lumbar puncture 
Author Message
 lumbar puncture

Has anyone had a lumbar puncture during the whole diagnostic phase? I guess
they are trying to rule everything out to be sure its Lyme although after all
my reading, I'm convinced I am.  I read Dr. Burrascano's article where he
states it isn't always indicated.
I did have a positive IGM blot test and they are repeating that and the IGG
sending to two different labs.
I am petrified about this test. Hope I can sleep tonight.  Yet, I want so badly
to know what's wrong with me!! Doesn't this sound like Lyme disease.  I've had
severe fatigue and joint pain on and off for a few years.  Was diagnosed with
lupus and fibromyalgia.  A few weeks ago a temperture started and I collapsed
at work.  I have had continuous headache, stiff neck, shooting pains in my
joints, numbness and tingling, burning and the new one itching everywhere.
Still have a low grade fever.  My own feeling is I've had Lyme for a long time
and its been undiagnosed and now I'm in the late stage with an active infection
going.  They also did tests for EBV, CMV, toxoplasmosis and a few others.
Thanks.
lisa


Fri, 20 Jul 2001 03:00:00 GMT
 lumbar puncture
In my humble opinion I do not see the need for a lumbar puncture. It can not
rule out lyme disease or MS. If you get a high T-cell count that might indicate
Multiple Sclerosis, but what causes Multiple Sclerosis? (Researchers don't
really know) Is M.S. caused by TRUE autoimmunity, or are there a higher than
usual amount of Killer T-cells because there might be an underlying Viral or
Bacterial Infection. In fact, there are a number of "respected" researchers who
are weighing in on the side of an infection.  Also, there have been a number o
f  Lyme patients who were misdiagnosed as having MS.  They were then put on
steroids which supress the immune system (Bad bad bad - big mistake). Well, why
not just accept the fact that you have some unusual symptoms and find a "lyme
literate" doctor who will prescribe Antibiotics. Why not just see if
antibiotics help. In addition your doctor may want to do the Western Blot.
He/She may have to do it more than once before you get a confirmative test, and
in fact there is the possibility you will never get a positive test. But the
main test would be how you respond to antibiotics (The right kind, the right
amount, for a lengthy duration). If you don't respond well, and you continue to
have symptoms then you may want to re-evaluate and ask for an MRI, which is
often useful in diagnosing MS.

Let us know how you fair...



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture
In my humble opinion I do not see the need for a lumbar puncture. It can not
rule out lyme disease or MS. If you get a high T-cell count that might indicate
Multiple Sclerosis, but what causes Multiple Sclerosis?

BUT, what if I have spinal meningitis or encephalitis?  Wouldn't it be good to
know this??  I have had a 100 fever for now 3 weeks and stiff neck.  Are fevers
common with Lyme?
Lisa



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture
Hey Lisa,
Stiff neck and fevers are common symptoms with Lyme, especially if you are
presently on a trial of antibiotics.  I had a lumbar puncture 6 months ago and
my Lyme tests came back negative - but my MS panel was positive.  By the way, I
have Chronic Neurological Lyme Disease - not MS...  I must also say that I
don't believe there is any difference between these diseases (including Lupus,
and Fibromyalgia)  except in treatment options.  I refeused all steroids and
have been on ABX for almost a year and a half with some inmprovement.  I may
have had this thing for as many as 30 years.
Anyway, as far as the proceedure goes, its not bad at all - really - I had a
little headache and was out of it for a day - actually now that I think of it -
that was a good day for me... lol
The only advise I can give you, is to trust your instincts about this thing.  I
would find a LLMD and get treatment.  Good Luck!
Paula


Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture
I was told to drink alot of Coke or Pepsi after the spinal tap.  It is suppose
to help keep you from getting a headache.  And stay totally flat for I think it
is 24 + hours...  Good luck!


Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture

One final thought.  MRI is noninvasive and a valuable tool for
differential diagnosis of neurological diseases.  If you are getting a
lumbar puncture shouldn't you also have an MRI?

Thank you for your well thought out and written response.  I had an MRI, an MRA
and an EEG when I blacked out three weeks ago and all were negative.  I'm going
to take your letter with me to my neurologist today.  I am leaving now for the
test.  Wish me luck everyone!
Lisa



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture


Quote:
(Karenlee7) writes:
>Subject:    Re: lumbar puncture

>Date:       2 Feb 1999 07:15:13 GMT

>I was told to drink alot of Coke or Pepsi after the spinal tap.  It is
>suppose
>to help keep you from getting a headache.  And stay totally flat for I think
>it
>is 24 + hours...  Good luck!

BTW, the dr. who performed these tests on my children assured them and me that
it was no longer necessary to stay flat for hours after. In fact, he told them
they could get up after about 20 minutes and walk about! I didn't think it was
a chance to take. Perhaps he had never undergone any of these tests, in the
dark ages, or recently.

He was Wrong. It wasn't okay. But what skin is it off his nose if two kids who
have already experienced too much pain get to have some more?

So, whatever they say, stay flat for a few hours. Someone can hold your Coke to
the side of the bed with a straw.

Carla  



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture


Quote:
(Luv ItLots) writes:
>In my humble opinion I do not see the need for a lumbar puncture. It can not
>rule out lyme disease or MS. If you get a high T-cell count that might
>indicate Multiple Sclerosis, but what causes Multiple Sclerosis?

I agree that the puncture doesn't necessarily provide specific answers (if
any),  but if abnormal in any way it's very significant. There are diseases
other than Lyme and MS that the LP may detect.  The odds of proving Lyme
disease itself are relatively low statistically, but if you happen to be
someone whose LP was Lyme positive (not mine) then you'd probably feel that the
LP was worth it.  Not only would you have a diagnosis, but less insurance
hassle with treatment options and disability applications. (Note I said "less"
hassle, not smooth sailing <g>.)  

I also think that someone testing positive for LD by other methods can better
afford  to weigh against the benefits of having an LP than those with no clear
idea what's wrong.  

You make an excellent point that a negative LP doesn't rule out MS or Lyme
disease.  Some patients have been really hurt by those clinicians and/or
insurance companies who aren't aware of this fact.  That's a problem in the
medical system that needs work.

Mary



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture


Quote:
(Mar{*filter*}) writes:
>I also think that someone testing positive for LD by other methods can better
>afford  to weigh against the benefits of having an LP than those with no
>clear idea what's wrong.  

Wow. Did I write that paragraph?  I don't even understand it <g>.  I meant that
it's easier to refuse a spinal tap if you already have a diagnosis.

There, that's better <g>.

Mary



Sat, 21 Jul 2001 03:00:00 GMT
 lumbar puncture
I have had 2 spinal taps looking for MS in the beginning....didn't get the
headache with either.  Make sure you drink something like Mt dew, and stay
down.  If you should get a headache, call the doc immediatly for they can do a
{*filter*} patch and stop the pain.  By the way it didn't even hurt at all.  


Sun, 22 Jul 2001 03:00:00 GMT
 lumbar puncture
I have had several spinal taps with no side effects.  I was up dressed and
ready to go home in half an hour.  If your are having a tap make the dr checks
the opening and closing pressure, it could be the cause of the headaches and
neck pain
Carol


Fri, 27 Jul 2001 03:00:00 GMT
 
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