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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme--WHAT IS GOING ON??? (Page 1)

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Author Topic: Lyme--WHAT IS GOING ON???
UnexpectedIlls
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I have lyme, don't know HOW long but got very ill in my pregnancy and have been very ill since... been treating and not seeing much improvement. Bascially home/bed bound for over a year.

My Son has lyme-- we found out this year.. doing MUCH better on ABX!!

My fiance-- we believe he has it but has not been tested,.. TONS of exposures and symptoms. But STILL functional and working.

NOW... MY little BROTHER (8) that lives with me has been having strange symptoms (groin lymph nodes swollen, stomach aches, swollen ankle, Headaches, dizziness, Etc) ... HE was just diagnosed today with lyme... By our pedi who didnt even believe my SON had lyme.... Hmmmm! He said it is VERY common. Well where was he when my son was so sick and denying him.

WHAT THE H&%$ is going ON?????

My brother barely goes outside. He already has aspergers (autism spectrum)... Do you think it is possible that we both got lyme congentially from my MoM?? Even though I was not symptomatic till having my daughter and I am 26 years old.

My mother has had fibro, arthirtis and CFS for YEARS... could this have been lyme that she passed on to us???

I am devastated [Frown]

We were a happy healthy family a couple of years ago.. now we are all sick... This is so sad....

This HAS to stop....

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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jamescase20
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Lyme is resistent to abx and has biofilms and the body manufactures in error fibrin that allows the bugs a safe haven besides.
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DoctorLuddite
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What is more likely is that you are all suffering from vitamin D deficiency. Yours became manifest during your pregnancy because the process depletes you of vitamin D. Your brothers is becoming manifest (it already was, there is a connection between autism and low vit. D) because at 8 his body is growing and without going outdoors, that is causing an already low vit.D to become nearly undetectable. Your mother likely had it and so you and all your sibs were born with low vit.D
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UnexpectedIlls
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DocL-- Well me and my son have positive tests for lyme..

My sons Vit D levels were fine... Mine a little low.

I DO NOT believe for one second that the major symptoms I have and the severity of how ill I am is merely caused by Vitamin D deficiency. I dont think D deficiency would cause someone to be ill for 2 years and bedridden with over 50 symptoms....

I did not mean that my brother NEVER goes outside, obviously he does... he is just more of an inside person. I think it's crazy to say that people are very ill because of a hormone deficiency... as Vit D is NOT a vitamin but a secosterioid/hormone.

Dizzy-- I will write you a pm later! [Smile]

James-- Than why do some get well on abx??

Thanks all!

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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DoctorLuddite
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Hormones are very potent, to be without one at the proper amount at the proper time can be devastating. Too little can very well cause prolonged symptoms, on the order of months or even years, just as too much of a hormone can produce symptoms and elude diagnosis for years, as we often see with cushings syndrome. The body comes equiped with an immune system that fends off invaders like Bb, and the proper functioning of that immune system depends on vitamin D and other micronutrients. That your brother's symptoms are worsening at this time of the year is also consistent with a declining vitamin D level due to less opportunity for sun and a generally weaker sun that is at a lower angle in the sky. What level of vitamin D did your son have that is considered fine, and when was it tested? A low normal level in August is often subnormal in October...
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webmeg
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I hear you on the What the H___ is going on?!

You know how us lymies think "everyone" has lyme? Well I swear they do (ok, not really, but...)

My good friend just got diagnosed with Lyme, after my insistence that she get a Western Blot. She had odd symptoms, nothing classic. Tightness in her chest, spells of shakiness but we tested her blood sugar and it was fine, overall not feeling great but no headaches, joint pain, etc.

She tested positive for Lyme at a local hospital lab. And she hates the outdoors! More of a mall girl. [Smile] We do live in CT but she's rarely in her yard, but she sure lit up a Western Blot. Having classic Herx reactions to meds, doing well.

Another friend, at my insistence, got a Western Blot. Positive. What?

My 3 year old nephew has it, too. I knew to insist my sister test him at IGeneX after he had only a Band 41 at Quest and the doctor blew them off.

My daughter has it now, we figured that out in July. Had headaches since January but that was it. Kid is reading all the time, studying, etc, didn't want to run to IGeneX just because she had headaches. Guess I should have.

Sometimes I wonder if we're catching Lyme from mosquitos or what. I never saw the tick on me, nor did we see one on my daugther, nor did my non-outdoor friend.

It really has me depressed. My husband and I talk about moving away from CT, but where?

You are not alone, it seems to hit families in waves, some are all sick, others never seem to get it. Or they have it, are subclinical and one day it will reer its ugly face.

Be glad you know what you are dealing with. Everyone I mentioned found out early and see my LLMD. How lucky they are to have an LLMD from day one. I wish I had my LLMD a year ago, I would probably be cured by now.

At least my experience is helping others...as is yours.

As far as getting it from your Mom, you will likely never know. I wonder the same thing about my daughter...

~webmeg

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oxygenbabe
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Here's another theory: Yes you have congenital lyme, and there is mold in your house. Your brother has congenital lyme, autism and now mold is causing him problems. I feel convinced you have a mold issue. I am sorry for all your suffering but there were so many good suggestions on the other thread, you need to take action on some of them. Get out of that house for 2 weeks, bring only clean/fresh washed clothing, and see how you do. If better, hire a good mold inspector, or just move. Doesn't mean you won't have to treat lyme but lymies living in a mold hell can't get well until they get out of the mold hell, generally.
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Sojourner
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A family generally share lots of geographic similarities...........hell, our dog got lyme this summer cause' we do the same stuff. But not anymore, I think we will vacation in Dubai from now on--------lots of concrete and sand!
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jamieL
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I thought I got Lyme earlier this summer. I had my two daughters tested "just because" last month. I felt sure they'd be negative but NOooo! [shake]

I know my kids have never seen a tick and I bathe them both every night and would have seen if a tick was on them.

So now I wonder if I got Lyme from my mom since birth (I never saw a tick on me, either) but just fought it off until now. My mom told me she had picked a lot of ticks off herself as a kid. If so, I passed it to my girls.

My SIL called me with VERY similar symptoms to mine. She said she went to a doc and told him that her SIL had Lyme and she was wondering if she had it, too. Without hesitation, he said very confidently, "You do not have Lyme." What, no tests? [Mad] He's pursuing the M.S. route with her. She had a known tick bite a few years ago and was fine till she had a baby.

I described my symptoms to another family member and she told me she had the same ones but didn't know what it could be. She tested positive on the PCR at Igenex.

I'm really curious whether or not it's congenital in me. I told my sister and she said she's had a dry, hacking cough for months and mnths and now wonders if it isn't mycoplasma pneumonia. She's had full-blown pneumonia twice. Her daugher is a teen and has aching joints for a couple of years now.... I'm encouraging both to get tested. There's another family member who was diagnosed with chronic fatigue in the eigties and has had joint pain her whole life. I want her to be tested, too.

I swear, it feels like EVERYONE has Lyme.

--------------------
Diagnosed with :yme and mycoplasma pneumonia Aug 08.
Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber

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gemofnj
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Webmeg,

We live in Jersey, but my husband has been working in CT for the last few years. He commutes every week. I went golfing up there with him last fall.

VOILA.. I got lyme and I'm pretty sure it was while I was in CT. Never gave a thought until about 7 months later I was diagnosed by Labcorp (if you can believe that!).

So I dont blame you for wanting to move..

[Roll Eyes]

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ThatColorGreen
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Ignorance and arrogance is what is going on, unfortunately


...and ditto to the whole "it feels like EVERYONE has Lyme" comment.

--------------------
...trying to be the coffee bean, not the egg.

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Larkspur
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I just want to put in my 2 cents - in my long long long lyme journey (exposure as a little girl but I didn't get diagnosed until age 34 when I developed neurolyme)

I had unexplained, sometimes debilitating symptoms all my life, but somehow I "functioned" (i.e. got an MA degree, worked etc) until 2003 when I became bedridden.

So, looking back, I can see clearly that 2 specific incidents of physical trauma in my life contributed to a worsening of my lyme symptoms.

About 6 months before I developed full blown neurolyme I had a car accident and right after that new symptoms started to crop up

I think that the structural trauma of the car accident combined with possible new lyme exposure a couple months later is what put my body over the edge.

At the urging of my LLMD I started seeing a Dr who practices Cranio Osteopathy (this in different from cranial sacral therapy) and his approach totally explains how physical trauma (like child birth) can cause our immune system to plummet

So, in my experience, a person may have lyme that is dormant, and then a physical trauma could defintiely be a "piece of puzzle" in why someone could abruptly become ill

There are many many factors as to why I became as sick as I did in 2003, but the car accident was definitely a factor

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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lpkayak
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A LOT of people are realizing they are sick now.

everywhere i go-often not lymie places. sitting on the beach, camping, church, the grocery...people start talking to me about the weather...i say i just have to sit down...i'm fighting lyme diseae...and then it starts..."oh-i HAD lyme but i got treated" or "my husband got treated-but he still doesn't feel right" or "my cousin-or friend"-whatever. yesterday a woman asked me what kind of birds were sitting on a rock at the beach and the next thing i knew we were having a mini support group meeting-i think 9 people stopped for about a 1/2 hour and i gave ilads.org out to all of them. it's crazy.

but they don't seem to hear you when you say the best thing you can do is get to a real llmd asap

--------------------
Lyme? Its complicated. Educate yourself.

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clairenotes
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We believe my daughter has congenital lyme. However, she did not have any symptoms of lyme, except for some food allergies and mild ADHD (which we mistook for exuberance/joy) until she was twelve years old.

During a 6th grade school camping trip, she fell out of the top bunk bed and landed on her back. Though there were not major injuries at the time, it was not long after that she began to show LD symptoms. The main area of her infection has always been in or along her spine. She began experiencing serious psychological problems not long after that fall along with skin outbreaks.

I very much believe that an injury can trigger LD and co's if they are lurking in the background.

We are also concerned about the thimerasol that was in the vaccines she received, which could be hindering her ability to get well. Metals seem more of an issue for her than they were for me.

This is a multi-faceted complicated illness that requires incredible diligence and patience.

Claire

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Lymetoo
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VERY likely it is congenital. I think many of us here got it congenitally ... then another tick bite sent us over the edge.

I think it's highly possible in my case....and in many others. Hard to prove.

With your mother's history, it sounds VERY likely!

Another possibility would be ... Do you have pets in the home? Your brother could have bart from a flea bite ... from a cat?? or dog?? or cat scratch fever? ..

--------------------
--Lymetutu--
Opinions, not medical advice!

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UnexpectedIlls
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LymeToo-- I TOTALLY agree and was just telling my mom I think he has Bart... He was scratched by an outside cat a few months ago and things started boiling up since than... and he has the swollen lymph nodes in his groin...

Thanks everyone for your input! It really is an epidemic [Frown]

I would have NEVER believed this... UNTIL it happened to me and my family...

Thank you!!

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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DoctorLuddite
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It seems that there are alot of folks who get tested fully expecting -ive results who come up +ve and people certain that they will be +ive who come up -ve, it makes me think that the lab testing itself is completely flawed and has no negative or positive predictive value.

This begs the question: if they tested as part of a routine screening and the result was +ve, should the individual without symptoms do anything?

AND should an asymptomatic +ve try to treat until the test is negative?

If we tested every living human and plot +ves and -ves againcst ill health, would we come up with bell curve distributions?

I don't think any of the testing(including igenix)is valid proof of presence or absence of spirochete.

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UnexpectedIlls
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Dr Lud-- I am a little confused by what you are saying?? Are you saying you don't believe us to be suffering from LD??

So a positive test is not useful in diagnosing LD??

Could you clarify please?

Thank you

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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soonermom
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As we all know, the current tests for lyme are not the greatest, but they are all that we have.

My LLMD said that his predecessor, Dr. Masters, tested someone everyday for a month and that there was a different result each day.

This is because the bacteria is very virulent and is able to change it's "expression" easily and so our immune system responds.

Because the bacteria is very difficult to culture, we are stuck testing for our own antibodies to borrelia. This isn't always accurate for many reasons, including a run down immune system, other infections causing a false positive, all our Ab being bound to antigen causing a false negative, etc.

Most people do not recommend treatment for someone asymptomatic....but how many asymptomatic people are tested in the first place??

Most of us here have gone through numerous doctors and testing to get to this point. We have more than just a positive test from IgeneX to lead to a diagnosis of lyme disease. It is a clinical diagnosis anyway.

It frankly isn't our fault that testing and research isn't what it needs to be. I truly hope that can change with the next congress!!

The only proof I need is hearing my husband tell me how glad he is to have his wife back. I go through ups and downs and may not be 100%, but I have NO DOUBT that this is lyme disease.

When my neuro yelled at me telling me that I couldn't have lyme disease, because it doesn't exist in my state...he couldn't answer my question:

How could I have SO MANY positive bands then???
How could so many bands be false positives?? I guess my point is that however flawed the testing is, it often does add to the whole picture of someone's illness.

It gave me the courage to leave the mainstream medical community and seek an LLMD. I don't even want to think about what kind of shape I would be in right now with out that test.

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

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DoctorLuddite
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Unexpected, I did not say anything of the kind, I have no doubt that you and many others suffer, or that I would suffer if I did not follow the dietary, exercise, and supplemental regimine that I do. The Lyme explanation is the common ground, but there is no consistency, one suffers and tests positive, another suffers more and tests negative, and one who has no symptoms at all tests positive. I just don't feel that there is any consistency in the Bb explanation. Rather than point the finger of blame at some microbe that may or not be present regardless of what the testing shows or doesn't show or what symptoms are present or not, I think of the three fingers that would be pointing back at me that are charging me with the responsibilities of self care, rational inquiry, and open mindedness.

Soonermom makes a good point, the asymptomatic will rarely be tested and that was what I alluded to in my last post. I bet if you test every living person you'd get a 50-50 distribution of +ve:-ve.

I will remain skeptical of Bb as a primary cause of chronic illness unless a test is developed that reliably demonstrates the actual spirochete in tissue or body fluid in the afflicted or those thought to be so, and doesn't demonstrate the organism in the non-afflicted. Antibody tests are woefully inadequate.

The body is self correcting and self healing and this will be the rule as long as necessary nutrients of life are present and hindrances to their normal circulation through the body are minimized or removed.

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Lymetoo
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quote:
Originally posted by UnexpectedIlls:
I would have NEVER believed this... UNTIL it happened to me and my family...

You and another 1/2 million others felt the same way. Or is it a million now??

--------------------
--Lymetutu--
Opinions, not medical advice!

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ThatColorGreen
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I've got a good one: you guys will love this.

One of my colleagues has a friend who used to work for one of the companies that makes the lyme testing kits.

they said how ridiculous the lyme testing was because... get this... 99% of their test kits were not made properly!

...that was the main point i wanted to share...


[group hug] ~Green~

--------------------
...trying to be the coffee bean, not the egg.

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seekhelp
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DoctorLuddite.

Are you a doctor for real? I am not trying to stir up trouble. I just wonder what your background is. I often am amazed at the knowledge level possessed on this board.

The general public couldn't possibly know this stuff. I'm guessing a lot of scientific-minded individuals peruse here.

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soonermom
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DL,

What ever doubts I had about the ability of borrelia to persist, despite treatment, was answered in Cure Unknown.

She cites many animal studies which show, upon autopsy, that it does persist irregardless of treatment.

She also discusses the autoimmune aspect of lyme disease. The "molecular mimicry" of antibodies meant to attack borrelia, attack nerves or joints instead.

I urge you to read the book.

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

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DoctorLuddite
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So if the bug persists despite treatment, but the symptoms come and go, maybe it has nothing to do with the presence or absence of Bb...
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James Marschner
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What about the closest relative to Bb...syphilis?

It takes a very long time to treat syphilis, unless caught very early?

Relapses were common.

It eluded medical science for hundreds of years b/c of the inability to culture the bug.

With the advent of modern serology and the UV scope, we now can Dx it easier, earlier.

Why is it so hard to believe that chronic, late stage Lyme could resist abx for years?

We're missing something along the Dx level. The bug doesn't exist in body fluids like EVERY OTHER bacteria we know of.

Why is it so hard to believe that there is a bacteria that prefers to "swim" thru solid tissue? Solid Tissue is mostly water anyways.

Of coarse, other bacteria may be confounding symptoms and subsequently, the Dx. Opportunistic bacteria?

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James Marschner
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Also, how do you explain the large number of patients who finally recover after several years of abx tx?

Why does it take several years, and also show a very slow improvement during those several years of tx?

Then upon discontinuing abx...relapses occur in a couple months or more?

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James Marschner
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Also, why was the bar set so high by using sick people with diseases like syphilis to set the testing standards for the Lyme western blot? (Steere et al.)

What are the chances of a cross-reactive Ab for band 41 (The flagella band.)? Some of us are: (++) and (+++)?

I could see a low level cross-reactivity...but for more than 2 or 3 antigenic determinants?

Low level crosses would appear as: IND, or (+) at most.

Do you believe in cryptotopes? Existing from a "masking" mechanism utilized by Bb?

Do any other bacteria have this mechanism? Covering itself w/ pieces of cell membranes from the host to hide it's epitopes?

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troutscout
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Obviously this DrL is a piece of work...congenital Lyme is my vote...and I'm not a Doctor...but, maybe that's exactly why we actually can figure it out. we as patients haven't been brainwashed.

Trout [Wink]

--------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
[/URL]  -

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James Marschner
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I think we all take Vitamin D supplements.

I drink Vitamin D milk like it's goin' out of style.

So it would have to be a genetic disposition toward the inability to absorb vitamin D.

Why do Abx help with a vitamin D deficiency?

We've almost all been helped by abx...at least a little. It's hard to tell due to the jarisch-herxheimer rxn.

Why would someone w/ a vitamin D deficiency get jarisch-herxheimer rxn's from abx?

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James Marschner
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It's a simple human misconception.

Anything we can't see, or test for....must NOT BE THERE.

Because some people believe that medical science is ALREADY at the end-all-be-all.

Science is discovering new things everyday. The day before we would have laughed at the idea.

What about subatomic particles? The top quark, neutrinos, leptons etc...

25 years ago people would have laughed at those names.

Doctors are a small population of narrow minded individuals who think they already know everything...so of coarse they are upset when confronted w/ something they don't know about. Especially when it's related to their field.

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James Marschner
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I've had plenty of Dr's upset and visibly angered by my previous dx of Lyme w/ Bart.

I've been yelled at, looked straight in the eyes and told sternly: "Get it through your head! You don't have it!!" etc...

I guess it's like peasants from the middle ages being told the earth was really round.

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James Marschner
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So, is someone going to challenge those of us w/ CDC positive results from their IgG AND IgM westerns now?

What about my (+) IFA results for Bart? False positive as well? A specific Ab against the bartonella genus is going to light up all my RBC's like an X-mas tree?

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Angelica
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Unexpected I hope you get your answers.

I believe the Lyme in my family was passed down from my grandmother and like Lymetoo said when I received one too many tick bites my bug count went over the top and I became very ill.

I also believe DoctorLuddite's info about Vitamin D can be very helpful. I think my family was genetically low. Which came first in my family the chicken or the egg the lyme disease or the low levels of vitamin D? Hard to say but maybe they are tied in together along with mold which I have been exposed to many times. The disease is a complicated ball of wax.

I am very thankful for Dr. L's insight because due to his posting I bought some D3 and it has changed my life for the better. My mind went from grey and not wanting to get out of bed in the morning to color and now I enjoy life much more than I was.

Thank you DoctorLuddite!

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James Marschner
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Why wouldn't Rickets be popular among us if Vitamin D deficiency was at least PART of the answer?
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DoctorLuddite
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You are missing the point, if someone can have a +ve lyme test, igenix or otherwise, and no symptoms and conversly have a plethora of symptoms and a -ive test, then the test is worthless. I am not dismissing the fact that many suffer. I am simply questioning the reasoning used to arrive at diagnosis and the shoot first, ask questions later approach to trying to eradicate something that may not be the true or sole cause of the problems. As I have said, the body is self correcting. If symptoms come and go regardless of presence or absence of bacteria, then the presence of symptoms is related to something else.

Milk is perhaps the worst way to get vitamin D out there, milk is vitamin D fortified. That means D is added, and the type of D added could be lanolin derived D3 or fungally derived D2, both inferior to endogenous D produced by sun exposure or fish derived D3.

Antibiotics may enhance one or the other or both of the hydroxylation steps in vitamin D metabolism, perhaps that is part of the reason why they make people feel better (or herx).

If someone was born with Lyme in their system (something I would doubt, but I keep an open mind) and doesn't develop symptoms until they are 8, 10, 20 or 40, then the syndrome has more to do with host allostatic load than with the presence of the bug.

Rickets can only happen if Vit D deficiency occurs during childhood, adults get osteomalacia or osteoporosis, and I will wager that if you did bone density studies on posters on this site you would find a high incidence of those latter two.

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Angelica
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DoctorLuddite what kind of diet do you recommend?
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DoctorLuddite
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For yeast sufferers, I recommend the specific carbohydrate diet. Got to www.scdiet.org for more info.

For any and all I recommend removing all processed food, foods with anything added or artificial, dyes etc. Eat as close to the natural food as you can. It is more expensive, but I only eat meats, poultry or fish that are naturally raised on appropriate diets, and in the case of fish that means WILD.

Generally, shop only the outer rim of the supermarket, if you travel down the aisles you will find foods that have things added (for freshness etc.) and those things, like BHT for example, represent added detox load to our live-r.

An elimination diet can help to determine foods that aren't metabolized well.

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James Marschner
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The symptoms are vastly different from person to person.

Many people have much different tolerances to pain.

Immune systems are vastly different from person to person also.

I can't see why you WOULDN'T expect just that (Some asymptomatic w/ positive tests.).

Some people are early stage, and some are late. The progression of the disease is directly related to the intensity of the symptoms.

Some of us have had the disease so long...and since it's progression is so SLOW. Why wouldn't you expect a wide range of INTERPRETATION of symptoms from the patient?

Some of us have been living w/ Lyme for decades. After a while you forget what normal is.

It's not until the patient reaches a milestone in the diseases progression that they notice the symptoms b/c they worsen.

Also, some of us don't feel too bad, then begin tx, and get jarisch-herxheimer rxn's which make us realize the symptoms.

Still other patients turn to alcohol or drugs when they feel slightly ill for years. They may do this unconciously b/c deep down they don't feel good and just don't realize it. These people may NEVER realize they are sick so are "asymptomatic".

Myself, I was "asymptomatic" for about 15 years. Then went to the Dr's for mild chronic fatigue, tested positive...began tx...and felt much sicker. Then and only then was I "symptomatic".

Most people DO probably live w/ Lyme in an asymptomatic state...and live w/ alot of problems and die earlier than normal. The problems they live w/ are attributed to something else.

Why can't this be the case?

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DoctorLuddite
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I believe that many people that die earlier than they should are dying from too much medical care, not too little. I notice in newspapers from rural areas that there seem to be more obits of people that have lived greater than 90 or even 100 years than in urban areas...
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James Marschner
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PS: I do agree that the test is worthless. However, there is no test that is definitive for Lyme. Just like with many other diseases. Heck the world's only been working on it since 1985.

Do you know the details of how it was developed? The western blot for Lyme ab's?

The test just points out a possible predisposition to Lyme. If you have symptoms w/ it, and DO respond to abx...how couldn't you have a chronic bacterial infection?

Have you personally ever set-up a western blot and ran it? Then immuno-blotted it? I have ran hundreds of westerns in grad school and can't see how you could get more than 1 or 2 low level cross-reactions.

Or do you mean to say you think the presence of Lyme is as benign as normal flora, like E. Coli?

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James Marschner
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Couldn't your centurionarian-rural area theory be the result of older people requiring a quiet, relaxing atmosphere, and retiring there?

My G.Grandma lived to be 104, and after she hit 80 or 90 she didn't want anything to do w/ crowds or the hustle and bustle of city life.

Her husband was 100 when he died. I don't think he lived anywhere near a city after retiring.

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Angelica
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Thank you for posting that diet. I noticed it said no soy beans. Does that mean no miso soup as well?
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James Marschner
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Antibiotics may enhance one or the other or both of the hydroxylation steps in vitamin D metabolism, perhaps that is part of the reason why they make people feel better (or herx).

Herxing makes you feel worse, not better. Feeling better comes very slow over years. After a while you stop herxing.

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James Marschner
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I'm sure your Vitamin D theory may be true for some.

However, some of us got sick shortly after a bite from a tick...and had healthy lives previous. It seems too improbable that they ALL have vitamin D metabolic prob's.

Is there a test that we could take to see if our vitamin D metabolism is "off"? A test that is 99% definitive? Unlike the western blot for Lyme ab's?

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Angelica
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My life changed for the worse dramatically the same week I presented with a bulls eye rash and had been hiking in the woods and leaning on an oak tree.
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James Marschner
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So , Angelica

Do you think a Vitamin D deficiency is causing your illness? And that the Vitamin D deficiency suddenly gave you Lyme-like symptoms? And all this just so happened to coincide w/ your bulls-eye rash from a tick bite?

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James Marschner
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Then why don't all...any of the children here get rickets?

I know many of us have children that also tested (+) for Lyme ab's, but not heard anything about rickets.

Please reply here if you do have a child w/ rickets aqnd a (+) Lyme western.

I'm naturally skeptical. I didn't believe I was sick w/ Lyme. Therefore I should be open minded about your theory...but it doesn't seem possible. While my Lyme/Bart. Dx. makes perfect sense as my symptoms match almost perfectly.

They don't match Vitamin D deficiency.

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Angelica
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I think my tick bite triggered my tsunami of bad health and I think bartonella was my worst coinfection.
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James Marschner
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Angelica,

Do you think you got Bart first, which lowered your immunity to the Lyme?

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James Marschner
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This thread is the epitome of why getting Lyme is so bad....no one believes it.

Let alone cut you any slack for being ill.

This perpetuates the impending doom feeling and probably increases suicidal tendencies for those suffering.

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soonermom
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James, let me pick your brain for a while!

Since you have experience with actually performing western blots, do you feel that they have some importance in showing that someone has been exposed to borrelia?

I added my WB to my signature, what else could have caused my test to show so many bands?? Especially the #31 ++++??**never had the vaccine**

This is just something no doctor can explain to me. They just want to repeat themselves over and over...that I can't possibly have lyme disease.

WHAT other explanation is there??? Some tried to say that IgeneX isn't reliable, that they have "ties" to LLMD's and have an "interest" in showing positive tests....Only that one doesn't apply to me either because my GP (who doesn't even believe in lyme) signed for my test.

I have reached that point that I don't care what ANYONE else says because I have seen such an improvement with antibiotics.

I guess I am just curious why this is the ONLY disease that you can test positive for and doctors are still telling you that you don't have it.

Is the western blot for lyme so much worse than a western blot for something else?? [bonk]

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

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Angelica
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I received my bulls eye rash and horrific symptoms in the early 90's but was kind of sickly as a child.

Both my parents chain smoked. I had many strep throats and was given lots of antibiotics as a child.. I had such a bad case of mono in high school I was almost hospitalized.

When I was about 8 years old I had spider veins. I also did have at least one attached tick then as well. Spider veins can be a sign of bart and the same spider veins cleared while I was on Biaxin in 2007.

I might have easily had bart and lyme as a child but my bite in the early 90's was the one that made me very ill and started my down fall. I was also bitten again in 2006 after just making an appointment to see a LLMD.

I do feel tick bites and not just low levels of D did me in. I think other things have contributed as well.

I never had any real anxiety until my bite in the early 90's and then all hell broke loose. Maybe I received a very bad strain of bart from that bite?

Hard to say which came first the Lyme or the bart or did I get them both at the same time.

Looking back on it I think my father died from complications from Lyme disease and he never was diagnosed.

I think we lived in an area where there were a lot of ticks and we went hiking often camped and gardened and owned a dog that would run around the hills and return home with attached ticks.

I personally believe there is something to the stories about Plum Island. Maybe the strains of disease are worse then now then when I was a child. I did read where one person thought in 2006 that Lyme disease strains became even worse then before. I did get a bite that year and found the adult tick crawling on my leg and I had red welts all over.

I do know they had infectious disease doctors working on Plum Island they were up to something. One of those doctors is now retired and plays poker at the Bellagio. He told my friend he is surprise I am still alive after going for so many years undiagnosed.

He also told her I should work on treating fungus and viruses as well. He worked at Plum Island and seemed to know more about the disease then some other IDSA ducks.

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Lymetoo
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Sooner....There IS no explanation for the other doctors' behavior. They've been brainwashed by the "party line."

--------------------
--Lymetutu--
Opinions, not medical advice!

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James Marschner
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The western blot separates proteins by size. This is measured by the distance traveled down a porous gel along side of proteins of known size (Markers.) for comparison. The large ones don't travel very far over time w/ the aid of an electric current. The small, short ones travel faster and therefore farther, ending up nearer to the bottom of the gel.

The gel looks like a small window pane, and samples of unwound protein are loaded into wells at the top of the gel. They are unwound so that shape is not a factor in how far they (proteins.) migrate. The proteins loaded are markers of known size length, and proteins derived from the body.

So when stage 1 is complete, you have a rectangular, square window pane of gel with various horizontal bands of varying intensity. The darker the band the more protein is there. So at this point all the bands in the gel represent proteins from the body. Including antibodies.

Then known pieces of Bb (Along with buffers, and an enzyme tag like horseradish peroxidase or fluorescent molecule.)are made into a bath to incubate/soak the gel with the Body's proteins (Many of them antibodies.)impregnated in it.

If you have antibodies against band 41, the appropriate part of the gel will have binding of teh sample of Bb to that spot. It will appear darker when you have a larger titer of Ab's of that type.

The gel is then electroblotted onto a thin film of nitrocellulose.

So the finished product will be paper-like with bands of various intensities on it. Each band can be identified by being measured for size and quantitated by the intensity of the band.

Cross-reactivity is when an antibody binds to a band where it doesn't really belong. If it doesn't belong there...then the binding isn't very strong and can be mostly washed away in the rinse bath.

Ab-antigen reactivity is very specific. Especially for secondary and tertiary Ab's, which are usually the one's that bind.

Therefore, if you get an IND or a (+) there is a small chance that it is cross reactivity. IND much more so than (+).

However, those of you w/ (++) or greater on some important bands....this is almost certainly TRUE specificity, and a real Ab revealing the presence of a real antigenic determinant.

Also, if you have had more than one test...and the same bands show up (+)....they ARE DEFINITELY REAL.

Ab-Ag reactions are by definition VERY specific. So Cross reactivity is NOT rtesponsible for all our positive test results.

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James Marschner
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Soonner mom,

your band 31 (+++++) is certainly real. However, it could be caused by EBV.

But you also have other positive bands right?

Its true that many bacteria have identical structures which would give cross reaction. But thats why the bands chosen for the Lyme test are structures unique to Bb. For example, band 41 is where the flagella is on Bb. Not very many other bacteria have this. One taht does is syphilis.

Thats why the test requires that you be positive for more than just one or two antigenic determinants.

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James Marschner
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One (+) band does not give you Lyme..but it can.

The others may have all been covered/hidden from your immune system.

This test NOT very definitive.

Thats why many have it done twice or more.

If you have 3 or more positive unique bands(IND's- single +)...I would say the chances of NOT having Lyme would be VERY low...maybe 10%?

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James Marschner
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Sooner mom,

you have a TON of positives!

YOu definitely have it.

For your test to be a mistake would be like lightning striking twice in the same place. Worse even. Unless they used the wrong person's blood?

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UnexpectedIlls
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James what do you think of my WB??

ONLY IgG positive---

18+
28+
31+++
41++
45++
34IND
39IND

IgM-- NEG
41IND

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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James Marschner
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I think you're almost better, if not already.

You may have a little Lyme left cuz of the IND at band 41.

Since your IgG shows lots of +'s and your IgM shows almost nothing, shows you've come a LONG way.

Do you have symptoms still?

I wouldn't stop abx until I was more certain it was completely gone tho.

Congrats on your progress!

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UnexpectedIlls
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James.. I am EXTREMELY sick [Frown]

I have been bedridden for the last 18 months of my life... I only found out I had lyme after 14 months of being very ill after getting sick suddenly with the birth of my daughter.

I was dx'd with lyme in May of 2008 with that WB.

I hope it wans't a false DX because I am so ill I cannot even take care of myself or my children [Frown] I suffer with over 50 symptoms every day for over a year... Very very sick indeed.

I am confused now.. do I have lyme or not?? [confused]

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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James Marschner
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Wow!

Thats a surprise. Maybe you DO have Bart. or Babs also?

were you taking any abx that would hit BArt?

Like Zithromax, or Levaquin?

Was your IgM like that before? Or was it your only test?

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Angelica
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James are you asking Unexpected or me?

Unexpected I do hope you start to get better soon!

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James Marschner
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I think what we're looking for is a reduction in positives from our IgM, like unexpectedills has above. Even tho still sick.

IgM is supposed to represent Ab's that your body is currently producing.

So, if you're cured, your IgM should be totally clear.

IgG is produced by "memory" cells. They are supposed to last "forever", but tend to fade over time.

Like chicken pox...you get memory cells which can produce advanced IgG Ab's -against Chicken pox if stimulated. However, some people have gotten it twice. Rare, but happens.

But the whole mechanism where Bb hides under a blanket of your own body's dead cells' membranes interferes with what Ab's you make against Bb. This fact really complicates matters and makes things uncertain. Like unexpectedillls IgM results....should be close to being better.???

There are lots of possible, obscure reasons for these exceptions.

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James Marschner
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Angelica,

Can you post your 1st test results next to your 2nd test results?

Did your IgG or IgM change more the second time?

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Angelica
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I was treated for babs but not retested for it since treatment and I feel I still have bart yet never tested positive for it on 3 different tests including a Fry blood smear.

I did do zith with Mepron then Malarone and Biaxin with Amoxy. Then Tinda-snacks. Lately I have gone herbal and am not on any abx.

Yes it did change but I received another probable tick bite after my first test. I will post my first test next to my second now.

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James Marschner
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I think you can tell if you have a co-infection by your symptoms.

I'm more familiar w/ bart. symptoms as I am IFA + for it.

RBC's lit right up.

Bart gives you terrible psych stuff. Especially in and around thhe eyes.

Dizziness, brain fog, RAGE attacks, intense anxiety.

One weird symptom from bart that tipped me off was the onset of offensive smells.

I started noticing smells that I didn't notice before. Many of tehm being foul.

I thought it was a sign I was getting better. But I'm not even close?

Thats brings up another thought. maybe you don't feel better and better the closer you get to a cure? I know the first month of tx was the worst, but the rest may be a rollercoaster ride?

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James Marschner
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unexpected,

don't be confused. your IgG was positive...so you definitely have Lyme.

Your IgM results don't over-ride that.

It probably means that your immune system sucks now....damaged, suppressed or something. Therefore it can't make NEW Ab's from IgM producing cells.

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James Marschner
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Unexpected,

you may be sicker now due to the damage to your immune system.

So now your body is MORE reliant on abx. than ever.

So reliant that it reduces its new IgM ab's.

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Angelica
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I am not the best typist and it took me along time to edit and add my other test yet after I hit the edit button it did not show up so I will try again in a few minutes.

I for sure have bart in my opinion.

whoops my edit did show up after all I must have been looking at unexpected's results not mine

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UnexpectedIlls
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Does this mean I can never get better???

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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Angelica
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You will get better!!!!
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James Marschner
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If we stick to our protocols...we'll all get better!

just cuz your IgM isn't up to snuff doesn't mean it's completely gone either. Just operating at a lower level. Maybe due to the large amounts of Abx we all use?

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James Marschner
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My WB may show the same thing yours does.

I've only had the one.

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James Marschner
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Yeah,

Remember, if our immunity shut down, we'd all be in plastic bubbles!

Since you aren't...your immune system is still truckin'.

Goes to show how complicated this illness is.

If it wasn't we'd all be cured already.

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