This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
I would appreciate some experienced feedback. I recently got my iGenex testing back and I was positive IGM but not IGG. An Infectious Disease expert who specializes in Lyme said the test was a false positive. I have been dealing with issues for a few years, and I have been under the assumption the are some mild autoimmune problem...migratory joint pain, fatigue, dry eyes. I have been tested for everything under the sun and show no inflammation in the blood. Any help would be greatly appreciated. Not sure where to go from here...
You seem to find yourself where many of us have been, so happy to share information and views with you.
I'm impressed that your ID doc would test through Igenex labs -- my nonLLMDs refused to use Igenex and would not give any weight at all to the tests.
That said, your ID doc may be interpreting the tests in a nonLLMD way nevertheless, because that's the official position of the IDSA (Infectious Disease Society of America), the main MD group for infectious disease (ID) doctors in the US.
At truthaboutlymedisease [dot] com, there is a list of the bands and how LLMDs tend to interpret them. Here is what that list says about the results you list in your post (Bb = Borrelia burgdorferi, the scientific name of the Lyme bacteria] -- also note that any band labeled as 'specific to Bb' means that ONLY Bb will give a positive result on this band, so this can't be anything but Bb, meaning Lyme]:
31: outer surface protein A (Osp A), specific for Bb, has cross-reactivity with several different types of viruses
39: is a major protein of Bb; specific for Bb
41: common to all spirochetes, the curly bacteria group that includes Lyme, so NOT specific to Lyme, but could be Lyme
58: unknown, but may be a heat-shock Bb protein [in other words, may Bb, maybe not]
83-93: specific antigen for Bb, probably a cytoplasmic membrane
So, yeah, this is looking like Lyme, from my non-medical reading.
Whether these are IgG or IgM does not make a difference, to my understanding -- IgM means a more recent infection, and IgG means an older or earlier infection, but there are no magic cutoff dates by which your immune system comes to a screeching halt on IgM and starts making IgG. It's an indicator, not a commandment. And everyone's immune system reacts differently.
And the biggest rule of all, to quote the website above: "No matter the results, please remember Lyme Disease is a clinical diagnosis, [and] you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs. If you have symptoms, you need treatment."
LLMDs and nonLLMDs read these tests in very different ways, and nonLLMDs like you ID doc may well be are very strict in requiring a certain number of bands with enough ++ marks to meet their arbitrary requirements. These tests are all gray, no black or white.
The short list of physical symptoms you name would cause me to go find an LLMD, even if you have to mortgage the dog to do so. Take copies of your tests to an LLMD, but don't feel compelled to tell your current doc you are getting a second opinion. I got a VERY negative reaction from nonLLMDs who knew I was seeing an LLMD -- the nonLLMDs think the LLMDs are committing malpractice, and want nothing to do with patients who might be harmed and have backwash onto the them, the nonLLMDs.
Also, ID docs think they are up to date on co-infections, nasty other diseases carried by the same ticks, but in my experience, the docs are not up to date with how widespread these diseases are. The second time I got bit, I took the dead tick out of my leg and showed it to the doc, had huge symptoms of Ehrlichiosis (a coinfection), and he refused to test me or see me again.
My best advice is to find an LLMD and take copies of your tests for another review. Sometimes these LLMDs are hard to find and are $$, but it's either that or be sick indefinitely, not to put too fine a point on things. If you were in my family or were my best friend, that is what I would tell you to do.
(And always keep your OWN set of test copies from all your docs. History is important sometimes, and docs' files are a mess and their staff hate making copies.)
If you need help finding an LLMD, my usual first step is to fire up google, and type in "LLMD Topeka" or whatever area you're looking for.
Also look at ILADS [dot] org, under the tab 'About Lyme', third item down, Burrascano's Diagnostic Hints and Treatment Guidelines. It's long, it's kind of technical, but it's the motherload. ILADS is the un-IDSA when it comes to Lyme.
Hi, I agree with Jackie (who has way more experience with lyme than myself). My Igg recently came back positive and my Igm did not. I see a LLMD and he definately believes without a doubt I have lyme based on the bb specific bands and the symptoms I present with. Like Jackie said, fine a LLMD and at least start getting some treatment. I have read on many different sites that LLMD's would consider it a positive test with only band 39, as this is supposed to be a highly specific one. Mine was an IND the first time and then after a few more months on antibiotics, it turned to a full positive. Hang in there. I have been dealing with this for only eight months and its amazing how it can turn your life upside down. It's nice to have these forums to ask questions to each other. Good luck.
Try CALDA, California Lyme Disease Association, and/or just google around your geographic area, like 'San Diego LLMD'. You may have to try a few different geographic search terms.
California is, I believe, a 'freedom of conscience' state, in which MDs have the right to practice as they believe appropriate and cannot get their licenses yanked easily for going against the IDSA standards of diagnosis and treatment. Texas, on the other hand, is quite the opposite, from what I read, which is why finding a Texas LLMD can be even more challenging.
See the top of this page, on the right side, where it says "inbox // logout // my shortcuts"? If you see a little number next to 'inbox', click on it. I'll send you a private message there in a minute.
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