I have neurolyme and there is no information that a spinal tap could have provided that would change my current reality.

I am really glad I've chosen not to have one, especially since my spinal column has already been invaded once for back surgery and probably will be again soon.

A spinal tap isn't required for a lyme diagnosis. If your sx are responding to antibiotics, chances are good that your problem is lyme and not a neurological disease that spinal taps are generally used to rule out.

Please give some serious thought to what you're really trying to accomplish with this procedure. What information do you need that you don't already have? Is this information likely to change your treatment?

Maybe there's still time to bail out and save your tailbone. Good luck whatever you decide to do.

i was afraid to take anything for it, but finally took some Motrin and it helped.

i know that you have to stay hydrated, but don't over dose on liquids because that will make you go to the bathroom and actually have the reverse effect.

but drink maybe some Gatorade because that has electrolytes in it as well, and some water.

and lie still for a long time afterwards. i doubt that they will let you get up, but that is important.

i know that there are other techniques to avoid the headaches or other problems. hopefully some others will post on this.

i think there is something called a bloodpatch. i'm not exactly sure what that does.

i'm sure others will post.

The procedure was not painful, and I was semi-conscious through it. I did have problems with acid reflux afterwards due to having to eat and lie flat for several hours. You might have some tums handy just in case.

I think having an LP for Lyme testing is not a good idea.

LPs are the only thing that have reduced my kids' headaches. (I still think they have increased intracranial pressure.)

The fluid was tested when they had their LPs and nothing was found.

I would have only allowed the test to be done for him as he knew the correct labs to use...incidentally the fluid was negative for Bartonella and showed I was not demylineating but had a high WBC showing chronic meningitis.

I got a spinal headache whish was very bad so to avoid this lie absolutely flat for hours after the procedure and do not even raise your head...not everyone gets this but if you do it's pretty painful.

quote:

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Originally posted by thislittlepiggie:
Thank you all for your responses.
To clarify my situation, I am having the procedure because my neurological symptoms have gotten signficantly worse and I have developed some new and unusual symptoms that my LLMD is a bit concerned about. I have had a brain MRI to rule out MS or Lyme lesions and that was negative. Because I am NOT responding as well over the past 9 months with various trials of abs, he would still like to be sure that there is nothing beyond the Lyme (and babesia, etc.)going on and this would be a more confirmative test. It will also let us know the level of "infection" and perhaps lead to me what new direction of treatment to head towards. We have put this off and done lots of other investigation, but we are down to this at this point and I have a lot of faith in my LLMD as well as the NEUROLLMD who is doing the procedure. Just hope to get something good out of it!
I really appreciate the suggestions. Does not sound quite as frightening anymore. Thanks to all of you. lj

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Littlepiggie just explained why she's doing the LP. It's not for diagnosis.

If it were for diagnosis, I'd say NO in capital letters. [ ]

You should know that I am one of those "fortunate" ones who has had a positive Lyme titer twice, and babesia as well, so my MDs do not have any doubts about that diagnosis.

However, after years of treatment I have gone from "typical" Lyme symptoms to some "unusual" symptoms that could suggest other possibilities in conjunction with the Lyme. In fact, one of the other tests they may end up doing is a scan for an adrenal tumor, but this procedure came first.

I do mirror everyone's concern about having any unneccessary or "useless" procedures that really never quantify results or change the course of your treatment. Not to mention being disappointing when a test does nothing to help clarify things, we all know that the cost of all of this mounts and certainly we have to be careful where we put our time and energy and money so that we make the most of our treatment.

If you need more information on adrenal tumors ( and the doctors that can PROPERLY locate them- much like finding a LLMD)

please let me know. I have an adrenal tumor ( except mine isnt on my adrenal) 90 percent rule- 90 percent ARE on the adrenals, 10 percent arent.

They havent located mine yet. THinking of doing a MIGI scan?

They are ruling out other possibilities through the results of the tap, and if those possibilities have not been defined, they have suggested that we consider looking for an adrenal tumor as the next possibility. It just was not as likely to be the cause of my symptoms, so it is being checked last.

In that case, they will be scheduling an abdominal scan and I will have to see what happens there.

Dear Bryan-
I can understand your concern about invasive procedures. I have worked in the medical field for twenty years and have learned that there are generally many alternatives to just about anything out there.

In fact, virtually all of my Lyme treatment has been "unconventional" and includes lots of alternatives that my LLMD has thankfully been aware of and suggested to me.

This is the first truly invasive thing I have considered, and only because I have had a number of other tests over the past few months which have not yielded any helpful results.

I do, however, believe that sometimes the last place that you look may be the place that you find what you are looking for, and sometimes that means having something done that is not as pleasant and certainly was not my first choice.

I greatly appreciate the information on Rife since I had heard a lot about it but had not read up on it yet. If I find that I am "only" battling Lyme I will gladly get the book and research it further.

Get the Bowen test instead. Yes, you do have to lay flat so you do not get the dreaded headache. You probably need a good coinfection test instead. I went to 16 different doctors and this included all types.

But wondering if the NeuroLLMD is at Dartmouth Hitchcock? (I noticed the NH location).