fluffyluggage
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Hey Debra, We've kinda had this discussion before on this forum, and you're so new I'm sure you haven't seen it! LOL...I can't really explain it as well as Tom did, but part of the problem with testing for WB is that it really depends on how you are doing at the time you are tested, among a TON of other factors. WB basically tests for antibodies against Lyme. Part of the problem with testing for antibodies is that your body has to recognize Lyme, has to make antibodies, and the antibodies have to be free-floating in your bloodstream. However, with Lyme, most of the time, the antibodies are destroyed by the LD itself. The other problem is that often, the LD changes, so that your body is stuck screwing around trying to figure out what it's making antibodies to. So, there are so many different strains. And tests are just so imperfect. So, those are just a couple reasons there why your tests could be so different. Third reason: All bands aren't reported by the different labs. Igenix and Fry labs are the only 2 labs in the country that report all bands for WB Lyme tests. Most people aren't aware of that. Those of us who've been into this long enough get a good idea. And please don't get the idea I'm trying to be uppity. I'm really not, just trying to share the info!  But, the bands that are most specific for Lyme (and 2 of them have been isolated for vaccine) are 25, 31, and 34. All 3 of them are eliminted from reporting in every lab except for the 2 I just mentioned. So, how most people can get positives by CDC or FDA standards is beyond me, when your 3 most specific bands for Lyme are eliminated from reporting. How you EVER got a WB positive is beyond me! Given all of those reasons, you can see why you got confused, and why our docs have no clue what they're doing. It pretty much takes a specialist to deal with Lyme, which is why very few of us can rely on a doc who's NOT an LLMD. Julie is a very lucky member here, her doc actually LISTENS when she speaks and has taken all her info she brings. LOL--go figure. I can't even get anyone to listen to me at all! What a gem! Anyway, that kinda gives you, I hope, some idea of what you're dealing with. I have gathered, thanks to some really wonderful members here, a bunch of different links to websites that can help explain some of this stuff and may be able to help you understand more of this, if you'd like to PM me for them. I think there are about 5 or 6 sites I have. I'll be glad to give them to you so you can read up more at your leisure. You'll be surprised at what you may learn! *hugs* Jen Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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