LymeNet Flash: lumbar puncture and neurologic symptoms

This is topic lumbar puncture and neurologic symptoms in forum Medical Questions at LymeNet Flash.

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Posted by timaca (Member # 6911) on :

Hi all!

I just got back from a neuro who did a lumbar puncture on me looking for lyme and other things.

In his opinion, if one has neurologic symptoms, then one should find lyme in the cerebral spinal fluid.

True or not? Anyone can support their answer with references?

Thanks....Tina

Posted by Tincup (Member # 5829) on :

Hey there timaca...

You said..

"In his opinion, if one has neurologic symptoms, then one should find lyme in the cerebral spinal fluid."

When pigs fly.

The chance of finding it is low to middlin'.

Less than 20 percent of the folks with Lyme will have it show up in the spinal fluid.

It is NOT a good.. or even a LITTLE good... diagnostic tool to use for confirming Lyme.

And it is usually NOT recommended by doctors who know what they are doing... UNLESS of course they have other motives for doing it.

It is invasive, costly, dangerous.. and totally useless if trying to prove or disprove Lyme.

Think about it.. what are they doing it for? If for Lyme.. NO deal.

Lyme is a clinical diagnosis.. says the CDC and anyone who knows anything. Negative tests are NOT to be used to rule it out.

If negative... be aware that your insurance company can use that negative test AGAINST you to try and "prove" you don't have Lyme and then use it as a reason to deny any treatment or more doctors visits.

And yes.. that happens quite often... sorry to say.

For references about the spinal tap or anything else.... simply hit the search button on top of the screen... and enter what you would like.

Posted by aklnwlf (Member # 5960) on :

Hi there,

Sorry I'm not more savvy with Lyme info but I can tell you I had 2 spinal taps which didn't show Lyme.

Course, my bloodwork sent to Igenex lab showed Lyme, Mycoplasma and Epstein-Barr.

I too went to a neurologist who was really concerned, sent me to the Mayo twice and in the end just said he didn't know what was wrong with me.

So thousands of dollars later, I finally got a diagnosis and have been on orals for 6 months and am improving. (After seeing an LLMD).

Please forgive my ignorance but have you been to an LLMD yet? I would go that route my friend because it will save you valuable time to get diagnosed properly and treated and save you a small fortune.

Hope this helps.

Posted by Ms. Myoclonus (Member # 6750) on :

Almost all my symptoms are severely neurological: myoclonus(involuntary muscle jerking), balance problems, difficulty walking, blurred vision, brain fog, etc.

My spinal tap came up with a big fat NOTHING. My Western Blot was off the charts positive.

Here's one link to check out.
http://www2.lymenet.org/domino/file.nsf/0/c8237a2ae855bac6852567c700120021?OpenDocument

Posted by timaca (Member # 6911) on :

Thank you for your responses. I did print out that article last night that was posted.

I am seeing an LLMD too, as well as going to Columbia Univ. to see Dr F and Dr. C later this month.

I don't know what my spinal tap will show. Based on my symptoms and a WB that had band 34 ++, my LLMD believes I have lyme. I think that is likely too, from what I've read.

If, indeed, one can have neurologic symptoms with a negative spinal tap (which it seems that can happen); I'd like to have some articles to educate the neurologist.

I think I'll do a google search.

Thanks for your replies....any other input is appreciated too.

Tina

[This message has been edited by timaca (edited 08 March 2005).]

Posted by Ms. Myoclonus (Member # 6750) on :

Here's another link:
http://www.columbia-lyme.org/flatp/medworkup.html

Tina--Good luck educating your neurologist. I think I will write a letter to the one who did my spinal tap informing him of their unreliability for Lyme.

Posted by timaca (Member # 6911) on :

Thank you for that link to the Columbia article. I will make sure that my neurologist gets that....along with my report from Columbia.

Maybe he'll learn something new!

Tina

Posted by Coyotecrazy (Member # 6707) on :

There are MANY neurologists who don't have a clue.

My LP showed elevated protein and even then, the neuro wasn't concerned and didn't consider Lyme.

My IGeneX tests came back VERY POSITIVE for Lyme - even the urine PCR was positive.

There are VERY FEW Lyme literate neurologists. Find a good Lyme Literate MD and don't spend another dime with that neuro.

Posted by Bill ATL (Member # 7817) on :

Tina...

You see from the other responses that the dependability of diagnosing Lyme from an LP shouldn't be counted on.

However...if you are like me, and are in an "Eliminating the other possibilities" mode, than it is justifiable. The Neurologist may not be able to tell you it's Lyme, but he'll also be able to tell you that it's not MS or Cancer, or any of the other diseases/conditions that they test for in an LP. I did do an LP, it was negative, but am satisfied with my decision to do it, as I know it's not MS. Hopefully you will have favorable results with your LP.

[This message has been edited by Bill ATL (edited 08 March 2005).]

Posted by timaca (Member # 6911) on :

Thanks, Coyotecrazy for your post. I can tell you that Birmingham has a GREAT Iron doctor, who has been willing to follow me at a distance, and help me get my iron levels normalized!

And, yes, Bill ATL, I decided to do the spinal tap, for it was one test that had not yet been done on me...and I am in the mode of "turning over every stone."

We'll see what happens, but at least I have some articles for the neuro to learn from.

Tina

Posted by ready to go (Member # 3958) on :

Hello TIMA, i have been dealing with LD off and on for about 6 years and just went to a neurologist and he too wanted to do a spinal tap to check for the same things as you. When the tests came back it was pos for lymes. he did a follow up WB and it came back neg along with the pcr on the spinal fluid. I have to go back in april so i'm not sure were it is headed.

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