I have read different things on how sensitive a spinal tap is for detecting Lyme.
I have been symptomatic for 14 years following a bulls eye rash. Lots of neuro symptoms, maimly vertigo/dysequalibrium.
All serologies are negative. 2 ELISA's and 1 WB.
Endo thought to do spinal tap. I told him the yield was low and he said ok.
He is writing up orders and a letter to the ins. co. for IV antibiotics.
I am seeing the neuro next Friday. I figure if I go ahead with it, they can r/o MS and maybe I will be lucky and test + for Lyme.
Any thoughts or references I haven't read yet? (I have spent many hours researching online and reading books.)
I had a spinal tap done in May, to try to rule out MS and to look for lyme. I have mixed emotions about it all.
I think the 20% accuracy rate for detecting lyme might even be for those w/ KNOWN neuro-lyme. That is what my LLMD said.
I just saw a show about a girl w/lyme encephalitis and it was so bad that she couldn't feel anything below the waist and coudn't walk and she still tested negative.
OKAY, when I got my results it didn't show lyme, but I did have 1 Oligoclonal band in my CSF and none in my blood. I also have numerous white matter lesions and neurological symptoms. I just had an appointment with my LLMD and was told that he doesn't see many people w/the O-banding and that I "could" have 2 diseases going on at once...I tested CDC positive for lyme back in May.
Sometimes I wish I hadn't done it. I am just one of those people that has to know all the facts. My test was technically "negative" because you have to have 4 bands(some tests say 2) to be considered positive....but it just adds to the uncomfortable sinking feeling when you look at the whole picture.
If you do it, use an interventional radiologist at a hospital that can image exactly where to stick the needle. It took my neuro 3 tries and it wasn't pleasant. He was even apologizing to me. Those spots still bother me sometimes.
Honestly, a bullseye rash is diagnostic. Have you sought out a LLMD for treatment? Also, have you used IgeneX for your testing (WB)?? I would do that first, and see what it shows.
Let us know what happens. I know everyone was telling me NOT to do the LP except about 6 different doctors. I was hoping to walk away from the MS possibility with a clear conscious.
Also, from what i have read CNS infections CAN cause O-banding too. They can't tell you what the O-bands are from, just how many you have.
I thought o bands were common with cns lyme. I had the spinal tap done twice. It never showed anything abnormal. I wanted it done because I was sure I had MS but nothing has ever come back abnormal with my neuro testing....even when I went in for LP and my whole left side was numb and my leg was dragging...it was completely normal.
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