posted
I have had lyme symptoms for a long time, maybe 15 years....
I was told I had everything from fybromyalgia to "get a shrink".
Last year in August of 2007 I got a positive IgM western blot.
My primary doc put me on 200mg/day doxy course for 2 months. I was actually feeling better and then she said that was that...I should be rid of it.
By March of 2008 I was begging my doc to do another test so she did and it was negative.
The symptoms kept going on...achy, tired, a very aggressive form of arthrits that was not RA, wierd brain fog and speech problems including mixed up sentences
and saying words that I didn't mean to say like "I want to watch the river" instead of "watch the weather", heart palpitations, anxiety attacks, feeling like I was coming down with the flu and then the next day feeling better...
While on the doxy I felt better but then got worse again almost immediately after it stopped
Since then, I go from feeling terrible for a couple of months (joint pain, chest pain and palpitations, high b.p., headaches, night sweats, low grade fevers, brain problems and fatigue) to feeling pretty good but I alway have some kind of joint pain.
When August came this year I begged my rhuemetologist to give me another lyme test...it came back negative.
I just couldn't beleive the results so I took my own money, $500 bucks, and send my blood to Igenex in Palo Alto...
my tests came back positive three weeks later after the previous commercial negative lab test.
I was so sure that my doc would treat me but she said "I don't know how to treat you" and sent me to an Infectious Disease doc who basically told me that since I was treated last year I shouldn't have to be treated again and my body should have enough antigens built up to fight it and rid itself of what ever is left of the lyme....duh!!!!!???? Welcome to the wonderful world of medicine...
I purchased the movie "Under Our Skin" from their web site and wish I could make at least 2 copies to give to my doc and the ID doc.
Now I am at the mercy of my health care provider who basically says, sorry kid, you're fine, go ahead and seek a lyme doctor outside of your health care system but don't talk to me about lyme...call me if you catch a cold or need a PAP smear.
Now I am talking to an "ND", not an MD. She knows alot about lyme and worked closly with one of the doctors at igenex as well as other big lyme docs.
All my life I have depended on my doctors and thought that anything that didn't have the letters M.D. at the end of their name were nice people but not qualified.
I don't feel very secure in this. I feel skeptical. Who's right? Who's really making the money...it all seems to be so shaky.
My doctor was gracious enough to order some tests that the lyme ND suggested....seems that the barbesia and bartonella are negative but again they were done at a commercial lab...
I did test positive for microplasma pneumoniae...what the heck is that and what does it have to do with lyme?
One more thing....When the CDC called me on this most recent test to interview me about the tick bite (which I have no recollection of) the epidemiologist told me that the test from last year yielded 5 positive bands and this years test yields 7 on the Igm.
My theory is that I have lyme, didn't get the full treatment and a few more months of doxy should do the trick.
My doctor seemed like she was game for it at first untill the ID doc got ahold of her....now she won't even discuss treatment with me...
The CDC guy just said that their hands are tied....
So here I am on this journey and I feel like I am a blind person groping at thin air.
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