I have been suspect that I have lyme disease for some time. Since an
episode with steroids I have been really sick.Lyme and steroids I hear
is a bad combination. I have been tested for everything under the sun,
all I have is a low/avg white {*filter*} count, they say this is normal.
After much pushing and prodding i got my doctor to give me a {*filter*} test
for lyme, well it was the worst test, I think it is the antibody
response test. Well I was on anti biotics at the time of the test, so
had no chance of getting a positive with this test. Even if I wasn't I
hear it gives lots of false negatives. Ok well now he gives me the
choice of getting a lumbar puncture, OH MY! He says this will positively
confirm tertiary lyme. Well I don't think this is true. Isn't there a
better way to test for this. Elisa or Western blot or something. If
these fools don't find something with this test I am truly doomed and am
gonna be left to be sick, this is not ok as many of you already know!
What are my choices. They have already basically taken all my money
poking and prodding me this last year. I am now at the mercy of my
current medical cares decision.. Any help would be appreciated!

Debi

Although I am new to this as well (finally diagnosed this week), I have been
following the newsgroup for about a month. I would definitely recommend an
Elisa or Western Blot before getting a Spinal Tap done. The word "Spinal
Tap" does scare many people, but there aren't really any complications. The
tap is actually done in your lower back (about the same height as you hips)
where there is no spine, it's more like a reservoir area for spinal fluid.
Therefore the chance of them damaging your spinal cord is technically
un-existing. The only real complication is if they were to not sterilize the
area and equipment properly and actually propagate an infection into your
spinal fluid, but this is very, very rare.

I had a Spinal tap done while at the emergency room so they could rule out
Spinal Meningitis. Unfortunately they did not use it to test for Lyme
disease. If you do decide to get the tap, here are some suggestions:

1. Find a doctor that has done many of them.
The one I had was in training and had a supervising doctor looking over him.
He tried 5 times and kept on hitting a disk. Finally, the supervising doctor
took over as he saw in how much pain I was. It's the worst feeling as the
whole surrounding area is numbed, but the bone isn't. I can still feel the
sensation when I think about it.

2. There are several positions that you can be in while they do the tap.
From what I understand, and with mine and others experiences, being on your
side and in a fetal position is the most comfortable way and supposedly
reduces your chances of the severe headache Elayne mentioned, whcih is due
to the change of pressure caused from the removal of the spinal fluid. When
I got mine done, I had no headache.

Hope this helps...

Nelson

I have two problems with a spinal tap.  First this is not a 100% proven
test.  You can still have LD but test negative.  As in other tests it
only proves that there was, or wasn't, Bb in the sample taken.
Remember Bb likes to hang out inside cells.  Second, I've seen people
hospitalized due to the after effects (ie: headache).  However, that
isn't the norm.

The WB and Elisa have a 30-40% accurracy rate without antibiotics.
These two tests trigger to antibodies, which can be destroyed by the
abx.  As you have been on abx, you might want to try a LUAT through
IgeneX.  They are located in Palo Alto, CA.  Have your MD call them at
800-832-3200 and speak to Nick Harris PhD.  Or call yourself and ask
for their reference material on the LUAT.  This is a urine antigen test
which requires the use of abx as part of the test procedure.

Mike

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The company refused to pay for his IV Rocephin in December when there
was no LP done.  In light of the June LP, I soon will be talking to
them
about this denial of benefits (they are certainly not going to bring
the
topic up!).

Positive serology is what many doctors and all insurance companies want
to see.  This is why so many lyme patients incur large out-of-pocket
expenses.

Ray

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Many of your observations are true, but I have to tell you that I had a

have terrible back pain from it. The procedure was extremely painful
even with 4 shots of Novacaine!
                                          Joan

This is sad that the medical profession treats us like this. Making people
suffer, it just makes no sense. I will try some of the other
recomendations. I didnt think the lumbar puncture was 100% accurate like
they said. I don't want to risk any side effects with it either. These
foolish doctors have done enough damnage to me already. I will take the
suggestion of the luat and Elisa/western blot and see what I can get there.
I live in colorado but am still unable to find a lyme literate doc. I know
there is one here but the doc in the ID clinic will not tell me who he is ,
because of thefact that he gives the clinical diagnosis. Thanks for all
your help everyone! P

- Jon

The main complication of a lumbar puncture is a leak after the pucture
and the subsequent need for a {*filter*} patch. When your spinal fluid
leaks out from your back your brain looses its cushion against your
skull. This makes it utterly impossible for you to raise your head at
all due to the incredible pain. When they introduce 75cc's of your own
{*filter*} back into the pucture site you feel as though a mule kicked you
as hard as it could in the back and the pressure is astoundingly
severe. After this gets reabsorbed you have to wait for your fluid to
go  back to mormal and you will have inflammation at the site
for a very long time, sometimes months.

It is an invasive procedure.
The results depend not only on the skill of the neurologist but upon
your unique anatomy. Sometimes even a seasoned neuro can cause
an electric shocking jerk with the injection no matter how good he/she
is. Read the release form.....that will tell you what the risks are.
The first time and last time I had one all of these things happened to
me. I had no idea ....I was told it was over in a jiffy and it was as
easy as pie....well, the majority are and going into it the first time
I had no reason to think mine would be the one from hell. So if it is
your first....there's no reason to believe it will work out badly
unless you know you have narrow channels for your spinal cord or
you have a deficiency of platelets or an increased bleeding time.
You can have these {*filter*} tests done and then make your decision.
It is an invasive test and requires a lot of thought. I would have
another if it was a lifesaving effort for me or the information gained
would 100% rule out something for which I was being evaluated.
As usual these situations are highly individual.

Cheryl

 but there aren't really any complications. The

(much snipping done here)