LymeNet Flash: Lumbar Puncture

This is topic Lumbar Puncture in forum Medical Questions at LymeNet Flash.

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Posted by richge (Member # 7325) on :

My Doctor has ordered a Lumbar puncture to see if the lyme has spread to my nervous system. Is this a usual test for this?

Posted by Ruffy (Member # 7146) on :

Highly false negative. Almost a waste of time when it comes to diagnosis. Most people you speak with that have neurolyme will tell you that their spinal fluid checked out negative.

Posted by prconn (Member # 7113) on :

Mine recently came back negative for Lyme.

It did however provide a rule out of MS as I have brain lesions.

It also provided high protien and IGG levels. Protien should be 15-40 mine was 87.
IGG should be 1.5-4 mine was 6.5.

My LLMD said it helps confirm infection and inflamation of my central nervous system.

A few folks have problems with headaches after. It actually provided relief for me from a 2 month long headache. I had 4 days free of headaches.

Hope this was helpful.

Posted by cootiegirl (Member # 3216) on :

Well I'm kind of a fence sitter when it comes to lumbar punctures. If the doc can prove a strong reason for doing it, he/she must have good reason for performing it. It can be one of many tests done, but not the definitive test.

They can be a bothersome procedure. Many here have had very negative experiences - headaches, blood patches, etc. My experience was actually no big deal and I'm a huge weenie!!!! No headache, just some slight pain in my back the next day. I followed the pre-procedure and post procedure 'rules' to the letter, so I'm sure that helped. It was done by my llmd who is brilliant at doing these.

I opted for it because I was very early on in the diagnostic side of things. I had negative bloodtests. I had a lot of neuro symptoms. I knew that the chances of finding lyme in my csf was going to be low, but at the same time if it helped to determine that I didn't have MS, then it was a good move for me.

What my tap revealed was that I had bartonella showing up in the csf - it did not show up in bloodtests, so those darn bugs were circulating in my brain - bleck! So I got treatment for bartonella. And no MS. While there may have been other ways to find the bartonella in my system, this test showed it.

So while this can be a really invasive procedure, reasearch it out, have a very frank discussion with your llmd, and you will ultimately make the right decision.

cootiegirl

[This message has been edited by cootiegirl (edited 08 June 2005).]

Posted by Lymetoo (Member # 743) on :

I wouldn't do it unless my life was in immediate danger. You can tell if it's in your CNS by your symptoms. Simple as that.

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Lymetutu

Posted by Monica (Member # 224) on :

I had a neurologist duck try to talk me into having a tap, but I turned down his fabulous offer.

He didn't believe in chronic Lyme. Admitted he didn't have a clue what I had, but thought it was "something exotic."

I'm sure there are many who have gotten important information from lumbar punctures, but I can't say I agree (and of course I am not a doctor) that one is in order to see if there's Lyme in your central nervous system?! I agree with Lymetutu, you should know that from your symptoms.

Posted by beachcomber (Member # 5320) on :

Ok, I'm confused - not hard for a Lymie. For those of you who have had LPs and say they are somewhat unreliable for Lyme, why then do you think the negative for MS IS reliable? Wouldn't that be just as unreliable? Not that you have MS but, I wouldn't rule anything out based on a negative PCR test result.

I had an LP for Lyme. Test came back clean as a whistle - no evidence of Lyme. Yet, my bloodwork was consistently positive - many bands and high anti-bodies. Go figure!

My experience with the LP was not great. The procedure went ok until I felt a pain in my abdomen. Turns out the needle nicked the nerve that goes to the bladder and shut the works down. I had to go to the hospital to get my bladder drained. THAT was painful. The LP technician denied that it was the LP so I ended paying ER fees and MD fees to figure out what the heck was wrong when I couldn't pee for 8 hours. Neurologist's office claimed that has NEVER EVER happened. I have since spoken to 3 people who had the same experience.

So, my advice is do it in the hospital so you can be taken care of ASAP if anything goes wrong.

Otherwise, the procedure didn't hurt. It was just a waste of time and caused my Ins. Co. to second guess my IV treatment.

Posted by perplexed (Member # 1913) on :

I agree with Lymetoo also. I would not have a spinal tap for Lyme diagnosis..no way. There are so many symptoms that indicate neurolyme...so why put your body through that? Hope Dr C in Mo does not do them...OYE

Jean

Posted by pab (Member # 904) on :

I would not have an LP to diagnose Lyme. Jake had 2 LP's and Jordan had 3 LP's and all were negative for Lyme. (Both have tested positive for Lyme and co-infections with blood testing.)

But, the LPs have been the only thing that has reduced their severe headaches.

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Posted by Michelle M (Member # 7200) on :

Ditto what PRConn says. Little reason for doing it -- get what you need from MRI. Much less invasive! I had same results as her, also to rule out MS. I got about 3 weeks of headache relief from mine (a bonus!)

One thing I worry about: What kind of DOCTOR are you seeing for Lyme who thinks Lyme will show up in a spinal tap? It won't! Only in 5-10% of 'em, no matter how bad you have Lyme. That tells me your doc may not be too Lyme-literate. Can you get in to see an LLMD? I'd take a wide pass on a lumbar puncture unless you have other health concerns you're ruling out...

Michelle

Posted by no2lyme (Member # 6978) on :

I had an LP to rule out lyme meningitis or something like that, it was at the ER. The procedure was fine but they did not tell me I should stay laying down etc.

I was in bed unable to even sit up for 10 days. They did not test it for lyme - but Dr. S did say might as well go ahead and do the LP.

It did show high protein etc but I think a SPECT scan is much more reliable and I would never do another LP.

Posted by duramater (Member # 6480) on :

My Lyme was actually diagnosed via a spinal tap. Went to ER, they suspected meningitis, did a tap, had part of it tested for Lyme (regular hospital), and it was very positive. This isn't the norm but it happens and can be useful. I too concur that having a tap JUST for LD is probably not particularly useful (mine certainly wasn't just for Lyme), however if it is done to rule out other neurological problems it can be quite useful.

Also, over time I've had 7 taps for various reasons. The competancies of the person doing it has varied and thus the pain during and after the procedure has varied as well. No major side effects -- with someone competent they are quite rare.

To address the issue of why think the lyme aspect of an LP is off and not the MS aspect, the two tests are quite different in both their sensitivity and specificity. Also, tests that come back positive for MS (e.g., oligoclonal bands) are actually not specific for MS, but just more data that might corroborate that diagnosis given your symptoms and brain imaging studies.

Posted by cootiegirl (Member # 3216) on :

I just had to respond once more to this thread. You have a newbie here asking a question. And when people get passionate about their responses, the tone gets a bit harsh. Some posters here are becoming judgemental and doing some borderline doctor bashing ("What kind of doctor are you seeing that would suggest this???")in this post for the suggestion of a spinal tap and I don't think that is an appropriate approach to take here.

While many of us know a lot about this disease, there are llmds that do use spinal taps as a part of their diagnostic process. While it is not the best test, it may have some value, along with other tests such as MRIs, SPECT, etc. I agree that lyme can be diagnosed without a tap and I also believe that most llmds don't recommend them unless they feel there is some important reason for doing so. As I mentioned in my previous post, I may not have been treated for bart because it was not showing up in my blood or urine, but it did show up in the spinal fluid.

The llmd that did mine is extremely well known in the lyme community and like many, does not do these without careful thought. They are invasive no doubt but they can be useful.

So I know those of you that had very negative experiences are going to be highly negative of the procedure, but stop and think before you post. I'm not saying that the negatives shouldn't be presented, but take into account what this newbie is trying to learn and inform the person without the doctor bashing and sarcasm.
cootiegirl

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by perplexed:
Hope Dr C in Mo does not do them...OYE

Jean

Nope. Not to worry!

I agree that we shouldn't scare away richge....sometimes we do go a bit overboard here!! Come back, rich! We're just trying to help!

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Lymetutu

Posted by Ruffy (Member # 7146) on :

Cootiegirl, what were you treated with for Bartonella?

Posted by timaca (Member # 6911) on :

The Columbia lyme web site states this about lumbar puncture (www.columbia-lyme.org)

Lumbar puncture for spinal fluid (lumbar puncture when patient has been off antibiotics for at least 1 month). Normal CSF does not rule out CNS Lyme Disease, as 20-25% of patients with confirmed CNS Lyme Disease may test negative on routine tests. The spinal fluid should be sent for the routine tests (e.g., total cells, protein, VDRL) and Lyme markers (ELISA, PCR); when sent to the lab, a matching serum sample should be sent to enable the evaluation of intrathecal antibody production.

Tina

Posted by Michelle M (Member # 7200) on :

quote:
Originally posted by cootiegirl:
Some posters here are becoming judgemental and doing some borderline doctor bashing ("What kind of doctor are you seeing that would suggest this???")in this post for the suggestion of a spinal tap and I don't think that is an appropriate approach to take here.

There was no doctor bashing or judgment intended. If this advice came from a Lyme literate doctor then I am sure he knows of which he speaks! My only worry would be if it came from a non-Lyme doctor. If I had been to an LLMD before spending a lot of time and money with my quack neurologist and his quacky Quest titers, I could have skipped the whole spinal and my "CNS involvement" would been amply proven by an MRI full of lesions.

Spinal taps are an excellent tool to rule out other things when appropriate. It's great to read they've been positive for so many on this Board. If an LLMD recommends one, I'm all for it. If a non-LLMD recommends one, I'd still raise my eyebrows.

If any sarcasm was perceived by anyone reading my post, none was intended.

Michelle

Posted by richge (Member # 7325) on :

My Dr. was recomended by a friend who works for a goverment agency that has a lot of people in the field who get bitten by ticks. He teaches at a prominent Med school in my area and has speaclized in Lyme research. He reviewed the most recent blood tests from my GP which were all positive for Lyme and checked me for symptoms. Based on his analysis he wants to see if the Lyme has gotten into the nervous system before he decides on treatment. The cns fluid will be analyzed for all the standard tests and Lyme also and will be compared to a blood test at the same time. I feel this is a very rational approach and will follow through with it and hope to get cured.

Posted by pab (Member # 904) on :

richge,

Did your doctor talk about co-infections?

I know some people have tested positive for Bartonella in their spinal fluid and not in their blood.

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Posted by Michelle M (Member # 7200) on :

Hi Rich, thanks for checking back in! We sure didn't mean to scare you off.. I just wanted to make sure you knew that a LOT of people with Lyme get negative or "normal" spinal taps and if they have non-Lyme literate docs, sometimes their docs will then tell 'em, "Well, no Lyme HERE!" So I just wanted to make sure you were in good hands and prepared that a normal spinal tap does NOT rule out neurological Lyme! I have numerous white matter lesions on MRI and massive headaches and highly positive IgeneX blood work, yet the only thing abnormal about my spinal tap is elevated proteins.

So keep us posted; it sounds like your doc is knowledgeable. We're not TRYIN' to be annoying, just wanting to make sure you get the best care! :-)

Michelle

Posted by richge (Member # 7325) on :

Thanks for all of the responses. With all of the different opions on the subject, I'm going to go with my gut and follow my doctors lead. We must all eventually must take control of our own destinies and do what we think is right for. If I'm not happer with my doctor at any point, I will see a LLMD local to me (Dr. FEI*) and start that route. The problem with the LLMD's in my area is they don't take insurance.

Posted by TickTockPollyWog (Member # 7405) on :

Yeah, lumbar punctures are an interesting topic. Some docsdo them because they could potentially come positive for Lyme with CNS involvment. However, is that the reason you oc is prescribing one? This might sounds weird, but a few days back, I was at a doctor to get my abx changed as cefuroxime was not working. Anyway, he decided that I MUST have a spinal tap as it would "PROVE to the world" that I do not have Lyme. This is kind of bogus. I called a bunch of other docs and they all agreed that this was an ultra-conservative doctor's duck moment and that because spinals have complications, and would definitely for me, to avoid them, definitely.

Just check it out. LPs are not a find all for Lyme.

Posted by dleemuse (Member # 7157) on :

rich,

I've been to a conservative (this out of his own mouth) LLMD and he rested his whole diagnosis that I did not have Lyme on the negative LP. And he also ``teaches at a prominent Med school in my area and has speaclized in Lyme research''.

I was seen by him for about 16 months, each month I would ask, "If I don't have Lyme what do I have"? His response was ``I don't know''. His final ditch effort was to do the LP. If it was positive he would start IV antibiotics before I left the Hospital. When the results came back he told me the test was negative and that he could not help me and that I did not need to see him again. Talk about devastation...

dlee

Posted by Sue vG (Member # 3143) on :

A diagnosis of lyme does not require a lumbar puncture. If you twitch, have paraesthesias, or have cognitive difficulties, it's in your nerves.

No LP needed to know that. I've always chosen not to waste the time, pain, or money.

Very importantly -- on the local news last night, they mentioned that a local woman had just DIED from complications from a lumbar puncture.

Please think long and hard before undergoing this procedure for really no good reason.

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