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A thread to discuss lyme disease*  This thread currently has 172,179 views. Print Print Thread
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TJ
Tuesday, March 20, 2012, 8:12pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
I'm just sick and tired of being sick and tired.
Aren't we all.  (((hugs)))
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Sahara
Tuesday, March 20, 2012, 8:56pm Report to Moderator Report to Moderator
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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/
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Spring
Tuesday, March 20, 2012, 9:27pm Report to Moderator Report to Moderator

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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!    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!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Tuesday, March 20, 2012, 9:32pm Report to Moderator Report to Moderator

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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!  


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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ruthiegirl
Wednesday, March 21, 2012, 4:01pm Report to Moderator Report to Moderator

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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.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Spring
Wednesday, March 21, 2012, 4:16pm Report to Moderator Report to Moderator

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Glad you are feeling better, Ruthie!  


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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JJR
Thursday, March 22, 2012, 5:08pm Report to Moderator Report to Moderator

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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.


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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Ribbit
Monday, April 9, 2012, 7:58pm Report to Moderator Report to Moderator

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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.  


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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Spring
Monday, April 9, 2012, 9:29pm Report to Moderator Report to Moderator

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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!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Chloe
Monday, April 9, 2012, 9:36pm Report to Moderator Report to Moderator

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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!


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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ABJoe
Monday, April 9, 2012, 9:39pm Report to Moderator Report to Moderator

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Congrats on the 10 years anniversary, Ribbit.  Glad you are doing better.  Keep progressing.


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JJR
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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.  


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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deblynn3
Monday, April 9, 2012, 11:03pm Report to Moderator Report to Moderator

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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.


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TJ
Wednesday, April 11, 2012, 7:38pm Report to Moderator Report to Moderator

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Ribbit, that is wonderful news!  I was hoping that we hadn't heard much from you lately because you were feeling better.
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Ribbit
Thursday, April 12, 2012, 11:21pm Report to Moderator Report to Moderator

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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.


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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Goldie
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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!!


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ABJoe
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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...


RH-, ISTJ
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Ribbit
Friday, April 13, 2012, 1:58pm Report to Moderator Report to Moderator

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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.


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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Spring
Friday, April 13, 2012, 3:14pm Report to Moderator Report to Moderator

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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.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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ABJoe
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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!


RH-, ISTJ
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Chloe
Friday, April 13, 2012, 3:49pm Report to Moderator Report to Moderator

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Kyosha Nim
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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!


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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Goldie
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Sam Dan
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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..  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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TJ
Friday, April 13, 2012, 6:34pm Report to Moderator Report to Moderator

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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?
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ABJoe
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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.


RH-, ISTJ
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JJR
Friday, April 13, 2012, 7:48pm Report to Moderator Report to Moderator

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I feel sort of warm and fuzzy right now for especially you Leanne.  


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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