lumbar puncture anyone?

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Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 10/22/2009 2:47 AM (GMT -6)   
Has anyone had this procedure? I have one scheduled for 10/29 so please let me know what to expect..... smhair
 
Is this test more definitive for Lyme than blood test?
 
I was biten August 08 - diagnosed by GP with Lyme 8/7/9
30 days Doxy - 9/2/9 ID doc says negative for Lyme - tendonitis
black out episode 9/4 leads to 10/19 neurology appt
Neurologist has scheduled EEG 10/27/9  lumbar puncture 10/29/9
and EKG and Echo 11/2/9
 
WHAT DO YOU ALL THiNK??

Goldfinch
Regular Member


Date Joined Mar 2007
Total Posts : 96
   Posted 10/22/2009 7:02 AM (GMT -6)   
I had all the tests that you have mentioned including the lumbar puncture. These tests did not definitively diagnose me with Lyme (all tests were negative except I had slightly elevated protein in my cerebral spinal fluid). I feel that by having these tests done I was able to rule out other diseases that could mimic Lyme. I was diagnosed with Lyme through the IGENEX blood test.
 Currently off of antibiotic.
 Supplements: Vit.D/C, Multivitamin and Armour Thyroid 120 mg


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/22/2009 8:15 PM (GMT -6)   
Hi Lymeymom,

You may want to do some research on a lumbar puncture for Lyme Disease. I think it's less than a 10% chance that they find Lyme in the CSF. If your doctor is trying to rule other things out, it might be best to have it done but for Lyme Disease, the chance that they find it is really low.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 10/22/2009 10:05:58 PM (GMT-6)


strongmom
Regular Member


Date Joined Aug 2009
Total Posts : 79
   Posted 10/22/2009 9:59 PM (GMT -6)   
I recall reading somewhere that it's so inaccurate in diagnosing Lyme that it's not even recommended to use this for DX of Lyme. 
 
I had lumbar puncture after a car accident when I developed immune system problems--mine went very well,  but I followed the docs orders exactly on what to do afterwards. 
 
They are pretty common tests so you don't need to be anxious about it.  Ruling out other possible illnesses is important.

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 10/23/2009 1:35 PM (GMT -6)   
I had a spinal tap to rule out Lyme and Diagnose MS. It came back negative for Lyme dut I had a few O'bands can't say the whole name sorry. So they said all my positive Lyme tests from blood were wrong and it was definitly MS. I did believe them for awhile I tried Avonex and Steroids it made me worse.
 
I went and saw an LLMD over 3000 miles away and was diagnosed with Nuerological Lyme and treated with antibiotics and got better all lesions in my brain healed I felt good for 3 years, had a healythy baby and  after stopping antibiotics it all came back. My LLmd said my Nueroloigists did not even order the right tests for Lyme with my spinal tap they didn't want to find it.
 
Make sure to take good care of yourself after the procedure stay flat on your back and let someone take care of you otherwise you can get the worst headache.


Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 102
   Posted 10/23/2009 2:10 PM (GMT -6)   
I had a lumbar puncture in August, as prescribed by the neurologist who was trying to confirm that I had MS.  Before having my lumbar puncture, I met with my LLMD for the first time. He said my blood tests that only had two hits on the WB confirmed Lyme, but not according to the guidelines.  He asked that since I was already getting the lumbar puncture done, that I get an extra vial of fluid and drop it off at a specialty lab that does Lyme testing. 
 
If you have an LLMD and access to a good lab, then you might want to talk with the LLMD and ask about this option.  I am fortunate (or not) that Lyme and Bebasia showed up in my spinal fluid.  My doctor was excited because I am his first case to actually have Lyme confirmed in the spinal fluid and mostly that's because most people don't get a lumbar puncture ordered.  It's not that it's not in the spinal fluid, it's just not a commonly used procedure, so many never get the fluid tested.     

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 10/25/2009 7:37 PM (GMT -6)   
I had a spinal tap in January of this year. I was a wreck for the days leading up for it. The actual procedure took less than 10 minutes and then I had to lay on my side for 3-4 hours drinking lots of coke to avoid a headache. I came home and had no problems after and pretty much resumed my normal activity. In other words, for me it ended up being very easy.

Unfortunately, for me as well, it came back negative for lyme, but did rule out MS. I've had the head mri twice as well with no lesions, however, there is a small percent (5%) of MS that shows up in the spine only so I guess it was good to rule that out.

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 102
   Posted 10/26/2009 6:11 AM (GMT -6)   

Really Lyme- That is the exact same experience I had with my Nuero.  My lumbar puncture was scheduled on 9/3/09 and I had my first appt with my LLMD on 9/2/09.   I brought the order for tests from my neuro to the appt and he said that she didn't even order a lyme test for me.  That is why he asked me to get an extra vial for his lab.  This is the nuero that said, "You definitely don't have lyme and I'm 90% sure it's MS".  She based her 90% guess on just my MRIs.  Oh, and they never called me after they got the results from the spinal and I never went back.  I wonder how many people this neuro has misdiagnosed!  It's all so frustrating.

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