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06/12/2009 04:17 PM

Is a spinal tap necessary?

abster33
abster33  
Posts: 136
Member

Hello,

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

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06/12/2009 07:28 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

Abby,

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.


06/12/2009 08:52 PM
abster33
abster33  
Posts: 136
Member

Hi Toothfairy,

Thanks for the advice. I will ask my doctor.

Abby


10/09/2009 01:30 AM
nylyme
nylyme  
Posts: 5
Member

I'm leaving this reply 4 months after the fact for anybody who comes along wondering "how bad are spinal taps?". Like abster33 I didn't think it necessary after Western Blot. I didn't know about co-infections and now agree with toothfairy55. She's right.

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)


10/09/2009 05:36 AM
cmany
cmany  
Posts: 6940
Group Leader
I'm an Advocate

Very good advise nylyme...

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


10/09/2009 12:20 PM
abster33
abster33  
Posts: 136
Member

Yeah, I ended up getting the spinal tap and it didn't hurt at all. I couldn't even tell when they had put the needle in. They didn't find lyme in my spinal fluid which I was suspecting. They tested for a lot of other things and they didn't find anything else either.

10/12/2009 04:19 PM
nylyme
nylyme  
Posts: 5
Member

Any suggestions on how to deal with a non Lyme Literate neurologist who is denying access to IV-antibiotics because CSF came back clean 10 weeks after Western Blot was positive by CDC standards by Lyme?

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


10/27/2009 11:07 AM
Smile2me
 
Posts: 11
Member

Hi, I just tried to talk my Dr. out of doing a spinal Tap inorder to get my lyme treatment started. But HE told me that by taking the short route to treatment, I will be taking the long route to insurance approval and should therefore wait it out.

10/27/2009 06:10 PM
toothfairy55
toothfairy55  
Posts: 3856
Senior Member

The problem lies in the fact that they may NOT get a sampling with spirocetes. It might not be in your CNS but in muscle of joints. Not finding any will delay or deny you treatment. nylyme... you need to see an LLMD. PM Christine(cmany) or Jaime for a list in your area.

10/28/2009 06:32 AM
Smile2me
 
Posts: 11
Member

Thanks Toothfairy.

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 bestSmile

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