Posted 3/28/2017 8:19 PM (GMT -5)
Sorry in advance for the long post. I'm well aware of the Lyme war situation and wanted to share about my ID specialist appointments recently. I'm in the market for a new llmd as I'm having credibility issues with my current naturopath. Ever hopeful, I got a referral to an ID specialist (actually 2 different ones) with hope I might luck out and get treatment via blue shield.
Well the first id specialist I saw, came into the room and the first thing out of his mouth was that igenex is experimental and therefore unreliable. Wouldn't treat me based on my igx results. He said he would send me lab slips for tests he deemed appropriate when he found a local lab to do them. I felt like he blew me off. He said that there was a very low suspicion of tbi because my "chronic complaints are without classic findings e.g. no anemia, LFT (?) or hepatosplenomegaly". He said "we don't believe in Chronic Lyme". He also said Lyme and Co aren't prevalent in northern California, the North East is predominantly where tbi is found.
He did recommend some interesting tests but has yet to give me a lab slip for them. Interesting that he suspects hiv in light of the facts that I'm straight, and have been monogamous with the same wife for 35 years. This guy had the worst bedside manner I've ever seen in a medical professional, he was outright hostile.
The other id doc was more personable but uttered the EXACT same words "we don't believe in Chronic Lyme disease." Surprise surprise, he said igenex was an "unvalidated platform with and not standardized"
Between the 2 they ordered babesia duncani pcr, Bartonella henslae IFA, Brucella, q-fever, Lyme C6 peptide, and blood culture. Also ordered hep-c, tb, hiv, syphilis, autoimmune stuff, igG, ige, metanephrines, heavy metals, toxoplasma, tumor markers, lymphocyte subset panel and more.
I had the blood drawn for the 2nd doc's order yesterday and it was a lot of blood. There must have been >10 vials plus the bottles for the culture. It will be helpful regardless to have those test results. Maybe there's something else, though I doubt it.
So far in this whole 7 month ordeal, I've had many blood tests, CT scan of torso, cardiology workup, colonoscopy, upper gi, laryngeoscope, cd57, on and on.
So far, the only abnormalities have been:
Igenex Lyme wb indeterminate igx, negative cdc. Babesia pos, Bartonella pos.
Low free testosterone, high 6pm cortisol on 4 point saliva tests (other 3 points normal) slight elevation of ebv igG early antigen, na, and vca. That's it. Thoughts?
I'm willing to entertain possibilities. I had to get my annual tb scratch test yesterday required by my employer from an occupational health clinic. There was a questionnaire that stopped me cold, it listed all my symptoms! Seriously doubt I have tb as there's no indication on my arm if a reaction.
I couldn't find the thread again, but the other day I read somewhere on this forum that igenex was "notorious for false positives on the coinfections". Has anyone ever heard of that?
Thanks again for reading my schpiel.
David