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Lyme Disease Message Board


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I am 53 years old and have been ill and seeing doctors for 15 years. I was never tested for Lyme disease until last month even though I have all of the symptoms. I did not know what the symptoms were until after I tested positive on the Lyme screen.

I never asked to be tested since I thought you had to have the bulls eye rash. I didn't recall every being bitten by a tick but I did live in Connecticut for 37 years near Lyme Ct. I live in Illinois now and I think my doctor assumed that I always lived here and years ago Lyme was not an issue here but it is now and therefore never thought to test for Lyme.

I was told that I probably had some type of autoimmue disease or FM but it was never identified as my test results for ANA and Rheumatoid factor were sometimes slightly positive and sometimes normal.

My Elisa was 1.59 (positive is > or = 1.10). Western Blot showed I was reactive on only bands 41 and 45. I also have elevated sed rate 48 (> 30 is out of range of normal) and c-reactive protein was 1.09 (>0.08 is out of range of normal) and elevated platelets 461 (up to 400 is normal).

Over the years the sed rate has increased and over the last few years the c-reactive protein has elevated (was normal a few years ago even when the sed rate was elevated). I also have hypothyroisidm and take .125 mg L-thyroxine and I also have thyroid nodules. I have Gerd and take Nexium. I had a bone scan and have arthritis in all of my joints and take Celebrex. I have synovitis around my ankles.

Last year I was hospitalized for intractable vertigo for 3 days. I also developed premature atrial contractions determined by a holter monitor. I started to lose my hearing. I have a mild/moderate hearing loss in the higher frequencies. I had a CT scan when hospitalized for vertigo which showed chronic sinusitis. I take Flonase for that and a diuretic for the heart palpitations. I recently developed a pressure sensation in my head. It only happens when I stand up. The pressure is extreme and I go completely deaf for about one minute and then gradually regain my hearing. Not one of my doctors has ever heard of that symptom.

In addition I have all of the other symptoms of Lyme - fatigue, hair loss, mental confusion. I was also given Lamictal for bi polar illness and Diazapam for sleep.

My doctor said that based on my Lyme results he felt I did not have an active case of Lyme but that I was exposed in the past or that it was a false positive result. He suggested that I go back to the rheumatoloist who would then refer me to an Infectious disease doc if he thought it was necessary. He said they might put me on an oral antiibiotic.

So here are my questions.
Can someone help me with the Elisa and Western blot. CDC would say I am negative for Lyme but isn't 1.59 quite high for an Elisa? If so why am I only reactive on two bands. I understand band 41 is an important band and most patients with Lyme are reative on band 41. I asked about the Igenex test but the doctor said that it was only useful if I had an active case.

Also I live in Naperville Illinois which is 45 minutes west of Chicago and I wanted to know if anyone knew of a good LL doctor in the area.

Sorry for the long post and thank you for listening. Hope you can help me understand what is happening to me.





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