Re: neurological tests for people with lyme

[Guest guest]

HI St ,

I had neurological tests done before I was dx with Lyme. My doctors

suspected MS. Some of the tests are just in the office where he

checks your reflexes and things like that. I had a MRI done and it

showed over 20 spots of myelin disruption. So he thought I had

MS..but then he did the lumbar puncture to make sure. I am going to

tell you this...not to scare you but to prepare you. The lumbar

puncture is not that bad. You lay on your side and the inject you

with a neddle. It doesn't feel good but isn't the worse pain in the

world. The problem I had was afterwards...they told me to lay down

for awhile so I wouldn't get a headache. Then told me i was okay to

go. I drove home. I only got up to go to the restroom. I got the

worst spinal headache!!!!! Made a mirgraine seem like a walk in the

park. I thought i was going to dye! It lasted for over 10 days. 5

of the days I spent in the hospital on morphine drip. The problem

was all my spinal fluid leaked out. I had to have a procedure called

a blood patch. They take blood from your arm and then instantly put

it in your spine. You have to be awake for this! They ask you to

tell them when it hurts so bad you can't take it they will be done!

My advice to you is if you have the lumbar puncture make sure you

stay in the hosptial and do not get up for anything!!! you must lay

flat until the your body heals and replenishes the fluid in your

spine. I am sorry if this scares you..I just think people should be

prepared when they have tests done. We have all been through so much

and the last thing we need is more pain. Ask your neurolgoist if you

can have the MRI and wait for the lumbar puncture.

Take Care and please feel free to email me personally.

Kathleen

>

> Hello,

> i had phone consultation with my doctor yesterday about my progress

> with my lyme treatment and he said he is most concerned about the

fact

> that i get dizzy (I crashed my car a couple weeks ago because i got

> dizzy while driving and didn't see the car in front of me had

> stopped). and also i walk and feel unbalanced. I feel like i'm

going

> to tip over all the time. i sort of weave a bit when i walk and

have

> to watch my feet or i can stumble or get dizzy. and hold onto the

> walls going up and downstairs or getting dressed etc.

>

> so my doctor said he wants me to get neurological tests done ASAP.

> have any of you gotten neurological tests done because of your lyme

or

> bartonella etc.? what do the tests include? all i've heard is

> " lumbar puncture. " eegads. is that true?

>

> any info would be helpful! thanks in advance!

>

> St.

>

[Guest guest]

I went to a neurologist a couple of years ago when I got real bad. He did an

MRI but he found nothing. Another test they may use is to send electric

shock into your muscles. This is worse than it sounds. They jab thin wires

into your muscles and shock them. This did not hurt just a little

uncomfortable.

I had a " lumbar puncture " or spinal tap about 7 years ago. It was done in

the hospital using a fluoroscope. After the tap they moved me into a room

for 4 hours and did not let me get up. I also lay in the back seat of the

car for the ride home, about an hour. When I got home I was fine. This was

ordered by the infectious disease doctor I saw. They can do the spinal tap

in the office as well. I have not had this, but understand it is

uncomfortable and if you stand up with in 4 hours you can get the worst head

ache in you life.

I have very similar problems. I don't feel like I get dizzy. It is hard to

explain. It is like I am dizzy, and unbalanced but I think it is more of a

disorientation feeling. I tell people that if I didn't have good balance I

would fall all the time.

I explain it like this, when you take a step your brain does, lets say, 100

things to complete the step. Of course you don't know what your brain does

it just works. When I take a step my brain will do 98 things. It will forget

to do something. So what happens a lot is my foot will not land where my

brain expected it to. This messes with the brain so it has to pause and

recalculate what happened. I have stopped walking when the ground changes.

Something as common as a line on the ground, or going from the road to a

sidewalk will cause me to stop.

Also I will shake and jerk some time. When this gets bad you don't want to

stand near me. Sometime I will throw both arms in the air every few seconds.

My wife calls this my praise the Lord move. To control this I will start my

hand or head shaking and so long as I keep moving I will not jerk.

A bad day means I will spend the day in my recliner and need help just to

walk. This is usually at night and goes away the next morning.

I still work and seem to do better when I work. I still drive so long as I

am not having a bad day. I just came out of a bad spell. If that had not

ended I may have had to stop driving and working. I did refuse to answer or

use my cell phone while driving, and would even stop the car to change my

audio book CD's.

I could keep this going but I will stop here.

Hope this helps

Dan

_____

From: [mailto: ] On Behalf

Of stjohn.sharp

Sent: Saturday, January 26, 2008 1:42 PM

Subject: [ ] neurological tests for people with lyme

Hello,

i had phone consultation with my doctor yesterday about my progress

with my lyme ..

so my doctor said he wants me to get neurological tests done ASAP.

have any of you gotten neurological tests done because of your lyme or

bartonella etc.? what do the tests include? all i've heard is

" lumbar puncture. " eegads. is that true?

any info would be helpful! thanks in advance!

St.

[Guest guest]

I have had all kinds of test. I still get dizzy but it doesn't happen

all the time like you are experiencing. I was also on so many

different medications and doctors are not good were I live. But They

were checking my for siezures because of dizzyness. The test was an

EEG and I also had MRI they were checking for anything and thought I

had Anurism. But then said I had nothing Still havent' put me back on

Midrin for migrains because of it though kinda wierd if I don't have

anurizm.

[Guest guest]

I went to a neurologist a couple of years ago when I got real bad. He did an

MRI but he found nothing. Another test they may use is to send electric

shock into your muscles. This is worse than it sounds. They jab thin wires

into your muscles and shock them. This did not hurt just a little

uncomfortable.

I had a " lumbar puncture " or spinal tap about 7 years ago. It was done in

the hospital using a fluoroscope. After the tap they moved me into a room

for 4 hours and did not let me get up. I also lay in the back seat of the

car for the ride home, about an hour. When I got home I was fine. This was

ordered by the infectious disease doctor I saw. They can do the spinal tap

in the office as well. I have not had this, but understand it is

uncomfortable and if you stand up with in 4 hours you can get the worst head

ache in you life.

I have very similar problems. I don't feel like I get dizzy. It is hard to

explain. It is like I am dizzy, and unbalanced but I think it is more of a

disorientation feeling. I tell people that if I didn't have good balance I

would fall all the time.

I explain it like this, when you take a step your brain does, lets say, 100

things to complete the step. Of course you don't know what your brain does

it just works. When I take a step my brain will do 98 things. It will forget

to do something. So what happens a lot is my foot will not land where my

brain expected it to. This messes with the brain so it has to pause and

recalculate what happened. I have stopped walking when the ground changes.

Something as common as a line on the ground, or going from the road to a

sidewalk will cause me to stop.

Also I will shake and jerk some time. When this gets bad you don't want to

stand near me. Sometime I will throw both arms in the air every few seconds.

My wife calls this my praise the Lord move. To control this I will start my

hand or head shaking and so long as I keep moving I will not jerk.

A bad day means I will spend the day in my recliner and need help just to

walk. This is usually at night and goes away the next morning.

I still work and seem to do better when I work. I still drive so long as I

am not having a bad day. I just came out of a bad spell. If that had not

ended I may have had to stop driving and working. I did refuse to answer or

use my cell phone while driving, and would even stop the car to change my

audio book CD's.

I could keep this going but I will stop here.

Hope this helps

Dan

_____

From: [mailto: ] On Behalf

Of stjohn.sharp

Sent: Saturday, January 26, 2008 1:42 PM

Subject: [ ] neurological tests for people with lyme

Hello,

i had phone consultation with my doctor ..

so my doctor said he wants me to get neurological tests done ASAP.

have any of you gotten neurological tests done because of your lyme or

bartonella etc.? what do the tests include? all i've heard is

" lumbar puncture. " eegads. is that true?

any info would be helpful! thanks in advance!

St.

[Guest guest]

If they're doing a lumbar puncture, it's to check for Lyme in your

CSF (cerebral spinal fluid). If it is present, they need to treat you

with IV antibiotics to stop neurological progression. They may also

follow up with an MRI to check for lesions.

>

> Hello,

> i had phone consultation with my doctor yesterday about my progress

> with my lyme treatment and he said he is most concerned about the

fact

> that i get dizzy (I crashed my car a couple weeks ago because i got

> dizzy while driving and didn't see the car in front of me had

> stopped). and also i walk and feel unbalanced. I feel like i'm

going

> to tip over all the time. i sort of weave a bit when i walk and

have

> to watch my feet or i can stumble or get dizzy. and hold onto the

> walls going up and downstairs or getting dressed etc.

>

> so my doctor said he wants me to get neurological tests done ASAP.

> have any of you gotten neurological tests done because of your lyme

or

> bartonella etc.? what do the tests include? all i've heard is

> " lumbar puncture. " eegads. is that true?

>

> any info would be helpful! thanks in advance!

>

> St.

>

[Guest guest]

---

Hi,

I wanted to tell you about my experience having a spinal tap. What

you describe sounds a lot like MS. I have MS. When I had the spinal

tap, the worst part was the anxiety I had before it. I harldy felt it

and someone drove me home, I laid down the rest of the day and was

fine the next day. It was not bad at all. I had the spinal headache

when I had a meylogram and it was horrible, that's why I was so

afraid prior to the spinal tap. But, like I said the tap was not bad

at all.

They may also do some tests called " Evoked Potentials " which tests

the function of your nerves. Many people with MS have dizziness as

the first symptom. They aren't bad either.

I have had a lot of tests done, and none were bad except the

myelogram. I will nevr have another one of those, but they don't

really do those much anymore.

I hope this helps.

Good luck

In , " stjohn.sharp " <stjohn.sharp@...> wrote:

>

> Hello,

> i had phone consultation with my doctor yesterday about my progress

> with my lyme treatment and he said he is most concerned about the

fact

> that i get dizzy (I crashed my car a couple weeks ago because i got

> dizzy while driving and didn't see the car in front of me had

> stopped). and also i walk and feel unbalanced. I feel like i'm

going

> to tip over all the time. i sort of weave a bit when i walk and

have

> to watch my feet or i can stumble or get dizzy. and hold onto the

> walls going up and downstairs or getting dressed etc.

>

> so my doctor said he wants me to get neurological tests done ASAP.

> have any of you gotten neurological tests done because of your lyme

or

> bartonella etc.? what do the tests include? all i've heard is

> " lumbar puncture. " eegads. is that true?

>

> any info would be helpful! thanks in advance!

>

> St.

>

[Guest guest]

my husband and a good friend of ours both have lyme and both have severe

dizziness. what helped that with my husband was iv antibiotics and lets not

forget alot of ms cases are misdiagnosed lyme

bess012566 <bess012566@...> wrote: ---

Hi,

I wanted to tell you about my experience having a spinal tap. What

you describe sounds a lot like MS. I have MS. When I had the spinal

tap, the worst part was the anxiety I had before it. I harldy felt it

and someone drove me home, I laid down the rest of the day and was

fine the next day. It was not bad at all. I had the spinal headache

when I had a meylogram and it was horrible, that's why I was so

afraid prior to the spinal tap. But, like I said the tap was not bad

at all.

They may also do some tests called " Evoked Potentials " which tests

the function of your nerves. Many people with MS have dizziness as

the first symptom. They aren't bad either.

I have had a lot of tests done, and none were bad except the

myelogram. I will nevr have another one of those, but they don't

really do those much anymore.

I hope this helps.

Good luck

[Guest guest]

The off-balance, tippy feeling, like the world is moving when you walk and

you have to hold on to walls as I understand it is related to Babesia. I had

this a lot before my Babesia was treated; it can also be related to heavy

toxin loads -- the build up of neurotoxins that your body can't keep up with and

clean out of your system that affects your brain, and the area controlling

balance. Have you had a SPECT scan? your LLMD ought to be looking for

co-infections, and should have you do a SPECT scan to evaluate blood flow in

the

brain. This is not uncommon in lyme patients where co-infections are involved.

Good luck! - from PA

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi- Just exactly how was your babesia treated. My daughter took

mepron for 6 weeks and the vertigo was worse than ever. She had to

stop. Is there something else that we could try?

Thanks,

On Jan 29, 2008, at 1:37 PM, juliafwagner@... wrote:

> The off-balance, tippy feeling, like the world is moving when you

> walk and

> you have to hold on to walls as I understand it is related to

> Babesia. I had

> this a lot before my Babesia was treated; it can also be related to

> heavy

> toxin loads -- the build up of neurotoxins that your body can't

> keep up with and

> clean out of your system that affects your brain, and the area

> controlling

> balance. Have you had a SPECT scan? your LLMD ought to be looking for

> co-infections, and should have you do a SPECT scan to evaluate

> blood flow in the

> brain. This is not uncommon in lyme patients where co-infections

> are involved.

> Good luck! - from PA