posted
Hi, everyone! I'm new to this site but have really enjoyed reading the postings. So much to learn! I just had the ELISA and tested negative for Lyme disease. However, I have so many of the classic symptoms, that I'm wondering if this might not be wrong. Has anyone out there tested negative for the ELISA and later turned out to actually have the disease? I'd be interested in knowing if that happens. Also, I have a painful, unsightly rash on both legs - doesn't itch, just painful. Does anyone else have anything like this? I've had it other places on my body, but it's worse on my legs. Thanks for all your help! K.
Posts: 4 | From Roanoke, Virginia | Registered: Nov 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hey hotflash, I had a couple negative ELISA's (over 15 years) before testing positive with a Western Blot test at Igenex.
And the ONLY REASON that I got tested at Igenex was because I pushed and pushed.
I think you'll find many people here with a similar history.
If you are interested in comparing the rash on your legs to known Lyme rashes, there is a page of pictures at the Canadian Lyme Disease Foundation.
Yup, I had a negative ELISA for LD and was diagnosed with MS as a result. For four years the Lyme spirochete continued to infect me. Had a child, passed LD on to him and then we figured it all out with a positive Western Blot.
I suggest finding a Lyme literate medical doctor (LLMD) to order your tests as there are many and it's not simple. Many people are diagnosed by symptoms but only LLMDs can do this for you.
Good luck!
Posts: 261 | From San Mateo, CA | Registered: May 2005
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WildCondor
Unregistered
posted
Welcome!
The ELISA test is worthless for diagnosing Lyme disease. The Western Blot is not much better. Lyme disease is a Clinical Diagnosis. You must get to a Lyme Literate Medical Doctor (LLMD) who can test you for co-infections and give you a full diagnostic for Lyme based on your symptoms. If you let me know where you are via email i can hopefully help you find a doctor, as will others!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Many test negative by ELISA, which has up to a 50% failure rate (some say it's only 30% accurate).
Unfortunately, most ducks (docs) use it as the first step in a two step process -- i.e., they won't do a western blot (the more accurate test) unless your ELISA is positive.
Even if you manage to convince them to do a western blot, they'll do it at some junk lab.
Find a good Lyme Literate doctor. Get a good, meaningful test at IGeneX. Look them up at their website at http://www.igenex.com. Talk to your doctor about your symptoms - a smart doctor experienced in Lyme can diagnose you based on your symptoms and history, and will use testing only as confirmation, since testing is pretty iffy.
To give you an idea WHY you need an LLMD, there's studies documenting a whole buncha people with culture-proven Lyme (i.e., bullseye-rash, skin culture with borrelia bacteria cultured out), whose blood tests continued to be absolutely NEGATIVE for Lyme disease. Most idiot duck doctors are clueless about this -- i.e., you test negative, therefore, you don't have Lyme, you must just be depressed.
Many here, including me, were first negative by ELISA. It's probably more common that not! I was later CDC positive by western blot.
Get checked out by a good LLMD. It will make all the difference!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I had two ELISA test both were negative. Every other test including a PCR, LUAT, and WB were positive. The ELISA test is worthless. I even had a duck tell me no I did not have Lyme because the ELISA was negative. When I asked him how accurate the ELISA was he said the results aren't worth the paper their written on. How is that for contradiction? No you don't have Lyme, by the way the test is garbage.
Posts: 649 | From United States | Registered: Dec 2003
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posted
From what I hear these ELISA tests don't mean much. I actually tested positive through the ELISA test and then positive through the WB from IgeneX but so many times I've heard of people who test negative through the ELISA test only to test positive through the WB (by a decent lab).
--David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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BostonLyme2005
Unregistered
posted
Everyone here tests positive with Igenex, but not me for some reason. My results state that on the first try, it was +, on the second try, it was -!
My LLMD says that one band did show some evidence of being exposed to the lyme germ, and that if I did not have lyme, then I have something just like it, meaning, I must have lyme.
I am wondering really wondering if all the abx that I have taking has sent these little bastards into hiding, so even Igenex labs could not find them.
How many people have to test again at Igenex? Is it worth it to have a WB from my local hospital now after taking tetra for 2 weeks?
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posted
I tested 5 times on an ELISA from Quest and one western blot from Quest. I then tested positive on a western blot from IGeneX.
Posts: 146 | From New Jersey | Registered: Jun 2005
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