My daughter was diagnosed with lyme with Bell's Palsy and positive lyme test (back in June).
I am curious to know if someone has neurological symptoms of lyme would it always be found in spinal fluid (if checked) in these cases?
(She has recovered and is doing well and never had to have one)
Posted by TerryK (Member # 8552) on :
No, my understanding is that it is rare to find borrelia in a spinal tap. I've heard that spinal taps are not very reliable for borrelia. Another useless and possibly harmful test sanctioned by the IDSA as very useful for a lyme diagnosis.
Glad your daughter has recovered. Hopefully she was treated by an LLMD who check for co-infections. Important to get a high enough dose of abx because we see lots of people who got better but then eventually get sick again because they were not treated adequately.
Terry I'm not a doctor
Posted by TF (Member # 14183) on :
Here's what Dr. Burrascano says about the percent of time lyme is found in the spinal fluid:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!" (page 8)
So basically Dr. B. is saying that even if the lyme patient has full-blown meningitis, only 13% of the time will lyme be found in the spinal fluid.
Posted by disturbedme (Member # 12346) on :
Nooooooo, it's very rare to find it in spinal fluid. I think it's somewhere around 30% or less found in spinal fluid... so it's really NOT in the best interest for someone to have a spinal tap for lyme.
Posted by Shosty (Member # 12232) on :
The negative test is used against you when you say that it is neuro Lyme. In the case of parents saying their kid has neuro Lyme, when the spinal tap comes back negative they may even say you have Munchausen by proxy and are seeking unnecessary medical procedures. I'm not kidding.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Shosty: The negative test is used against you when you say that it is neuro Lyme. In the case of parents saying their kid has neuro Lyme, when the spinal tap comes back negative they may even say you have Munchausen by proxy and are seeking unnecessary medical procedures. I'm not kidding.
It is amazing they can use a test with 13% reliability as justification . Medicine is not science - it BS governed by mainstream opinions and dogmas.
Posted by adirondack J. (Member # 22369) on :
I have been diagnosed with neuro lymes two years ago. My symptoms come and go. I've been thinking about having a lumbar puncture(spinal tap) to rule out other possible neuro diseases. Does anyone have experiences with this procedure? Is it as painful and uncomfortable as it sounds? Is it necessary? Who should do it? Doc or lab tech? Thanks!!
Posted by seekhelp (Member # 15067) on :
I had a myelogram done last year. It's like a spinal tap where they shoot contrast dye into your spinal column. Let's say even with sedation and numbing meds, it's an experience I never want to remember. I don't suggest it unless necessary to save your life.
Posted by TF (Member # 14183) on :
adirondack, many of us here had a spinal tap before we learned they were useless.
I would not do it again. It is painful, frightening, and can have terrible side effects.
Many people have the headache from hell for weeks afterwards. If your spinal fluid continues to drip out of the hole they made, you have trouble and have to go back in for a "blood patch."
Because you tagged onto another post, people don't know you are asking advice regarding a spinal tap. There have been many such posts in the past. If you do a "search" using the words "spinal tap" you will see how many people will warn you NOT to have this test. It won't show anything and it can be used against you--insurance company can deny payment for lyme treatment based on having a negative test.
My spinal tap was done in a hospital, on an xray table to ensure proper placement of the needle, and 2 doctors performed it.
Then, you have to lay perfectly flat for the rest of the day to try to prevent that unforgettable headache. You will have to have someone drive you home from the test. You will spend all day having it and recovering from it (if not weeks recovering).
I would get good lyme treatment and expect all the neuro symptoms to go away. Only if they didn't go away once all other lyme symptoms were gone would I even consider this test.
When they took a sample of my spinal fluid, they tested it for syphilis, HIV, and many other diseases. It was ridiculous in my opinion. Generally, it is a neurologist who wants to order this test. I knew I had lyme disease (had a positive test) and you don't need a spinal tap to find out if you have HIV, etc.
Stay away from neurologists. This is what they always want to do to lyme patients. Then, when the test comes back negative for everything, they treat you like you are a mental patient.
Posted by adirondack J. (Member # 22369) on :
Thanks TF. I'll definetly consider your comments.
Posted by liesandmorelies (Member # 15323) on :
I had a spinal tap and it showed nothing. I went on shortly thereafter and tested positive for Lyme.
I don't think it's a good indicator for most. I have neuro symptoms and it did not show anything in the fluid.
Posted by liesandmorelies (Member # 15323) on :
Adirondack J.,
Welcome to the board.
I lived very close to Saratoga Springs before I moved to California three yeas ago.
I can't believe how many ppl in my old stomping grounds are getting Lyme.
I heard Washington County was especially hit hard. Did you get infected there?
Posted by Lymetoo (Member # 743) on :
20% chance of finding Lyme in spinal fluid. Pretty much useless.
Posted by purplemom (Member # 21064) on :
"Stay away from neurologists. This is what they always want to do to lyme patients. Then, when the test comes back negative for everything, they treat you like you are a mental patient. "
This was my experience EXACTLY. Although, I had no side effects with the procedure itself.
Posted by Wimenin (Member # 15294) on :
NO!!!!! My csf was tested and it came back negative for biotic, but, I showed an elevated protein level that put me on the path to questioning lyme. The first neuro I saw diagnosed meningitis and encephaltis, but, thought it was viral. It turned out to be lyme as my LLMD retested through igenex and the bands all popped up. Stay clear of the spinal tap.. it is not that accurate...!
Posted by lightparfait (Member # 22022) on :
NO!!!!
Lyme is not in each drop of fluid, or each drop of blood! It's a shot in the dark...if your exact sample has the spirokeets!
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