Anyone have experience with having a spinal tap for lyme? If so what were results?
Posted by sickntired19 (Member # 21949) on :
I am having one today, If I remember I will come back and let you know how it went. You can also see my post that I just put up today asking for info too. It is labled "Lumbar Puncture". Several people posted comments over there.
Are you having one done soon? Or just considering it?
Good Luck!
Posted by Lymetoo (Member # 743) on :
I personally would NOT have one unless my very life were in immediate danger.
If you're looking for Lyme, you will be sorely disappointed. There is less than a 20% chance it will find Lyme. Many drs use this AGAINST YOU because they know it will come back negative.
Posted by Remember to Smile (Member # 25481) on :
I'd still say, "No." Read LymeToo's link all the way through.
Aren't the guys who do spinal taps tall versions of the scrawny boys who used to pull wings off live insects and harass cats?
Posted by Keebler (Member # 12673) on :
- NO oooo. It is a terrible test for lyme, usually negative, even in those with lyme. It's very expensive (even if your insurance company pays the doctor and hospital get big bucks for teh WRONG test), it can be very painful and you could need personal assistance for up to two weeks afterward for migraine.
Seriously, it is the WRONG test. -
Posted by Keebler (Member # 12673) on :
- sickntired19,
I see that you live in Oregon. There are zero MDs in Oregon who are lyme literate. Most are out to prove that you don't have anything wrong and when the spinal tap comes back negative for lyme, treatment will be denied - forever.
There may be a couple MDs who understand a bit about lyme, but certainly are not educated enough to treat it - it's very complex. You need an ILADS-educated doctor with lots of real experience.
Caution: there is a neurologist near you (in either Corvallis or Eugene) who says she/he knows all about lyme. That is NOT at all the case. Be very careful. Ask if they are ILADS members and who their favorite ILADS authors are. I bet they've not even attended one seminar.
Ask if they would treat according to Burrascano, as a basic outline. My guess is they've not even read it. Quiz them. It's your life on the line.
You might consider canceling that LP test and contact this group to find out your options for a LL ND (naturopathic doctor) in this state or a LLMD out of state.
A LP (lumbar puncture/spinal tap) is such a poor test for lyme.
It's like fishing. If you catch a fish in a lake, you know the lake has fish. But if you don't catch a fish, you can't say there are no fish in the lake. You just didn't catch one.
Spirochetes do not just all swim around the spine waiting to be sucked up into a needle. While, once in a blue moon, the needle may withdraw CNS (cerebral spinal fluid) that might contain some evidence of a spirochete, in general, spirochetes hate vibration, light, motion, etc. They will spring away from the action.
While some have no problems, for many, a LP can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making a huge sum of money from a test that does not even work to dx lyme. It's a waste of money unless in a life-threatening emergency and they are looking for other reasons. To assess lyme, it's a wasteful exercise in futility.
However, the doctors know this but will use the predictably negative test to DENY TREATMENT.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough. Go only to doctors who are truly educated about lyme and all tick-borne infections - and how they impact a person at various points in time after transmission.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . . -
Posted by sutherngrl (Member # 16270) on :
I would not use this test if you are looking for a lyme diagnosis. Its a very poor test for LD.
Posted by Keebler (Member # 12673) on :
- sprite8,
please see some of the replies I just posted over at this other thread -- especially the other stealth infections and their tests (which do not require a spinal tap) . . ..
sickntired19,
Many specific replies about SP/LP waiting for you over at your thread:
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