symptoms - in spite of all of the muscle testing showing improvements.  My suggestion is to keep following the diet, doing what the practitioner suggests, and praying that your suffering is beneficial to someone.

I will keep your family in our prayers.
Posted by: ABJoe, Wednesday, January 25, 2012, 12:10am; Reply: 724
Quoted from JJR
What about you Joe, have you ever tried to use NAET for the inflammation part?

Sorry, I missed this question earlier...

I still use the body balance technique that I've shared on this forum several times...  It balances the nerve energy in the body - as much as possible, usually relieving the pain to some degree...  

I can test to determine if the pain is due to an allergic reaction or just nerve pain.  If it is an allergic reaction, and I can determine what the allergen is, then I get major relief from the treatment.  If it is pain from nerve healing, then not as much relief.  Usually I can find some homeopathic that reduces some of the pain, but not to the degree that I can go do anything, just so I'm not pulling hair out, etc...  My body maintains the pain so I remain at a low activity state to allow it to use the energy to do more healing or to not push too much toxin out at once...

Yes, JJ, the Dr. is right.  Pushing too rapidly may just kill you.  It is far better to maintain a steady pace, even if it does seem like it is never going to end, than to end it because you rushed it too fast.  The body will do what it can, as long as we continue to provide what it needs as it goes along.  My practitioner and I just talked about this AGAIN at my last visit.  

Here I am starting my 6th year of major healing and most of the time I still feel like I really don't care whether I continue or not...  It is just that there are those around me who care deeply, and God hasn't chosen to take me yet.  I must still be doing good here.  I submit to his will and continue the fight.
Posted by: C_Sharp, Wednesday, January 25, 2012, 1:05am; Reply: 725
Quoted from Ribbit
I'm not doing very well


I am sorry to here this.

You have always been an inspiration to me!

And you continue to be!

I wish you did not have so many challenges.  But I know my wishing does not mean they go away.

One thought in parting. When we are strong most of us like to rely on our own strength. When we are weak, God is strong.
Posted by: TJ, Wednesday, January 25, 2012, 4:13am; Reply: 726
Quoted from C_Sharp
I am sorry to here this.

You have always been an inspiration to me!

And you continue to be!

I wish you did not have so many challenges.  But I know my wishing does not mean they go away.

One thought in parting. When we are strong most of us like to rely on our own strength. When we are weak, God is strong.
I wish there was a "Like" button for posts here.
Posted by: ruthiegirl, Wednesday, January 25, 2012, 8:08pm; Reply: 727
I still don't know what's wrong with me. I read some of the posts on this thread and I think "I can't have Lyme's Disease. I'm just not sick enough." But then I read about people with fibromyalgia who completely heal after a few months on BTD, and I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.
Posted by: Kim, Thursday, January 26, 2012, 11:04am; Reply: 728
Seeing a new Lyme doctor today.  She and all of her family have had Lyme and she lost a sister to late stage Lyme that went into AlS.  She is more aggressive and adds homeopathics from the beginning with the antibiotics.  I should be going on IV antibiotics in a few weeks, as soon as I can have a port put in.  I will be doing a double lumen port, so that I can do IV magnesium, or glutathione if needed.  I really need to do major detox and with all the malabsorption that is going on, IV is the best way to jump start that.  The melthylcolbalamin injections I do daily are really helping.

The Lyme is destroying my spine.  I am hoping that the IV antibiotics can stop that damage so that I am not going to be an old lady in a nursing home being spoon fed.  

The new doctor follows Weston Price, so I emailed her the print out of my swami to show her what I am eating.  I am hoping to educate her about individuality and the work of Dr.D'Adamo.  

She does not use a cookie cutter approach for treatment so she should be open to the Geno Type way of eating.  I have been on Swami almost a year now.  I should redo my fingerprints to see if anything has changed.  I still can't eat a lot of my beneficial foods, but now I can at least eat quinoa. Yea!!!

My eye is better but the cornea is still inflamed.  Friday I see the eye doctor and hope that my vision loss is restored.  Unfortunately, this is a common problem for people with Lyme and will most likely reoccur because I have such issues with my eyes.

If anyone wants to follow my treatment on caringbridge.org, just pm me for the website.  I am being extremely transparent in what I am going through and hope it will help others.

Posted by: Kim, Thursday, January 26, 2012, 11:07am; Reply: 729
Quoted from ruthiegirl
I still don't know what's wrong with me. I read some of the posts on this thread and I think "I can't have Lyme's Disease. I'm just not sick enough." But then I read about people with fibromyalgia who completely heal after a few months on BTD, and I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.



Ruthie,
My husband also has Lyme but with only a few symptoms.  It can't hurt to find out from a Lyme Literate physician if it is possible.  Not everyone is very sick with this until they have had it a very long time.  Might be worth checking out as this has to be a clinical diagnosis.
Posted by: ruthiegirl, Thursday, January 26, 2012, 6:50pm; Reply: 730
I'm just not sure how to go about paying for a LLMD. It's not like I can work, and SSI barely covers the bills. My ex can't pay child support until he finds a job, and he'd need to work for a year (good luck with him holding a job that long) to pay back the money he's borrowed from the kids and then to repay me for months of no child support so I can repay what I  borrowed from my Mom. There is NO money for out-of-pocket treatment, and my list of doctors is very limited with Medicaid.

The logical place to start is with my PCP when I go for my annual physical next month, if I can figure out which tests to ask her to run and/or which specialists to ask for a referral to. Would a rheumatologist check for Lyme's? Or a different specialist? I know I can get a rheumatologist refferral due to the fibromyalgia; I've been to him before. It's just that all he had to offer me was pain meds, and the side effects were worse than the symptoms.
Posted by: Ribbit, Thursday, January 26, 2012, 9:59pm; Reply: 731
All of your words mean more than I can express.  Thank you.
Posted by: Chloe, Thursday, January 26, 2012, 11:41pm; Reply: 732
Quoted from ruthiegirl
I'm just not sure how to go about paying for a LLMD. It's not like I can work, and SSI barely covers the bills. My ex can't pay child support until he finds a job, and he'd need to work for a year (good luck with him holding a job that long) to pay back the money he's borrowed from the kids and then to repay me for months of no child support so I can repay what I  borrowed from my Mom. There is NO money for out-of-pocket treatment, and my list of doctors is very limited with Medicaid.

The logical place to start is with my PCP when I go for my annual physical next month, if I can figure out which tests to ask her to run and/or which specialists to ask for a referral to. Would a rheumatologist check for Lyme's? Or a different specialist? I know I can get a rheumatologist refferral due to the fibromyalgia; I've been to him before. It's just that all he had to offer me was pain meds, and the side effects were worse than the symptoms.


A rheumatologist might or might not be literate in diagnosing or treating Lyme...but it's a place
to start if you can't find a LLMD who takes Medicaid.  Another thought is an infectious disease
specialist....You're going to have to see who your PCP can refer you to....and pick the best of
the best, even if you wind up having to see many different doctors. If I were you, I'd just go
through the system that you're financially able to use....because it doesn't seem like you have
any other options right now.  Perhaps someone can test you for basic Lyme plus some co-infections like Bartonella....erlichiosis...etc.

Posted by: TJ, Friday, January 27, 2012, 3:21am; Reply: 733
Quoted from ruthiegirl
I know that something else is going on with my body, and if diet alone was going to heal me, I'd probably be healed by now. I just don't know WHAT the problem is with my health or what to do about it.
Right on!  I've been on since August 2007 and have experienced clear benefits, but I'm still struggling beyond what makes sense if there was nothing else holding me back.  Pretty clearly, my gut hasn't healed yet even though I've been on a low- to no-gluten diet since 2008.
Posted by: JJR, Friday, January 27, 2012, 6:33am; Reply: 734
Yeah, I'm in with you all.  I have faithfully followed this diet, closer than anyone I know of, not counting the hardcore people on here, and it has not "healed" me.  BUT, I think it helps.  I think the foods recommended on my swami make a difference and a positive impact on my health.  So, I'm not discounting it.  I just don't think it's enough on it's own to overcome certain issues.  Some of us just need more help.  I've been attacking it from every angle I can.  Spiritual, emotional, physical, mental.  And eating is just one aspect of that.  Albeit a very integral, important aspect.  And now that I'm to a point where I'm eating to point of not starving myself, I can see it has made a big difference.  But there have been times that even that didn't seem possible, as my stomach just didn't want food.  

Anyways, what a blessing it is to have a place where we can come and bounce ideas off of each other and support each other.  Because the roads we've been given are not easy.  I'm not saying people that don't have our specific problems aren't struggling.  I'm just saying it's nice to be understood.  Because it is a significant health challenge to deal with.  Meaning lyme's.  But I'm not limiting it to just that.  I know there are others on here who might not have lymes that still have real, painful issues to overcome.  Grueling ones.  We are all stronger for it.   Well, in some way we're stronger.
Posted by: Ribbit, Saturday, January 28, 2012, 1:08am; Reply: 735
Quoted from TJ
Right on!  I've been on since August 2007 and have experienced clear benefits, but I'm still struggling beyond what makes sense if there was nothing else holding me back.  Pretty clearly, my gut hasn't healed yet even though I've been on a low- to no-gluten diet since 2008.


Yep.  Same here.
Posted by: Spring, Saturday, January 28, 2012, 4:31am; Reply: 736
Quoted from JJR
I have to say something about this.  My doctor is really into eating probiotic foods.  Like kefir, cultured veggies, etc.  It's supposed to be really good for you and help populate your gut.  But I'm so sensitive to the amounts of these.  If I just eat just a hair too much of that stuff, I get the herxing so bad, it's just no fun.  My body just really gets tore up.  I get so inflammed.  And I tell them that.  And I personally, have just quit eating stuff like that for now.  I know it has actually done good in the past though.  Despite the herxing.  I KNOW that it helped heal my gut from where it was to now.  And believe me, it's a whole lot better now.  But man, those herxing sessions really mess me up.  At times I would just feel like every cell in my body was on fire and it was really crazy.  

Now, the problem therein lies the fact that I know all of that work helped.  But it was very painful in the process.  How does one actually "Shut down those inflammation pathways".  That seems like more of a challenge than the actually putting the words down on paper.  Does the book talk about different methods of doing this TJ?

I assume that you take Boswellia for the inflammation? It really works wonders for me.
Posted by: Spring, Saturday, January 28, 2012, 4:45am; Reply: 737
Quoted from TJ
I wish there was a "Like" button for posts here.


Me too!!
Posted by: JJR, Sunday, January 29, 2012, 1:51am; Reply: 738
Nope, never had boswellia.  I've had quercitin.  And I've had wobenzym.  And every once in a blue moon when things are really bad, I'll take tylenol.
Posted by: Spring, Sunday, January 29, 2012, 5:15am; Reply: 739
Quoted from JJR
Nope, never had boswellia.  I've had quercitin.  And I've had wobenzym.  And every once in a blue moon when things are really bad, I'll take tylenol.

Take boswellia - not Tylenol. It isn't worth the time of day for inflammation!
Posted by: JJR, Sunday, January 29, 2012, 6:15am; Reply: 740
Well Spring, maybe I'll try boswellia, but I beg to differ on the latter.  Now, I'm not one to take drugs.  And when I say once in a blue moon, I mean once in a blue moon.  The last time I had it was in November.  I took it 3 times.  I was having a real bad spell, where my heart rate would get real high, I'm in bed, I'm slamming water all day, I'm inflamed and when I take the tylenol, it calms my body down.  My heart rate drops some, I don't hurt as much everywhere, and I feel like it escaped me from ending up in the ER.  And for what it's worth, I take 1/4 of a tablet of 320mg.  That's 80mg.  I logged it in a little notebook to know.  I don't take it very much, and it does work.  Now, is it the best thing for me in the long run?  Probably not.  And I can experiment with boswellia too.  I will ask my doctor about it.  But make no mistake, the little bit of tylenol works for me in the very accute times that I've experienced.  YMMV.   ;)  
Posted by: akolley, Monday, January 30, 2012, 9:15pm; Reply: 741
Positively fasinating perspective from a neurosurgeon.

http://jackkruse.com/hey-lyme-disease-meet-leptin/
Posted by: nowishow, Wednesday, February 1, 2012, 12:20am; Reply: 742
Quoted from JJR
Well Spring, maybe I'll try boswellia, but I beg to differ on the latter.  Now, I'm not one to take drugs.  And when I say once in a blue moon, I mean once in a blue moon.  The last time I had it was in November.  I took it 3 times.  I was having a real bad spell, where my heart rate would get real high, I'm in bed, I'm slamming water all day, I'm inflamed and when I take the tylenol, it calms my body down.  My heart rate drops some, I don't hurt as much everywhere, and I feel like it escaped me from ending up in the ER.  And for what it's worth, I take 1/4 of a tablet of 320mg.  That's 80mg.  I logged it in a little notebook to know.  I don't take it very much, and it does work.  Now, is it the best thing for me in the long run?  Probably not.  And I can experiment with boswellia too.  I will ask my doctor about it.  But make no mistake, the little bit of tylenol works for me in the very accute times that I've experienced.  YMMV.   ;)  


I know what you mean. I have intense pain in my heart that nothing else will touch except pain medication. When I need it, I really need it. Or I'll end up in ER where they'll really give me some meds.  :o
Posted by: Spring, Wednesday, February 1, 2012, 1:29am; Reply: 743
Quoted from akolley
Positively fasinating perspective from a neurosurgeon.
http://jackkruse.com/hey-lyme-disease-meet-leptin/

You are right about that! Fascinating! I have noticed for several years that some people will get really sick after losing a lot of weight. I had read that toxins were released from fat cells when people lost weight, but it didn't seem to affect some as bad as others. Which reminds me, this was nearly fifty years ago when I read that! How time flies!!
Posted by: Ribbit, Thursday, February 2, 2012, 1:52pm; Reply: 744
Here's an interesting chart outlining the different lyme symptoms.

http://www.lyme-symptoms.com/LymeCoinfectionChart.html
Posted by: Ribbit, Thursday, February 2, 2012, 1:52pm; Reply: 745
Lyme should be capitalized.  I can't spell anymore.
Posted by: Andrea AWsec, Thursday, February 2, 2012, 2:09pm; Reply: 746
Ruthie--- maybe you can go to UB explain your situation and see what they say. Since it is a clinic they may help.

Also consider what wellness means emotionally for you-- might it mean you would have to go to work and not collect your SS payment anymore?

Something else is keeping you from health and it may be time to think deeply about this.
Posted by: Spring, Thursday, February 2, 2012, 5:31pm; Reply: 747
Quoted from nowishow


I know what you mean. I have intense pain in my heart that nothing else will touch except pain medication. When I need it, I really need it. Or I'll end up in ER where they'll really give me some meds.  :o

I never meant to suggest that there is never a time to take pain medication. But this is from the Tylenol site itself about whether or not Tylenol helps inflammation:
Does Tylenol help inflammation (swelling)?
Acetaminophen, the active ingredient in Tylenol, has not been shown to reduce inflammation.

Inflammation was what I was posting about.
Posted by: JJR, Sunday, February 5, 2012, 3:47am; Reply: 748
I don't care what their website says.  It works for me.  And maybe it isn't "anti inflammatory" per se, but it sure calms my system down, helps reduce what seems like inflammation in my whole body, including my aching head, and takes something very accute and dulls it a bit.  I was recommended tylenol because of the other aspirins and what not don't clear my system as well.  

Again, I take it very seldom.  I haven't taken any since that last bout in November.  So, the little bit I take it, I'm not beating myself up over it at all.  
Posted by: Chloe, Sunday, February 5, 2012, 7:23pm; Reply: 749
If you take Tylenol, be very careful about drinking alcohol.

http://www.puristat.com/livercleansing/acetaminophen.aspx

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Acetominophen.pdf
Posted by: Spring, Monday, February 6, 2012, 4:32am; Reply: 750
Quoted from JJR
I don't care what their website says.    

Maybe you don't, but we can be glad that drug companies are honest about some things! Tylenol does more harm than good in my opinion, and there are other things that are beneficial in so many different ways. I don't want to mess up things by taking stuff that I know are not good for me. Just remember there are plenty more of us out here that could be having all sorts of inflammatory problems with the right/wrong regimen.
Posted by: Spring, Monday, February 6, 2012, 4:47am; Reply: 751
If I start burning up inside and out, I take lots of lysine and/or chlorophyll. My new pet one though may be chlorella. Doing great so far. Do you ever check your pH when you are having those "spells," JJR?
Posted by: TJ, Monday, February 6, 2012, 7:28am; Reply: 752
I used to take acetaminophen but I find more relief from ibuprophen.  Tylenol doesn't play nice with Lamictal, either.
Posted by: Kim, Monday, February 6, 2012, 7:06pm; Reply: 753
If you have Lyme disease, you shouldn't be drinking ANY alcohol at all.  
Posted by: Ribbit, Tuesday, February 7, 2012, 5:27pm; Reply: 754
Every so often, Kim, you've got to so something to calm down the nervous system.  That's what I was turning to.  I'm not drinking any anymore, but it served its purpose for a while.  

I've been on Ibuprophen for a week now.  I had another metal bridge removed and my jaw is so seized up from the injections that I'm having to take pain relievers 'round the clock.  I saw the chiropractor yesterday and he adjusted my jaw.  Hopefully I won't have to use as much Ibuprophen now.  Arnica cream isn't helping.
Posted by: Kim, Wednesday, February 8, 2012, 11:55am; Reply: 755
Quoted from Ribbit
Every so often, Kim, you've got to so something to calm down the nervous system.  That's what I was turning to.  I'm not drinking any anymore, but it served its purpose for a while.  

I've been on Ibuprophen for a week now.  I had another metal bridge removed and my jaw is so seized up from the injections that I'm having to take pain relievers 'round the clock.  I saw the chiropractor yesterday and he adjusted my jaw.  Hopefully I won't have to use as much Ibuprophen now.  Arnica cream isn't helping.


I use Ashwaganda and L-Theanine to calm things down.  Not perfect, but it helps alot.  However, when you are herxing badly, the rage does come back.  I do know that with those two supplements, it is not very often that I have a melt down. Thank God!!!! ;)
Posted by: Rev144, Thursday, February 9, 2012, 2:49am; Reply: 756
I am not sure if this has been posted or not.  I just recently listened to the the whole show.  
1 hour 35 min on Youtube.  Dr. Mercola Interviews Dr. Dietrich Klinghardt about Lyme

Dr. Dietrich says that 80% of his lyme patients have parasites.  And the very first thing he makes new patients do is stop using cell phones and get rid of all Wifi in the house.  Very interesting listen!

http://www.youtube.com/watch?v=RkXqxRfG0jk
Posted by: JJR, Thursday, February 9, 2012, 10:33pm; Reply: 757
I don't drink alchohol.  
Posted by: JJR, Thursday, February 9, 2012, 10:41pm; Reply: 758
Quoted from Spring

Maybe you don't, but we can be glad that drug companies are honest about some things! Tylenol does more harm than good in my opinion, and there are other things that are beneficial in so many different ways. I don't want to mess up things by taking stuff that I know are not good for me. Just remember there are plenty more of us out here that could be having all sorts of inflammatory problems with the right/wrong regimen.


There is nothing "regemin" about when I take it.  I've had all of 320mg give or take 80mg, in the last 6 months.  That is not a regimen, it's a hail mary.  I know there are other things that fight inflammation that are probably better.  I have other things that I do too that are natural, but they don't seem to be as affective in the real bad times.  Until you've lived through what one of my real bad times are, you might reserve some judgement.  Whatever the case is, it HAS worked to help me through those times.  I do need to possibly try some other things mentioned here.  As I have not tried all of the herbal remedies.  There's probably something that might work well for me that I haven't hit on yet.  I guess I should get some of this "Ashwaganda" before spring hits.  I think there were some other things mentioned here.  I'll have to go back and look at it.  But like I said, I don't think one or one and a half pills in six months is really going to set my health back so badly that I shouldn't do it.  

No, I don't check my PH when I'm feeling really lousy.  I checked it about a week ago though.  My urine was 6.25.  It's been higher before, but 6.25 is probably pretty typical.  I doesn't go below that much though.  Which I think is a good thing.  
Posted by: TJ, Tuesday, February 14, 2012, 8:03am; Reply: 759
Quoted from TJ
I just bought some nattokinase tonight.  One poster on Buhner's website had lots of good things to say about it, and suggested that it could help the herbal protocol to be even more effective.
I have observed that when I'm taking nattokinase I feel terrible.  Depression, confusion, fatigue, muscle weakness, etc., all worse than usual.  I've done a little research, and from what I've read, nattokinase breaks down collagen.  For us with Lyme disease, this is NOT a good thing.  The Lyme spirochete does enough of that already, breaking down our collagen and using the resulting soup as food.  That breakdown causes some of the pain and sensitivity we experience.  Collagen is what holds our bodies together.

Nattokinase also affects some other enzymes, metabolic processes, and tissues in ways that seem counterproductive in ways that aren't as serious as the collagen effect.  It seems like it's best used only by people with serious clotting or artery blockage problems.

Needless to say, I'm done with that stuff, and I warn you all to be very wary of it, too.
Posted by: Ribbit, Tuesday, February 14, 2012, 1:36pm; Reply: 760
Thanks for the warning, TJ.  I didn't even know what collagen was till my ND said I needed collagen support last time I was in to see her.  Then I read about it in Buhner's book.

I start the Cowden protocol today.  I'll keep y'all updated.  I had a pretty rotten day yesterday and nearly passed out because I was so dizzy. The wall kept me upright till I could get to bed and do the tapping that Debra O+ told me about (I think I've mentioned it here before) and three sessions of that brought me out of it. The children were making so much noise (at least in my mind) that I was shaking and crying and I told Rob I couldn't do this anymore and I just wanted all the kids to leave so I could sleep the rest of my life away.  Seems like he hears me better when I'm crying.  I don't cry much.  Maybe I should be more honest with how I'm feeling and allow myself to cry instead of stuffing it.  We are talking about asking someone to come help me during the day with the children.  I can't handle the arguing or the "schooling" that's supposed to be taking place.  We do some lessons, but I don't think it's enough.  And I hate using videos to keep the littler ones occupied while I'm working with the older ones, although it's becoming necessary.  A friend from church came once last week to spend the day and it was a huge help.  I can't think through the process of organizing the school room, and she was able to help with that.  It wasn't disorganized, it just wasn't working for the 9 y.o. and it needs to be restructured so it doesn't overwhelm her visually.  

I don't really get the rage.  I get very overwhelmed, like yesterday, but it's not rage I feel.  Maybe it's because I'm an introvert and am not likely to fly off the handle and say things.  If I get up the nerve to say something mean, it's because I really do mean it and it just took certain circumstances for me to admit it.  Or maybe I'm lying to myself and it really is rage.  Honesty with feelings wasn't something that was encouraged as a child, and I do a good job of hiding it all.  I guess that's why people are surprised now when I say anything about Stage 3 Lyme disease.  Because I don't look or act sick.  I push myself and force myself to appear normal because I've had to for so many years without a diagnosis.  I had to appear normal because I was often accused of being imaginative or just wanting attention.  Or "not trusting God" to help me with stress.  It's my default state.  Suck it up and smile, make people laugh to distract them from the problem, get off your rear end and do your job. I've been good at that. But I can't do my job if I have pin prickles in my vision and I'm too dizzy to stand up.

Enter Cowden protocol.  Like I said, I'll keep you updated.
Posted by: Ribbit, Tuesday, February 14, 2012, 3:09pm; Reply: 761
Oh, and I'm running fevers again every night.  Never much over 99, but it's indicative of something going on.
Posted by: ruthiegirl, Tuesday, February 14, 2012, 3:38pm; Reply: 762
I think fevers are a good thing- it means your body is actively fighting off bad germs. I went for YEARS without ever having a fever, even when I had an acute illness, and I really don't think that was  a good thing. I've had a  couple of fevers in the past few years, since starting BTD, and I think it's a sign of healing.
Posted by: ABJoe, Tuesday, February 14, 2012, 4:16pm; Reply: 763
Quoted from Ribbit
Maybe I should be more honest with how I'm feeling and allow myself to cry instead of stuffing it.

Honesty with feelings wasn't something that was encouraged as a child, and I do a good job of hiding it all.  I guess that's why people are surprised now when I say anything about Stage 3 Lyme disease.  Because I don't look or act sick.  I push myself and force myself to appear normal because I've had to for so many years without a diagnosis.  I had to appear normal because I was often accused of being imaginative or just wanting attention.  Or "not trusting God" to help me with stress.  It's my default state.  Suck it up and smile, make people laugh to distract them from the problem, get off your rear end and do your job. I've been good at that. But I can't do my job if I have pin prickles in my vision and I'm too dizzy to stand up.

My wife and I had this discussion about 5 or more years ago...  I would push until the body couldn't generate enough energy to maintain the muscles in a standing position and I would just wilt to a sitting position.  She said that this was just too hard on her and she NEEDED to have more honest assessments of how I felt.

I think the prickles and dizziness are signs of healing - probably cranial /brain healing.  My healing for the last 3 or 4 years has been cranial / brain / spinal - and I have had lots of dizziness, sinus, ear, TMJ, and pain in the spine or radiating from it...  I believe the nerves are more sensitive during healing than they were during the "damage" phase, or else the damage was either more shock, so masked; or more gradual so it didn't register what it was as much...  I realize it is really tough to get anything done when you feel like this, but I do believe this is indicative of healing - at least in my case I can tell it is.  Praying for your continued improvement.
Posted by: Spring, Tuesday, February 14, 2012, 4:41pm; Reply: 764
Just sent you a PM, Ribbit.
Posted by: Spring, Tuesday, February 14, 2012, 4:58pm; Reply: 765
Quoted from JJR


There is nothing "regemin" about when I take it.  I've had all of 320mg give or take 80mg, in the last 6 months.  That is not a regimen, it's a hail mary.  I know there are other things that fight inflammation that are probably better.  I have other things that I do too that are natural, but they don't seem to be as affective in the real bad times.  Until you've lived through what one of my real bad times are, you might reserve some judgement.  Whatever the case is, it HAS worked to help me through those times.  I do need to possibly try some other things mentioned here.  As I have not tried all of the herbal remedies.  There's probably something that might work well for me that I haven't hit on yet.  I guess I should get some of this "Ashwaganda" before spring hits.  I think there were some other things mentioned here.  I'll have to go back and look at it.  But like I said, I don't think one or one and a half pills in six months is really going to set my health back so badly that I shouldn't do it.  

No, I don't check my PH when I'm feeling really lousy.  I checked it about a week ago though.  My urine was 6.25.  It's been higher before, but 6.25 is probably pretty typical.  I doesn't go below that much though.  Which I think is a good thing.  


When I used the word "regimen" I was talking about what other people take to keep down inflammation. It would be interesting to know what your pH is during one of your episodes. Ashwaganda, that Kim mentioned, is something that I keep around all the time. A really good supplement.
Posted by: JJR, Sunday, February 19, 2012, 9:23pm; Reply: 766
Having that oxygen starvation symptom today.  It's annoying.  Headache too.  And  little lightheaded when I get up.  It's unseasonably warm too.

I'm really trying to not get all worried about the changing of the seasons.  And something tells me I'll fair a little better this year.  Which is good mentally.  But something also tells me I'll still have some troubles.  It'd be nice if it was more of a smooth transition.  Which it seems like it might be.  It's been so warm up here all winter.  And we've seen the sun so much more than we have the past 5 years or so.   No where near the amount of snow and storms. And then last spring was like the epitome of extremes, up and down in the weather and it really seemed like it messed with me.  
Posted by: Ribbit, Monday, February 20, 2012, 12:34am; Reply: 767
It's hard to see it as healing when it's all the symptoms of the sickness. :-/

Observation about the Cowden Protocol: neurologically I am worse.  Digestive-wise I am better.  

Also, my test results from the LLMD finally came (it was Thanksgiving when I had them done).  Disappointingly, everything was completely normal except my blood glucose was low, 54 (and that was after a normal breakfast with plenty of protein) and Alkaline Phos (phosphate???) was 28.  Supposed to be b/t 38 and 126.  Whatever that means.  Oh, and Antithyroid Peroxidase was 39 and it was supposed to be below 35.  I don't know what that means either.  All the Lyme tests and all the vitamin, mineral and hormone levels were normal.  Which I don't believe because I KNOW how much better I feel when I take supplements for certain vitamins and minerals.  It pretty much goes to show me that blood tests are still a joke.  Even the sensitive ones.  Just because a spirochete isn't visible....or just because an antibody isn't detectable doesn't mean I don't have it!  And just because potassium at normal levels are in my blood doesn't mean I'm using it correctly, hence the need for supplementation.
Posted by: JJR, Monday, February 20, 2012, 10:07pm; Reply: 768
Usually they do blood glucose levels after fasting.  When you eat, it will do something to all of it.  But strange how low it was despite eating.  How long before they drew blood from eating breakfast.  It could be you were getting hypo from not eating again.  

I hear you on the blood tests not showing much.  It was the same with me.  At mayo I had a few things not be completely right, like vitamin D.  But then when they did the neurological test, it was a big fail on all levels.  But nothing in my blood tests would show that.  So......  

I'm sure sticking with your ND will continue to help you.  I guess it's one of those things.....  Either our bodies will fight it off and get better like we should be believing, or it's going to kill us a slow death.  I haven't struggled as long as you Leanne, so, I don't have the same level of fear and frustrations and doubts.  But I know you've had some up times.  Last year during summer it seemed like you were doing so well.  Maybe those times will come again.  Were you doing well?  It seemed like you had energy to do gardening and all kinds of stuff.  I know for me I've been up and down.  Some points were real low and other points were like, dang, I feel half human again!!!!  I've been having that lately.  Sort of up and down.  But the ups aren't overly bad.  I need to work on my stamina and strength.  I have a long way to go, and maybe I'll never get to where I want to be.  But lately I can't help but think there's a chance to overcome.  I've heard people do.  Some fully.  Some, maybe not so.  That's in God's hands.  We can only do as much as we can and the rest is up to him.  I know you know that.  Or believe that.  I'm just talking.  We prayed for you as a family the other day and I will try to remember to continue to do that from time to time.  Thank you for being there for me so many times.  
Posted by: nowishow, Thursday, February 23, 2012, 6:54pm; Reply: 769
I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.

I bought a bottle of 500mg capsules and took one with dinner. I was of course expecting flushing of the skin and tingling, but I had a much more severe reaction.

1 - I had intense flushing, my skin looked fluorescent, and was pretty painful.

2 - The flushing/tingling was in my head, my upper chest, my arms, and my knees.

3 - My legs broke out in a rash and became swollen.

This lasted about three hours and then I started having a strong (Babesia) herx reaction, I think. This is the kind of reaction I get if I take too high a dose of Artemisinin or A-Bab.

1 - This includes, constriction of my heart (the feeling you get on your finger when a band aid is too tight, my heart feels like this) and severe pain

2 - Racing and strong pulse

3 - Weakness

4 - Intense inching (mostly my upper chest and back)

I had to take several pain pills to ease the pain in my heart and could not go to sleep until 5 AM.

Of course I didn't make it to work today. I just got up a little while ago and my heart is still hurting.

Question - Has anyone else had a response like this? I'm trying to decide if this was a herx response or niacin response. If it's a herx, I believe I should try a much lower dose as I might be killing my Babesia bugs.

Any thoughts? Of course I'll check with my doctor when I see him next month. But if someone has had a similar experience I'd love to hear about it.

Thanks,

Connie
Posted by: JJR, Thursday, February 23, 2012, 8:17pm; Reply: 770
I've never had niacin before I don't believe.  You gotta love these crazy reactions.  Ugh.  I'm sorry for your pain!!!  But yeah, if it was a good thing, it will probably help you in the long run.  Hopefully you'll get the inflammation under control here so you're not in pain.  Do you eat pineapple?  I'm a pineapple junkie and I think it helps with inflammation.
Posted by: ABJoe, Thursday, February 23, 2012, 9:05pm; Reply: 771
Quoted from nowishow
I bought a bottle of 500mg capsules and took one with dinner.

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...

I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...
Posted by: Spring, Thursday, February 23, 2012, 10:23pm; Reply: 772
Quoted from ABJoe

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...

I'm certainly with you on this Joe. I was just thinking yesterday that it horrifies me to see the astronomical amounts people will throw down of stuff they have never used, and I guess just hope for the best! I would think just a cursory search online would show that niacin is administered in a gradual dosage. Maybe not, but this has always been my understanding that it is widely known that this stuff has to be taken carefully and increased over a period of time. I'm beginning to think that supplements are a whole lot more powerful than people realize!
Posted by: nowishow, Thursday, February 23, 2012, 10:58pm; Reply: 773
Quoted from Spring

I'm certainly with you on this Joe. I was just thinking yesterday that it horrifies me to see the astronomical amounts people will throw down of stuff they have never used, and I guess just hope for the best! I would think just a cursory search online would show that niacin is administered in a gradual dosage. Maybe not, but this has always been my understanding that it is widely known that this stuff has to be taken carefully and increased over a period of time. I'm beginning to think that supplements are a whole lot more powerful than people realize!


I was told by my doctor to start out on 500 mg and work my way up to 2000mg. It's a theraputic dose not a regular supplemental dose.
Posted by: nowishow, Thursday, February 23, 2012, 11:00pm; Reply: 774
Quoted from JJR
I've never had niacin before I don't believe.  You gotta love these crazy reactions.  Ugh.  I'm sorry for your pain!!!  But yeah, if it was a good thing, it will probably help you in the long run.  Hopefully you'll get the inflammation under control here so you're not in pain.  Do you eat pineapple?  I'm a pineapple junkie and I think it helps with inflammation.


Yes I've tried a lot of different things to help with inflamation. My favorite are tumeric and enzymes, but they never seem to help with the inflamation of the heart or the brain. Thanks anyway.
Posted by: nowishow, Thursday, February 23, 2012, 11:02pm; Reply: 775
Quoted from ABJoe

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...

I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...


I also take a B complex vitamin as well. But because of the Lyme disease my doctor has put me on separate B vitamins as well. We (Lymies) seem to need so much more than the average person.
Posted by: Spring, Thursday, February 23, 2012, 11:41pm; Reply: 776
Quoted from nowishow


I was told by my doctor to start out on 500 mg and work my way up to 2000mg. It's a theraputic dose not a regular supplemental dose.


I would consider your doctor wrong about your dosage and for many other people as well for a beginning dosage. I never pay any attention to the recommendations of ordinary medical doctors about medication dosages unless it is an antibiotic. I have reacted to many things in the past that made life too miserable for a while not to be careful about what and how much of anything I put in my body. :) There is a reason why many doctors never want their patients to know the side effects of various drugs!
Posted by: ABJoe, Friday, February 24, 2012, 12:09am; Reply: 777
Quoted from nowishow
I also take a B complex vitamin as well. But because of the Lyme disease my doctor has put me on separate B vitamins as well. We (Lymies) seem to need so much more than the average person.

Sorry, I didn't realize this was a therapeutic dose recommended by the Dr.  It is possible he meant for it to kick the stuffing out of something and in order for it to do the job, it needed to feel like this...  

I would def. consult with the Dr. about the symptoms and see what the word is...
Posted by: Spring, Friday, February 24, 2012, 6:08am; Reply: 778
Quoted from nowishow
I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.
Connie

Your reaction was worse than any I ever heard of to niacin! I am pretty sure that a lot of people would have gone to the ER with such symptoms. I think people with Lyme's Disease have been through so much that they just sort of expect things to be worse than "normal" whatever it is. Is that right? Of course, I react to a lot of things too. I learned when I was pretty young that I had to be careful about what I put into my body or I was going to pay dearly for it. I just wish there was a regimen that could be depended on to fix Lyme's Disease that could be followed by everyone who has it so they could get well without all the guesswork and trial and error - plus all the suffering they go through caused by the "cure!" Reminds me of the Candida cure multiplied about a thousand times! :o
Posted by: JJR, Friday, February 24, 2012, 6:11am; Reply: 779
No, I hear you on that.  I think pineapple just takes the edge off sometimes.  But it doesn't really make it go away.  I've been trying to eat it about every 3 days or so and I can tell it helps keep me regular, along with I think helping me keep down some inflammation.  But yeah, for what you're going through right now, I'm sure you have to do something stronger.  I know it's frustrating.  I feel for you.  I have pretty much given myself a break on killing things, as I'm feeling better by just eating like crazy and not killing anything right now.  I don't think that will last forever, but my body really needed it I believe.  I'm not looking forward to going on the killing again.  But, all things have their time I guess.
Posted by: Victoria, Friday, February 24, 2012, 7:06am; Reply: 780
I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.   ??)
Posted by: Spring, Friday, February 24, 2012, 12:21pm; Reply: 781
Quoted from Victoria
I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.   ??)


I LOVE the way Hawthorne makes my heart feel!!! I take two caps of it every day. I didn't just jump right in with it though, as usual. I took one-fourth of a capsule to start with and worked up to the amount I am taking now over a period of weeks. My doctor, who is mostly into writing scripts, even likes the idea of me taking it. I have been taking it over two years now. Glad you mentioned this, Victoria.(smile) Maybe it will be a help to Lyme sufferers... I certainly recommend it.
Posted by: JJR, Friday, February 24, 2012, 11:03pm; Reply: 782
Man am I melting down today.  My world is kind of upside down and I'm wanting to put my fist through wall at times.  Some of it is with foods and we also got a brand new dishwasher and I'm trying to deal with the transition as best I can.  I'm sort of freaking about the smell of the newness of it.  And right now it's running for the second time empty.  After that, I don't know what else to do but just use it and hope for the best.  Hopefully it won't make me sick.  I've gotten to the point where I'm just so concerned about so many things that have to do with food, thinking it might mess with me.  I'm getting better, but it seems like there's always something either new to deal with and overcome, or whatever.  Like I was really hungry today and it seems like so many food things are not working out.  At breakfast all the kiwi I had were not ripe enough, and then at snack I was washing my blackberries and I found a possible moldy one in it.  And then I didn't want to eat any of them because they're all in the same bowl together getting rinsed.  I tried making some spaghetti squash at lunch and I was really looking forward to them.  But when I cut them open they were super duper hard.  And darker than usual.  I should've known because they're about half the size they normally are.  And after an hour in the oven on 375 it still seemed like it needed to cook longer and I had had it.  I made something else but it wasn't as satisfying.  I let those cook longer and put them away for later, but it was really frustrating.  And it seems like most days when one thing goes wrong, it becomes multiple things.  You know?
Posted by: Spring, Friday, February 24, 2012, 11:27pm; Reply: 783
Yes, I can relate to "everything" going wrong. When something gets between us and food when we are really needing to eat, things can go downhill in a hurry!! I can grab a piece of banana and a little peanut butter to tide me over such hurtles now. But not before SWAMI. No way! A banana hadn't been in this house in YEARS! I'm making up for lost time! LOL Maybe tomorrow will turn out better for you, JJR. I certainly hope so. I have a quirk about getting something new sometimes. Maybe you have the same deal.
Posted by: Kim, Saturday, February 25, 2012, 1:18am; Reply: 784
Quoted from nowishow
I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.

I bought a bottle of 500mg capsules and took one with dinner. I was of course expecting flushing of the skin and tingling, but I had a much more severe reaction.

1 - I had intense flushing, my skin looked fluorescent, and was pretty painful.

2 - The flushing/tingling was in my head, my upper chest, my arms, and my knees.

3 - My legs broke out in a rash and became swollen.

This lasted about three hours and then I started having a strong (Babesia) herx reaction, I think. This is the kind of reaction I get if I take too high a dose of Artemisinin or A-Bab.

1 - This includes, constriction of my heart (the feeling you get on your finger when a band aid is too tight, my heart feels like this) and severe pain

2 - Racing and strong pulse

3 - Weakness

4 - Intense inching (mostly my upper chest and back)

I had to take several pain pills to ease the pain in my heart and could not go to sleep until 5 AM.

Of course I didn't make it to work today. I just got up a little while ago and my heart is still hurting.

Question - Has anyone else had a response like this? I'm trying to decide if this was a herx response or niacin response. If it's a herx, I believe I should try a much lower dose as I might be killing my Babesia bugs.

Any thoughts? Of course I'll check with my doctor when I see him next month. But if someone has had a similar experience I'd love to hear about it.

Thanks,

Connie


Always start at 100 mg twice a day and build up to the 500 mg. You should always start out slow with the real niacin.  My DH takes it at 500 mg twice a day but he took a couple of weeks to build up to that.  Glad you are alright.
Posted by: Kim, Saturday, February 25, 2012, 1:22am; Reply: 785
I have been off of the forum for a while.  I try to post on my caring bridge site for those who want to follow someone who is doing antibiotics AND homeopathics.

I had a medi port put in a week ago.  That went okay but the first time the port was accessed the nurse didn't get the Huber needle in correctly and after hooking up to a myers cocktail bag, the fluid went into the surrounding tissues.  I ended up in the ER.

I am on IV Rocephin, Mepron for Babesia (then later we will treat the Bartonella) and azithromycin.  This was the first week I had an appetite and less muscle pain.

I am also using Young Living Oils and they are really helping.
Posted by: JJR, Saturday, February 25, 2012, 6:25am; Reply: 786
Quoted from Spring
Yes, I can relate to "everything" going wrong. When something gets between us and food when we are really needing to eat, things can go downhill in a hurry!! I can grab a piece of banana and a little peanut butter to tide me over such hurtles now. But not before SWAMI. No way! A banana hadn't been in this house in YEARS! I'm making up for lost time! LOL Maybe tomorrow will turn out better for you, JJR. I certainly hope so. I have a quirk about getting something new sometimes. Maybe you have the same deal.


Yeah, it's the whole upsetting of the routine thing.  The worry of if my new dishwasher is going to leach new plasticy stuff on my dishes and make me feel ill for a bit.  And the fact that because of that, I'm handwashing lots of dishes and still not able to keep up with all the dishes there are.  I ran the thing twice and now I think I'm just going to have to trust it.  I may rewash  by hand the ones I use for a little while, just to make sure.  But I do that now.  The old dishwasher we had was so old, it didn't smell good either.  So..... It was a darned if you do, darned if you don't type of thing.  But when the balance in the kitchen gets upset, my world sort of gets tough real quick.  Thank you for your comforting thoughts!!!  It's always nice to hear someone else has similar experiences.

Kim, I'm glad to hear there is some progress.  What oils are you using?  I was a "user", hehehehehehe, for over 2 years.  I know that stuff helped me.  I'd use them in the morning and at night and I always felt calmer when doing so.  And I'm pretty sure some of the oils helped kill bad stuff too.  Like thyme and oregano.  And then there is peace and calming for soothing.  Lavender is a nice soothing one.  Weird thing is, right around late summer, I just couldn't do them any more.  Like I needed a break from them too.  I would use a little something and I'd feel really strange.  I do sniff them from time to time and that's enough to help.  I have a whole bunch of them too and they're just sitting there.  I'll have to call the company and ask if the ever go bad.  But I really think they made a very positive impact on my health challenges.  
Posted by: ABJoe, Saturday, February 25, 2012, 6:06pm; Reply: 787
Quoted from JJR
The worry of if my new dishwasher is going to leach new plasticy stuff on my dishes and make me feel ill for a bit.

There is NO way that there will be enough residue on any dish to cause you a problem if the initial smell didn't do you in...  Eat beneficials and let the dishwasher do its job...  Sounds great to me...  We don't have room in our kitchen for a dishwasher, so someone has to hand-wash everything...
Posted by: JJR, Saturday, February 25, 2012, 6:27pm; Reply: 788
Thank you Joe.  That helps me.  I've got it loaded and will run it after lunch today.  The initial smell is pretty stiff.  And it's kind of stinky after running it, since it is hot.  The first load I do I'm doing all glass and metal and not anything plastic, except for a few pyrex container lids.  I figure gunk can't stick to glass and metal too much.  I'm a little concerned about the plastic tupperware.  Of coures most of that is getting old and I should throw it away anyways.  We're trying to transition to mostly glass.  But I still have a few small ones that are plastic.  And then there's the cutting boards that are plastic.  Anyways, I'm trying not to be stupid and anal about it, but it's not easy for me right now.  But I have to just let it go.  

I'm sorry you don't have a dishwasher.  I don't know how I'd manage without one.  We use tons of dishes.  It probably wouldn't be so bad if I just kept a place setting for each person and just wash them up every time.  But then there is the cooking utensils.  The kids seem to want to eat all the time, and me too.  And then there's the different blood types so I sometimes cook things for some that some of us others shouldn't eat so then it creates more mess.  And my wife is a little bit picky too and likes things cooked only certain ways.  It just gets to be a lot of dishes sometimes.
Posted by: Spring, Saturday, February 25, 2012, 6:55pm; Reply: 789
Quoted Text
There is NO way that there will be enough residue on any dish to cause you a problem if the initial smell didn't do you in...


Now, that is a good thought, Joe. One sniff would have probably been enough to knock a person over if they were going to react to the extreme. That is the way I am, anyway. With those things sitting around in stores shut up and not being used, the fumes are bound to build up in there. The more it is used the better I think, too. I have more of a horror of dishwashing detergent than I do anything else. So I run my dishes through again to wash any of that stuff off.
Posted by: Kim, Sunday, February 26, 2012, 8:45am; Reply: 790
Quoted from JJR


Kim, I'm glad to hear there is some progress.  What oils are you using?  I was a "user", hehehehehehe, for over 2 years.  I know that stuff helped me.  I'd use them in the morning and at night and I always felt calmer when doing so.  And I'm pretty sure some of the oils helped kill bad stuff too.  Like thyme and oregano.  And then there is peace and calming for soothing.  Lavender is a nice soothing one.  Weird thing is, right around late summer, I just couldn't do them any more.  Like I needed a break from them too.  I would use a little something and I'd feel really strange.  I do sniff them from time to time and that's enough to help.  I have a whole bunch of them too and they're just sitting there.  I'll have to call the company and ask if the ever go bad.  But I really think they made a very positive impact on my health challenges.  


The Lavender is helping me sleep.  I am just starting to use a diffuser because that really helps too.  I use Panaway and Valor on my spine at night an no more pain there that wakes me up.  If I can't sleep, it is just my central nervous system still all messed up.  

I use the Peace and calm on the bottoms of my feet.  Panic attacks are lots better.  I have been looking at these oils for a year thinking they were bunk, and now I feel like an idiot because I could have had some relief sooner.

They are using these oils in some hospitals now like Johns Hopkins.  I am still experimenting.  There is a doctor who has put out a list of oils to use for Lyme.  I am going to gather those oils and start using them.  As far as I know only the citrus oils have any kind of shelf life and I don't know how long that is.  Sniffing from the bottle is good too.  What ever works.

In one week of the IV Rocephin though, muscle pain has gotten better.  Now I know there are still going to be some nasty herx days, but I am grateful to not be in constant pain.  That is a miracle for me.  I have to give the oils a lot of credit for that.  I had always planned to combine the antibiotics with the homeopathics and it is helping using them together.  

I still have some bad tremor days.  Those seem to happen when I have to use Flagyl.  I do two weeks on and two weeks off.  That medication breaks up the Lyme cysts and those two weeks are rough.  But if you don't break up the spriochete cysts, nothing either antibiotics or homeopathics can get rid of the bacteria.

The Mepron causes more headaches, but the Peppermint oil mixed with Lavender gets rid of all or most of it so that it is bearable.  Three more months of Mepron and then I am not sure if my Lyme practitioner will continue with that or work on the Bartonella.  

My church is there to support me and my faith has kept me strong most of the time.  I still have a lot of work on eating better.  Lyme has hit me hard in the gut.  I can eat Kale now.  That is a biggie.  I can make soup ahead and toss that in and there are a lot of nutrients in that.  Slowly making progress. Thank God!! :)

Posted by: Spring, Monday, February 27, 2012, 4:57am; Reply: 791
Quoted Text
Those seem to happen when I have to use Flagyl.

You are so brave. About twenty-five years ago, I tried to take Flagyl for five days, I believe the prescription was for, but on the fourth day I got so sick I could hardly stand up. There was no way I could take that last pill. I wish there was better, more humane help for this dreadful problem.
Posted by: JJR, Monday, February 27, 2012, 5:40am; Reply: 792
Quoted from Kim


The Lavender is helping me sleep.  I am just starting to use a diffuser because that really helps too.  I use Panaway and Valor on my spine at night an no more pain there that wakes me up.  If I can't sleep, it is just my central nervous system still all messed up.  

I use the Peace and calm on the bottoms of my feet.  Panic attacks are lots better.  I have been looking at these oils for a year thinking they were bunk, and now I feel like an idiot because I could have had some relief sooner.

They are using these oils in some hospitals now like Johns Hopkins.  I am still experimenting.  There is a doctor who has put out a list of oils to use for Lyme.  I am going to gather those oils and start using them.  As far as I know only the citrus oils have any kind of shelf life and I don't know how long that is.  Sniffing from the bottle is good too.  What ever works.

In one week of the IV Rocephin though, muscle pain has gotten better.  Now I know there are still going to be some nasty herx days, but I am grateful to not be in constant pain.  That is a miracle for me.  I have to give the oils a lot of credit for that.  I had always planned to combine the antibiotics with the homeopathics and it is helping using them together.  

I still have some bad tremor days.  Those seem to happen when I have to use Flagyl.  I do two weeks on and two weeks off.  That medication breaks up the Lyme cysts and those two weeks are rough.  But if you don't break up the spriochete cysts, nothing either antibiotics or homeopathics can get rid of the bacteria.

The Mepron causes more headaches, but the Peppermint oil mixed with Lavender gets rid of all or most of it so that it is bearable.  Three more months of Mepron and then I am not sure if my Lyme practitioner will continue with that or work on the Bartonella.  

My church is there to support me and my faith has kept me strong most of the time.  I still have a lot of work on eating better.  Lyme has hit me hard in the gut.  I can eat Kale now.  That is a biggie.  I can make soup ahead and toss that in and there are a lot of nutrients in that.  Slowly making progress. Thank God!! :)



I'm interested to see that list.  I have over 20 types that I've collected over the last couple of years.  But I don't have them all.  I have panaway too.  That one is supposed to be good for inflammation.  I have valor too.  Peppermint was always a good one for me.  I used to put that on my liver and kidneys a lot.  My doctors assistant told me there was something really special about peppermint.  She said if you had a bacteria in a petri dish, and you introduced something to kill it, like say, cinnamon.  She said you'd see the cinnamon kill the bacteria and the dead bacteria would be there.  Just like when you kill yeast, there is die off your body has to filter out.  Well she says peppermint is like a miracle killer.  She said, going back to the petri dish, if you put peppermint in with the bacteria, the peppermint will just like eat up the bacteria, and there is no dead portion.  It just makes it like disappear.  I don't know if that's true or not, but I was like DANG, that's cool.

Wintergreen helps with inflammation.  And one oil that I can't explain why but it makes me feel good, is Spikenard.  It has this really weird smell that is unlike anything.  It's like burnt something.  But it just makes me go,  aaaaaaah.  I guess it's very anti bacterial and anti microbial.  And they used it in Jesus time a lot.  I think it was the oil Mary broke and rubbed on his head.  Or wait, was it his feet?  Oh shoot, I should know this.  
Posted by: Goldie, Monday, February 27, 2012, 3:01pm; Reply: 793
I wish to make a combo list of all links here,, (will share it later)  

as long as I am going to do this .. are there other suggestions I might follow that would serve a bigger purpose?

I seem to be in need of a project..haha  
Posted by: nowishow, Monday, February 27, 2012, 6:21pm; Reply: 794
Quoted from Victoria
I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.   ??)


Yes, Hawthorne is great! It's helped keep me out of ER. I've been talking it for 1 1/2 years now. I also added CoQ10 and extra B1 (in the form of Thiamine Tetrahydrofurfuryl Disulfide) which is the biologically-active form. These seem to help alot as well. Because I have bugs and toxins in my heart, I always have a heart reaction when the bugs are killed and toxics and released.  :( It can't be helped, I guess. I just try to keep my reaction as low as I can.
Posted by: paul clucas, Tuesday, February 28, 2012, 7:46pm; Reply: 795
Lyme has been with us for a long time:

http://www.bbc.co.uk/news/science-environment-17191398

Quoted Text
Oetzi the Iceman's nuclear genome gives new insights

Oetzi's full genome has now been reported in Nature Communications.

It reveals that he had brown eyes, "O" blood type, was lactose intolerant, and was predisposed to heart disease.

They also show him to be the first documented case of infection by a Lyme disease bacterium.
Another peice of the puzzle.....
Posted by: Ribbit, Friday, March 2, 2012, 10:01pm; Reply: 796
Peppermint tea always made me feel like I was going to throw up.  I wonder if it was killing something off.  Hm.  Maybe I need it.
Posted by: Victoria, Friday, March 2, 2012, 10:23pm; Reply: 797
Peppermint tea gives me heartburn.
Posted by: Chloe, Friday, March 2, 2012, 11:07pm; Reply: 798
Quoted from Victoria
Peppermint tea gives me heartburn.


Me too!

Posted by: Kim, Saturday, March 3, 2012, 8:41pm; Reply: 799
Some people put the peppermint on their tummy and get the same benefits or put it into an empty capsule and swallow it.  Might not have the same affect.  My DH swiped my peppermint and uses on his forehead to help him stay alert.  
Posted by: JJR, Tuesday, March 6, 2012, 5:43pm; Reply: 800
Having a bad morning.  One of those when too many things go wrong while trying to eat and I stress out.  It's not an excuse, because I'm dealing with germaphobic issues.  But I sometimes feel like around the full moon things get more "hairy" in my psyche.  And things just seem to tend to go wrong easier.  At least in my head they do.
Posted by: ruthiegirl, Tuesday, March 6, 2012, 5:45pm; Reply: 801
I find the full moon a stressful time too, but that may be because that's currently about the time my period is due. It's really hard to separate the lunar cycles from my own- something you clearly don't have to worry about. ;)
Posted by: Victoria, Wednesday, March 7, 2012, 12:46am; Reply: 802
Quoted from Kim
Some people put the peppermint on their tummy and get the same benefits


This is a great idea.  Thanks!
Posted by: JJR, Wednesday, March 7, 2012, 1:06am; Reply: 803
Yeah, Ruthie, I don't have to worry about that.  hehehehe

I used to rub peppermint oil on my liver and kidneys.  
Posted by: TJ, Wednesday, March 7, 2012, 4:00pm; Reply: 804
I'm off to see the doctor today!  My church is going to pay for my care.  The guy I'm seeing is not an LLMD, but he does practice integrative medicine.  I believe he'll be more open-minded toward the possibility of Lyme disease than your typical family practice doctors.  It is good to know that someone else will finally be involved in overcoming this challenge. :)
Posted by: Spring, Wednesday, March 7, 2012, 4:31pm; Reply: 805
Quoted from TJ
I'm off to see the doctor today!  My church is going to pay for my care.  The guy I'm seeing is not an LLMD, but he does practice integrative medicine.  I believe he'll be more open-minded toward the possibility of Lyme disease than your typical family practice doctors.  It is good to know that someone else will finally be involved in overcoming this challenge. :)


I am so glad you have others helping you now, TJ! I hope for the very best outcome!!(hugegrin)
Posted by: Chloe, Wednesday, March 7, 2012, 4:51pm; Reply: 806
Quoted from Spring


I am so glad you have others helping you now, TJ! I hope for the very best outcome!!(hugegrin)


I ditto that!  Good luck TJ. :)

Posted by: TJ, Thursday, March 8, 2012, 5:36am; Reply: 807
The doctor believes my biggest problem is SIBO, and because of that my digestive system is damaged and I can't get the nutrition I need.  I think this is a good place to start.  I mentioned Lyme disease, and he was a bit hesitant about that, basically saying that the treatment for Lyme is antibiotics, and that's the last thing I need with my gut like it is.  He has advised me to take some huge doses of probiotics, along with Myer's cocktail injections, a powdered fiber and protein supplement called Constant Health, and several others.  He has ordered testing for Lyme disease, Celiac disease, vitamin D, ferritin, hemoglobin, and homocysteine.  I gather that, if I have Lyme disease, he wants to treat it by getting my gut and immune system healthy.

All that he said makes sense to me except for his dietary recommendations, of course.  He wants me on a Mediterranean diet, starting with an elimination stage and reintroducing foods every week.  I will stick with my SWAMI, thank you, but I'm game for the rest of it.  His name is Dr. Hugo Rodier, and he's written a few books and designed some of his own supplements.  On the whole, I feel like I'm in good hands.  I have hope again for getting well.

My treatment protocol isn't focused on Lyme disease, so I probably won't be posting updates on this thread.
Posted by: Victoria, Thursday, March 8, 2012, 5:54am; Reply: 808
You can't go wrong by working to heal your gut.  And a major percentage of our immune strength originates there anyway.  I don't remember what you're currently taking that might benefit your intestines, but take a look at Dr. D's Intestinal Health Protocol:

BLOOD GROUP B

    Deflect B (ABO-specific lectin-blocking formula): 2 capsules, 2-3 times daily between meals
    Polyflora B (ABO-specific Probiotic): 2 capsules, twice daily
    Intrinsa: 2 capsules, twice daily
    Magnesium: 350 mg, 1 capsule, twice daily
    Rice-derived tocotrienols: 50 mg, 1-2 capsules daily
    Elecampane (Inula helenium): 500 mg, 1 capsule, 2-3 times daily with meals
    Chlorophyll Liquid: 1 teaspoon, twice daily

GENERAL RECOMMENDATIONS USABLE BY ALL GROUPS

    ARA6 (Larch arabinogalactan): 1 tablespoon, 1-2 times daily in juice or water
    Ghee (clarified butter): 1 teaspoon, twice daily
Posted by: JJR, Thursday, March 8, 2012, 6:10am; Reply: 809
Yeah, heal the gut.  I'm pretty sure that the work I've done over the last few years of healing my gut has helped quite a bit.  I think I'd be in a world of hurt if I didn't do those things.  Like take probiotics, cultured foods, homeopaths to kill h.pylori and crypto.  Manuke honey. Anti candida shakes with psyllium powder and capryl oil.  ON and on.  And I could tell a lot of those things worked and helped.  

When your body is ready to deal with any underlying disease like Lymes, if you have it, it will all come together.  But like Vicky said, no problem working on the gut.  

I'm not sure the mediteranean diet would be good for a B.  It's chicken and fish and yoghurt and veggies.  There's a lot of good things about it, but red meat is only a once in a while type thing.  I think you're better off getting red meat regularly.  Especially some lamb if you can swing it.

It's great news that you are getting help.  Great news.  As far as I'm concerned, you could post in here.  But I suppose starting another thread might be appropriate also.  But it sounds like he wants to test you for lymes.  So it relates.  Did he say where he's sending the test.  Because from what I hear, that one in palo alto CA is the only one to send it to that knows what they're doing.  Igenex is it?  I think it's somewhere in this thread.    
Posted by: nowishow, Thursday, March 8, 2012, 7:49pm; Reply: 810
Speaking of testing. Here's something from a lyme forum I belong to (Lyme Aid Buhner).

Quoted Text
i just took the NEW culture test developed by Dr. Burrascano +  
Advanced Labs (Philadelphia).
it's touted to become the new "gold" standard in testing for lyme,  
because, if i get this right, from your own blood it grows the  
spirochete, and then they test antibodies to that.

i had not tested positive for lyme since early '09 (tested for it 3x)  
altho a number of bands were positive.
with this, i test negative for short term exposure (meaning i've not  
been bitten recently), and positive for long-term exposure (meaning i  
have chronic lyme disease).

it costs $595 or so, and can take awhile to get results as the  
spirochete is a slow-growing bacteria (i took my test 12-6-11 + just  
got the results back last week!).
you get your blood drawn at your LLMD + they send it off to Advanced  
Labs.


here is Burrascano's press release last September:
http://www.researchednutritionals.com/information.cfm?ID=255

Advanced Lab's website:
http://www.advanced-lab.com/
Posted by: nowishow, Thursday, March 8, 2012, 7:51pm; Reply: 811
Here's more info

Quoted Text
http://lymedisease.org/news/lymepolicywonk/811.html


LYMEPOLICYWONK: New Lyme Disease Culture Test Could be Game Changer

Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for
Lyme disease. It is commercially available in all states except California, New
York and Florida, which have individual state licensing requirements that must
be met before the test can be offered. Direct detection of bacteria through
culture is considered the �gold standard� for diagnosis, but this method has not
been commercially available for Lyme disease using previous culture methods. The
new test is based on research conducted by Dr. Eva Sapi and colleagues, which
CALDA helped fund. Results of the research published earlier this year
demonstrated the improved culture method for Borrelia burgdorferi, the agent of
Lyme disease, and the technique has recently been corroborated using human blood
samples. Larger confirmatory studies of the test are now being pursued. Dr.
Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with
ALSI to help make the test commercially available. A sensitive high-quality
culture test would not only permit patients to be accurately diagnosed, but
would lay to rest much of the controversy surrounding Lyme disease.

One of the primary causes of the Lyme controversy is the lack of a �gold
standard� diagnostic test to determine who has the disease, who has persisting
disease, and who has cleared the infection.  Currently available Lyme tests rely
on indirect methods of detecting the disease using antibodies produced by the
patient. The sensitivity of most of these commercially available antibody tests
has been so low that they may miss one out of every two people with the disease.

The new test identifies Borrelia burgdorferi using histology and growth
characteristics in conjunction with fluorescent immunostaining.  Positive
results can be further confirmed using standard molecular biology methods (PCR)
based on DNA sequencing.

The testing is now available for use in all states except California, New York,
and Florida, which require a higher level of lab certification for testing.
Physicians can obtain lab test kits from ALSI in Pennsylvania.  Contact
information about the lab can be obtained from their website.

Those seeking further information may wish to read:

The Advanced Laboratory Services press release.

Dr. Burrascano�s informal release regarding the testing.

My blog post announcing the in vitro culture results.

The research study is also available open access (free).  Sapi E, Kaur N,
Anyanwu S, Luecke DF, Datar A, Patel S, et al.Evaluation of in-vitro antibiotic
susceptibility of different morphological forms of Borrelia burgdorferi. Infect
Drug Resist 2011;4:97-113.
Posted by: TJ, Friday, March 9, 2012, 12:23am; Reply: 812
Quoted from JJR
Did he say where he's sending the test.  Because from what I hear, that one in palo alto CA is the only one to send it to that knows what they're doing.  Igenex is it?  I think it's somewhere in this thread.
There is a Quest diagnostics lab in-house at his practice.  I seriously doubt that they will show me positive for Lyme since these are only the standard Lyme titers.  Still, this is progress.  I'll let you all know when I have some results from these tests.

In the meantime, do any of you know if activated charcoal could counteract the negative reaction I get when taking probiotics?  Any other solutions?
Posted by: Drea, Friday, March 9, 2012, 12:25am; Reply: 813
Quoted from TJ

My treatment protocol isn't focused on Lyme disease, so I probably won't be posting updates on this thread.


I hope you'll consider posting on a new thread because we can all learn from your journey.
Posted by: TJ, Friday, March 9, 2012, 1:51am; Reply: 814
I sure will!  I want to document the experience, share it with y'all, and get feedback.
Posted by: Spring, Friday, March 9, 2012, 4:15am; Reply: 815
Quoted from TJ
I sure will!  I want to document the experience, share it with y'all, and get feedback.


Great!
Posted by: TJ, Monday, March 12, 2012, 3:23am; Reply: 816
Here's my new thread on the topic: http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1331522511/
Posted by: nowishow, Friday, March 16, 2012, 11:21pm; Reply: 817
Here are a few links that you might find interesting. They were written by my Doctor.

About Babesia
http://www.wayneanderson.com/pages/diseases/babesia

About Bartonella
http://www.wayneanderson.com/pages/diseases/bartonella

Chronic Mold Infections and Lyme Disease
http://www.wayneanderson.com/pages/diseases/afng
Posted by: JJR, Sunday, March 18, 2012, 5:07am; Reply: 818
Oh man.  I was just coming on here to whine about my last two days and your posts might have given me some insight as to why.  

I've been so stressed about stupid things the last couple of days.  OCD big time.  I have a hard time letting things go.  And then I can't remember if I washed my hands 5 minutes prior.  I'll start preparing food and be like, DID I WASH MY HANDS????  I did it tonight while making my oatmeal. I had my son watch me because the first time I rewashed everything because I couldn't remember.  So then I had him watch and I'll be darned if I didn't forget that I washed my hands again.  But since he was watching, he could tell me I did. I was like, What the heck!!!  It was like my memory just blanks it out.  And it's almost like it does it on purpose to stress me out about making food!!!!

But, it could be Babesia.  I don't know. I got new glasses this week and it's been taking a while to get used to the prescription.  That was really playing with my head.  It just seemed like so many things have gone wrong in the last couple days.  I bawled I get so overwhelmed with not being able to remember and let things go about it and just relax.  I had a meltdown today for sure.  And OH, the weather got all of a sudden a lot warmer.  It went from like 45 one day to 80 the next.  Then dipped down to 57 and now 75 today.  Roller coaster.  

I have been getting a pvc here and there, maybe a tiny bit more than I'd been used to.  My wife is sick with a terrible cold and possible fever.  I don't have any of those symptoms, but I'm sure fighting the crazy in the head syndrome.  It's very disheartening.  

I guess things could be worse though.  Any prayers are welcomed.  It's not been easy.  Anyone else having a bad time that I can pray for you?
Posted by: Goldie, Tuesday, March 20, 2012, 12:03pm; Reply: 819
Richard Ostfeld, Ph.D. Disease Ecologist with the Cary Institute of Ecosystem Studie... wrote a fab book on the life cycle of ticks.. 3 years .... and this year will be Bad..
Posted by: ruthiegirl, Tuesday, March 20, 2012, 12:58pm; Reply: 820
Quoted from JJR
I guess things could be worse though.  Any prayers are welcomed.  It's not been easy.  Anyone else having a bad time that I can pray for you?


I could use prayers too. I've just been having a rough time of things lately. I'm tired and moving slowly and my brain is all foggy. I don't really know what the underlying problem is; I'm just sick and tired of being sick and tired.
Posted by: Spring, Tuesday, March 20, 2012, 4:29pm; Reply: 821
Quoted from ruthiegirl


I could use prayers too. I've just been having a rough time of things lately. I'm tired and moving slowly and my brain is all foggy. I don't really know what the underlying problem is; I'm just sick and tired of being sick and tired.


Ruthie, it takes me three days to "get over" eating only one food that I shouldn't, and I don't have any known illnesses. I don't eat avoids but some foods that I'm allowed simply don't agree with me for now. Chicken is a neutral for me, but it makes me feel tired to the bone for three days if I eat it. I have only had it once in the last several months because of that. I hate to get into situations like you described, and especially all in the same day!!  :o :o :o  Thankfully, all our friends understand that I must not eat certain things because they will throw me for a loop. I decided a long time ago that people who don't understand won't suffer nearly as bad from me not eating something they are serving as I will if I try to spare their feelings at the expense of three miserable days out of my life!!! I can't help it if they want to eat foods that NO ONE should be eating!! I don't draw attention anymore than I can help to what I am eating or not eating. Maybe a little visit to the bathroom would make people not notice what you are eating or not eating!! Sometimes things call for drastic measures! Even loading up a napkin can hide some things when you are simply standing around until you can get to the nearest garbage can! I always have something in my purse that I can pop into my mouth until I can get home. It does seem that there should be some way that your husband could help. The first thing he needs to do since he isn't working is to stop smoking! But, of course, that is a whole lot easier said than done.....
Posted by: JJR, Tuesday, March 20, 2012, 5:01pm; Reply: 822
I'll say a prayer for you ruthie.  Hang in there!
Posted by: ruthiegirl, Tuesday, March 20, 2012, 5:09pm; Reply: 823
Thing is, this family has a child with multiple severe allergies and I thought they DID understand!

Also, nobody was forcing me to eat anything. Everything was buffet style. The problem was that I was there the entire day and there weren't any 100% compliant options for me, and I needed to eat!
Posted by: JJR, Tuesday, March 20, 2012, 7:19pm; Reply: 824
It stinks that some of us are so sensitive to certain foods.  And it also stinks that the rest of the world eats so, well....  interestingly.  I'm hoping someday to be able to eat like everyone else, if only for a meal and not have to pay dearly for it.  Don't know if that will ever happen or not, but it would make things so much easier.  But, I guess we're given this challenge for a reason.  Maybe to show others that food CAN affect you, and you can maybe heal some things by what you eat.
Posted by: TJ, Tuesday, March 20, 2012, 8:12pm; Reply: 825
Quoted from ruthiegirl
I'm just sick and tired of being sick and tired.
Aren't we all.  (((hugs)))
Posted by: 14442 (Guest), Tuesday, March 20, 2012, 8:56pm; Reply: 826
Here is a link about Lyme's Disease- the doctor links it to a lot of other things- something to do with leptin?:
http://jackkruse.com/hey-lyme-disease-meet-leptin/
Posted by: Spring, Tuesday, March 20, 2012, 9:27pm; Reply: 827
Quoted from ruthiegirl
Thing is, this family has a child with multiple severe allergies and I thought they DID understand!

Also, nobody was forcing me to eat anything. Everything was buffet style. The problem was that I was there the entire day and there weren't any 100% compliant options for me, and I needed to eat!


Yes, you did have a whole bundle of bad circumstances that day. Buy a big purse and load'er up next time!  (smile)  I wouldn't hesitate to do that. My blood sugar and health are too important to do otherwise. Maybe you will feel better in a day or two. I certainly hope so!
Posted by: Spring, Tuesday, March 20, 2012, 9:32pm; Reply: 828
Quoted from 14442
Here is a link about Lyme's Disease- the doctor links it to a lot of other things- something to do with leptin?:
http://jackkruse.com/hey-lyme-disease-meet-leptin/


Great article, Sahara! Makes sense to me!  
Posted by: ruthiegirl, Wednesday, March 21, 2012, 4:01pm; Reply: 829
Yup, I'm definitely feeling better now. I've been super-carful about compliance since Sunday, getting enough sleep, and yesterday I made it a point to do something fun for myself. I'm not  feeling 100% yet, but I'm a lot more balanced.

In retrospect, I should have packed an entire meal for myself in my little bag, and plopped myself down at the table and eaten it on a paper plate. It wasn't a large crowd, and every single one of them is well aware of the 8yo's severe allergies, and I'm sure they all would have understood.

I don't anticipate any similar situations arising anytime in the near future, as I don't have any other close friends with 12yo boys. And I'm now inspired to do what I can to make sure I'm as compliant as possible over Passover.
Posted by: Spring, Wednesday, March 21, 2012, 4:16pm; Reply: 830
Glad you are feeling better, Ruthie!  
Posted by: JJR, Thursday, March 22, 2012, 5:08pm; Reply: 831
Very interesting link Sahara.

Man, I gotta get over some of this germaphobia.  It's been too high the last couple of days.  My heart wants to fight it, but my mind gives in too much and I end up cleaning things more than I should be.  It's annoying.
Posted by: Ribbit, Monday, April 9, 2012, 7:58pm; Reply: 832
JJ, I'm sorry you're having such a rough time.  Have you been taking sublingual B vitamins?  Fish oils?  Vitamin D?  

I've now started month 3 of the Cowden protocol.  I have several things to report.  First off, I have not had a SINGLE headache since I began it.  Not only have I not had migraines, I haven't had headaches at all!  Well, okay, I started getting one once and then a trip to the chiropractor stopped it in its tracks.  But other than that one, I haven't had any, and that's quite an improvement for me, seeing as I've basically had a headache since 1985.  

My nausea has let up and for the first time in a good long time, I've gotten some relief.  It still comes and goes, but it's more off than on now, which is a great improvement.  

I'm not quite as foggy-brained.  I'm still terribly forgetful, but when I need to think, I'm able to do it more clearly.  I'm able to bring the date to mind more easily and I'm not caught quite as off-guard when somebody asks me a random question.

I haven't gotten lost driving in a couple of months.  Big improvement there.

I'm not waking up feeling like my body is shaking.  My body is calmer.  I still have to leave the room if there's too much noise, but at night my body is calm.  The numbness and tingling in my lip is nearly gone. It had come back when I went off all my supplements back in November when I had all my bloodwork done (some of the results of which I still have not received  >:( ) and now I've recovered nearly all the feeling in my mouth area.

And here's a really great thing: No fevers!  I have been fever-free for over 2 months......Until today.  At the moment I've got about 99*.  I don't know why it suddenly came back, but I still consider that really good.

The only thing I'm not taking is the Zeolite, which is a kind of clay that binds to heavy metals and detoxes them.  For some reason I have bladder trouble sometimes after taking it, so I called them and they said not to take it till they could call Dr. Cowden himself and ask his opinion.  I told them what I'd been taking (chlorella, algin, homeopathic stuff, cilantro), and that I'd had every last bit of it removed from my mouth.  They were happy to hear that.

Anyway, I'm still dealing with some overwhelmed feelings, but I was able to hike for 2 hours around a lake and up and down a mountain this weekend.  It was our 10th anniversary and we went as a family on a fishing trip.  It was a lovely lodge with a lake and we were able to stay there for free (somebody DH knows through his work) and we had a really good time.  I don't think just a few months ago I would have been able to stand in the sun for three hours and catch crappy with the kids.   ;)

I think I'm getting better.  I think things are looking up.  I'm well enough that I'm not asking God to spare my life.  I think He has.  And I'm thankful.  
Posted by: Spring, Monday, April 9, 2012, 9:29pm; Reply: 833
It is wonderful to hear from you, Ribbit! I have been thinking about you a lot lately and wondering how you were getting along. Sounds like you are making some really important progress in several different ways. I'm pulling for you!(smile)
Posted by: Chloe, Monday, April 9, 2012, 9:36pm; Reply: 834
Ribbit, I'm so happy to see you posting.....and to find out that your health has been improving!  Hope it continues!  :)

Happy 10th Anniversary!
Posted by: ABJoe, Monday, April 9, 2012, 9:39pm; Reply: 835
Congrats on the 10 years anniversary, Ribbit.  Glad you are doing better.  Keep progressing.
Posted by: JJR, Monday, April 9, 2012, 10:43pm; Reply: 836
Praise the LORD Ribbit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That is a wonderful report.  I bet you 10 bucks having the metal out helped a ton too.  Never mind the stupid lymes.  Well, not never mind, but I don't care what all the traditional dentists say.  I felt better once I got mine out.  

That sounds like a great time at the lake!!!!!!!!!!!!  God was good to bless you with that time.  And fwiw, I think it's "crappie"  not crappy.  Hehehheeh.  I'll have to look that up.  Did you eat any?

My germaphobia is getting better.  There are many things I'm able to let go.  I quit rinsing all of my dishes.  For some reason I always had to rinse all my dishes, even after I had washed them in the dishwasher.  I guess I was and am worried there is remnants of soap on them.  I'm still rinsing my forks and spoons because they always have water spots on them.  I guess I shouldn't worry about that.  The reason they have water spots is because I put them upside down because I don't want to touch the part that goes in your mouth when I'm emptying the dishwasher once they've been cleaned.  That just seems gross to me.  Even if I do wash my hands prior, it still seems gross to me.  So.....

My biggest hang up right now is raw meats.  It's like I want to nuclear bomb the kitchen every time I cook them.  I wash my hands too much, and then I wipe down the countertops and everything with the seventh generation wipes that supposedly, hopefully kill any bacteria or whatever.  I do it too much.  It's like I want to do it 10 times for my mind to relax.  I don't do it 10 times, but I have done it more than once.  In this area I'm almost getting worse.  And going on websites to figure out what the proper way to clean up after handling raw meats is not helping.  Most people act like you have to hose down your kitchen with bleach after handling poultry.  I'm just not sure how to have a proper attitude about it.  Plus, even worse, I'll worry about touching the packages at the store.  Like somehow the raw meat might be on the outside.  And this makes it hard to thaw, because it's hard to have a spot in your refrigerator that you can set them in so you don't touch anything else getting it in or out.  I've been double wrapping them in plastic grocery shopping bags when I put it in the fridge to thaw.  Crazy.  Then they tell you you should have spot at the bottom to thaw meats because of the drippings.  Well, what's at the bottom of everyone's fridge?  Yeah, crisper pans.  I just don't see how to do it.  
Posted by: deblynn3, Monday, April 9, 2012, 11:03pm; Reply: 837
i put my meats into a large bowl or platter. The bags always leak. I usually marinate the meat and then I can just slide it into whatever I'm cooking it in. grilling forks are great for picking it up and turning if need be.
Posted by: TJ, Wednesday, April 11, 2012, 7:38pm; Reply: 838
Ribbit, that is wonderful news!  I was hoping that we hadn't heard much from you lately because you were feeling better.
Posted by: Ribbit, Thursday, April 12, 2012, 11:21pm; Reply: 839
Yes, yes, and what's better is that just got my IGeneX test results in the mail.  FINALLY.  That's was November, people.

Crappie.  Oh.  Thanks, JJ.  lol

I'm going to put the fussing children in bed and then I'll come back and post the positive bands.  'Cause I don't know what they mean.
Posted by: Goldie, Friday, April 13, 2012, 12:05am; Reply: 840
Ribbit  Wow what a good report .. so glad you have a great time with the kids and walking around even .. Good for you.. ALL the best!!
Posted by: ABJoe, Friday, April 13, 2012, 12:25am; Reply: 841
Quoted from JJR
And going on websites to figure out what the proper way to clean up after handling raw meats is not helping.  Most people act like you have to hose down your kitchen with bleach after handling poultry.

The way to make this easier is look for ways to limit the area that raw poultry touches.  For instance, we use the baking dish under raw meat from freezer through thawing in the frig. to the sink, if we need to rinse / clean, then into the dish it will be baked / cooked in.  This limits the amount of area that needs to be cleaned to this one "transit" dish, the sink and the baking pan.  

If you need to cut the piece, either use a cutting board or use the transit dish - just make sure that you don't put the knife through the dish...  heheheee

I don't usually cut raw meat - I cook the form I bought...  Especially since we no longer use chicken in our house, I'm not tempted to buy a whole chicken and then cut it for fried or BBQ...
Posted by: Ribbit, Friday, April 13, 2012, 1:58pm; Reply: 842
I spent two hours on the phone last night with Liz, the president of the GA Lyme Disease Association.  She's wonderful.  She even asked me if I'd speak at the Lyme Awareness Day at the capitol building.  I don't think I'm up for that.  I can write, but I don't like to talk.

Okay, here are my positive bands:

41 kDA, 58 KDa (IgG test)
18 kDA, 31 kDa, 41 kDa (IgM test)

The numbers are evidently the protein weights.  Different protein bands in the spirochete have different weights.  Whatever ones you show antibodies to, they'll give you a + mark.  I had two + marks next to 41 kDa.  Some of them are evidently just positive for general spirochetes.  31 kDa is, and I quote Liz, "Absolutely Lyme."  The IgG is the older antibodies--the ones that show it's long-term and chronic.

I cannot say how thrilled I am that I finally got these positive results.  Liz said if I had it done again, it might show up more...or less....  The reason it's so exciting is that it answers all the questions I've had for the last 25 years. All the wondering what in the WORLD was wrong when everybody told me I was in perfect health. Most of my life has been spent denying the reality of the pain and fatigue in order to not appear overly imaginative.
Posted by: Spring, Friday, April 13, 2012, 3:14pm; Reply: 843
Quoted from Ribbit
I cannot say how thrilled I am that I finally got these positive results.  Liz said if I had it done again, it might show up more...or less....  The reason it's so exciting is that it answers all the questions I've had for the last 25 years. All the wondering what in the WORLD was wrong when everybody told me I was in perfect health. Most of my life has been spent denying the reality of the pain and fatigue in order to not appear overly imaginative.

What a horrible burden to carry around for so many years. I don't know how in the world you have managed so well. At least now you know clearly and without doubt where you stand and exactly what the battle is. I think if the people around you just took some time to read a little about Lyme's disease, a big light bulb might go on and reveal to them that they have been looking directly at it for all these years! I would hope that they would feel a little regret for their mindless comments. Who knows, some of them might even have some of the symptoms themselves.
Posted by: ABJoe, Friday, April 13, 2012, 3:45pm; Reply: 844
Quoted from Ribbit
The reason it's so exciting is that it answers all the questions I've had for the last 25 years. All the wondering what in the WORLD was wrong when everybody told me I was in perfect health. Most of my life has been spent denying the reality of the pain and fatigue in order to not appear overly imaginative.

I know this feeling well...  The only thing I can add is that, as the bread-winner in our family, I was scared to admit to my WW just how bad I felt because I didn't know and couldn't get any answers.  Of course, now that I know what is at the root of the problem, I could never have expected a Dr. to be able to find it.  It took correcting the diet so I started healing before the true problem was unmasked.

Even though I'm not able to work full days reliably right now, I know I am healing and there is light at the end of the tunnel - I still don't know how long the tunnel is because cranial plate shifting in an adult is rare and nerve healing takes a long time, if it completes at all...

I'm so glad that you have some answers and can focus on a direction for treatment.  We're getting better little by little!
Posted by: Chloe, Friday, April 13, 2012, 3:49pm; Reply: 845
Ribbit, what is the specific name of the test that showed the weights of spirochetes?  Is this new
testing?  Lyme testing in the past was never reliable.  Glad you're doing so much better! :)
Posted by: Goldie, Friday, April 13, 2012, 5:42pm; Reply: 846
Ribbit so you where 10 year old when you got it? do you remember ?

But I sympathize with you being relieved that you finally know what it is that makes you ill...

all the best..



Quoted Text
I can write, but I don't like to talk.


Just go any way and turn the table .. let them ask questions.. you can talk to any they have.. you have come such a long way - from the time of the previous thread that was without end..


Did anyone see Dr Phyl today on Lyme.. it was mostly medical - not much alternative or natural included.. might be able to see it on his website..  
Posted by: TJ, Friday, April 13, 2012, 6:34pm; Reply: 847
Quoted from Ribbit
I cannot say how thrilled I am that I finally got these positive results.  Liz said if I had it done again, it might show up more...or less....  The reason it's so exciting is that it answers all the questions I've had for the last 25 years. All the wondering what in the WORLD was wrong when everybody told me I was in perfect health. Most of my life has been spent denying the reality of the pain and fatigue in order to not appear overly imaginative.
It must be so nice to finally have some hard evidence you can show the nay-sayers.

Quoted from ABJoe
I still don't know how long the tunnel is because cranial plate shifting in an adult is rare and nerve healing takes a long time, if it completes at all...
Wait, what?  This is the first I've heard about this!  Will you fill us in?
Posted by: ABJoe, Friday, April 13, 2012, 6:48pm; Reply: 848
Quoted from TJ
IWait, what?  This is the first I've heard about this!  Will you fill us in?

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?b-storybd/m-1276361244/

I should update with a list of symptoms, etc...  I've been having a lot of "crammage" and pain lately as it seems like my whole spine (and random radiations from it) is on fire on an intermittent basis, so it will be later.
Posted by: JJR, Friday, April 13, 2012, 7:48pm; Reply: 849
I feel sort of warm and fuzzy right now for especially you Leanne.   :)
Posted by: TJ, Friday, April 13, 2012, 11:36pm; Reply: 850
Quoted from ABJoe
http://www.dadamo.com/cgi-bin/Blah/Blah.pl?b-storybd/m-1276361244/

I should update with a list of symptoms, etc...  I've been having a lot of "crammage" and pain lately as it seems like my whole spine (and random radiations from it) is on fire on an intermittent basis, so it will be later.
Where have I been?  That is great news that you found a root cause.  I would like to hear more.
Posted by: C_Sharp, Saturday, April 14, 2012, 12:50am; Reply: 851
Quoted from Chloe
Ribbit, what is the specific name of the test


Ribbit used IGeneX

http://igenex.com/Website/#

They offer several tests for Lyme.

They have a reputation of finding Lyme when others don't.

Test offered by IGeneX for Lyme include:



Lyme IgG/IgM/IgA IFA Screen

Lyme IgG/IgM Antibody Serology

Lyme - C6 Peptide

IgG Western Blot

IgM Western Blot

Lyme Dot Blot Assay (LDA)

Reverse Western Blot (RWB) for Antigen

Detection of Borrelia burgdorferi with the Multiplex PCR
Posted by: Tom Martens, Sunday, April 15, 2012, 5:16pm; Reply: 852
Quoted from Ribbit

I think I'm getting better...  And I'm thankful.  


Don't forget to try Dr. D'Adamo's Trehalose Complex.  In his lecture he mentions it can help with Lyme Disease.

Posted by: 18521 (Guest), Monday, April 16, 2012, 2:33pm; Reply: 853
So glad I found this thread.  I have had LD for probably 20+ years.  I was misdiagnosed and tried everything to feel better.  I started with the BTD for O, thinking I was Type O.  I got really sick and dropped the diet.  I took the blood test 3 times and it came up A+.  What??? Both my biological parents are O on their medical records.  Go figure - must be a mistake on one of them.

Fast forward and 6 years of allopathic medicine later, I finally stopped the antibiotics and dropped the high protein diet that wasn't serving me well.  I still see my LLMD because I am on IVIg, but I am doing homeopathic drainage and cupping/bleeding to move the stagnant blood.  I am in a world of herx right now, but I feel things moving out of my body.  It can be painful at times.  Thinking positively helps.  Eating sugar messes me up.

I am starting anew on my A+ Teacher diet, mostly because my cardiologist says it suits me.  I am hopeful it helps with the recurring Lyme symptoms and die-off.  You all have posted some good stuff re: Lyme therapies.  I will try to share the ones that have worked for me.

Posted by: Ribbit, Wednesday, April 18, 2012, 12:35am; Reply: 854
Welcome to the forums, Spokes!  And welcome to the A diet.  I'd love to hear about what's working for you.

Thanks, C# for posting that list.  

I had sort of a set-back last night and today.  Just unusually fatigued, plus I had to go grocery shopping and DD#1 needed some clothes, so we braved Walmart.  I hate Walmart.  With great passion (when I can muster it up).  But I figured it was better to take one trip and get what I needed than to go to two different stores.  'Cause I never know when my energy is just going to totally fail on me.  So last night I went to bed early.  When I got back from Walmart this afternoon I was so wiped out I had to take a nap.  Oddly, the stress caused my lips and gums and left hand to tingle.  I hadn't really put stress with numbness together before.  I'll have to keep my eyes open regarding that connection.  After a short nap, I was fine again.

Tom, I'll look into Trehelose Complex.  I've been taking Genoma Security along with the Cowden protocol.

Joe, have you looked into Young Living oils?  Forgive me if we've talked about this before.  My memory is failing.  Certain essential oils applied to your spine can help kill viruses.  Or whatever you're harboring.

JJ, I'm glad I could give you some warm fuzzies.
Posted by: Ribbit, Wednesday, April 18, 2012, 12:39am; Reply: 855
Goldie, I was 8 or 9 when I got the tick bite.  I was in 3rd grade.  In South Carolina.  I talked with Dr. Kerry Clark at last year's Lyme Day at the Atlanta capitol building and he said I was the earliest case he'd heard of from SC.  I'll talk with him again this year and ask him if they'd be interested in taking any blood or doing other tests for their use in studies...as long as they pay for it.  It's possible I have a different strain than what people are getting today, which may be one reason it's taken me this many years to get as sick as JJ (for instance) got within just a few years.  I am where many people get in less than five years.  If that makes sense.  I can't tell if I'm making sense.

Here's something that was posted on Facebook today:

http://www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm
Posted by: Ribbit, Wednesday, April 18, 2012, 12:42am; Reply: 856
And unfortunately, Spring, it's not going to be as easy as showing people test results.  There's a lot more to it than simply health.
Posted by: JJR, Thursday, April 19, 2012, 1:35am; Reply: 857
Quoted from Ribbit
Goldie, I was 8 or 9 when I got the tick bite.  I was in 3rd grade.  In South Carolina.  I talked with Dr. Kerry Clark at last year's Lyme Day at the Atlanta capitol building and he said I was the earliest case he'd heard of from SC.  I'll talk with him again this year and ask him if they'd be interested in taking any blood or doing other tests for their use in studies...as long as they pay for it.  It's possible I have a different strain than what people are getting today, which may be one reason it's taken me this many years to get as sick as JJ (for instance) got within just a few years.  I am where many people get in less than five years.  If that makes sense.  I can't tell if I'm making sense.

Here's something that was posted on Facebook today:

http://www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm


I thought you said you were always fatigued though, as a young adult especially.  I have no clue for sure when I was bit.   I was bit as a young child by a regular tic that they removed.  But the time that I think started it all was when I never saw a tic.  I had a weird, what looked like to me a bruise, on my knee about 10 years ago.  We had been up camping.  I got sick for about a week and a half and it was summer. I had flu like symptoms.  The bruise was weird because it was like a ring.  Clear in the middle, but a ring.  I have a feeling it might had been than.  Because it wasn't a overly long time after than, maybe a year or two, that I developed a heart arrhythmia.  That was the only symptom I had that was an issue, which really wasn't because it always went away after a little bit.  Even while being active.  But that seemed to get worse.  It happened frequently after being active.  Exercising or working vigorously.  Which I did.  That went on for about 5 years previous to a downright super crash when I was 35.  I'm probably repeating myself again.   Which was about 5 years after the whole camping episode.  I got tested for it at the time, and it came back negative.  The doctor might have even suggested antibiotics, but I declined them because I didn't want to take anitbiotics for something I might not have had.   Funny, if I did I might have killed it.  Oh well.  But that's my fault.  It's the fault of the dumb disease, or the test, that it didn't show up on the test.  But to be honest, I'm clinically diagnosed at this point and I don't really care to spend more money on the igenex tests.  I'm just doing battle with it, assuming I have it.  I have enough info to be confident I do.  Besides clinically being diagnosed, an ND's biofeedback machine about 4 years ago told me I had it also.  So.....

Either way, my point is, I'm not sure if it was the tic when I was a young boy or not.  Or if the camping incident was it or not.  It could've been a totally different time.  I deer hunted every year from a teenager up until I got sick.  And cut up deer every year.  Field dressed usually one or more a season also.  I could've gotten bit by a deer tic any of those times and didn't know.  And even at that, I always loved being outside.  I used to walk on a hiking trail that was very wooded nearly 4x a week.  Picked berries in the woods.  I was always in the outdoors.  Nearly every day.  I also had a job for a while after high school cutting lawns.  I was outside every day.  And in the fall we'd rake leaves.  Many places had wooded areas on their lot.  It's bizarre to think about at this point.  Because I really don't get outside a lot now.  Ugh.  It's painful to think about, as I loved to be outside, in the woods.  Oh well.  Life doesn't always garaunty that we'll get we want all the time.  I have a lot to be thankful for regardless of my circumstances.
Posted by: Kim, Thursday, April 19, 2012, 7:23am; Reply: 858
I am sure you all thought I fell off a cliff as I have been gone so long.  Just completed 9 weeks of IV Rocephin.  As usual I don't follow any rules for anything.  Usually brain function is the last thing to return but mine is coming back.  I have moments of clarity that I did not have before.

Fatigue is worse, but I knew that IV antibiotics are hard on the body and they are treating me for Babesia, Bartonella and Ehrilichia all at once.  I decided to go all out and beat this thing to the  ground.  Pain is starting to get better.  Not eating well enough yet but sticking to my swami and going slow.  

I am doing some heart tests to make sure all is well there.  I am bradycardic and just want to make sure nothing electrical is going on.  Palpitations are going away with the antibiotics.  I am dizzy a lot, but my blood pressure is low and I think it has always been that way.  I think the medications are lowering it further.  Very slow improvement, but I will take any improvement.  Keeping the faith through it all.
Posted by: Goldie, Thursday, April 19, 2012, 10:49am; Reply: 859
Quoted Text
From the thread of two years ago by Cloe..    

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?b-storybd/m-1276361244/

ABJoe, I'm so glad you brought this up.  I see an osteopath who does sacral cranial adjustments and for the past year while following my SWAMI, everything in my head seems to either jam up out of nowhere and I need to see my osteo for a release and then it takes a few days to feel
the movement....I have the exact same issues with my ears...pressure, stuffiness...not discharge but congestion that drives me crazy....THe more compliant
I am, like when I take supplements like Deflect twice a day and Polyflora with Live Cell A....or eat
lots of soy and foods that would have powerful effects for a blood type A, my cranial joints move...Sometimes they're tighter...other times looser...and I've never been so sensitive to weather
changes, especially low pressure systems...My head jams up in low pressure systems.

For the past two weeks, after an osteopathic adjustment, I was absolutely at my wits end...but today after a good night's sleep, I woke up with less "crammage"....Don't laugh...that's the word I used to describe it as if everything gets crammed together in my head.

It comes and goes....

I might have days where I think my whole head is going to explode...and it's not a headache...

I did have a few accidents that related to my head...One was when I was in my 20s and got
catapulted from a wave in the ocean onto the beach...landed upside down with my head smashed
into the sand...A few years ago, I got hit from behind by a truck while driving...Even though I
saw it coming in my rear view mirror, and braced myself, there was trauma that went deeply into
my neck and back muscles..which might have caused more crammage in my head.

OMG...I can't even believe another person has mentioned this....Maybe there are more of us than
we know.

When I started the diet, I had severe sciatica from my spine shifting badly after my rear ended
car accident....It seems as if it worked itself out completely but moved higher and now is all in
my head.

Osteopath does understand what I'm explaining, and each time I see him,he has adjusted me to where I leave his office in a better place.  But I do keep on shifting.

I have a feeling this is going to take more time.  Healing is happening on a  really deep level, I'm
quite sure.  Even my thoughts are different since I'm on this diet.  Less uptight....more relaxed...
and sometimes "letting go" affects all the muscles in the body...and head.


1)   I have had similar headissues issues for years and decades after accidents,, all that anyone has to do, I did .. as of late I have tried the Trehalose Complex ,, I think it has diminished my near daily headaches.. Not all the way and hard to explain, but I 'think' the headaches are less severe, and the nerve muscles are less 'congested' going up my neck to the top of my head. I am doing TC about 60 days at a teaspoon a day.
2)   I am again suggesting that you try this -posted before- :
Here is on exercise for EVERYONE .. for back and neck pain and for RELAXATION while doing GOOD for you!. Especially those who jog and push their body forward, thus creating a hunchback stance when getting older..

1) Choose a time when you can spend 20 minutes beginning to end.. take the phone with you or let it ring.. take eye shades with you or listen to TV .. just don't read a book as it would bend your neck.

2) THE IDEAL here would be IF you can do it without many books or just a skinny one under your head. But to start with, take as many books needed to be comfortable as that is most important -- this is not a one time CORRECTION.

3) If you can get on the floor (and get up again) lye on the floor and place your knees and feet in a square angle over the couch, scoot close to the couch to support your knees but not hanging from them........ If you are not able to get off the floor, then build a couch pillow tower on your bed.

4) Support your head comfortably. Eventually you will only need a one inch book/pillow.

5) Now lie down for 20 minutes with your arms comfortable.

6) After a while put your hands on the floor straight out and rotate one arm at a time (holding the shoulder with the other hand to feel the shoulder rotation.) Turn the hand 'out' slowly and 'in' again making sure that you move the shoulder cuff but NO STRESS.... Then shift to the other side and do the other arm and shoulder a few times. Essentially you will not feel any changes .. but the body knows what to do.. ALLOW it - to do it..

7) Now push ONE shoulder at a time into the floor comfortably.. for a few seconds.. feel the pull back across to the other side hip. Repeat a few times and relax then do the other side..

GENTLY is the key to this 20 minutes RELAXATION of your NECK and WHOLE spine/ adjusting ONE nerve at a time.. Until you lengthen the spins to where you only need a one inch book/pillow.. The BODY will readjust it SELF.. Do this and you will save more money on chiros ..

Price 850 please send it to me.. Pretending I am the doctor on 5th Ave. .. A price well worth having paid for.. This is the true value of my sharing his instructions with you. Haha

3)   anyone having unresolvable blockages is able to call me for some other help.. send me your phone # by email.  
Posted by: Spring, Thursday, April 19, 2012, 11:50am; Reply: 860
Quoted from Ribbit
And unfortunately, Spring, it's not going to be as easy as showing people test results.  There's a lot more to it than simply health.


It seems that some of the people around you need to allow room for some skin between you and them. I guess many of us know people who we have decided will never change about some things or anything. Sad.
Posted by: ABJoe, Thursday, April 19, 2012, 3:46pm; Reply: 861
Quoted from Ribbit
Joe, have you looked into Young Living oils?  Certain essential oils applied to your spine can help kill viruses.  Or whatever you're harboring.

Every time I've tested any essential oils, the answer has been "No".  My practitioner thought some might help as well, but the answer to her, even with really dilute oils was No...  At this point, I'm not arguing with my body!

I appreciate the thought...

I knew iodine was important for thyroid, but recently learned it was necessary for healthy myelin, the "insulator" around nerve fibers.  I'm hoping that with renewed emphasis on maintaining iodine levels and with taking Trehalose Complex to assist the cleaning, that the nerve healing will get finished quicker.
Posted by: JJR, Thursday, April 19, 2012, 8:43pm; Reply: 862
I did oils for over 2 years daily.  And then all of a sudden they make me feel very strange every time I use them.  They definitely helped when I was using them.  But they can be very strong.  Very strong.  I do sniff a few from time to time, but haven't actually applied any in a long time.  You are probably already doing enough.  And everybody reacts differently.  Or there may be a time when they will work for you.  Problem is they're expensive.  Just like any of this stuff that's good for healing.  At least if you get good ones.  
Posted by: deblynn3, Thursday, April 19, 2012, 8:59pm; Reply: 863
Quoted from Goldie


1)   I have had similar headissues issues for years and decades after accidents,, all that anyone has to do, I did .. as of late I have tried the Trehalose Complex ,, I think it has diminished my near daily headaches.. Not all the way and hard to explain, but I 'think' the headaches are less severe, and the nerve muscles are less 'congested' going up my neck to the top of my head. I am doing TC about 60 days at a teaspoon a day.
2)   I am again suggesting that you try this -posted before- :
Here is on exercise for EVERYONE .. for back and neck pain and for RELAXATION while doing GOOD for you!. Especially those who jog and push their body forward, thus creating a hunchback stance when getting older..

1) Choose a time when you can spend 20 minutes beginning to end.. take the phone with you or let it ring.. take eye shades with you or listen to TV .. just don't read a book as it would bend your neck.

2) THE IDEAL here would be IF you can do it without many books or just a skinny one under your head. But to start with, take as many books needed to be comfortable as that is most important -- this is not a one time CORRECTION.

3) If you can get on the floor (and get up again) lye on the floor and place your knees and feet in a square angle over the couch, scoot close to the couch to support your knees but not hanging from them........ If you are not able to get off the floor, then build a couch pillow tower on your bed.

4) Support your head comfortably. Eventually you will only need a one inch book/pillow.

5) Now lie down for 20 minutes with your arms comfortable.

6) After a while put your hands on the floor straight out and rotate one arm at a time (holding the shoulder with the other hand to feel the shoulder rotation.) Turn the hand 'out' slowly and 'in' again making sure that you move the shoulder cuff but NO STRESS.... Then shift to the other side and do the other arm and shoulder a few times. Essentially you will not feel any changes .. but the body knows what to do.. ALLOW it - to do it..

7) Now push ONE shoulder at a time into the floor comfortably.. for a few seconds.. feel the pull back across to the other side hip. Repeat a few times and relax then do the other side..

GENTLY is the key to this 20 minutes RELAXATION of your NECK and WHOLE spine/ adjusting ONE nerve at a time.. Until you lengthen the spins to where you only need a one inch book/pillow.. The BODY will readjust it SELF.. Do this and you will save more money on chiros ..

Price 850 please send it to me.. Pretending I am the doctor on 5th Ave. .. A price well worth having paid for.. This is the true value of my sharing his instructions with you. Haha

3)   anyone having unresolvable blockages is able to call me for some other help.. send me your phone # by email.  


Yes, but you've put it so simply this time. My shoulder is out and wakes me with pain, I have been fixing it in place with a pillow each night. This technique sounds good. I'll give it a go.
Posted by: Spring, Thursday, April 19, 2012, 9:16pm; Reply: 864
Quoted from JJR
I did oils for over 2 years daily.  And then all of a sudden they make me feel very strange every time I use them.  They definitely helped when I was using them.  But they can be very strong.  Very strong.  I do sniff a few from time to time, but haven't actually applied any in a long time.  You are probably already doing enough.  And everybody reacts differently.  Or there may be a time when they will work for you.  Problem is they're expensive.  Just like any of this stuff that's good for healing.  At least if you get good ones.  


Your talking about sniffing reminds me of when I had Candida overgrowth. If my sinuses started bothering me I would shake the bottle of Nystatin, open it and take several deep breaths of the dust. Worked wonders every time.
Posted by: Goldie, Friday, April 20, 2012, 8:15am; Reply: 865
SOMEPLACE in this thread there was a link to all 300 symptoms.. I think Ribbit posted it.. any chance that you could post it again??
Posted by: Spring, Friday, April 20, 2012, 1:01pm; Reply: 866
Quoted from Goldie
SOMEPLACE in this thread there was a link to all 300 symptoms.. I think Ribbit posted it.. any chance that you could post it again??


http://www.nationallymereport.com/symptoms/300_medical_conditions.htm
Posted by: Ribbit, Friday, April 20, 2012, 1:05pm; Reply: 867
No clue, Goldie.  You're talking to someone who can't remember what she ate for dinner last night.  I have some lucid moments, but remembering a particular post isn't likely to come to me.... ;)

It's my low back that keeps me up at night now.  I really need a new mattress.  No matter how I lay, it hurts those bulging discs.

JJ, I have been fatigued and dizzy and achy and out-of-it since I was very young.  I know I had short-term memory issues even before I got the tick bite.  What I mean is, that was such a normal part of life for me that I don't consider it that bad.  I wasn't SICK sick.  I was just weak and tired and felt yucky.  It took me 25 years to get so sick that I thought I was going to die.  And some of you have gotten there much more quickly.  That's what I was trying to say.  I don't think I communicate my thoughts very clearly anymore.   :X
Posted by: Ribbit, Friday, April 20, 2012, 1:06pm; Reply: 868
And Kim, it is SO good to see you back!  I'm glad those abx are working for you.  
Posted by: Goldie, Friday, April 20, 2012, 5:36pm; Reply: 869
Ribbit.. thanks..

As for
Quoted Text
I don't think I communicate my thoughts very clearly anymore.
  

It might be hard for you... but you do fine ...

I always learn more from the ones who suffer then (even myself) than when they are all learned.  Keep up your good work.

When getting a new bed be careful.. I sleep in many and often the oldest is best,  I don't like the memory foam ones, (even at 3000.-)  I like a bed that goes UP and DOWN..

maybe you could find a place where they will cut a slice of foam at about 1.5 inches.. it might be all that you need for comfort..  all the best always.   Your posts have made a big difference in my life.. moved me much closer to understanding LYME.  Thanks  
Posted by: JJR, Friday, April 20, 2012, 7:27pm; Reply: 870
I think you communicated FINE!!  I was just saying I MIGHT have had it for a long time also.  I really don't know.  For me, it could've started as early as 5 years old or so.  Or, like I said, it was the time about 10 years ago.  Or anything in between, due to all the outdoor exposure.  Or, possibly all of the above.  We've even had tics in our house this year.  Already.  I've found them in our bed before in the last two years.  

Although you're probably right.  Because I was an athlete in high school and all that.  And I was never as strong as some of the other guys, I was still pretty active and strong.  I think my natural body is just not as strong as some.  Skinny, and ectomorph.  I wrestled 140 in High School.  Although there were times after high school that I could keep up with anybody installing cabinets and hauling them around.  Except I think it was more about my work ethic that it was how naturally strong I was.  I'm sure some guys had to use less of their energy to do the same amount I did, because they were bigger and stronger to begin with.  Anyways.............

My point is, you're probably right.  I didn't have nearly as much fatigue as you did growing up.  Or cognitive problems.  So the lymes probably did start later in life.


We sprung for a tempurpedic about 4 years ago and I love it.  I sleep better in it than any other bed I've been in.
Posted by: TJ, Friday, April 20, 2012, 11:03pm; Reply: 871
Quoted from JJR
And I was never as strong as some of the other guys, I was still pretty active and strong.  I think my natural body is just not as strong as some.  Skinny, and ectomorph.  I wrestled 140 in High School.
Wow, I barely made it to 120 in HS.

Quoted from JJR
Although there were times after high school that I could keep up with anybody installing cabinets and hauling them around.  Except I think it was more about my work ethic that it was how naturally strong I was.  I'm sure some guys had to use less of their energy to do the same amount I did, because they were bigger and stronger to begin with.
Like digging a hole with a shovel or a backhoe?  ;)
Posted by: JJR, Saturday, April 21, 2012, 4:21pm; Reply: 872
That's hard work.  I've done a little digging in my time and it's not something I ever wanted to do a lot of by hand.


By the end of wrestling season senior year, I was losing 7 pounds to hit 140.  I went about 150 when I graduated.  Then over then next 10 years or so I gained about 20 pounds.  And I was overweight.  I had a desk job at the time I had my health crash.  I think 140 is about right for my size and frame.  Maybe 150.  Last night I hit 128.5!!!!!  YAY!!!!  What you're weight now TJ?  Are you able to eat more lately?  Or are you too busy detoxing?  I hope all is going well. Or as good as can be expected.
Posted by: TJ, Saturday, April 21, 2012, 5:16pm; Reply: 873
I weighed 132 two days ago.  I'm still not wanting to eat much.  I should be done with this antibiotic middle of next week and maybe then things will take off because my gut flora can build up and help more with the digesting process.  I've been eating meat once a day, some nuts, lots of fruit, and a little veggies, in addition to the shake.  I doubt I'm getting 2000 calories daily at this point.  At my height and build, I'd like to get up to 170.
Posted by: Ribbit, Sunday, April 22, 2012, 3:46am; Reply: 874
Congratulations, JJ!  You now weigh more than I do!  LOL

Here's the weird thing about girls who used to be chunky.  The fat mentality NEVER GOES AWAY.  I weigh less than 125 right now.  I still feel fat.  I look in the mirror and say, "That's the nicest my waist has looked EVER, including in high school."  And yet I still feel fat. I weigh 20 pounds less than I did in high school too.  And that's after four kids.  Too bad it took being sick to get me to this weight. :P  I still have no appetite and I force myself to eat.  I know I need to eat because I get tired, not because I feel hungry, if that makes sense.  This is certainly a new thing for me (in the past year or so) because always in the past I ate a whole lot and kept the weight on, even if I was eating healthy food.  Ah, lovely things thyroids are.

I'm waking up more easily in the morning now.  I spent 5 1/2 hours in the garden yesterday and was only sore for a little bit this morning.  I didn't realize time was passing because it was very cloudy.  I thought I'd worked for maybe 2 hours and was shocked when I saw the clock.  

I'm beginning to be able to think about the future again as well.  I'd already started making plans, y'all.  Like getting rid of projects I never seemed to get around to doing just so Rob didn't have to go through as much stuff after I kicked the bucket.  I don't think I'm going to kick the bucket now.  So I still have all my project materials.  I just need time.   ;)  Today I called a lady in S. Ga. who raises berries and fruit trees and I ordered two dozen bareroot blueberry plants to pot and sell at our little local farmers market for at least double the price.  I just have to make sure they live for a year and make enough roots to fill out the pot, and then I have $$$.  I bought 20 little fig bushes several months ago and they're all leafed out now and looking nice.  I don't know that they'll be ready to sell this summer or not (I'll have to check and see how big the root system is, because you don't want somebody to go plant their bush and end up pulling a stick with a leaf on it straight out of a 3-gallon pot of dirt.  The roots are supposed to touch the edge of the pot). Anyway, I'm actually able to make plans for the future now, and it's doing something I love--growing plants--and I'm planning on being here a while longer.  (dance)  I got STUFF to do!
Posted by: Ribbit, Sunday, April 22, 2012, 3:50am; Reply: 875
(Sorry, JJ, I forgot you'd been bit years ago as well.  Or at least maybe bit.)  
Posted by: ABJoe, Sunday, April 22, 2012, 3:59am; Reply: 876
Quoted from Ribbit
--and I'm planning on being here a while longer.  (dance)  I got STUFF to do!

That's really great that your attitude is looking up...

I've had to be careful to not ramp up too quickly, but I know we are dealing with different issues.  I just hope you don't overdo...
Posted by: Victoria, Sunday, April 22, 2012, 4:54am; Reply: 877
Quoted from Ribbit

  Anyway, I'm actually able to make plans for the future now, and it's doing something I love--growing plants--and I'm planning on being here a while longer.  (dance)  I got STUFF to do!


(ok) (hehe)
Posted by: Spring, Tuesday, April 24, 2012, 4:53am; Reply: 878
Ribbit, your post from Saturday is just wonderful. And inspiring. I am so glad you are able to do more things and finding life worth living again. It is incredible that you were up to to working that long in your garden!

I have two new tick bites from last week. How anyone actually sees these things before they get big enough to start itching is beyond me. I wonder if smearing garlic all over my shoes would keep them off my legs. I hate to think what that would smell like after a while in the hot sun!!! I was reading tonight that they don't like it. And I imagine that I would like it a whole lot less!
Posted by: Goldie, Tuesday, April 24, 2012, 1:49pm; Reply: 879
Ribbit .. if it is in your budget.. maybe Threhalose Complex might be a good thing ..  it seems to fix nerve things.. few other things do.. and that includes nerve connections in the brain.. at least I hope so..

I am so glad that after you looked at 'dying'  a long time ago.. you got better.. glad for all around you!// glad yo are here to share..  
Posted by: Goldie, Tuesday, April 24, 2012, 1:51pm; Reply: 880
Quoted Text
I have two new tick bites from last week. How anyone actually sees these things before they get big enough to start itching is beyond me. I wonder if smearing garlic all over my shoes would keep them off my legs. I hate to think what that would smell like after a while in the hot sun!!! I was reading tonight that they don't like it. And I imagine that I would like it a whole lot less!


YOU ARE (rightfully) SCARING heck out of me.. PLEASE ALL BE careful!!!
Posted by: ABJoe, Tuesday, April 24, 2012, 3:31pm; Reply: 881
Quoted from Spring
I wonder if smearing garlic all over my shoes would keep them off my legs. I hate to think what that would smell like after a while in the hot sun!!! I was reading tonight that they don't like it. And I imagine that I would like it a whole lot less!

One possibility to help...
http://www.ehow.com/how_5375514_make-tick-repellent.html
Posted by: Spring, Tuesday, April 24, 2012, 4:13pm; Reply: 882
Goldie, I am trying to be careful, but with a yard full of trees, bushes and grass, it is almost impossible to avoid them. And I DO check for them all the time.....

Joe, thanks for the link. I already have the almond oil and a bottle, so now I need the neem oil. I just wish these deer would go back to the woods and stay there. ::)
Posted by: Goldie, Tuesday, April 24, 2012, 6:35pm; Reply: 883
well sorry but the lifecicle of the tick is not ONLY on Deer.. its on all animals but DEER have no way to brush them off.. 1 Apossum can brush and kill of 500 day ..
Posted by: JJR, Tuesday, April 24, 2012, 7:30pm; Reply: 884
Ribbit, GREAT POST.  YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I'm so glad you're feeling better.  I'm going to get with my doctor sometime soon here.  I think I need to take the list of things you are taking, to see if I should be doing them too. I'll have to FB message or call you sometime.  If you have time.

I hit 129.5 last night.  PRAISE THE LORD!!!!!!  You still got me beat TJ.  I think you're a bit taller though.  I don't know.  I'm like 5'8".  

Ribbit, you're not fat.  Just ask Rob.  I bet he thinks you look just great.  Just believe him and trust him if you ask.  Tell him to answer sincerely to "How do I look to you?"  And take his answer and burn it in your brain.  Unless it's negative.  Then he's just being dumb.  But I bet he won't say it.  But beyond all that.  Who cares what you look like?  Does that help spread the good news?  Does it help further God's kingdom?  Yeah, it might help you feel better, but that's a temporary thing.  It's an emotion.  Emotions lie to us.  And sometimes tell us things we shouldn't hear.  Sometimes they are good.  But sometimes they are not.  You look good, but far more important to me is your heart.  You are so beautiful on the inside.  You have helped me out so much and I am so thankful to know you.  You have been a blessing to me and to many others on here.  I could care less if you weighed less or more than me.  It's that sweet spirit that matters to me.  And to the others around you.  And to God.  I know you know that, but I'm just reminding you and trying to encourage you.  Eat.  It's good for you.  Don't worry about getting fat.  God will lead you.   :)

Having said all that, I struggle too with looking too weak for a man.  So I'm not judging you.  I'm preaching and it's a lesson that I'm trying to learn too.  So I hope that didn't sound judgemental.  
Posted by: Spring, Tuesday, April 24, 2012, 10:32pm; Reply: 885
Quoted from Goldie
well sorry but the lifecicle of the tick is not ONLY on Deer.. its on all animals but DEER have no way to brush them off.. 1 Apossum can brush and kill of 500 day ..


Maybe that is why the deer are tearing up so many types of trees around here. They will beat a Leyland Cyprus to death nearly. The ticks get on the trees and jump off on us when we walk near them.
Posted by: ruthiegirl, Wednesday, April 25, 2012, 9:19pm; Reply: 886
I'm so glad you're feeling better Ribbit!

Could you guys help me decipher the lab results I finally got in the mail today? The dr's conclusion is that I don't have Lyme, but I'm not sure if the tests she ordered are conclusive or not.

41 KD (IGM) Band: nonreactive
18 KD (IGG) band (also 23,28,30,39,41,45,58,66 and 93) all non-reactive
23 KD (IGM) band reactive
39 KD (IGM) band nonreactive
Lyme disease iterp (IGG) and (IGM) both negative

Do those tests definitely rule out Lyme? Is there any significance to the one reactive  test?
Posted by: Kim, Thursday, April 26, 2012, 12:16am; Reply: 887
Quoted from Ribbit
And Kim, it is SO good to see you back!  I'm glad those abx are working for you.  


Thanks! I don't get over here that often anymore.  Still have some rough days and now I am having arrhythmias.  My pulse hit 40 while I was hooked up to a blood pressure machine at the doctor's office.  All kinds of bells and whistles rang when that happened.  Now I have a bunch of heart tests I have to do to see if Lyme has caused an electrical problem in my heart.  It never ends.
Posted by: Kim, Thursday, April 26, 2012, 12:19am; Reply: 888
Quoted from ruthiegirl
I'm so glad you're feeling better Ribbit!

Could you guys help me decipher the lab results I finally got in the mail today? The dr's conclusion is that I don't have Lyme, but I'm not sure if the tests she ordered are conclusive or not.

41 KD (IGM) Band: nonreactive
18 KD (IGG) band (also 23,28,30,39,41,45,58,66 and 93) all non-reactive
23 KD (IGM) band reactive
39 KD (IGM) band nonreactive
Lyme disease iterp (IGG) and (IGM) both negative

Do those tests definitely rule out Lyme? Is there any significance to the one reactive  test?


According to my Lyme doctor, anything not totally negative is a low positive.  So Indeterminate or non reactive is positive.  Still, Lyme is a clinical diagnosis as even Igenex tests are not accurate.  Band 39 is the most specific for borrelia.
Posted by: JJR, Thursday, April 26, 2012, 2:29am; Reply: 889
Quoted from Kim


Thanks! I don't get over here that often anymore.  Still have some rough days and now I am having arrhythmias.  My pulse hit 40 while I was hooked up to a blood pressure machine at the doctor's office.  All kinds of bells and whistles rang when that happened.  Now I have a bunch of heart tests I have to do to see if Lyme has caused an electrical problem in my heart.  It never ends.


An arrhythmia is the first symptom I've gotten and I've had one for a long time.  That's weird how yours goes real low though.  Mine goes into a weird double time rhythm.  It's usually like 140-160 bpm.  They are no fun though.  I will say a prayer for you.  It's always scary when your heart doesn't beat the way it should.  I would start looking to the cellular level, and of course the nerves.  I think taking COq10 helps mine.  Plus cod liver oil.  

Someone was telling me that if you took a cell from the heart, the cell itself beats.  It's the only cell that does that.  Or something like that.  So, there may be some cellular junk needing to be cleaned out in you and me.  I know detoxing will help that.  

I have also found certain foods trigger it for me.  Onions do, without a shadow of a doubt.  Especially raw.  But I stay away from them, and it helps it not happen as much.  One time I start eating onion rings again, after having avoided onions, and sure enough, they started to happen again frequently.  It was no doubt that the onions were a trigger for me.&n