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.

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

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

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.

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

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...

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.

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.

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.

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!

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.

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

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.

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

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...

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.