posted
In 2004, I was tested for Lyme using the WB. My results were stated as 'reactive" or "non-reactive". On the IGG, I had one reactive band (58). On the IGM, all returned non-reactive. I am considering going thru the testing again as symptoms have not subsided. I was dx'd with fibromyalgia last year by a neurologist after several years of testing. My mother was dx'd with lyme a few years ago after 10 years of suffering. Just wondering what your thoughts might be....
Thanks, Lisa
Posts: 22 | From Texas | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would get tested again by IGeneX and see an LLMD for possible diagnosis.
I'm not sure what band 58 means, but I'm sure someone else will post about it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
DEFINITELY get tested thru Igenex lab in CA. www.igenex.com
I was dxd with fibromyalgia in 1980. I HAVE LYME, NOT FM!!! I was not dxd and treated until Aug 2000.
I believe I've had Lyme since I was 8 yrs old. I don't know what part of TX you are from, but there is plenty of lyme there and tons of misdiagnosed people!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank you all for the quick replies. I have checked out the Igenex site and will probably order a few of those tests. I am going to ask my neuro to sign it for me and hopefully he will comply. In the meantime, I have done some research and found ONE doc in my area that specializes in lyme. I live in Houston, so I know lyme is prevelant here, but I spent 8 years in NY, specifically living on Long Island (which is where my mother was biten and later dx'd). I recall being bitten while visiting my grandparents in NJ while in high school. I also did a lot of backpacking in high school and would come home with ticks. I have researched lyme symptoms and seem to have every single one of them. When I took my first WB, the rheum told me even though one band was "reactive", i did not have enough bands to be dx'd with lyme. My mother, who suffered for years, never had any bands react, and was only dx'd via Igenex.
I have always felt that I had lyme, but after years of going doc to doc feeling miserable, I stopped pursuing it. I think I need to go ahead and have the Igenex test and know once and for all.
Can you tell me which tests I should order? My mom did a urine test where she had to take antibiotics and collect her urine each day.
Thanks much!
Lisa
Posts: 22 | From Texas | Registered: Aug 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
At a very minimum, 188 and 189... western blot IgG and IgM. (costs around $190, pay out of pocket then request reimbursement from your insurance).
You can (and should) do co-infection testing too but let an LLMD guide you thru that.
Expect massive skepticism and disapproval from your neuro. Expect to hear IGeneX run down, or the claim that they give everyone a positive. NOT true; they're top notch...but do be prepared!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by Michelle M: At a very minimum, 188 and 189... western blot IgG and IgM. (costs around $190, pay out of pocket then request reimbursement from your insurance).
Ditto to that!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
So I have been trying to do some research on this and I am soooo confused. My brain just can't focus on all this info. I have read that band 58 is heat protein. What does that mean? In the reading, it sounds like band 58 does not fall in the CDC positive category, so maybe it's nothing???
Posts: 22 | From Texas | Registered: Aug 2007
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I am a newly diagnosed LYMIE and had Fibromyalgia for 15 years and daily chronic lightening sharp headaches for about the same time. My WB was IGeneX postive, CDC negative. I am also an RN and have done extensive research on the subject.
This information is based upon what I've learned so far, but all the expert LYMIES out there can correct me if I state any wrong info. I'm counting on you all!!!
First of all, you should see a LLDD before you order any testing because of the following info. If you are symptomatic, which you are, and your IGeneX test is negative, your physician should put you on 7-10 days of antibiotics, then take you off for 10 days; then, at this point, your WB is repeated and most times will then display the positive bands needed to diagnose you as LYME postive. Many, many times, the WB is negative due to your depressed immune system and hibernation of the bacteria.
Once you are put on the course of antibiotics, your immune system will be stimulated, flare up, and begin attacking the bacteria creating a hostile environment, if you will. When you stop the antibiotics, there is reproduction of new bacteria coupled with those nasty bugs coming out of hibernation, and your WB will then show the specific Lyme bands as postive [it's like stirring up a nest of snakes that have been hibernating in a quiet state who then become hostile and begin moving about frantically].
That's the best description I can give you to help you, as it did me, to understand this process.
If your WB is still negative, LLDD's can base a positive diagnosis upon your history of symptoms and by prescribing you a trial of antibiotics to see if you respond and feel better. Many, many pt.'s end up diagnosed in this manner, so it's very important for you to see a LLDD. Sometimes in medicine, you have to base a diagnosis on pt. symptomology, not testing results.
My mother recently visited her Rheumatologist [she has Shrojen's and Osteo/Rheumatoid Arthritis and mentioned to him her daughter had Lyme Disease. His response: "Oh, we don't have Lyme here!" Well she demanded to be tested and of course he orders the non-reliable Elisa test and she tested negative. So, many physicians including specialists[and he's a Rheumatologist-go figure-] are in denial and are not up to date on testing reliability and end up ordering the wrong tests.
Hope this helps!
Regards,
Lisa TickTock
Posts: 57 | From La. | Registered: Jul 2007
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