Lyme Disease Support Group

I was wondering if there is any reason to get a spinal tap if I have had two positive western blot tests for lyme from Igenex and Stonybrook laboratories and a SPECT scan that says I have moderate to severe encephalitis.

I have been suffering for a year with constant headaches, extreme fatigue, dizziness, ringing in my ears, sharp pains in my joints and throughout my body,

neurological problems for example:

not being able to think of the words to use in a sentence, stuttering that I didn't have before, sensitive to sound and acceleration, feeling like I am in a fog all the time and a lot of other things.

To me it doesn't seem necessary because i was told that lyme is only found in the spinal fluid 20% of the time.

I guess my doctor wants to see if there is anything else in the spinal fluid that could be causing my encephalitis but aren't two positive western blot tests enough for diagnosis?

Thanks,

Abby

broke up continuous text for neuro lyme folks like me to be able to comprehend/read. bettyg, iowa leader

Post edited by: Bettyg, at: 01/17/2011 12:07 AM

Yes two WB are enough for treatment but as you said the doc may want to rule out something else with the spinal fluid. If your uncertain why he is doing it ask him out right. "Why are we doing a spinal" if he is still looking to substantiate Lyme I might question the need.

Thanks for the advice. I will ask my doctor.

Abby

The process was not as bad as the movies often make it seem. If at all possible, premedicate prior to the procedure per your doctor's instructions. For me there were 3 steps to the procedure

1. getting on the table in a proper position (on your side, tight fetal) and getting comfortable. don't be shy about asking for a blanket for your legs if you're cold.

2.anesthetic around puncture site - this bothers more people than the tap itself. You feel a sharp pinch like an injection as your doctor injects xylocaine or equiv. around the area. i felt my legs go a little weak but who cares, you're lying down right?

3. The puncture which I did experienced as pressure, and then the filling of the vials with fluid, which took a few minutes and required me to relax and be patient and realize I wasn't in pain. The pre-medication probably helped here a lot.

That was it. Over in 10 minutes. You lie on your back a while afterwards, get up slowly, be kind to yourself for the rest of the day. I took ibuprofen for 36 hours afterwards for the local pain, but gentle movement like walking helps too.

Short answer : if you've got to do it, you don't have to fear it. (in my opinion)

Much can be found looking at spinal fluid - IF it is being done ONLY to determine Lyme - then doing this has the potential to be an unnecessary proceedure - as you have a 50/50 chance of coming back positive - must be done on the right day - you can do 10 in a row and number 11 finally show because that is the day it is there...

BUT if you havent had other things ruled out - and this test is a way of getting answers, It may not be fun...but done right it doesnt need to be a horror show as NyLyme has demonstrated here for us...

Christine

I'm running out of resources to self-advocate while in the middle of this much headache pain.

As of no 3 Westerblots have come back positive. and all coinfections negative. so we are pretty sure that its lyme. however, I have been getting very numb and tingling (I'm not sure if this is a symptom of lyme or not) so the Dr. wants to ensure that its not menengitis of something else. all the best