Re: Clumping of spriochetes? WHAT????Holy Crap!!!

[Guest guest]

<<Is this true? Your friend actually had spirochetes clumped in her

brain????

Do they know for sure that it is spirochetes or was it assumed?>>

OK! Now I am REEEAAALLLLY freaked!!!!!

Can't shake the mental image of sandworms in a bait shop.

Oh well,

D.

[Guest guest]

Let me clarify the situation with the woman who had the brain surgery. She

was seeing a neurologist who did NOT believe in Lyme. However, her regular

doctor is an infectious disease doc. and has been treating her with positive

tests, of course, for Lyme for years. She has been on long-term IV therapy

several times and symptoms are always very typical serious Lyme symptoms, with

bouts of Bell's Palsy, etc. (she goes off meds, however, too soon I feel).

The neurologist mentioned that they looked like " adhesions " to him, but I was

told by a very knowledgable person on Lyme that she has read of people who get

the clumping of the spirochetes, and that is not something that is super

uncommon.(these can look like adhesions--a good Lyme doc would do further

testing) She was off all abx. at the time--and several of us felt that if her

infect. doc. had placed her back on high-dose abx., this surgery would have

been unnecessary--they started out calling it trigeminal neuralgia, which many

of us, including myself, have had and know how painful that can be. Anyway,

this was NOT meant to alarm anyone--I think this neurologist moved too quickly

as most docs do who know nothing of Lyme--point being made was this was on the

RIGHT side of her face and not the left, which was the discussion at that

time. Don't worry--just keep on the meds!!!! Conditions DO improve!

[Guest guest]

Monday, Nov 2

Maybe the woman who wrote this will read and respond. Read a posting

from " " who asked a question " how does a person survive boredom at

home " (or something similar). She lives in PA, I think. I wanted to

reply to her, but while trying to file the message, lost it in

cyperspace somewhere. , if you read this would you write me? If

you care to.

Janet

[Guest guest]

In a message dated 11/2/98 7:31:26 AM CST, Sue929@... writes:

<<

Let me clarify the situation with the woman who had the brain surgery. She

was seeing a neurologist who did NOT believe in Lyme. >>

Does not believe in Lyme? I have heard of doctors that don't believe in

Chronic Fatigue Syndrome (my original diagnosis), but Lyme?!? What did he

think all the positive tests meant?

This one bothers me. Can he not bother to even read a little on the

neurological implications of Lyme?