spinal tap

[Guest guest]

Craig,

What are you talking about?? I know that the spinal is not 100% accurate but

that is the only way I can get the IVs. What is this that the IVs can harm

you??? KIM

[Guest guest]

I heard from a friedn who has had lyme that either regular use of IV or

extensive use of IV " may " harm you.

But again, everyone is different.

[Guest guest]

Death will harm everyone, too.

Sincerely,

Annie

[Guest guest]

In a message dated 6/8/00 4:41:38 PM Pacific Daylight Time, timibug2@...

writes:

<< that is the only way I can get the IVs. >>

Can't you try to prove you have Lyme by way of having co-infections? People

are too stuck on believing that spinal fluid is the end all where all, which

we know does not apply to Lyme. Trying to be helpful...

Take care,

Annie

[Guest guest]

Annie,

This doc is a neurologist and she says that is the only way she can tell. She

feels she has to rule out other things. She has all my blood work but it does

not matter to her. The infectious disease guy was a REAL AH and he said to

use my results to put on the walls. That is what he thought. So no, to get

the insurance company to pay for the IV it has to come up in the spinal

fluid, cause other wise they use orals. So Wed is my day. I am sacred to

death and have postponed it twice already. Ihate going through this but I

need to do now what I can do to clear up my brain. Thanks KIM

[Guest guest]

Annie,

Well said. Well said.

Helen in NJ

[Guest guest]

In a message dated 6/9/00 5:38:31 AM Pacific Daylight Time, timibug2@...

writes:

[ ] = Response

<< She feels she has to rule out other things. [use the Spinal Tap to RULE

OUT other things, but not to RULE IN Lyme.] She has all my blood work but it

does

not matter to her. [Did she check for co-infections beyond that of blood?]

The infectious disease guy was a REAL AH [i've never met one that wasn't...]

and he said to use my results to put on the walls. [My type of guy, is he

related to Pitchon, darn I keep slipping?] .... So no, to get the insurance

company to pay for the IV it has to come up in the spinal fluid, cause other

wise they use orals. [if negative, start the orals and then fight the big

fight. You do know that some people do excellently with orals, there is no

solid proof that Rocephin is better, we have to wait for Dr. Fallon's study

to end. You may want to do a Bone Marrow test (BMB), before you start the

Lyme treatment, as it will cover-up the Ehrlichiosis results. One can prove

they have Lyme easier if they show a co-infection, a round-about way of doing

it. I swear BMBs are not that bad, SWEAR!] So Wed is my day. I am sacred to

[What time (PST)? I'll think positive thoughts. Be sure you stay level

afterwards. Are you taking some good reading material (When I had a

different test done, I actually watched a rented video) with you?] >> GOOD

LUCK!

Take care,

Annie

[Guest guest]

craig, Chemo therapy has its share of side effects also, but if we had

cancer, we would go through it. during a run of IV - your doctor

monitors your blood, to rule out any problems. I hear the same things

from my friends all the time. I tolerate rocephen very well, but like

you said everyone is different.

--- CraigA1113@... wrote:

> I heard from a friedn who has had lyme that either regular use of IV

> or

> extensive use of IV " may " harm you.

> But again, everyone is different.

>

__________________________________________________

[Guest guest]

Dear Sue,

Thanks for your response re your daughter's testing of cerebral spinal fluid.

I have some questions.

What is BSK?

When the doctor did blood serial PCRs, was she on antibiotics?

Can you find out what kinds of tests they did at Stony Brook?

32cc is a lot of fluid. Did she do okay afterward? How long did she lay

flat?

Thank you so much for your help.

Sincerely,

San Diego (bit in Indiana)

[Guest guest]

Thanks for the info Larry. I haven't decided if I am going to go

through with it yet. I have an appt. with a Lyme doc on Monday and

will see what he says.

Lyra

> Lyra,

> Spinal taps show many things. It is generally used to test for

bacteria

> in the CSF and to detect the presence of myelin based protein (a

sign of

> demyeliting usually due to MS but can be caused by lyme).They are

not

> pleasant but if you decide to do it, insist that they remove a

sample and

> send it IGENEX for appropriate lyme testing (WB, PCR).

> My two cents.

> Larry NV

[Guest guest]

Well they want to know whether to start me on IV or not.

Lyra

> Since we are discussing spinal taps, lumbar punctures and the like,

I dug up

> this old abstract that I saved on my hard drive as it refers to

the spinal

> tap not being a useful diagnostic tool for Lyme disease. The only

time I

> think spinal tap is useful is to rule out other diseases.

> Marta

>

[Guest guest]

Lyra,

What do you mean they want to know whether to start you on IV or not? Isn't

that what they are supposed to advise you of? I'm not sure what to tell you

because I am so very new to this myself, but my understanding is that if you

are herxing like this on the orals, you probably won't be able to tolerate

IV's just yet. And there may be no need to do so at this time. Remember,

if you are feeling this bad after such a short time on antibiotics, that is

actually good - the antibiotics and the dose is being effective. Think

about it - anybody who doesn't have Lyme usually feels better with

antibiotics - right? I so wish you could trust your instincts. But I know

what you mean about not being able to accurately read or interpret people.

I'm always being dumped on - Deb the Doormat - that's me. I just have a

hard time believing that there are dishonest, or even just plain mean people

around. Especially Doctors! But there are, and we have to learn to " read "

them. We are brought up to believe they are like the right hand of God

himself. But believe me, they don't all have your best interest at heart.

There are some good ones, especially if they are willing to risk all to

treat people they believe deserve appropriate treatment. Perhaps a lot of

your anxiety comes from not listening to that inner voice, your gut

instinct. Did something big happen to make you so unsure of yourself? You

seem very stressed - and rightly so - but keep in mind that the Lyme spiro,

when involved neurologically, can mimick all kinds of neuropsychiatric

manifestations: mood swings, personality changes, depression, bipolar

disorder, attention deficit, memory impairment, word finding difficulties --

and the list goes on an on. Don't be so hard on yourself! If there was

ever a time in your life to be gentle with yourself, this is that time.

Spend more energy RESTING, and letting your body's immune system help the

antibiotics. It all goes back to the basics - get plenty of rest, eat well,

stay hydrated, think happy thoughts, avoid negative people/situations that

drain you of your precious resources, etc.

Have you considered asking your doc for some anti-anxiety meds for short

term use? Sometimes, a little Xanax does a body wonders.

I hope all goes well for you,

NurseDeb

[Guest guest]

Deb,

If I have meningitis they will start me on IV...that is why they wanted

me to get the tap. I have been on antibiotics for 4 weeks...is that a

short time? Yes, someone who doesn't have Lyme will not feel worse on

antibiotics...but I knew that I had Lyme. What happens if I did not go

on antibiotics...would I be the same way I am now? My concern is that

this is how the disease would progress naturally....I know I have

expressed this before so don't jump down my throat please. All I am

trying to do is understand what I am going through...So excuse me if I

continuously ask questions...that is the way I learn.

I went to grad school at a medical school and I am very skeptical of

MD's after seeing how they are trained and their attitude towards their

patients. I saw what goes on behind the doors and it scares me. Has

something make me feel unsure of myself? Many things have happened in

my life where my intuition was right and many things have happened where

my intuition was wrong. I am sorry if I come off stressed but things

are going on in my body that I don't understand. Is that not a reason

to be stressed? Come on...all of you are telling me to calm down but

most of you have been living with this for a while. Does anyone know

what it feels like to wake up and not be able to move your face. That

stressed me out and I believe that is a normal reaction. Suppose you

woke up with incredible pressure in your head and neck? Is that not

cause to be stressed? The only reason I am stressed is because I am

sick. Why would I need an anti-anxiety medication for responding to

situations in a *normal* fashion. You put your self in my shoes and see

how stressed you are. I will no longer defend my stress to that I am

*too fast*....obviously most of you do not remember having acute

symptoms and how your reacted to them.

Lyra

> Re:Spinal Tap

>

>

>Lyra,

>

>What do you mean they want to know whether to start you on IV

>or not? Isn't

>that what they are supposed to advise you of? I'm not sure

>what to tell you

>because I am so very new to this myself, but my understanding

>is that if you

>are herxing like this on the orals, you probably won't be able

>to tolerate

>IV's just yet. And there may be no need to do so at this

>time. Remember,

>if you are feeling this bad after such a short time on

>antibiotics, that is

>actually good - the antibiotics and the dose is being effective. Think

>about it - anybody who doesn't have Lyme usually feels better with

>antibiotics - right? I so wish you could trust your

>instincts. But I know

>what you mean about not being able to accurately read or

>interpret people.

>I'm always being dumped on - Deb the Doormat - that's me. I

>just have a

>hard time believing that there are dishonest, or even just

>plain mean people

>around. Especially Doctors! But there are, and we have to

>learn to " read "

>them. We are brought up to believe they are like the right hand of God

>himself. But believe me, they don't all have your best

>interest at heart.

>There are some good ones, especially if they are willing to risk all to

>treat people they believe deserve appropriate treatment.

>Perhaps a lot of

>your anxiety comes from not listening to that inner voice, your gut

>instinct. Did something big happen to make you so unsure of

>yourself? You

>seem very stressed - and rightly so - but keep in mind that

>the Lyme spiro,

>when involved neurologically, can mimick all kinds of neuropsychiatric

>manifestations: mood swings, personality changes, depression, bipolar

>disorder, attention deficit, memory impairment, word finding

>difficulties --

>and the list goes on an on. Don't be so hard on yourself! If

>there was

>ever a time in your life to be gentle with yourself, this is that time.

>Spend more energy RESTING, and letting your body's immune

>system help the

>antibiotics. It all goes back to the basics - get plenty of

>rest, eat well,

>stay hydrated, think happy thoughts, avoid negative

>people/situations that

>drain you of your precious resources, etc.

>Have you considered asking your doc for some anti-anxiety meds

>for short

>term use? Sometimes, a little Xanax does a body wonders.

>

>I hope all goes well for you,

>

>NurseDeb

>

>

>

>

[Guest guest]

>. Suppose you

>woke up with incredible pressure in your head and neck?

OK Lyra! I'll just try to " suppose " I know what EVERY DAY feels

like!!!!!!!!!!!

>that not

>cause to be stressed? The only reason I am stressed is because I am

>sick.

And " suppose " you're the only one here who's sick and stressed?

>You put your self in my shoes and see

>how stressed you are.

Of course! Silly us! Give me YOUR SHOES Lyra! You've been sick a few weeks,

you've already been able to see SEVERAL LLMDs, you've had an INSTANT dx and

INSTANT tx and you are going through a herx. Plus you have this and other

groups of people to help you. A rather gilded way to have Lyme if you ask

me, compared to what most of us have had to go through!!!!!!(hence some of

the irritation from some of us, especially as you seem to think others are

less affected than you are)

I've been ill with Lyme 20 YEARS (undiagnosed, untreated until last year),

do you want MY SHOES, Lyra? I am in bed most of the time still, do you want

MY SHOES, Lyra? last year I nearly died bec of heart pbs, do you want MY

SHOES, Lyra? I have had meningitis/encephelitis flares for years do you want

MY SHOES, Lyra? etc etc.

You constantly ask the SAME questions! That's what is getting to be a bit

much. At first you wanted people on this list to tell you that 4 weeks of

abx would be enough for you to go on with your life as if nothing had

happened, you wanted people to say to you: " yeah sure go ahead get pregnant

tomorrow " , and you just keep asking and asking. Why don't you READ all the

info that is available and take note of what other people have written on

various sites. And LEARN! Your case is fairly classic, lots of descriptions

around, why can't you draw conclusions from what you read?

> I will no longer defend my stress to that I am

>*too fast*....

I don't know why you think you're *too fast*?

>obviously most of you do not remember having acute

>symptoms and how your reacted to them.

That's the kind of remark that will not earn you friends around here. Some

of us ARE having ACUTE symptoms RIGHT NOW, Lyra, and battling much more

alone than you are, so could you please be a bit less petulant and

respectful of others?

Nelly

Re:Spinal Tap

> >

> >

> >Lyra,

> >

> >What do you mean they want to know whether to start you on IV

> >or not? Isn't

> >that what they are supposed to advise you of? I'm not sure

> >what to tell you

> >because I am so very new to this myself, but my understanding

> >is that if you

> >are herxing like this on the orals, you probably won't be able

> >to tolerate

> >IV's just yet. And there may be no need to do so at this

> >time. Remember,

> >if you are feeling this bad after such a short time on

> >antibiotics, that is

> >actually good - the antibiotics and the dose is being effective. Think

> >about it - anybody who doesn't have Lyme usually feels better with

> >antibiotics - right? I so wish you could trust your

> >instincts. But I know

> >what you mean about not being able to accurately read or

> >interpret people.

> >I'm always being dumped on - Deb the Doormat - that's me. I

> >just have a

> >hard time believing that there are dishonest, or even just

> >plain mean people

> >around. Especially Doctors! But there are, and we have to

> >learn to " read "

> >them. We are brought up to believe they are like the right hand of God

> >himself. But believe me, they don't all have your best

> >interest at heart.

> >There are some good ones, especially if they are willing to risk all to

> >treat people they believe deserve appropriate treatment.

> >Perhaps a lot of

> >your anxiety comes from not listening to that inner voice, your gut

> >instinct. Did something big happen to make you so unsure of

> >yourself? You

> >seem very stressed - and rightly so - but keep in mind that

> >the Lyme spiro,

> >when involved neurologically, can mimick all kinds of neuropsychiatric

> >manifestations: mood swings, personality changes, depression, bipolar

> >disorder, attention deficit, memory impairment, word finding

> >difficulties --

> >and the list goes on an on. Don't be so hard on yourself! If

> >there was

> >ever a time in your life to be gentle with yourself, this is that time.

> >Spend more energy RESTING, and letting your body's immune

> >system help the

> >antibiotics. It all goes back to the basics - get plenty of

> >rest, eat well,

> >stay hydrated, think happy thoughts, avoid negative

> >people/situations that

> >drain you of your precious resources, etc.

> >Have you considered asking your doc for some anti-anxiety meds

> >for short

> >term use? Sometimes, a little Xanax does a body wonders.

> >

> >I hope all goes well for you,

> >

> >NurseDeb

> >

> >

> >

> >

>

>

>

[Guest guest]

> >. Suppose you

> >woke up with incredible pressure in your head and neck?

> OK Lyra! I'll just try to " suppose " I know what EVERY DAY feels

> like!!!!!!!!!!!

Yes, but are you panicked????? I amj sure you were when it first

happened but now you don't remember? is that why I am being told to

calm down and shut up? Is that why I get attacked everytime I ask a

simple question?

> >that not

> >cause to be stressed? The only reason I am stressed is because I

am

> >sick.

> And " suppose " you're the only one here who's sick and stressed?

Well it seems to be because I am the only one being attacked for

being stressed out. People are telling me to calm down and to slow

down or they won't respond to me...no one else gets that response so

I guess I am the only one.

>

> I've been ill with Lyme 20 YEARS (undiagnosed, untreated until

last year),

> do you want MY SHOES, Lyra? I am in bed most of the time still, do

you want

> MY SHOES, Lyra? last year I nearly died bec of heart pbs, do you

want MY

> SHOES, Lyra? I have had meningitis/encephelitis flares for years do

you want

> MY SHOES, Lyra? etc etc.

No, put yourself in my shoes when you first found out. Did you not

have a right to be panicked and ask questions? Well it seems that I

am attacked for doing that. I have had dozens of emails off list

from people who cannot believe I am being treated the way I am. No

one seems to understand that I am new to this disease and I have

unanswered questions. They want me to slow down and shut up because

I am asking questions and because I am panicked. Do I not have a

right to be?????

>

> You constantly ask the SAME questions!

No I don't. Please refer to the archieves and you will see that

every question is different.

That's what is getting to be a bit

> much. At first you wanted people on this list to tell you that 4

weeks of

> abx would be enough for you to go on with your life as if nothing

had

> happened,

Not true. I asked if people thought that 4 weeks would be enough

since that is what my doctor told me. People completely jumped onh

me after I asked this question. I didn't know...I asked a question

because I want to know. Please show me where I wanted people to tell

me that is enough? I don't know whay I am being attacked for asking

questions I don't know the answer to. I don't know why I am not

allowed to ask questions without people literally telling me not to

post anymore. This is supposed to be a support group...where is the

support????

you wanted people to say to you: " yeah sure go ahead get pregnant

> tomorrow " ,

Nope, I never said that. I said I want to have children at some

point in my life. Whose posts have you been reading because they

were not mine. I said I wanted to have children and I would wait

until the symptoms were gone and then I get attacked again saying it

would be child abuse. Someone also wrote me and said thry thoguth I

was going to have children without gewtting treated. None of which I

said. Why are you people turning on me and putting words in my

mouth. I nevr said ANY of those things and I get attacked for saying

them.

and you just keep asking and asking. Why don't you READ all the

> info that is available and take note of what other people have

written on

> various sites. And LEARN!

I have READ!!!! But I still have questions because everything I read

doesn't apply to me.....All I do all day is read. But you have to

understand that the best way for someone to learn is to QUESTION!!!!

And I am questioning!!!!! Is there anything wrong with that? if you

don't like my posts then DELETE it. I really don't need to be

attacked right now as several people have said when they wrote me off

list. They all can't understand why all of you are attacking me

asking questions.

>

> >obviously most of you do not remember having acute

> >symptoms and how your reacted to them.

> That's the kind of remark that will not earn you friends around

here. Some

> of us ARE having ACUTE symptoms RIGHT NOW, Lyra, and battling much

more

> alone than you are, so could you please be a bit less petulant and

> respectful of others?

Then why am I being attacked for panicking over symptoms that just

appeared. Answer me that and try and be more respectful to me. Just

try it.

Lyra

[Guest guest]

Lyra,

I'm sure you're sick, stressed and panicked. Just don't start telling people

they should be in your shoes

> No, put yourself in my shoes when you first found out.

When I first found out that I was ill (and I became very ill very suddenly

after having been a very active sporty person) everyone told me there was

nothing wrong with me and I should go and see a shrink, absolutely everybody

around me dropped me like a hot potato including husband and close family.

How do you think I felt?

Now, how did I feel when I finally discovered I had Lyme: RELIEVED! At least

it had a name and it was (kind of) defined.

(and please don't tire yourself answering this, I don't think we will get

anywhere).

Nelly

[ ] Re: Spinal Tap

>

> > >. Suppose you

> > >woke up with incredible pressure in your head and neck?

> > OK Lyra! I'll just try to " suppose " I know what EVERY DAY feels

> > like!!!!!!!!!!!

>

> Yes, but are you panicked????? I amj sure you were when it first

> happened but now you don't remember? is that why I am being told to

> calm down and shut up? Is that why I get attacked everytime I ask a

> simple question?

>

> > >that not

> > >cause to be stressed? The only reason I am stressed is because I

> am

> > >sick.

> > And " suppose " you're the only one here who's sick and stressed?

>

> Well it seems to be because I am the only one being attacked for

> being stressed out. People are telling me to calm down and to slow

> down or they won't respond to me...no one else gets that response so

> I guess I am the only one.

>

>

> >

> > I've been ill with Lyme 20 YEARS (undiagnosed, untreated until

> last year),

> > do you want MY SHOES, Lyra? I am in bed most of the time still, do

> you want

> > MY SHOES, Lyra? last year I nearly died bec of heart pbs, do you

> want MY

> > SHOES, Lyra? I have had meningitis/encephelitis flares for years do

> you want

> > MY SHOES, Lyra? etc etc.

>

> No, put yourself in my shoes when you first found out. Did you not

> have a right to be panicked and ask questions? Well it seems that I

> am attacked for doing that. I have had dozens of emails off list

> from people who cannot believe I am being treated the way I am. No

> one seems to understand that I am new to this disease and I have

> unanswered questions. They want me to slow down and shut up because

> I am asking questions and because I am panicked. Do I not have a

> right to be?????

>

> >

> > You constantly ask the SAME questions!

>

> No I don't. Please refer to the archieves and you will see that

> every question is different.

>

>

> That's what is getting to be a bit

> > much. At first you wanted people on this list to tell you that 4

> weeks of

> > abx would be enough for you to go on with your life as if nothing

> had

> > happened,

>

> Not true. I asked if people thought that 4 weeks would be enough

> since that is what my doctor told me. People completely jumped onh

> me after I asked this question. I didn't know...I asked a question

> because I want to know. Please show me where I wanted people to tell

> me that is enough? I don't know whay I am being attacked for asking

> questions I don't know the answer to. I don't know why I am not

> allowed to ask questions without people literally telling me not to

> post anymore. This is supposed to be a support group...where is the

> support????

>

>

>

> you wanted people to say to you: " yeah sure go ahead get pregnant

> > tomorrow " ,

>

> Nope, I never said that. I said I want to have children at some

> point in my life. Whose posts have you been reading because they

> were not mine. I said I wanted to have children and I would wait

> until the symptoms were gone and then I get attacked again saying it

> would be child abuse. Someone also wrote me and said thry thoguth I

> was going to have children without gewtting treated. None of which I

> said. Why are you people turning on me and putting words in my

> mouth. I nevr said ANY of those things and I get attacked for saying

> them.

>

>

> and you just keep asking and asking. Why don't you READ all the

> > info that is available and take note of what other people have

> written on

> > various sites. And LEARN!

>

> I have READ!!!! But I still have questions because everything I read

> doesn't apply to me.....All I do all day is read. But you have to

> understand that the best way for someone to learn is to QUESTION!!!!

> And I am questioning!!!!! Is there anything wrong with that? if you

> don't like my posts then DELETE it. I really don't need to be

> attacked right now as several people have said when they wrote me off

> list. They all can't understand why all of you are attacking me

> asking questions.

>

>

> >

> > >obviously most of you do not remember having acute

> > >symptoms and how your reacted to them.

> > That's the kind of remark that will not earn you friends around

> here. Some

> > of us ARE having ACUTE symptoms RIGHT NOW, Lyra, and battling much

> more

> > alone than you are, so could you please be a bit less petulant and

> > respectful of others?

>

> Then why am I being attacked for panicking over symptoms that just

> appeared. Answer me that and try and be more respectful to me. Just

> try it.

>

> Lyra

>

>

>

>

[Guest guest]

Lyra and others interested (for if you aren't I would have hoped

you'd have deleted this), I think the fundamental problem is that

this sort of internet list isn't suitable for all the things we need

when facing this awful disease--a place to ask questions, a place to

read scientific papers, a place for intelligent comment, opinions,

rants and humor.

I run a major internet list (over 1,300 subscribers) and have found

it can consume my life keeping it peaceful and suitable for everyone

subscribed. And that's just about a rock band, not an illness, which

invests so much more emotion.

I don't have an answer. I found the in-person support group both

useful and maddening as well. But a few key pieces of information

gleaned there and from this list were valuable. Whether they are

worth wading through b-s to find, I don't know. It's not a good idea

to feel stressed as you are.

Lyra, I should be the last one to say " ignore " after my post a minute

ago, but you don't need such stress while you try to get well. If

you'd like to write off-list, I can't help you with the questions,

but could give some support. As I said, I'm unsubscribing soon due to

my improved health and lack of time, not because of anything anyone

posted [sticks tongue out in nyah nyah manner exhausted from

writing " intelligent and caring " posts.]. Oops, sorry, snarky humor

crept in there.

Best,

[Guest guest]

Hi Carol,

I had a spinal tap done in '98...the Dr. wouldn't treat me for anything

without it. It was the most painful thing I have ever had to go through. It

took him 5 tries to find the spinal column. Now, 5 years later I have to

take painkillers every day to try to control the pain in my back. Of

course, the test was negative for Lyme.

How long ago did you have yours done? Mine was done at Stony Brook, and I

always try to advise those considering having it done to think twice, and

stay away from there. Unluckily for me, I didn't find my LLMD until right

after the test was done...and he doesn't even require it for a Lyme dx.

Joan

LI, NY

[Guest guest]

Hi Joan,

If your doctor (or anyone's doctor) ever tells them they need a

spinal tap for treatment or further treatment, CALL YOUR

INSURANCE COMPANY AND ASK. I did. It turns out I didn't need

one, but they " recommended it " . O.k., so I did it because I'm an

idiot and my p.c.p. was pushing for it. But I didn't have to do it.

BTW, my neurologist got that thing in on try one. I'd recommend

him to anyone who lives in CT who is in my insurance plan and

can't afford to go out of network to the exorbitant LLMDs. He's not

an official LLMD, but he's not a total dope. He seems to be

familiar with the literature, can do a tap without making a

complete mess of it, and is willing to keep me on at least oral

antibiotics while I am symptomatic. I'd let him do another tap on

me if I needed it (but only if I needed it, not because it was

" recommended " ). Yes, I leaked after and needed a blood patch.

Yes, my back still has twinges sometimes. Yes, it was a very

unpleasant experience. And mine went well compared to some

people's. So I wouldn't recommend anyone have one unless

they MUST.

If a doctor tells you you need to have one for him/her to treat you,

call your insurance company and get the information. If you can,

get it in writing too. Anthem of CT does not REQUIRE a positive

spinal tap for you to get IV rocephin (at least not the first 30 days),

that was what I was told. The recommendation of a

rheumatologist, neurologist, or cardiologist is sufficient.

-

[Guest guest]

Joan,

Most of my spinal taps were performed over a two week period in 1974. I was

admitted to Children's Memorial of Chgo with spinal meningitis and

encephalitis at age 13, and I'm 42 now. After being in the hospital for

about 12 days, a fully engorged tick was found on top of my head.

Unfortunately, for me, Lyme was discovered the next year in a different

state. Furthermore, things haven't changed much, as we are still waiting for

Indiana physicians to " discover " lyme!!!

I was lucky. I had a wonderful MD with a gentle touch, and I was delirious

with fever through most of them. I was told I had 5 or 6, though I only

remember two, which is two too many!!

The last one, done by a different doctor, at my follow-up visit, was the

worst. My mother couldn't stand the way he was jamming the needle in and out

and making me convulse and scream. After about 5 or 6 tries, she insisted he

stop and get the other MD that had hit it first time, every time before!!

Thank goodness! The other MD showed up. Hit it first time, once again, and

the ordeal ended.

Then, after traveling home from Northern Chicago to NW Indiana in the back

of a pick up truck on a lounge chair, I got that horrible reaction from not

being still enough. I suffered a major migraine day after day for over 6 mos

I had to walk stooped over for at least six weeks, as standing up send

stabbing pains into my head and eyes, causing blinding pain and

hallucinations.

Since then, I've have had migraines regularly. Now I know that is common

side effect of lyme encephalitis. Guess I was gonna have the headaches,

spinal taps or not.

I hurt all over my body so much now that the old tap wound isn't as touchy

as it used to be, but for many years I had hallucinations and freaked out if

someone touched me there! That pain of them putting that big needle in my

back was one of the worst I've ever known. Esp. when they hit the spinal

nerves and you legs jump all over while you scream!!

Lord! How they can do that to people I'll never know!!

Like you, I tell people to avoid them at all costs if possible. Someone

mentioned to me the other day, that Lyme depletes the dopamine (natural pain

relieving endorphines) in the brain, causing us to have lower thresholds to

pain.

Have you ever heard that?? Do you think it's true?

Carol

[Guest guest]

Carol-

I'm almost CERTAIN my 'noggin' is where I got 'the bite.' I grew up in Texas

and my grandparents lived in the heart of rural central Texas prairie county -

lots of 'stickers' in the grass, armadillos, chiggers...and ticks! I used to

get ticks all the time. But I know it's up here in No.Va that I got the

disease. I used to be an avid hiker and camper...We have a 40 year old house on

a 50% wooded 1 acre lot and I spent a lot of time cleaning up the neglect from

the previous original (crazy!) owners. I remember just finding a tick

occasionally in my hair while I was brushing or washing it and they were always

barely engorged, little bastards. I thought nothing of it. I never saw a

rash. The first symptoms I had were depression, then debilitating fatigue, then

weight gain, mood swings, sleeping 18 hours a day (falling asleep at traffic

lights!) then not sleeping at all, anxiety, headaches, body aches - well, you

all know the rest. Oh well....I still can't believe that you've lived with

this almost your whole life. Prayers going up for ya'...and God Bless You.

Sheryl

Re: [ ] Spinal Tap

Joan,

Most of my spinal taps were performed over a two week period in 1974. I was

admitted to Children's Memorial of Chgo with spinal meningitis and

encephalitis at age 13, and I'm 42 now. After being in the hospital for

about 12 days, a fully engorged tick was found on top of my head.

Unfortunately, for me, Lyme was discovered the next year in a different

state. Furthermore, things haven't changed much, as we are still waiting for

Indiana physicians to " discover " lyme!!!

I was lucky. I had a wonderful MD with a gentle touch, and I was delirious

with fever through most of them. I was told I had 5 or 6, though I only

remember two, which is two too many!!

The last one, done by a different doctor, at my follow-up visit, was the

worst. My mother couldn't stand the way he was jamming the needle in and out

and making me convulse and scream. After about 5 or 6 tries, she insisted he

stop and get the other MD that had hit it first time, every time before!!

Thank goodness! The other MD showed up. Hit it first time, once again, and

the ordeal ended.

Then, after traveling home from Northern Chicago to NW Indiana in the back

of a pick up truck on a lounge chair, I got that horrible reaction from not

being still enough. I suffered a major migraine day after day for over 6 mos

I had to walk stooped over for at least six weeks, as standing up send

stabbing pains into my head and eyes, causing blinding pain and

hallucinations.

Since then, I've have had migraines regularly. Now I know that is common

side effect of lyme encephalitis. Guess I was gonna have the headaches,

spinal taps or not.

I hurt all over my body so much now that the old tap wound isn't as touchy

as it used to be, but for many years I had hallucinations and freaked out if

someone touched me there! That pain of them putting that big needle in my

back was one of the worst I've ever known. Esp. when they hit the spinal

nerves and you legs jump all over while you scream!!

Lord! How they can do that to people I'll never know!!

Like you, I tell people to avoid them at all costs if possible. Someone

mentioned to me the other day, that Lyme depletes the dopamine (natural pain

relieving endorphines) in the brain, causing us to have lower thresholds to

pain.

Have you ever heard that?? Do you think it's true?

Carol

[Guest guest]

Hi Carol,

Boy, what a horrendous experience...especially at such a young age! I do

know that spinal taps are necessary to diagnosis some other infections, but

not Lyme. Lyme has so many clinical sx that a spinal tap should be a last

resort. The % of positives for Lyme is very low.

Another Lyme friend on the list reminded me that acupuncture can be helpful

for the

pain, and I plan on having it done again. It did help the first time.

Feel better,

Joan

LI NY

[Guest guest]

Anthem of CT does not REQUIRE a positive spinal tap for you to get IV

rocephin (at least not the first 30 days),

> that was what I was told. The recommendation of a

> rheumatologist, neurologist, or cardiologist is sufficient.

> -

In CT it is the LAW that treatment be continued indefinitely if recommended

by a board certified rheumatologist, neurologist or infectious disease

doctor regardless of a positive spinal tap. The problem is the lack of LL

doctors in these specialties.

It is also the law that a minimum treatment of 30 days IV and/or 60 days

oral abx is mandatory if ordered by ANY doctor.

The insurance companies in CT have no choice...thank God!

a

[Guest guest]

Thanks for your support Sheryl. I'm sorry we had to meet like this, but

glad to have you as a new friend. We are so blessed to have the Internet. I

d never have learned what was wrong or had so many people to help me if it

had not of been for this tool.

I used to hike and camp a lot too. In the last twenty-five years before I

got too ill, I had camped in WI, TN, KY, NC, and SC frequently!! Plenty of

opportunity to be re-infected!! So, you think the tick broke your brain's

blood barrier too?? Did you get encephalitis also??

LOL, yep, I've fallen asleep at stop lites too! Three months before I fell

down the flight of stairs that did me in with lyme, I wrecked my new truck

while driving... no idea where or what I hit. Woke up driving two towns

away from where I last remember being. Kinda scary.

I'm laying low, mostly staying home till I get an audience with a LL NEURO.

My kids help me get stuff done. Remind me to eat, take pills and stuff...

Rather pathetic, but what choice do I have??

I know what you mean.... sometimes I just can't believe how long I've been

ill either.... I seriously have no idea what " normal " is even supposed to

be! I'm hoping a LL Neuro will be able to subdue some of my symptoms and

sort things out. Keeping my fingers crossed anyway.

I really appreciate your prayers. Can use all of 'em I can get!!

Thanks again,

Carol

[Guest guest]

Joan,

acupuncture... not me darlin!! I get a migraine just considering the idea!

I don't know how you could do it. I guess I've had one too many bad

experiences with needles.

I'm a very difficult stick for blood draws. In addition to all those spinal

taps I've had numerous steroid pain injections about my neck, shoulders and

feet. Had no clue I had lyme so they just kept shootin me up and sendin me

back to work. Isn't no wonder I was going down hill!!

Thanks for the suggestion though, and good luck with your treatment!

Carol