posted
First off let me just say, I am not a newbie!
I found you people in the summer of 2001. I fought a long hard battle and considered myself cured, with some minor residual problems. I didn't come to the board anymore
On Monday 11/7 my arm was quite painful and upon rubbing the back of my muscle, I felt the skin was very rough. I looked in the mirror and found the little bastard attached and the skin inflamed.
As many of us in RI, our LLMD has flown the coop to CA. I went to my regular Dr and she said she was running a WB. I just found out that she ran an ELSA and guess what....it was negative !! NO Crap!! My LLMD had told me years ago that I would probably never test positive because I had the bull eye rash and was immediately put on antibiotics the first time. How many others of you have tested negative with the ElSA but have LLMD's still treating you for Lyme agressively?
Marcia
-------------------- marcia Posts: 75 | From Pascoag , R.I. | Registered: Aug 2001
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Ticks are BAD here right now...I have found three crawling on me in the past week, and I do not go near the woods or brush! On Cape Cod, not too far from you.
Just wanted to say I had at least 4 Elisa's which came back negative before I was finally diagnosed. A WB was never done...because the docs said "no lyme". (idiots)
I think if you are being treated aggresively...that's GOOD news. An Elisa is a useless test and not very accurate. Almost everyone here would agree...I think!
Good luck!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Marcia. So sorry you are back and re-bitten.
A negative ELISA is meaningless.
It's very disingenuous of your doctor to claim they are doing a western blot and then do a worthless ELISA.
In any event, your re-infection is pretty new to show up on any tests.
Most doctors abide by the two-tier system: ELISA first, and then -- AND ONLY THEN -- will they do a western blot IF THE ELISA IS POSITIVE.
This is of course ridiculous because the ELISA is so worthless it misses by some estimates up to 70% of Lyme positive people. Whose doctors will go on to refuse them further treatment.
My ELISA was negative. However, my neurologist was an idiot. I had read up at LymeNet and knew it was worthless. I begged him to let me test at IGeneX but he refused. So I got it done by faxing a request to my brand-new LLMD (whom I hadn't even met yet!). It came back CDC positive with six bands, many double and triple positive. That's how far off the stupid ELISA is. We are not talking marginal or a little bit off. These tests were just a few weeks apart, with no antibiotics.
I would find a new Lyme literate doctor and go about getting proper treatment, including better and more accurate testing at a GOOD lab. MANY if not most of us on here have experienced negative and worthless ELISA's.
I wish the stupid ELISA were outlawed, because so many ignorant doctors rely on it, consigning Lyme patients to certain misdiagnosis and suffering. They are not supposed to, but I guarantee you that they DO.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Early preventitive treatment has proven very effective. Please find a way to get antibiotics soon, maybe for acne? This is an acceptable use of long term abx.
Posts: 1572 | From Pa | Registered: Jun 2001
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
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Good luck!
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