Re: Lumbar puncture

[Guest guest]

susan, what are u looking to find out thru the lumbar puncture.....a positive

lyme dx....remember lyme is a clinacal dx and nothing else .ALL TEST ARE

INNACURATE the lumbar pucture will only show if the spirochettes have invaded

ur spinal fluid...i have chronic lyme....including numerous nuero problems

.....both my llmd and a number of nuero specialist have agreed that the spiros

have invaded my brain.......i too use to be like u....looking towards blood

test to validate feeling this way .....and to prove i am not a head

case.....i no longer care what others think ....i know i have lyme......i

have tested all sorts of which ways....positive

.....negative....equivocal.....on numerous blood....urin and coinfection

test.....the proof of the pudding is how i feel.....if it walks like a duck,

quacks like a duck it looks like a duck .....IT IS A DUCK.... same thing with

lyme....i am considered TOTALLY DISABLED BY SOCIAL SECURITY AND MY PENSION

PLAN DUE TO LYME.... believe me they sent me to a million docs before they

decided to pay me ( i am only 41 now have been disabled since 1996) and

hopefully will be settling a workmans comp suit on lyme shortly......all this

with very varing differant test results......to many people including alot of

insurance co.s what test result proof ....with this disease they mean

nothing......if it makes u feel better mentally by all means go thru with the

test......when i was told it would really prove nothing other than spiros

present.....and that was only if they were luckily activwe in my fluid at

that time i decided not to have it done......i am uncomfortable enuff without

going thru that........but u must make up ur own mind ......remember these

are just my informed opinions and my feelings .....i shall keep u in my

prayers and good luck........Reid

[Guest guest]

Reid and Val,

Thanks for your input. I'm doing the LP for two reasons: one, my insurance

company won't approve IV unless they have proof that I have neuro Lyme. This

seems to be the only test available to prove it; and two, my neurologist is

concerned that my neuro problems aren't getting any better even after

treatment. She's afraid that they missed something.

I know I have Lyme. My 3 day LUAT test came back 177, 174, and 272. But my

insurance company doesn't except that as a valid test. My WB and ELISA tests

have been negative for years. This test seems to be my last resort to get IV

treatment. But it feels like the insurance company is blackmailing me into a

horrible test just to get treatment -- I bet they hope I won't do it! I just

hope it shows something. And I'm praying that I don't get the headache -- my

sister's company has box seats for the Dave 's Band two days after the

procedure. Since I started with the neuro Lyme I'm terribly claustrophobic,

this is the only way I can get to a concert!

Thanks again, and wish me luck!

[Guest guest]

amazing, i just called a dr. office and they insisted that i do a lumbar

puncture. i hung up. like reid i know i have LD, positive western blot +

symptoms. i felt the dr. office was way off making such a suggestion. i am

sick of TESTS. just treat me!!!!!!

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

SCSullivan@... writes:

> I'm doing the LP for two reasons: one, my insurance

> company won't approve IV unless they have proof that I have neuro Lyme.

> This seems to be the only test available to prove it; and two, my

neurologist is

> concerned that my neuro problems aren't getting any better even after

> treatment. She's afraid that they missed something.

Hi ,

I just wanted to put my two cents in. My LLMD called me about 4-5

months

ago at 10:00 PM in the evening ... when I hadn't called him! I didn't like

the feel of that right away. It's hard enough to get him to call us back when

we ask him to, but he is a very busy LLMD.

I was getting worse and worse even though I had been on large doses

of orals

for over two years. What he said in essence was ---- that he thought HE had

done all he could for me and perhaps I had other diagnoses along with the

Lyme. I tested positive with a WB from the beginning. I asked him like what

else and he said " Well, maybe MS or ALS. " I thought and then said " Then I

hope it was ALS cause at least you die! This being sick forever was giving me

no quality of life! "

He sent me to another Neuro who sent me to my first Infectious

Disease Specialist. He was willing to start me on IV right away. We had

already done the Lumbar route a year ago so I didn't know what else they were

going to do. My insurance demanded the same thing. Another lumbar and this is

a quote " a new LYMES test! "

Well, anyway, the saga goes on but here is the bottom line. I went on

IV, did 6 weeks of Clafron and seven of IV Doxy, and guess what ------ I'm

better for the first

time since I became ill with Lyme 3 years ago June 26th!!! Guess it wasn't

MS or ALS,

just UNDERtreated Lyme disease.

I know you hate the insurance companies games ... we all do, but I

can only hope that one by one, we all get better with the proper treatment

for our illness.

My best,

Marleen

[Guest guest]

Marleen,

I'm so glad to hear you're doing well! I'm guessing that your LP did show

Lyme, right? Please tell me that you didn't have a headache for 2 weeks

after the test -- and if you did LIE to me, and you can tell me the truth

next Thursday after I have mine done. LOL! So, you needed a new " Lymes "

test -- and these are the people controlling our treatment. It scary!

Thanks,

[Guest guest]

SCSullivan@... writes:

> I'm guessing that your LP did show

> Lyme, right? Please tell me that you didn't have a headache for 2 weeks

> after the test -- and if you did LIE to me, and you can tell me the truth

> next Thursday after I have mine done. LOL! So, you needed a new " Lymes "

> test -- and these are the people controlling our treatment. It scary!

,

I didn't have to have it AGAIN this time ... because my ID specialist

spent

time on the phone with them and he explained that since I had one last year

(and it showed nothing conclusive) I didn't need another in his opinion. He

told them, that whatever tests they demanded he was NOT going to change the

course of my treatment and that was going to be IV abx treatment.

When I had it last year, I did NOT get a headache at all. That only is

supposed to happen to people who move TOO soon after the procedure.

I followed directions (not something I'm really good at <g>) and stayed in

the bed for as long as they told me. I don't remember how long that was but

I truly had no after effects. I'm not lying, I swear. It I had to lie, I

would have

just pretended I forgot to answer you. <G>

Just do what they tell you to do prior to the procedure and after. I

would

make one other demand of your Neuro. Tell her you want --- and will only

except

THE BEST, MOST EXPERIENCED, lumbar procedure person. NO interns, just

well oiled, well experienced Doctors!!!! You have that right but you must

speak

up first! I'm betting you'll be able to attend the event!

Marleen

[Guest guest]

Thanks Marleen,

I'll make sure I follow their exact instructions! I'm so glad you didn't

have a headache, and you were telling the TRUTH, LOL!!! My neuro will be

doing the test herself. She's not a warm-fuzzy kind of doctor, but I trust

her completely.

And for backup I'm bringing my sister with me. She'll be there for my

consult on Monday morning and for the LP on Wednesday. My sister is going to

make sure my best interest is the first priority. She's prepared to do

anything to make sure I'm comfortable, and the procedure is done exactly as

the doctor says it should be. She's 5'6 " and weighs all of 110 pounds, but

I've seen her intimidate grown man without blinking. I'd feel really bad for

any intern who tried to get near me -- she'd ripe them apart! <g>

Thanks again,

[Guest guest]

In a message dated 5/13/99 2:25:54 PM Eastern Daylight Time,

SCSullivan@... writes:

> She's 5'6 " and weighs all of 110 pounds, but

> I've seen her intimidate grown man without blinking. I'd feel really bad

> for

> any intern who tried to get near me -- she'd ripe them apart! <g>

Then you should be just fine! Do you loan your sister out?

Marleen

[Guest guest]

Hi MimiAnne,

I know what you mean, but unfortunately lots of doctors want to rule out

other diseases, they just cannot believe that Lyme can be the root of all

our problems. I have had several doctors suggest it to me, all except my

Lyme doctor and a neurologist I saw. My Lyme doctor was very surprised that

the neurologist did not insist on one, I think he started referring more of

his patients to this guy after I found him. My tick bite is such a vivid

memory to me, all my problems began the day I pulled the little sucker out

of my head. I know that in order to participate in some of the Lyme disease

studies, they insist on a spinal puncture. I really think there are other

things the fluid they analyze can tell them.

Best to you,

Marta

--

>From: mimianne@...

>

>amazing, i just called a dr. office and they insisted that i do a lumbar

>puncture. i hung up. like reid i know i have LD, positive western blot +

>symptoms. i felt the dr. office was way off making such a suggestion. i

am

>sick of TESTS. just treat me!!!!!!

>

[Guest guest]

Hi , I will pray for you that you don't get the headache. I also pray

that shows up positive for lyme. I understand your doctors concerns, but the

spinal is very inconclusive for lyme probably as inconclusive and the blood

tests. I hope you get a HUGe postive result so yo can start treatment. it is

also interesting to know that the bigger you are in size the less chance you

will have to develop the headaches. If you are anything like you described

you sister, than you will have much greater chance of developing the

headaches. I will be praying for you God Bless you!! Feel better-Val

[Guest guest]

susan ....godd luck.....glad my insurance co. was not as bad as

urs......personally i would fight them on the issue......but thats what i am

use to doing anymore is fighting all the powers that be over lyme....just a

suggestion ....send as much information about lyme to ur ins. co....cc the

state insurance board......it may help u in the future......i will keep u in

my prayers hope u have no headache and enjoy the concert.....i don't have

clustrophobia(sp) by do now suffer from agoraphobia.....i am only comfortable

in my own house .....i get anxiuos if i have to go anywhere else......my docs

say its due to lyme and not feeling well......who knows but i used to love to

visit and such......no more.......

Reid

[Guest guest]

Hi Val,

Thanks for your response -- It was very encouraging because I'm 6 foot!!!

(six kids in my family and we range in height from 5'3 " to 6'3 " , you should

see the family photos LOL!) This should really decrease my chance of getting

the headache!

Thanks again,

[Guest guest]

In a message dated 99-05-14 15:22:13 EDT, you write:

<< Hi Val,

Thanks for your response -- It was very encouraging because I'm 6 foot!!!

(six kids in my family and we range in height from 5'3 " to 6'3 " , you should

see the family photos LOL!) This should really decrease my chance of

getting

the headache!

Thanks again,

>>

Oh thats great , Again Good Luck and God Bless. I will be praying for

your quick and easy recovery-Val

[Guest guest]

Hi Deb,

Sorry that you're having these problems. The LP is a lousy test to use

to find spirochetes, but maybe it will satisfy your PCP if it rules out

other diseases.

What sx or positive tests convinced your LLMD to put you on 7 weeks of

IV abx? Seems to me that if he is Lyme-literate enough to put you on IV,

he'd understand why you are relapsing...

Good Luck,

Joan LI NY

[Guest guest]

Hi Barb,

Hope you are doing a little better after the LP. Try to remain laying down as much as you can, and don't forget to drink LOTS and LOTS MORE!!!!

We will all be here when you are feeling better. Don't over do it though, talking from experience, the headache can be a right bitch! The less you move around the better hon. AND DRINK!!!!

Take care and hope it all went ok!

*hugs*

Love Aisha

[Guest guest]

Barbara,

I'm glad that you seem to be doing okay, hon, but

SHAME ON YOU!!!! LOL

You're supposed to be in bed, sweetie! *giggles*

Let us know how you're doing when you are supposed to be out of bed.

*hugs*

Barbara wrote:

> Hello everyone! I had my lumbar puncture yesterday & I am feeling a

> little pressure in my head, neck, & lower back at the site. I will

> post more later as I need to lay down. My thoughts are with

> everyone! Barbara : )

>

>

> The Being Sick Community

>

> Visual problems with colors?

> Click the link below and select the modify link to your right. Then

> select the **Send Plain Text Email** option. This will stop you

> receiving emails with colored or enlarged fonts.

>

>

> Members Lounge:-

> Photo Album, memorial page, members profiles, birthdays, locations,

> medical resources, counselling via email, and a whole bunch of free

> things.

> http://www.elderwyn.com/members

>

> Message Archives and Digest Attachment Pictures:-

> messages/

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> chat.html

>

> Sharing our resources:-

> Add a website URL you have found useful.

>

>

> Personal Complaints or problems:-

> Please contact a moderator should you require assistance with anything

> technical or if you are upset by another. The email address for the

> moderators is <-owneregroups>

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

> convenience and receive no email.

> To modify your subscription settings please visit

> mygroups

>

> To subscribe or unsubscribe

> subscribe/

>

> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to

> what you believe, even if it's a tree that stands by itself. Hold on

> to what you must do even, if it's a long way from here. Hold on to

> your life, even if it's easier to let go. " - Pueblo Prayer

[Guest guest]

I am so glad to hear you are feeling better.

Love and prayers,

#4

[Guest guest]

Hi Barbara!!

*hugs* I'm so glad that you didn't get that nasty headache!!

Please do let us know how your next appt. goes, and what the blood work

says okay??

Barbara wrote:

> Hello everyone! Just to let you know that I'm feeling better. My back

> is still sore & bruised at the site, but other than that I'm alright.

> I really didn't get a bad headache (thank heavens), but I felt a lot

> of pressure when I got up to go to the restroom. (from all the fluids

> I was drinking). My doc said to drink lots of caffeine the first

> day. Can you believe that?? Yeah right, drink lots of caffeine & lay

> still for 48 hours.(I was bouncing off the couch & bed) lmao. They

> said the test results will be back in two weeks, so my next appt. is

> on Nov. 28th. Aisha, they also took blood! Can you believe that?

> What a shocker. I'll keep you informed on everything. So how is

> everyone? I sure have a lot of mail to read. Over 100 so far & they

> keep coming. I really enjoy being here though. I can't believe that

> this group started in March. Wow! What a turn out. Some people seem

> like they've known each other forever. What a great group!!! Hang in

> there everyone! Barb : )

>

>

> The Being Sick Community

>

> Visual problems with colors?

> Click the link below and select the modify link to your right. Then

> select the **Send Plain Text Email** option. This will stop you

> receiving emails with colored or enlarged fonts.

>

>

> Members Lounge:-

> Photo Album, memorial page, members profiles, birthdays, locations,

> medical resources, counselling via email, and a whole bunch of free

> things.

> http://www.elderwyn.com/members

>

> Message Archives and Digest Attachment Pictures:-

> messages/

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> chat.html

>

> Sharing our resources:-

> Add a website URL you have found useful.

>

>

> Personal Complaints or problems:-

> Please contact a moderator should you require assistance with anything

> technical or if you are upset by another. The email address for the

> moderators is <-owneregroups>

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

> receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

> convenience and receive no email.

> To modify your subscription settings please visit

> mygroups

>

> To subscribe or unsubscribe

> subscribe/

>

> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to

> what you believe, even if it's a tree that stands by itself. Hold on

> to what you must do even, if it's a long way from here. Hold on to

> your life, even if it's easier to let go. " - Pueblo Prayer

[Guest guest]

Hi Barb,

Why you on the puter? Go back to bed <BAWK>

"Just to let you know that I'm feeling better. My back is still sore & bruised at the site, but other than that I'm alright. I really didn't get a bad headache (thank heavens),"

Hope you still dont have that headache as I remember it being worse about 48 hours or so after the precedure - so go lie down!!! <BAWK>

"They said the test results will be back in two weeks, so my next appt. is on Nov. 28th. Aisha, they also took blood! Can you believe that? What a shocker."

Bout bloody time (says the Aussie) lol .... It does take a while for some of the CSF to be analysed, so its not surprising you have to wait two weeks. Do you know what blood tests they were doing? Any how am glad they did at least think to check your blood!

"Some people seem like they've known each other forever. What a great group!!!"

We are a definate family and I am glad you are part of it hon *hugs* Now go back and lie down!!!

Lots of love

Mother Hen

<BAWK>

[Guest guest]

Hi everyone! I'm new here lol.

Regarding spinal fluids,,,absolutely we get headaches if spinal fluid is

disturbed in any manner. I used to ask patients to lie flat on their backs

for 24 hrs,,,even eat that way and to not look up at visitors, etc. If they

didn't, they'd experience the worst headache of their lives (is how they

described it). For some reason doctors and nurses aren't requesting patients

lie flat like they used to. Don't know why,,, I hope this addresses the

question, I'm still getting to know how these groups work!

I am enjoying getting to know everyone thru emails and posts! I look forward

to knowing you all better. No one can know what it's like to have EBV,

except for those of us who have it. The support here is a big help!

Best wishes to everyone,

(aka Stormy - don't know how to change this at yet lol) PS if

this comes thru with all over the place, would someone kindly tell me how

to get rid of this html annoyance? Never happens except thru the group

sites. Thanks :-)

[Guest guest]

Sue

This headache is refered to as Orthostatic Headache ! !

I feel it is very possible that the extreme reaction may

have some parallel to the reduced blood volume issues.

That it may be possible that we may also have reduced

spinal fluid volumes. I doubt that this issue has been studied.

However it could surely account for the exaggerated headache and the

prolonged recovery time, to replenish the spinal fluid loss, given

a context where there may be a preexisting reduced volume by

whatever mechanism, that inhibits its prouction.

I am sure there are some serious Docs that have studied this.

I have heard that diminished fluid volume in the brain can cause

an inflamatory reaction of the tissues. I think thats called " itis "

known to us as headache. I think some of us get headaches can you

remember the pain ? Could be a sign of " itis "

Quintero

> Dear Quintero,

>

> You wrote, " I also had an L/P. The worst experience I can remember. "

>

> What's L/P?

>

> I'm sorry you had such a bad lumbar puncture experience. (You

wrote, " Took

> a couple weeks to get rid of the most incredible headache from

hell, before

> I could stand up. And balance and stumbling was significant for

months

> along with extreme increase in muscle twitching, etc. . . . " )

>

> I think some doctors underestimate the problems they can cause.

>

> In a recent Lyme disease study, by Klempner, the participants had

to have

> four spinal taps in a period of about three months. No wonder some

of them

> did not get better from the antibiotics!

>

> Best,

> Sue

> upstate New York

[Guest guest]

Dear Quintero,

Were you told to lie flat without moving for 24 hours after your lumbar

puncture? My friend did this, and had no headache. Could have been luck.

Sue B.

upstate New York

[Guest guest]

Hi, Sue B.,

>What tests did they do on the fluid? Did they send the results of your

>tests

>to you? Do you know what the overall result of the study was? Did you have

>any contact with Dr. Nadelson himself? When was this done?

>That's a lot of questions, but here's the most important one: Did you have

>any lasting side effects from the lumbar puncture itself?

The tests they ran were CSF appearance, protein, RBC, WBC, and subtypes of

WBS: lymphocytes, segmented, and monocytes. In my case all came out normal -

0 WBCs or RBCs which is good. I was hoping for viral titers too; given my

results it is next to impossible to have a CSF bacterial infection.

I always ask for the results, which they are happy to supply to me (as they

know I am medically literate) - I am sure they would give them to anyone's

MD if requested. Also, their policy is that they will report any abnormal

result to you immediately.

I have been a patient (? guinea pig?) at UMDNJ for going on 4 years now, and

have never met Hatelson. The LP was done by the PA there (Will - some E

European-sounding name that I always forget, but if you ask for Will

everybody will know who it is.) The LP was drawn early Aug last year I think

(did 2 expts so not sure) and the test date given is 8/8/00.

As for any long-term effects - I posted at the time that the only one I

noticed was that my constant headache was _relieved_ by the LP for a couple

of days. But I should note that this was a very clean LP, no leakage, no

blood at time of puncture, done in a space that is away from where major

nerves coming from the spinal column would be expected.

Jerry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi, Quintero,

>This headache is refered to as Orthostatic Headache ! !

>

>I feel it is very possible that the extreme reaction may have some parallel

>to the reduced blood volume issues. That it may be possible that we may

>also have reduced spinal fluid volumes. I doubt that this issue has been

>studied. However it could surely account for the exaggerated headache and

>the prolonged recovery time, to replenish the spinal fluid loss, given a

>context where there may be a preexisting reduced volume by whatever

>mechanism, that inhibits its prouction. I am sure there are some serious

>Docs that have studied this. I have heard that diminished fluid volume in

>the brain can cause an inflamatory reaction of the tissues. I think thats

>called " itis "

>known to us as headache. I think some of us get headaches can you

>remember the pain ? Could be a sign of " itis "

Maybe it was significant then that I was being especially attentive to

forcing liquids at the time of my LP - and had ( & still have) puffy hands &

feet. Maybe I succeeded in getting liquid overload, and the LP relieved the

pressure for a bit.

>I used to ask patients to lie flat on their backs for 24 hrs,,,even eat

>that way and to not look up at visitors, etc. If

>they didn't, they'd experience the worst headache of their lives (is how

>they described it). For some reason doctors and nurses aren't requesting

>patients lie flat like they used to. Don't know why,,,

I was made to lie flat for 3 hours. Then the PA checked the puncture site

carefully to look for signs of bleeding or leakage. He also cautioned me to

stay lying down as much as possible for 24 hours, and nnothing too physical

involving bending or twisting. But lying flat for 24 hours seems excessive

IMO, unless there are other problems that would retard sealing of the

puncture.

Jerry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

a lot of posters on this list have had negative lumpar punctures but

still have lyme.

i suggest forget the tests -especially the lumbar puncture. if it's a

question of in

surance i am not sure what to recommend. depends on your insurance a doctor and

a lawyer.

lyme is a clinical diagnosis most accurately.

i am still doing well on garlic and colloidal silver. still got a

stiff neck but now have

pretty accurate recall and limited arthritis and improved energy.

gotta avoid that sugar and strengthen the immune system and i am doing some

colon cleansing with homozone and some bentonite and psyllium.

yeah and rest.

--

best

william meyer