spinal tap

[Guest guest]

Oh, Joan, I am really sorry to hear this.. what a bummer!! I don't blame you

for not wanting to undergo another spinal tap.. The more I heard, the more I

am glad I declined that test a couple of years ago. I felt that was a little

too drastic and was going to take that if I feel the need to do it... It

sounds like a risky procedure

for results so highly unreliable.

elizabeth

md

<<

I was told by my Neurologist at Stony Brook that I had to have a spinal

tap before they would treat me for Lyme. I told him that being that it

only shows Bb in less than 20% of people infected (as per Dr. , that I

didn't want it. He said that the percentage was much higher, and that it

could also rule out other diseases such as MS.

Having no one else that would treat me, I begrudgingly agreed. What a

mistake! Everytime he jabbed that needle into my back (3x), I had

excruciating pain...and that was with 4 shots of novacaine!!! The back

pain didn't subside for 2 months, and to this day, my back " is not

right " . Not only that, but when my new LLMD got my results, he said that

they didn't even do a PCR, OspA or OspC on my spinal fluid! And if that

wasn't bad enough, he didn't collect enough spinal fluid for my MS test

to be accurate! NEVER AGAIN!!!! Ouch! Joan LI, NY

>>

[Guest guest]

Hi , Marta and All,

I was told by my Neurologist at Stony Brook that I had to have a spinal

tap before they would treat me for Lyme. I told him that being that it

only shows Bb in less than 20% of people infected (as per Dr. , that I

didn't want it. He said that the percentage was much higher, and that it

could also rule out other diseases such as MS.

Having no one else that would treat me, I begrudgingly agreed. What a

mistake! Everytime he jabbed that needle into my back (3x), I had

excruciating pain...and that was with 4 shots of novacaine!!! The back

pain didn't subside for 2 months, and to this day, my back " is not

right " . Not only that, but when my new LLMD got my results, he said that

they didn't even do a PCR, OspA or OspC on my spinal fluid! And if that

wasn't bad enough, he didn't collect enough spinal fluid for my MS test

to be accurate! NEVER AGAIN!!!! Ouch! Joan LI, NY

[Guest guest]

Hi Joan,

Sorry you had to go through that. I too had a Spinal Tap. In fact I had

two. The first Dr. couldn't get any fluid......talk about painful. The

second Dr. was much better, she got it on the first try........but you are

right........its extremely painful. My fluid came back negative for

everything!! But yet I had a very positive Western Blot and

LUAT.....certainly the pain of a spinal tap may not be worth it. Connie

nwnj

[Guest guest]

Oh Joan,

You poor thing, Stoney Brook has a lousy reputation for treatment of Lyme

disease, was that neurologist a protogee of Pat Coyle? She has a

reputation for demanding spinal taps too. I refuse to have one, although I

know it could rule out other diseases. I can't make these idiot doctors

understand I was fine till I found #@ & %* & tick in my head!

To add insult to injury the idiots never tested your fluid. I would sue

for all the aggravation. Hope your back is healed now.

Hugs,

Marta NJ

From: Namkrats3@... (Joan S.)

Hi , Marta and All,

I was told by my Neurologist at Stony Brook that I had to have a spinal

tap before they would treat me for Lyme. I told him that being that it

only shows Bb in less than 20% of people infected (as per Dr. , that I

didn't want it. He said that the percentage was much higher, and that it

could also rule out other diseases such as MS.

Having no one else that would treat me, I begrudgingly agreed. What a

mistake! Everytime he jabbed that needle into my back (3x), I had

excruciating pain...and that was with 4 shots of novacaine!!! The back

pain didn't subside for 2 months, and to this day, my back " is not

right " . Not only that, but when my new LLMD got my results, he said that

they didn't even do a PCR, OspA or OspC on my spinal fluid! And if that

wasn't bad enough, he didn't collect enough spinal fluid for my MS test

to be accurate! NEVER AGAIN!!!! Ouch! Joan LI, NY

[Guest guest]

I had a spinal tap almost two years ago and I still feel it from day to day.

It is still tender. I had it soon after my little cause I went to

the hospital with a fever of 102.2 F and they thought I might have

meningitis. They found nothing and I lived with pain more so then the

headache I went in with. They could not find the cause of the headache and

gave me some abx don't remember what for three days and then gave me a

spinal patch *cap* I thought my hips were going to fall of. I felt better

for the day and they sent me home and then guess what the next day headache

was back in full force. What good it did me....yeah right.

Cyntha Idaho

[Guest guest]

from marta:

>>>reputation for demanding spinal taps too. I refuse to have one,

although I

know it could rule out other diseases. I can't make these idiot doctors

understand I was fine till I found #@ & %* & tick in my head!

To add insult to injury the idiots never tested your fluid. I would sue

for all the aggravation. Hope your back is healed now.<<<

meredith had a spinal, they did not explain the procedure and options or why

they were doing it. i was too confused, scared and flipped to research it.

the day she had the tap, we had to take our son to the hospital, get her to

another hosp. for the tap, then go back to visit son at other hosp.

it was the only test she cried. she said, and i'll never forget this,

" mommy, please make them stop, please moomy, please, make them stop. "

they f'ing didn't even test the fluid for lyme. i have been requested twice

since then for her to have taps. NO F'ING way!

kay

[Guest guest]

Hi Kay,

I don't blame your anger, it really is terrible what these idiotic

doctors do to make matters worse, poor Meredith. I can't imagine what those

doctors were looking for in a child her age. Did you get any results at

all? Your post really makes my blood boil. FUBAR! I just hope that

someone who reads about these nightmares will not even consider a spinal tap

when suggested by these jerky doctors.

Hugs,

Marta

--

>From: " Kay " <b10g7@...>

>meredith had a spinal, they did not explain the procedure and options or

why

>they were doing it. i was too confused, scared and flipped to research it.

>

>the day she had the tap, we had to take our son to the hospital, get her to

>another hosp. for the tap, then go back to visit son at other hosp.

>

>it was the only test she cried. she said, and i'll never forget this,

> " mommy, please make them stop, please moomy, please, make them stop. "

>

>they f'ing didn't even test the fluid for lyme. i have been requested twice

>since then for her to have taps. NO F'ING way!

>

>kay

[Guest guest]

Hi Cyntha,

A spinal tap can be a very nasty thing if not done correctly....and

sometimes even when it is done correctly. However, I think that if they

suspect Meningitis, it is probably warranted. As for a Lyme disease

dx....I have my reservations. Sorry yours went badly,

too. Take Care, Joan LI, NY

[Guest guest]

Hi Kay,

I'm so sorry for what little Meredith had to go through! I guess I

wasn't the only one whose spinal fluid wasn't tested for Lyme. Where did

she have it done? Hang in there, Joan LI,

NY

[Guest guest]

Hi Marta,

Hope you're feeling better this week.

My neurologist was working under the supervision of Krupp, Pat

Coyle's cohort. Whenever I have the opportunity, I warn people to stay

away from Stony Brook. I had to learn the hard way... I'd love to sue

them. My husband is going to run it past a lawyer friend.

Take Care, Joan LI, NY

[Guest guest]

Hi Connie,

It is amazing to me how many doctors still think that a spinal tap is

the way to go to test for Lyme. I'm not saying that it is never helpful,

but considering the low percentage of Bb that does show up in the CSF, I

feel that it is too dangerous a procedure to be taken lightly.

I'm sorry yours was not helpful, but not I'm surprised......Take Care,

Joan LI, NY

[Guest guest]

Hi ,

The thing that gets me, is that with so few LLMDs out there, we are all

at the mercy of uneducated MDs who offer us a glimmer of hope, then

refuse treatment because the tests that they ordered came back negative.

We need more LLMDs, and that is why it is so important that we support

Dr. Burrascano!!!! Thanks for your concern, Joan

LI, NY

[Guest guest]

>>> I guess I

wasn't the only one whose spinal fluid wasn't tested for Lyme. Where did

she have it done? <<<

hi joan,

she was at mass general hosp. boston...

kay

[Guest guest]

Dear Reid, thanks for the info, after some thinking and chickening out, I am

not really sure I want them to do the spinal tap. It would be just one more

test to cause pain and not really help me.

Deb

[Guest guest]

I had a Lumbar Puncture. I had a student do mine and I almost vomited

from the pain. Definiltly have a doctor that is good at it do this.

once my Neuro stepped in , it was realitvily painless

[Guest guest]

HI

I've heard that a fluoscopy spinal tap was painless; has anyone else heard

this?

thank you in advance

lea

<< I had a Lumbar Puncture. I had a student do mine and I alm dost vomited

from the pain. Definiltly have a doctor that is good at it do this.

once my Neuro stepped in , it was realitvily painless

>>

[Guest guest]

Hi ,

Thanks for the update on Kate, I am so sorry she is doing so bad. Yesterday

I was speaking by phone to a Lyme-friend, and I mentioned Kate's case. Joe has

been on Flagyl, (I haven't) and he thought that she may be herxing from the

drug, he said it is very powerful and a surprising first line action by Kate's

doctor, but very interesting too. As he knows more about this than I do, he

mentioned that this drug will attack only one form of the spirochete, and he was

wondering why Kate was not on any other drug in combination. I forgot to tell

him that Kate had been on doxy too, but it was an awfully short dose. I hope

next appt. with the doctor you will discuss this, and ask why she is only on

Flagyl. He may have a very good explanation for this, so let us know. Is Kate

on any pain meds at all? I suffered for a year before I thought to ask for pain

meds, and I could kick myself now for all that needless suffering.

Hugs,

Marta

[ ] Spinal Tap

Joan, thanks for your latest message on your spinal tap. I am new to

learning about LD, and certainly have a lot more to learn. However, from what I

have read, I cannot see how a dr would require one to dx for LD.

It is my wife, Kate, that has contracted LD from a tick bite on 6/29/99.

The tick was a nymph, just over !/16 inch in diameter. I almost missed it when

I did my tick check of Kate. It could not have been on her for more than two

hours; she was gone from home to where she picked up the tick for less than four

hours, and she had other stops to make. She forgot to tuck her shirt in!!!

What worried me was the red mark that lingered on her back...still faintly

visible today... then after about a week or so, some of the migrating minor

achy joints started, a couple of migraine headaches, and wanting to sleep extra.

No bulls-eye!!! Nothing spectacular in symptoms! Luckily, we found a dr who

was knowledgeable (a LLMD, we think). Kate had been on ten days of doxy from a

local non-LLMD dr who did want to believe that she had LD but consented to that

much abx to please us, I think. Then a break of almost two weeks until we found

the LLMD, who did a Western Blot test at the Palo Alto, CA lab. Kate tested

positive! But before he had the results back our LLMD (?) had Kate on 250mg

Flagyl, three times a day. We think she is herxing now, after 36 days of the

Flagyl! She is sleeping lots more... feeling lousy by afternoon. And last

night, had terrific pain in the left side of her neck. Could not lay down

without causing lots pain. We blocked her up on the couch with pillows for the

closest thing she could call rest. The LLMD(?) said on the telephone today that

he thinks she is herxing, and gave her a muscle relaxant, epam 5mg, that

Kate said was working, and allowed her to sleep, at last this afternoon. Due to

all that you folks have said about abx affecting the stomach, I suggested to her

that she take two-ONE BILLION CFU acidophilus pills three times a day, and a 12

oz cup of yogurt a day. It seems to be helping her stomach; she has not had any

complaints in that department...yet! We are hoping that we neophytes have

learned from you folks fast, and that Kate will be " well " again, soon. Thanks!

[Guest guest]

In a message dated 9/17/99 12:05:46 AM, geokate@... writes:

<< I find it extremely hard to believe that with 4 of 5 bands of a Western

Blot test showing positive for the Bb spirochette/Lyme Disease that a doctor

would ask a patient to go through the possible severe pain of a spinal tap.

I think that it is a matter of your finding the correct abx for you. I am

sorry to hear that you have suffered so much! What with having lots of pain

for about 16 months with my problem, I can understand how you must feel. But

my vote would have to be with Joan.... no on a spinal tap for you!!!!! I

hope that I have been of some help.>>

Hi

I happen to respect my neurologist! She is an excellent diagnostician. As

everyone knows, there is no good test for Lyme! Even the WB is known to be

unreliable! I have a clinical diagnosis of Lyme. However, if there is a

chance that this could be another disease, infection, or what have you I will

continue to explore the possibilities.

I don't have " pain " , what I have is global numbness, weakness, tingling, and

burning. I also " lack " most sensations, thus there is probably pain under

all the weird nerve sensations. All of this effects my proprioception.

Thus it is very difficult for me to get around.

Some people are willing to stop with a clinical diagnosis. I am, on the other

hand, very willing to continue to look for any and all possible causes for

this illness of mine. Especially since the abx are not working as well

expected. There are those that are misdiagnosed with Lyme too! I just want

to get better!

Take Care

Jane

[Guest guest]

Jane,

I agree with what you said and think it's important for all of us who

can't be 100% certain of what we have to be open to other possible

diagnoses (as long as we're getting treatment for whatever the likely

cause may be).

>

> Some people are willing to stop with a clinical diagnosis. I am, on

the other

> hand, very willing to continue to look for any and all possible

causes for

> this illness of mine.

beth

SF, CA

[Guest guest]

In a message dated 9/16/99 7:46:51 PM Eastern Daylight Time, JVSPL@...

writes:

<< However, if there is a

chance that this could be another disease, infection, or what have you I

will

continue to explore the possibilities. >>

good point...but you MUST make sure you know what the Dr. is taking fluid for

then...I have had more than one person, for example, think blood was drawn

for one purpose and it was not for what they were thinking for...so spinal

fluid is the same way...Bernadette

[Guest guest]

meredith had a spinal and they did not even do the lyme tests.

i couldn't believe it! you would think they would check the fluid for

EVERYTHING under the sun! but...they didn't even do what they were supposed

to do.

" there was no activity that would indicate ms, but this does not rule out

the possibility of her having ms. "

DUH! " what about lyme? "

" lyme? we don't have any results indicating the fluid was tested for lyme. i

thought we had ruled out lyme. "

good thing we were on the phone. i can picture myself lunging at him, hands

around his neck...

kay

<< However, if there is a

chance that this could be another disease, infection, or what have you I

will

continue to explore the possibilities. >>

good point...but you MUST make sure you know what the Dr. is taking fluid

for

then...I have had more than one person, for example, think blood was drawn

for one purpose and it was not for what they were thinking for...so spinal

fluid is the same way...Bernadette

[Guest guest]

> Id like to know if this is worth while. I hear and read that this

test isnt

> 100% accurate and even if you go on IV as a result, that even the

IV can harm

> you.

>

> Arrgghhh!!! I hate this damn disease!!

personally i wouldn't do it.

this comes up now and then and it seems to me last time someone had

benefitted from their results. i do not remember the details.

if you do it make sure they test for everything! they didn't test my

daughter's fluid for lyme...duh.

peace,

kay

[Guest guest]

> Id like to know if this is worth while. I hear and read that this

test isnt

> 100% accurate and even if you go on IV as a result, that even the

IV can harm

> you.

>

> Arrgghhh!!! I hate this damn disease!!

personally i wouldn't do it.

this comes up now and then and it seems to me last time someone had

benefitted from their results. i do not remember the details.

if you do it make sure they test for everything! they didn't test my

daughter's fluid for lyme...duh.

peace,

kay

[Guest guest]

I would never have one again...I was basically forced into having one

last year. They did a basic test for Lyme...no PCR. Of course it was

negative. They supposedly ruled out MS and other infections, but it

certainly didn't help me get treatment for Lyme...made it HARDER! I

believe it only comes up positive for Lyme less than 20% of the time,

anyway...

Hope this helps,

Joan LI NY

P.S. My back still hurts at the tap site.

[Guest guest]

Craig--

I have not had a spinal tap, but I have had an IV for 2YEARS. It hasn't harmed

me yet, but I

have made dramatic improvement.

Rhonna

CraigA1113@... wrote:

> Id like to know if this is worth while. I hear and read that this test isnt

> 100% accurate and even if you go on IV as a result, that even the IV can harm

> you.

>

> Arrgghhh!!! I hate this damn disease!!

>

> ------------------------------------------------------------------------

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