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In my opinion, spinal taps should only be performed to rule out other things, like meningitis, and not used to try to test for Lyme.
--Annie
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spinal tap nightmare http://flash.lymenet.org/ubb/Forum1/HTML/020197.html
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oops!
Lymetutu
[This message has been edited by newlymepatient (edited 24 January 2005).]
Did you get hold of Dr Fallon??
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oops!
Lymetutu
What is he in the hospital for?
What ABX is he on and has there been any change since he started?
Before an invasive test like LP they should do imaging studies like MRI and SPECT. When they do these GET SOMEONE THAT KNOWS WHAT THEY ARE DOING TO READ THEM. Try to arrange to send the films off to Dr Fallon at columbia. Once the imaging is done then an LP (spinal tap) might be in order as he might have something else that might show up (ie the VDRL test).
No Dr. will argue to do an invasive test before a non invasive imaging test. In fact the imiaging test is INDICATED IF THE TIME PERMITS PRIOR TO DOING A LP. If don't want to do the imiaging first then you can decline to sign the waiver prior to the LP stating that other less risky test where not done first. This would stop it from happening.
Finally, based on laboratory criteria alone LYME IS A DISEASE OF EXCLUSION not a disease of INCLUSION. If all the other tests come back negative then the DR's have an obligation to contact someone who has diagnosed and sucessfully treated Lyme patients (ie MANY patients) so they can get a clinical opinion.
Lyme is not a disease that you can read up on in the lounge in the aged text books that someone desided to leave there or while sitting in the crapper reading a glossy JAMA journal. It is a rapidly developing area of medicine that is both complicated and controversial, the best stuff is in the "second rate journals" like clinical microbiology or the "backward european journals" (who by the way have recogized Lyme and its cause many years before Lyme was ever invented).
If the Dr's treating your father can't hack it or the heat they should just decline and ask to find someone that know's what they are doing.
Old message
Accurate for what purpose.
It is a very good tool for a lot of things, including if you DID get a positive on a western blot or PCR for Lyme. There are MANY publications of positive results for Lyme using the CSF.
The big problem with it is the sensitivity for Lyme. It's sensitiviy is very low and as such is prone to give false NEGATIVES.
Bottom line is that my humble uneducated opinion is that it is not worth doing to rule out Lyme, but it is useful for ruling out other things prior to reaching a Lyme Diagnosis. Lyme should stay on the differential until the very end due to the poor tests that are available at this time.
Since Lyme can create a lot of other symptoms, other more acute diseases might have to be ruled out first, particuarly in the absense of some of the classic lyme "large joint" symptoms.
It does not mean you don't have Lyme, but other things may have to be ruled out as a priority.
Hope that helps.
[This message has been edited by david1097 (edited 24 January 2005).]
Here's the proof:
1) You'll get a negative test for Lyme with 90% predictability.
2) You'll get a monster headache and be bed ridden for 3-4 days - especially if you have Lyme. I'd say this will happen with 50% predictability.
In summary, you'll totally waste your time - with an accuracy of about 100-(100-90%)*50% = 95%.
How's that for accuracy??? 
BUT...
it's only a waste of time if you're solely looking for Lyme.
If your doctor is looking to rule out other neurological diseases, it can NOT be considered a waste of time.
IMHO...
I had the LP procedure done. They found no Lyme and no MS and everything looked normal.
I had been warned by at least 20 LymeNet members to NOT do this to look for Lyme. And they were all correct.
I only went ahead with it to rule out MS, etc.
Michael
My first spinal tap, at age 13, was absolutely horrid. I was scared to death, the doctor hit my muscles pretty bad, and I was laid up with a horrible headache for a week. Standing up brought it on, so I had to lay flat for as much as I could that week.
My second time was this past year, at the age of 21. This time was so much better. I only had a slight headache for a day, which is almost usual for me anyways. I think that the technician that you have really helps.
The only thing I found out is that I have an infection/inflammation somewhere. At age 13 my CSF protein was 107, and this past year it was 69. But this still didn't help with a diagnosis - the doctor still thinks it's genetic even though there's no proof. That's why I'm checking out lyme.
So I would say only use a spinal tap to rule out other conditions like others have said. For the inaccuracies of the test, it's just not worth it. Not only can it be painful, but it can be dangerous. There is a slight possibility that the technician could screw up and paralyze you. I had to sign something that said I knew the risks, so they wouldn't get in legal trouble if it happened.
The first one was because I had symptoms of meningitis. The tap confirmed I had meningitis AND IT SHOWED IT WAS FROM LYME (regular test, not PCR).
I had a few other follow up taps, got meningitis again several years later (good for two taps) and this year am super-sick again. Had two taps in August (first one they didn't get enough fluid for all the tests, duh~~~~).
Only the first one was super-bad: had the "spinal-tap headache" for about two weeks. BUT, the pressure in my head was also quite high from the infection and thus more likely to have such a tap headache. The rest of the taps made me sore for a day or two, maybe a mild headache but not too bad. If you lay low the day you have it and maybe the next day and the person doing it isn't a medical student, its not horrible.
And even though you have to sign a medical waiver/risk thingee, especially if you have a neurologist or anesthesiologist do it, its their equivalent of taking blood. The risk of paralysis is nearly non-existent. Heck, pregnant women have it done (epidural) 1000 times a day, so... Its really the reduction of spinal fluid in your head that gives the majority of side-effects (like the headache).
If you or a loved one do need it done, ask for a "pediatric sized needle." The fluid comes out slower (so the procedure is longer and you need a patient tech/doc) but there is hardly any discomfort at all in getting the needle put in nor is there much soreness. Just a tip from the spinal tap vet...