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Symptom fluctuations? and... igenex results?

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Lyme Disease
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Posted 7/4/2014 7:36 PM (GMT -5)
I never did post my igenex results, and though my LLMD and LLND are convinced I have Lyme, I just want to get your thoughts opinions...

IFA: 80

PCR Multiplex-B urines: Plasmid-B burgdorferi - positive

Igm - negative

**31 IND
**39 IND
**41 +

(What do the * mean, anyway?)

Igg - negative

**41 +

So the western blot was negative, but my PCR urine was positive. So LLMD said I have positive Lyme tests based on that...
My confections all came back negative which my LLMD says is weird. I still suspect I have at least one... I think Bart, but of course I could be wrong.

What are your thoughts? Could it be something else??

My symptoms have been all over the place lately. I had about two weeks in a row that were pretty good (certainly not symptom free, but functional) followed by a week of crap! And my symptoms fluctuate from day to day so much... One day joint pain/muscle pain, then severe depression, then extreme fatigue, followed by swollen throat feeling/air hunger, migrating pains, etc etc. I don't feel like there's much of pattern that i can see yet.

Just worried it could be something else...

Anyone similar with their symptoms?

Been treating 11 weeks now.
Posted 7/5/2014 7:24 AM (GMT -5)
The asterisks indicate bands which, when reactive together, indicate a high likelihood of Lyme infection. In your case, you have a reaction to 3 starred bands 31, 39 and 41 (most LLMDs consider IND as positive because, well, it isn't negative!)
IgG and IgM are indicative of the duration of the infection.
Bands 31 and 39 are Lyme-specific, and 41 indicates the presence of flagella (the "tail" Lyme bacteria use for propulsion).
I would bet my bottom dollar that you do, indeed, have Lyme or a Lyme-like infection. Migrating and transient (fluctuating) symptoms are classic. Dont look for a pattern - Lyme doesnt follow one!
Your LLMD should assume and be treating you for confections regardless of your test results. Be patient and stay the course. At 11 weeks your symptoms will just be starting to resolve. The healing is slow and subtle.
Plan on 18 months to 2 years of treatment if you have a long-term infection. And GOOD LUCK!
Posted 7/5/2014 7:56 AM (GMT -5)
Thank you so much for the response. It got my mind back in the right place.

I wish patience was more of a virtue of mine.

I start freaking myself out and questioning my doctors, thinking it might be something else.

With everything I've been through the last few months my faith in doctors is, well, I have no faith in doctors anymore. (Some others here can relate, I'm sure)

My LLMD seems to be a good doc and has treated many many patients over the last 35 years, including her own son, who is now perfectly healthy. I need to trust.
Posted 7/5/2014 9:30 PM (GMT -5)
Glad to help. I know how frustrating it is to keep backsliding. But measure your progress based on how you feel at your best. My best a year ago was about 40% of my 'normal.' Now I have days when I feel like there's nothing wrong with me! But not every day - it's a long road back.
Hang in there. You're on the right track!
Posted 7/5/2014 11:55 PM (GMT -5)
Thank you so much vt farmer. I really needed to hear that also. Been on abx for 12 weeks and felt some symps were abating. Then last couple weeks started having more bad days. Got really frustrated. I also need to be more patient but after ten years of being sick it is really hard.
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