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could this be a false positive or Lyme???

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Lyme Disease
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Posted 5/20/2010 6:42 PM (GMT 0)

I just returned home from a routine appointment with my Rheumatologist.  Last appointment I asked to be tested for Lyme after doing some internet research.  The test for Lyme lgG/lgM came back 1.21...positive.  The second test Western Blot came back negative because only P41 was abnormal.  The doctor said she would put me on an antibiotic to "get it out of my head" but didn't think I had Lyme. 

I have been suffering with joint pain and intestinal problems for 25 years.  If I have Lyme then I would have been infected over 25 years ago.   Could this effect the test results??   This is the first time I have tested "positive" for anything so I was disappointed to think it may be a "false positive".  It's not that I want a Lyme diagnosis but I do want to be properly diagnosed so I can receive the proper treatment.    I don't know if I should see an infectious disease doctor or what to do?????

Posted 5/21/2010 1:25 AM (GMT 0)
wvufan,

Sorry to hear of the suffering you've gone through for so long. Have you seen a GI doctor for a colonoscopy? IBS or other diagnosis?

Do you recall ever being bit by a tick or having a bulls eye rash?

I'll have more to say after you provide a bit more information.

By the way, false negatives for lyme are common, false positives are almost unheard of, but that's what most PCP's or non-lyme literate doctors would have you believe. They're not qualified to diagnose lyme disease, only a Lyme Literate Medical Doctor (LLMD) is.

Gary
Posted 5/21/2010 4:33 AM (GMT 0)
The regular labs do not report all of the bands on the Western Blot. Because your ELISA titer is positive, I'd recommend getting the Western Blot redone through IGeneX labs (www.igenex.com) - this lab specializes in tick-borne illness testing and reports all the bands on the Western Blot. Also, I strongly recommend finding a Lyme-Literate MD or Naturopath for proper diagnosis. www.ilads.org and www.turnthecorner.org I think both offer physician referrals.
Posted 5/21/2010 10:47 AM (GMT 0)
Gary:

I was diagnosed with Crohn's disease when I was 19 (45 now) and then shortly after the swelling of the joints started. They said it was arthritis associated with the Crohn's. I was really, really sick for about 10 years with Crohn's and then about 15 years ago my stomach problems got better but my joint problems continued. I occasionally have stomach issues but not sure its anymore than the average person.

I was hospitalized a few years ago because of heart pain. I had excess fluid around my heart. I was told it was from the arthritis.

I have always tested negative for RH but that is how I have been treated based on my symptoms. I even tested negative for inflammation which I thought was odd since my joints were so visibly swollen at the time.

Reading information on Lyme it seems all these problems could actually be related. I am looking for a LLMD now but so far the closest is 2 hours from me.
Posted 5/21/2010 11:09 AM (GMT 0)
wvufan,

Do you recall getting bit by a tick? Have you ever had a bulls eye rash anywhere on you? Your symptoms may or may not be lyme disease. Hard to say just by those few symptoms, although they are quite typical of what many people with lyme disease suffer with. Good idea to see an LLMD just to be on the safe side.

Gary
Posted 5/21/2010 11:56 AM (GMT 0)
Gary:

Sorry, forgot the tick thing. I grew up in West Virginia and stayed on my grandparents farm during the summer. I recall having quite a few ticks removed by them but don't recall the rash.
Posted 5/21/2010 10:33 PM (GMT 0)
Wvufan,

I know for a fact that Lyme disease can be misdiagnosed as Crohn's - it happened to me also. See http://www.thehumansideoflyme.net/viewarticle.php?aid=62 for what Lyme (& coinfections) can do to the gut. See also http://www.canlyme.com/crohn's.html

2 hours isn't far to go for an LLMD who has the potential to bring healing to you; obviously the choice is yours...but if it were me, I'd go for the 2 hours...

Take care,
Posted 5/22/2010 6:23 AM (GMT 0)
Sounds like you probably do have lyme.  My son has had it for 17 years and he has had all the same symptoms you have.  Its been quite a journey for all of us.

Allieann

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