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Turned down for Lyme test; what now?

Posted by Budzoid on March 10, 2009, at 21:35:18

First, this post does concern my mental health (and physical). At the suggestion of a few people, including Phillipa, I asked my PC doctor at the VA to get tested for late stage Lymes disease. I was certain that it would explain most of my problems. Everything seemed to "fit". The PC Doc. agreed and I was scheduled to see the infectious disease Doctor the next day.
After telling my story to him, THE EXPERT Doc. (name explained later),told me I was right to assume the connection. I was told I DID have many symptoms of the disease. This is where it gets interesting.
I was told the following: 1)my rash from a bite could be produced by any tick. 2)The southeast U.S. does not have ticks with Lyme. 3)my arthritis is probably from a neck injury I had when I was 8, and now that I was in my 50's, it was time for it to show up. 3)I do not have any heart problems except high blood pressure and a leaky heart valve.
I agreed that the arthritis statement could possibly explain that, but I still wanted the Western Blot test to eliminate any possibility. A negative result would ease my mind and maybe I could sleep at night without worrying.
I was then told not to worry, he was an ASSOCIATE of the CDC and he had the education and experience to say I did not need the test. He also stated: "if we did test and it came back positive, we would be opening a can of worms".(WTF???).
I left feeling THE EXPERT was only looking for reasons NOT to test, and ignoring all the reasons TO test.
This is obviously the VA's policy on the subject. Since I don't have the money or the insurance to get an outside opinion, it looks like I will never know if some or all my problems can be treated with simple antibiotics.
I guess I must learn to live with the following problems that do not respond to "regular" medicines or treatments: severe depression, obsessive-compulsive behavior, chronic pain from a stiff neck that is arthritic, not being able to read a book due to lack of concentration, neuropathy,and only being able to sleep in 2 hour spurts. FOREVER.
BUT, I'm not an EXPERT.




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