Has anyone gotten a spinal tap to confirm that you have lyme disease? If so what did you experience. Posted by Michelle M (Member # 7200) on :
Rarely will it confirm lyme. Even in people with confirmed lyme, it's only positive 10-20% of the time. But a quacking duck will take a negative test and declare you must not have lyme!
It's moderately useful if you need to investigate or rule out other things.
But nearly useless for lyme.
Most do okay but some have particularly bad experiences. Despite doing everything right, I had a wicked headache for several days. Some require blood patches.
An LLMD has surely not asked you to do this, right? Sounds more like a neuro's orders. Is this your wish or his?
There are lots of better and less invasive ways to test for lyme. Unless you're suspecting MS or some other disease which the lumbar puncture may help you track down, I'd skip it.
More info?
Michelle
Posted by notcrazykate (Member # 10458) on :
Sorry if that's long, I don't know how to make it a tiny one.
Posted by Travlr1 (Member # 9681) on :
lrtbc,
It is my understanding that the llmd's in the US consider a spinal tap worthless to confirm Lyme because the strains of Bb present here in the US don't cause the Pleocytosis(increased number of lymphocytes in the spinal fluid)that the strains in Europe can cause.
Please if this is incorect will one of the more experienced contributors correct me.
Hope this helps,
Travlr1
Posted by Michelle M (Member # 7200) on :
Dr. Burrascano on spinal taps:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb can be detected in the CSF in just 20% of patients with late disease.
Therefore, spinal taps are only performed on patients with pronounced neurological manifestations, if they are seronegative, or are still significantly symptomatic after completion of treatment.
When done, the goal is to rule out other conditions, and to determine if Bb antigens are present. It is especially important to look for elevated protein and mononuclear cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children."
[paragraphing and bolding added by me]
Michelle
Posted by lrtbc (Member # 2477) on :
Another infectious disease dr. thought the spinal tap would be beneficial ruling out other things. I think he wants to rule out MS but told me that it would pick up the lyme if i truly did have it. He went on to say that my symptoms are not typical of MS, i have too much joint pain sand my eyes where did not have the typical eye response that someone with MS would have. Gee, I wonder where the babesia came from that was found in my blood. He was tying to tell me that you can have babesia and not lyme.......hmmmmmmmm that would be a I DON'T THINKS SO!!!! Now after reading your replies, I am thinking he is another Dr. that won't touch us lymies.
Posted by CaliforniaLyme (Member # 7136) on :
This is the citation for why spinals are often negative with Lyme disease- ****************************** 1: Infection. 1998 May-Jun;26(3):144-50. Links In vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid, and transformation to mobile spirochetes by incubation in BSK-H medium. Brorson O, Brorson SH. Dept. of Microbiology, Vestfold Sentralsykehus, Tonsberg.
The purpose of this study was to examine the structural alterations of Borrelia burgdorferi when exposed to spinal fluid. Normal, mobile spirochetes were inoculated into spinal fluid, and the spirochetes were converted to cysts (spheroplast L-forms) after 1-24 h. When these cystic forms were transferred to a rich BSK-H medium, the cysts were converted back to normal, mobile spirochetes after incubation for 9 to 17 days. The cultures were examined by dark field microscopy (DFM), interference contrast microscopy (ICM) and transmission electron microscopy (TEM). When neuroborreliosis is suspected, it is necessary to realize that B. burgdorferi can be present in a cystic form, and these cysts have to be recognized by microscopy. This study may also explain why cultivation of spinal fluid often is negative with respect to B. burgdorferi.
PMID: 9646104 [PubMed - indexed for MEDLINE]
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by lrtbc: Another infectious disease dr. thought the spinal tap would be beneficial ruling out other things. I think he wants to rule out MS but told me that it would pick up the lyme if i truly did have it.
There's your problem, right there.
(1) He's an infectious disease doctor; and (2) A tap won't really rule in or rule out MS; (2) he's wrong, the chances of it 'picking up lyme' are as stated above, 10-20%.
Have you been tested for lyme through IGeneX? Heck of a lot easier!
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