Newbie Here With Ttt, Vvs And Lyme Questions

[srb]

JuneFlower - thanks for that info, it's nice to know others have done the Igenex route and other parts of the 'gauntlet.'

Christy - thanks for all of that background info! I am getting a bit more curious about the EDS issue, but kind of afraid to ask my primary for a referral.

[srb]

Thought I would write in a short update for those of you who offered so many helpful suggestions and conversation. I did finally have the Igenex Western Blot done and it was also officially negative! The nurse who called with the result said I had a "few markers" and that I could follow up with the doctor if I was still experiencing symptoms. I'm not sure what to do there since this doctor was a Lyme specialist pretty much exclusively. I'm not sure what he could do for me. It was interesting, though, that when I met with him he said I reminded him most of all of a "POTS person" and he also commented on how much my joints were cracking and popping. I am relieved to have put the Lyme question to rest (I guess) but one always feels that little tinge of disappointment when a possible cause for all this mess is ruled out.

I have continued to struggle to restart my exercise routine, but am managing food and fluids as best I can. What I find maddening is the unpredictability of this condition... feeling pretty good one minute, lying on the floor in a pre-syncope state the next.

I'm starting to consider asking my GP for help finding a specialist who might consider testing for EDS, but I'm never sure how to approach specific questions like that without getting labeled a hypochondriac! I have fallen arches, a deviated septum and scoliosis since childhood, slow healing, easily marked skin, constantly popping/grinding joints with pain (but they don't go 'out of joint') and I have always sweated very little - plus all the dysautonomia stuff of course.

[JuneFlower]

yes I'm not surprised about the lyme test. Mine was called borderline positive. Our infectious disease specialist here at the hospital feels that Igenex reports everyone as being positive for lyme. He doesn't put any stock in their lab. Interesting. Not sure if I agree. I still have CFS.

June

[looneymom]

This is not the first time I have heard this comment made about the Igenex. So I have decided not to waste money on doing the testing for my son.. My son has had testing done by other labs for lyme and coinfections. They were negative.

Srb Has this doctor checked you for any co infections or virus such as mycoplasma. My son has Myco P in his body. Lyme doctors are very experienced at treating the Myco P and other viruses. Could there be a chance that you be dealing with a virus that comes out and plays when your body gets sick or your energy levels come up? Just a thought.

[srb]

Regarding the Igenex issue, yes, I figure I can be quite sure I don't have Lyme since even that came up officially negative! I knew I might be spending the money only to be right back where I was, but honestly it was worth it to me because I had a known tick bite and it was always in the back of my mind. I just didn't want to spend the rest of my life wondering...

looneymom - I have never heard of mycoplasma... I only saw this doctor once so far and I've been debating about whether to go back. I thought it would probably be a waste since he only specializes in Lyme, but perhaps I should consider a follow up to see if he has any other suggestions. I don't think I was tested for co-infections. Thank you for the ideas!