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Lyme Disease Spinal Tap

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Posted 12/13/2010 9:08 PM (GMT 0)
So I'm new...
Names Kris Hi :)

But I've had Lyme Disease since June of this year, I've been on 3 different antibiotics, and now it's on to a spinal tap tomorrow (I think)
I was wondering if anyone has ever had it done, and does it hurt ?! My doctor wasn't to get it done because of the serve headaches, and neck pain that I've been having. cry I read up on it, as I do EVERYTHING now, and it doesn't look so bad, but sheesh everyone's horror stories are making me nervous.

Post Edited (Lyme.Fighter) : 12/13/2010 3:00:05 PM (GMT-7)

Posted 12/13/2010 9:41 PM (GMT 0)
Hi Kris!

Welcome to the forum!! Sorry about the reasons you're here, though!

I've had a spinal tap, and for me there was little pain, mostly pressure. The hardest thing was keeping still the whole time. If you make sure to lie flat for at least 24 (48?) hours after the procedure, your chances of having headaches are slight. I didn't have any headaches after my spinal tap.

Good luck tomorrow! Please keep us updated!

JoAnn
Posted 12/14/2010 2:20 AM (GMT 0)
Hi Lyme.Fighter,

Welcome to the forum! I've also had a spinal tap done and it wasn't as bad as I thought it would be. I got myself worked up for nothing. I felt no pain at all, just a little pressure. What exactly are they checking for? If it is for Lyme Disease, there is like less than a 10% chance that a spinal tap will even show that you have it since the bacteria are normally in the blood when the infection is new, then they move to the tissue, bones, etc.
Posted 12/14/2010 3:27 AM (GMT 0)

CajunGrl said...
Hi Lyme.Fighter,

Welcome to the forum! I've also had a spinal tap done and it wasn't as bad as I thought it would be. I got myself worked up for nothing. I felt no pain at all, just a little pressure. What exactly are they checking for? If it is for Lyme Disease, there is like less than a 10% chance that a spinal tap will even show that you have it since the bacteria are normally in the blood when the infection is new, then they move to the tissue, bones, etc.



Hi CajunGrl,
thanx for welcoming me :) but they've already tested it and my test have came back positive I've had Lyme Disease since June, but they're testing to see if it's traveled to my spinal cord, or my spine (one symptom I have really bad from the Lyme Disease is Memory Loss, so I can't remember which lol)
Posted 12/14/2010 4:17 AM (GMT 0)
OKAY, so you all know what question Bucci is gonna ask, right?

HAVE YOU BEEN GIVEN THE SPECIAL THICK BLOOD TEST?

ISAC panel

NasaLady help me here please....what is the other name for it? can you cut n paste the
explaination?

what is the advantage of the spinal tap if the lyme is there? what different treatment would you get? I am thinking that anyone who has this for over 2 yrs has it everywhere.

my stroke peoportions migrains and that specific neck pain that came along with those headaches is GONE
after finally gettin my blood thinned out.
Posted 12/15/2010 7:06 AM (GMT 0)
Lyme Fighter.....is your doctor a real lyme doctor?
how many lyme patients does he have or treated and for how long?

I don't get it. everyone with lyme has headache and neck aches.

what antibiotics . IV ? oral? which coinfections do you have?

a spinal tap is NOT a light thing. it is invasive . I wonder do you get some kind of advanced treatment by having a spinal tap? THICK BLOOD. google about thick blood and lyme disease.

is he giving you supplements? Does he think you have something else besides lyme?
Posted 12/16/2010 2:15 PM (GMT 0)
I had spinal done couple months ago, I think alot has to do with the person that is doing the test, mine was done under x-ray and i had very little pain, I have heard of people having alot of pain, but I must say for that type of procedure the only trouble i had was laying around that long, my doctor had some paitents that tried to mow the lawn afterwards so he made you stay at the hospial for 8 hours.... that was worse then the acutal spinal for me.
Posted 12/17/2010 9:39 PM (GMT 0)
Lymefighter,
How are you doing? Did your 'recovery' from the spinal go well?

Are you on any treatment for your Lyme Disease?
Posted 12/19/2010 1:45 AM (GMT 0)

JunkYardWilly said...
when did you symptoms start? if youve tested positive for lyme and you have theses symptoms why would you do a procedure like a spinal tap to tell you, maybe, what you already know? who cares if its in your spinal cord or not? either way you have to treat the disease to get symptom relief.


Symptoms for my headache started back in August, I told the doctor before I started my second treatment (which did NOTHING) and now that I'm experiencing really bad neck pain she wants to do a spinal tap... *shrugs*
Posted 12/19/2010 1:49 AM (GMT 0)

bucci said...
Lyme Fighter.....is your doctor a real lyme doctor?
how many lyme patients does he have or treated and for how long?

I don't get it. everyone with lyme has headache and neck aches.

what antibiotics . IV ? oral? which coinfections do you have?

a spinal tap is NOT a light thing. it is invasive . I wonder do you get some kind of advanced treatment by having a spinal tap? THICK BLOOD. google about thick blood and lyme disease.

is he giving you supplements? Does he think you have something else besides lyme?

Hi Bucci.

She's a Infectious Disease doctor, so I'm guessing that's not a real Lyme Doctor...
I feel so uneducated about it all really cry

right now I'm not on any antibiotics because she wants to wait for the Spinal Tap to come back before we start my 3rd Treatment, which will be through the IV, and as far as I know I don't have any co infections, I've done a Blood Culture so far and she said everything that she's tested for has come back fine.


but I will definetly be doing a research about Thick Blood...
and no, no supplements...
Posted 12/19/2010 1:51 AM (GMT 0)

Traveler said...
Lymefighter,
How are you doing? Did your 'recovery' from the spinal go well?

Are you on any treatment for your Lyme Disease?


Hi Traveler :)

I am scheduled for the spinal tap on Tuesday... :(
and right now I'm not on any treatment for my Lyme Disease, she has taken me off of everything until the results from the Spinal Tap come back.
Posted 12/19/2010 1:36 PM (GMT 0)
Lymefighter....

 

If you already tested positive for lyme. Then there is no reason for the spinal tap. If you have had it for 6-7 months now or longer...Then common sense is, yes....it is in your spine,brain ect.

 

I had a spinal tap years into being ill. It showed "nothing"....

 

A Lyme Doc knows that it does not necessarily have to be in blood or spinal fluid.

The bacteria likes to imbedded in brain, bone, muscle so testing for it in blood and spinal fluid is a hit and miss.

 

I am not for spinal taps. I was sick sick sick "er" days after....

 

One has to be careful that the doctor isn't having test run to fill their bill folds.

 

Seek out a doctor that is Lyme Literate.

 

You need treatment now not waiting till after a test is run.

Just MY opinion....

 

tongue  

Posted 12/19/2010 5:29 PM (GMT 0)

jojo55 said...




<font color=#800080>



<font color=#800080>



<font color=#800080>The bacteria likes to imbedded in brain, bone, muscle so testing for it in blood and spinal fluid is a hit and miss.

I am not for spinal taps. I was sick sick sick "er" days after....

One has to be careful that the doctor isn't having test run to fill their bill folds.

Seek out a doctor that is Lyme Literate.

<font color=#800080>You need treatment now not waiting till after a test is run.



<font color=#800080>

[img]/community/emoticons/tongue.gif[/img]

Thanx JoJo

I'm starting to see what you guys are saying when it comes to the Spinal Tap, and I believe I'm going to hold out on it. I guess when your not so educated about something and very disparate for treatment that you'll do darn near anything, to get answer's for treatment ! but talking this other with my mother, I think we're going to hold off on the Spinal Tap and figure out something else.
Posted 12/19/2010 7:23 PM (GMT 0)
I do held off on the spinal tap and sought a lyme doctor. The neurologist who wanted it and infectious disease dr. I was going too didn't know anything about lyme. I do not believe mine would have shown up in the spinal tap anyways. That being said, the LLMD is treating me and I am getting better. I am confident I made the right move. However, my insurance has denied me IV based on no spinal tap. who knows if they woudl have approved more than one month anyways even if it had been positive adn I believe I need much more treatment than that. Best of luck to you.
Posted 12/24/2010 1:39 PM (GMT 0)
hey lyme fighter...did you get the tap? what they say??
Posted 12/24/2010 7:21 PM (GMT 0)

bucci said...
hey lyme fighter...did you get the tap? what they say??


Hey Bucci

I had my spinal tap on Tuesday, all in order for insurance to pay for my IV treatment...
BUT a few days later, I'm having really bad complications, really bad headaches, having to be in the bed ALL day, i had to return to the hospital the day after and had to have fluid replenished, and had pain pills, which made me REALLY sick !!!! and today Christmas Eve, I'm still dealing with it :( please someone help me !!! - but I don't know the results of the spinal tap just yet.
Posted 12/25/2010 2:37 AM (GMT 0)
Oh, Geez Lymefighter!!
I am soo sorry to hear all that you have been through the last several days!

Does your Doc knows that you are still having these headaches?

I looked up spinal tap headaches & suggested treatment using Google & thought some of the suggestions sounded good - but please be careful!! Don't over-do on anything. The sites all said that this kind of a headache just has to run it's course.

I do hope you can get some relief very soon! Again, please make sure your doc is kept informed about your headaches.

Then, I would suggest that you just rest & recuperate. Do your best to enjoy Christmas, you'll just have to do it from the couch.

Take care of yourself!
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