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A thread to discuss lyme disease*  This thread currently has 142,697 views. Print Print Thread
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JJR
Saturday, November 12, 2011, 1:32am Report to Moderator Report to Moderator

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Kyosha Nim
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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.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Saturday, November 12, 2011, 1:55am Report to Moderator Report to Moderator

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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.


"Anxiety is the gap between now and then"

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TJ
Saturday, November 12, 2011, 5:18am Report to Moderator Report to Moderator

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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.   At least I had something to take my mind off it, and I had a few good laughs, too.
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Kim
Saturday, November 12, 2011, 3:38pm Report to Moderator Report to Moderator

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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.
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nowishow
Saturday, November 12, 2011, 3:53pm Report to Moderator Report to Moderator

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Does anyone know if Babesia can go into a cyst form. I know "Lyme" can but I don't know if Babesia can.


"Anxiety is the gap between now and then"

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TJ
Saturday, November 12, 2011, 4:29pm Report to Moderator Report to Moderator

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I don't know nowishow, but I just did a little reading on it.  The babesia microorganism is actually a protozoa, not a bacteria.
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JJR
Saturday, November 12, 2011, 7:50pm Report to Moderator Report to Moderator

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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.



The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Sunday, November 13, 2011, 1:04am Report to Moderator Report to Moderator

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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.


"Anxiety is the gap between now and then"

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JJR
Sunday, November 13, 2011, 4:38am Report to Moderator Report to Moderator

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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....


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Sunday, November 13, 2011, 5:16am Report to Moderator Report to Moderator

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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.   As if things weren't bad enough.  I just hope this headache doesn't turn into a migraine.
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Ribbit
Sunday, November 13, 2011, 2:05pm Report to Moderator Report to Moderator

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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.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

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Ribbit
Sunday, November 13, 2011, 2:09pm Report to Moderator Report to Moderator

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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.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Sunday, November 13, 2011, 4:03pm Report to Moderator Report to Moderator

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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.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Sunday, November 13, 2011, 4:29pm Report to Moderator Report to Moderator

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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.
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TJ
Sunday, November 13, 2011, 4:31pm Report to Moderator Report to Moderator

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Kyosha Nim
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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.
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Chloe
Sunday, November 13, 2011, 4:40pm Report to Moderator Report to Moderator

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Kyosha Nim
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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


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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JJR
Sunday, November 13, 2011, 6:58pm Report to Moderator Report to Moderator

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I eat lots of veggies, but still suffer from some of those sypmtoms.  Hehhehee.  Maybe not enough.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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nowishow
Sunday, November 13, 2011, 7:14pm Report to Moderator Report to Moderator

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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.


"Anxiety is the gap between now and then"

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JJR
Sunday, November 13, 2011, 9:17pm Report to Moderator Report to Moderator

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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.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Monday, November 14, 2011, 2:10pm Report to Moderator Report to Moderator

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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.
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ruthiegirl
Monday, November 14, 2011, 3:58pm Report to Moderator Report to Moderator

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Homeopathic arnica may also help the swelling. I'm sorry you're going through this.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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spinnakertech
Monday, November 14, 2011, 4:00pm Report to Moderator Report to Moderator
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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.
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TJ
Monday, November 14, 2011, 5:02pm Report to Moderator Report to Moderator

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Kyosha Nim
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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!

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TJ
Monday, November 14, 2011, 8:36pm Report to Moderator Report to Moderator

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Kyosha Nim
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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.

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.
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JJR
Monday, November 14, 2011, 10:39pm Report to Moderator Report to Moderator

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Very good post and perspective spinnakertech.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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