negative lyme test

[Stephielynn]

I am wondering is anyone that has a current diagnosis of Lyme Disease had a negative ELISA test when first tested.  I had a rash with a bullseye a few years ago and have been going downhill ever since.  All my symptoms match Lyme Disease but my test was negative.  After some testing my doc thinks I have myasthenia gravis, but I have more symptoms that do not go with that disease. I did not go to the doc when I noticed the bite because it didn't hurt.  I just thought it was a spider bite.  I only recently looked up a picture of the rash online after one of my docs mentioned that my symptoms sounded like lyme disease.  My test was negative but most of the other tests are negative also.  I was a marathon runner and very active.  I now have trouble doing basic things, my hair is falling out and I constantly ache all over.  I am not depressed and my thyroid is sometimes normal, sometimes not. Any thoughts would be appreciated.  My doctors are at a loss.  I just want to feel normal again.  Running was my only hobby and now I have trouble walking up a flight of stairs.

[JackieCalifornia]

Welcome.

The ELISA and Western blot tests are not very accurate, and even the CDC (Centers for Disease Control, part of the US government) agree with that statement.

One reason the test may have been negative is this:  the test measures antibodies made by your immune system to fight the Lyme bacteria.  After a while (weeks, perhaps months), your immune system stops reacting.  If you are tested after that happens, you may get a negative test.  It is a 'false negative' because you can truly have Lyme, but the tests do not show the infection.  (Sometimes a doctor will give a short course of antibiotics if Lyme is suspected, and then will re-test for Lyme, because the antibiotics cause the immune system to begin to make antibodies again, which can then be measured by the tests.  Perhaps the doctor who talked with you about Lyme would do that?)

Lyme can also affect functioning of the thyroid gland, and your other symptoms are common to those with Lyme.

It is also possible to be infected by other diseases carried by the same tick, and those need different tests.

Many of us with Lyme never saw a tick or got the rash, so you have a good basis to seek further testing and treatment.  That is what I would do.  

Many of us have seen many doctors before finding one who understands Lyme and how to diagnose it.  

I just searched online "germany lyme disease" and there were many interesting links, including this one:

www [dot] lymeinfo [dot] net / international [dot] html has these links:

Germany - Borreliose Selbsthilfe Berlin
Germany - Borreliose-epidemie Blog
Germany- Borreliose.de
Germany- Lyme Borreliose Informationen Online
Germany- Borreliose Information
Germany- Borreliose Zeckeninformation
Germany- Borreliose Selbsthilfegruppe Ulm

Online Forums
    EuroLyme Discussion Email Group
    Lymenet Europe Forum

Viele Glueckwunsche fuer Ihre Gesundheit.

[mooksmom]

If it was me...I'd get a different kind of test for Lyme, there are several of them, and I'd also be seeing the BEST Lyme disease expert I could locate close to me...or an Infectious Disease specialist. I am in NO WAY inferring that your doctor is not doing what is right. BUt, the classic rash...is a quite an indicator and I know many people who have had NEG Lyme tests at first and some of them ended up ill for YEARS...going doctor to doctor. A second opinion might be in order...your decision. Hope this helps.

[wonko]

My Lyme tests were negative.  I had 3 or 4 negative ELISAs, and my spinal fluid also tested negative.  I did eventually have 1 equivocal ELISA.

My Western blot through Igenex lab showed only 2 bands, only one of which was Lyme-specific.  However, I've had an obvious response to Lyme treatment.

I never had the rash, but it is my understanding that it is a specific sign of Lyme disease.  It is also my understanding that you may test negative if the test is given too soon after exposure.

I echo the above advice to consider a second opinion.

[ree4tu1]

ALL my lyme tests were negative, but my CD57 and brain SPECT Scan revealed Lyme activity.  The other tests are only about 30-50% accurate including the spinal tap.  

[22dreams]

This brochure has a couple paragraphs on the 2nd page about why testing cannot be relied on to diagnose Lyme but rather clinically (exposure + symptoms) diagnosed.

What Every Primary Care Physician Should Know About Lyme Disease
http://ilads.org/lyme_disease/Primary_care_brochure_08_08.pdf

I never had the ELISA done b/c the PCP I went to (sought out) was aware that the number of false negatives was astronomical. In his patient population, he recognized that the clinical symptoms and the tests didn't match up. Y'know, he was logical about the whole thing. Having caught a case early on in himself (as well as the partner in his practice), they had 1st-hand experience with symptoms. But they were GPs, and neither felt compelled to take on treating neurological lyme aggressively and opted to refer out to LLMDs.

I would actually place the accuracy rate lower than mentioned given the behavior of the spirochete (read the brochure) and also the fact that everyone's immune system is not the same whether from having a longer-term problem (whether they know it or not) or inherited/genetic component. It's about how well your immune system recognizes the invader and/or how well the invader evades your immune system. IOW: whether your body will actually generate the antibodies to Bb or not. Lots of people tout the western blot but even those from specialty labs that look for reaction to even more specific bands than others can't be relied on to say "no you don't have lyme" because of these factors.

[Stephielynn]

Thanks everyone for your help.  I will keep fighting to get a diagnosis of whatever it is.  Right now they think it is Myasthenia Gravis since my EMG showed that.  If it is Lyme, I could have been bitten in California, Alabama or Georgia.  I was in all three states in one month and spent a lot of time in the woods, grass, etc..  I used to run daily in the tall grass on paths through the trees.  My rash was on my calf.  I am dealing with the military system right now.  My rash was several months before I arrived.  I thought it was a spider bite until I looked at a picture online recently after one doctor told me that I have all of the symptoms for Lyme.  I will let you know what I find out. Thanks so much for the advice.

[JackieCalifornia]

One caution:  if you were bitten in the US, the Euro tests may not ever show positive, because there are many, many different strains of Lyme, and those Europe are different from here.  And by many, I have read that means 'hundreds' -- and the tests don't detect them all, which is why diagnosis by symptoms and history is such a critically important piece of information.

In this age of Fed Ex, you might consider with your docs getting a test kit from IGeneX in California and sending your blood samples here for analysis.  They have a website.

I would stay in close touch with the doc who told you you have all the symptoms of Lyme:  he sounds like a clear thinker.

Best wishes, and let us know how you are --