LymeNet Flash: Anyone had a lumber puncture for lyme?

This is topic Anyone had a lumber puncture for lyme? in forum Medical Questions at LymeNet Flash.

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Posted by shassler64 (Member # 3479) on :

Hi!How do they do it?How long does it take?Is it very painful?Any other info appreciated,
Thanks,Sue.

Posted by docdave130 on :

Unforunately you will not like any of my answers but heres the truth.
i had 2 done 1 unsucessfully, then 1 in the hospital.
make sure it is done by a neurologist that has done many many of these. they are diffcult to get. so make sure you have a trained neuro do it.
the procedure starts with local anesthesia to the back area. not to bad.
the lumbar puncture is extremely painful and they have you roll up in a ball so that they can open the spine bones to get the puncture.
the procedure takes about 5- 10 minutes but feels like hours.
then you must lay on your back without moving anything for i think it is 4-6 hours.
you should have it done in a hospital outpatient, because if they miss they need a radiologist to track where the needle goes,and this can't be done in an office.

Posted by rosesisland2000 (Member # 2001) on :

If you are searching for LD by doing this, I'd say skip it.

It hurt me like hell. I didn't know at that time that I could've ordered a blood patch and that would've prevented me from having the worse pain I've ever had in my head.

Guess what? They found NOTHING, NADA, Zilch pertaining to LD. I have 3 positive Igenex tests and two were CDC positive.

I will continue to discourge this diagnostic test from happening to people unless they go through it with open eyes and some serious research.

JUST MY OPINION>>>not trying to start something.

I've had a baby without Lamaz and without any sort of pain killers and the headache I got from this was far greater. I wanted to die...

Rosemary

Posted by SisterSue2 (Member # 5484) on :

I agree, skip it....how can it help you?

Why go thru the pain if improvement is not one of the options. Get some treatment and that WILL help you.

It will be normal....they almost always are - even though you are VERY sick.

Posted by circuspeanut (Member # 6154) on :

Don't they do these to rule out things like ALS and MS? (I don't know, just what I've heard.)

Posted by Annajade (Member # 6371) on :

So far I agree with most of the other replies. I've had two. The procedure, I feel wasn't that bad, BUT..I did have the post lumbar headache both times. And yes, it is very, very, painful. I would definately inquire about a blood patch to follow the procedure. It will save you a lot of agony. One of mine showed 7 bands, the last one a few weeks ago was negitive. It does rule out other diseases. If you choose to have the procedure done, good luck with it. I will thinking about you and hoping for the best....Annajade

Posted by beachcomber (Member # 5320) on :

I had one. Iy didn't hurt at all. However, the needle hit the nerve that goes to my bladder and shut it down. I ended up in the ER to have my bladder drained - that hurt.

PCR showed nada.

Posted by arg82 (Member # 161) on :

Hey Sue!

I've been wondering how you've been doing but haven't had a chance to e-mail.

As for the LPs, I've had two. The first one was done by my duck neurologist. He had me on steroids to avoid complications with it so obviously it didn't show anything. (This was before I knew much about Lyme.) The second one was done by my then LLMD. That didn't show anything either, except for some bands on the WB.

Also, the first LP left me with a permenant funny feeling in my back where the needle was. It's weird but I'm sure it's related to the LP.

I'd say, if you're trying to find Lyme in the spinal fluid, don't. It's not a reliable way of seeing if you have neuro Lyme.

Why are you thinking you'll need one?

Peace and healing,
Annie

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Posted by suki444 (Member # 18960) on :

Hi Sue

Spinal taps are used to help determine if there are autoimmune processes going on - elevated white cell counts can indicate chronic meningitis.

As far as testing for Lyme it can be negative and docs like Dr B do not routinely recommend them.

I had a lumbar puncture done for Dr B to check for Bartonella - it was negative for both that and Lyme (though I do have all the clinical symptoms of both). Other tests were more accurate so the only thing I learned was that I had a form of chronic meningitis.

I think I could have foregone that knowledge as although I laid flat for 1hr after the lumbar puncture hours later I got the most TERRIBLE spinal headache and I could not even lift my head from the pillow to eat as the pain was so bad. It lasted a week too.

I would weigh up if it is worth the risk and how it would help in your diagnosis if you did go ahead.

Just my experience but spinal headaches are quite common afterwards & very painful

BW
Emma