Need labs help!

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anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 5/11/2009 5:41 PM (GMT -7)   
Hey all,

I posted a couple weeks back that I've been diagnosed with "fibromyalgia without the presence of tender points" recently, after 4 years of widespread pain, which has now evolved into muscle twitching, heart palpitations, neuralgia, and joint pain. The rheumy mentioned that "some bands" came back positive on my Lyme test, but it was considered negative.

After getting some advice, I requested copies of the lab work, and it says the EIA (I assume that stands for Elisa - maybe?) came back positive abnormal, with a value of 1.19, where the normal range ends at 1.09.

But the Western Blot had only band 41 that was present, abnormal...and that is not Lyme specific, is that right?

In your opinions, should I let it rest and be confident that Lyme is not my issue, or should I request further testing?

Thanks!

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 5/12/2009 4:37 PM (GMT -7)   
My daughter has Lyme and often shows no positive bands. The tests are unreliable. You can have no bands and have Lyme. I would find a LLMD and let them decide. Lyme is often diagnosed clinically because there is no accurate test.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/12/2009 5:23 PM (GMT -7)   
I've been sick for many years and have been on disability for five. Tests for Lyme kept coming back negative. I was diagnosed with CFIDS and Fibro by 9+ doctors (primary, neurologists, rheumatologist, internists, infectious disease). It started with flu-like symptoms and neck pain that never went away. When the neck pain became worse and I started to experience body and joint pain, Fibro was added to the original diagnosis of CFIDS. From the beginning I had my doubts about the Fibro part of the diagnosis. I continued to get progressively get worse until I finally went to a LLMD at the suggestion of the nueropsycologist who did cognitive testing on me. I was finally diagnosed with Lyme Disease and started treatment a few months ago.

You should make an appointment with a LLMD as soon as possible so you can start proper treatment. I know there are members on this forum who keep lists of LLMD's but you can always request a list in your area from www.turnthecorner.org

Good luck!

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 5/12/2009 6:45 PM (GMT -7)   
In the sticky thread for newbies, alfers (forum mod) posted a list with the bands on the thread`s fist page; it says that band 41 is usually the first to appear after a Bb infection and is specific for all Borrellia.
I agree with the others; testing is not very accurate /reliable and if you have a weak immune status, your body may not produce antibodies at all. To see an LLMD and request treatment is also my suggestion.
I hope you get better quickly!! greetings, dorit

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/13/2009 9:26 AM (GMT -7)   
Dorit, Thanks for helping me remember what my doctor told me about not producing antibodies when the immune has been weakended.

Anxietyridden, The most important thing is to get a diagnosis from a reputable llmd and start treatment as soon as possible. Waiting for specific bands or tests results to come back positive can be dangerous. Test result can support a diagnosis but in no way is necessary for one. Sometimes those who are sickest do not produce any antibodies at all. The longer a person waits to be treated, the longer and more aggessive the treatment will need to be and chances of full recovery can be greatly reduced.

By coming here and learning more you're headed in the right direction. Good luck.

anxietyridden
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 5/13/2009 6:50 PM (GMT -7)   
Thanks for all of the replies! I think I will make an appt w/ a rheumy in the area that also specializes in Lyme. Can't hurt, might help, right!? I appreciate the info.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/13/2009 7:24 PM (GMT -7)   
Good luck. I hope you feel better.
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