Re: HELP - EMERGENCY!!

[Guest guest]

Dear Friends: Please HELP!! I was diagnosed with E.M. on 8/26, placed

on 200 mg doxy/day, had CNS and meningitis symptoms early, as well as

photophobia and mind fogging, and recently went to 400 mg doxy/day. I

felt better for a week; now I'm back to feeling fatigued. Here's my

problem: Yesterday, I went to a neuro-opthamologist who told me the

following:

1. I have neuropathy. My left eye does not react the same as my right,

and the left side of my face does not have as much feeling as the right

side.

2. She wants to do a MRI.

3. She called a Lyme doc in Balto. named Dr. Levin, and

wants me to see him. He's going on vacation for 3 weeks, but he told

her to do a lumbar puncture for lyme, babeosis and erlichia.

Previously, I had 2 ELISA lyme tests and they were negative. He may

recommend IV drugs.

HERE ARE MY QUESTIONS:

1. Should I get the lumbar puncture?

2. What is neuropathy - what is my long range prognosis?

3. Should I try to see someone sooner than 3 weeks? I've been

on doxy and will continue on it, now at the 400 mg/day level until I see

him.

Thanks.

[Guest guest]

Hi Ken,

First off, don't panic, neuropathy is pretty much a part of Lyme, here are

some web pages that may explain some of it:

http://thalamus.wustl.edu/course/

http://www.neuropathy-trust.org/

http://www.neuropathy.org/

Also here is a neurology forum where they will answer your questions

pretty quickly right on the forum:

http://www.medhelp.org/perl6/neuro/wwwboard.html

I have never heard of Dr Levin in Baltimore, so I am not sure if he is Lyme

literate or not. The early CNS symptoms and meningitis symptoms make me

think of the ehrlichiosis diseases, I had the same symptoms as you did,

except I never saw a neuro-opthmalogist. If they are ehrlichial diseases

you are on the right meds to cure it.

Whether or not you decide to go for the lumbar puncture is up to you, they

can be quite safe if you follow instructions and lay flat for the time they

tell you. Whether this puncture will show anything at this point is a big

question. There are blood tests to determine erhlichiosis, have they done

these tests? The fact that you had an EM rash indicates a coinfection of

Lyme disease too. I am not surprised that your ELISA's were negative, they

are hardly reliable, and in any case it can take a while for your body to

produce the antibodies to the disease.

Try to keep in mind that every specialist you see is only looking for

whatever their specialty is....Lyme affects all parts of the body, your best

bet is to see a good Lyme literate physician.

Keep calm and keep in touch,

Marta

>Dear Friends: Please HELP!! I was diagnosed with E.M. on 8/26, placed

>on 200 mg doxy/day, had CNS and meningitis symptoms early, as well as

>photophobia and mind fogging, and recently went to 400 mg doxy/day. I

>felt better for a week; now I'm back to feeling fatigued. Here's my

>problem: Yesterday, I went to a neuro-opthamologist who told me the

>following:

> 1. I have neuropathy. My left eye does not react the same as my right,

>and the left side of my face does not have as much feeling as the right

>side.

> 2. She wants to do a MRI.

> 3. She called a Lyme doc in Balto. named Dr. Levin, and

>wants me to see him. He's going on vacation for 3 weeks, but he told

>her to do a lumbar puncture for lyme, babeosis and erlichia.

>Previously, I had 2 ELISA lyme tests and they were negative. He may

>recommend IV drugs.

> HERE ARE MY QUESTIONS:

> 1. Should I get the lumbar puncture?

> 2. What is neuropathy - what is my long range prognosis?

> 3. Should I try to see someone sooner than 3 weeks? I've been

>on doxy and will continue on it, now at the 400 mg/day level until I see

>him.

[Guest guest]

Dear Friends: I called 1-800-TickBite and they referred me to Dr. Gill

in Bethesda, MD. Any experiences with him?

Lovette