Re: ID TB Follow up

January 21, 2004

Dear Glenda,

What can I say? I am thrilled for you!!!!!!! See? Told you I was

telling you the complete truth!!! Hey -- I know how scary this is. I

was dead scared. One of the things about both rifampin and rifabutin

(sp) (depends on which one your doc turns to) is that you CANNOT

take them every day AT ALL EVER. EVER. They can make you VERY sick

if you do it that way. My doc says to use them only 3 times a week

at most. NOT everyday!!! Still, you need it as a synergizer to

Biaxin. I've since met one person where the docs didn't know about

that and they got sick. But on the corrected dose, over a year,

they, too, got better!

And you're right: there is a mycobacterium connection. Maybe not in

all of us but I feel sure in many of us. And have him look into the

slow growing mycobacterium, the rapid growing mycobacterium and the

nocardia. Those tests take the LONGEST to come back, sadly. They

need quicker tests and better drugs. Then include the gram

negatives, too. I had one of those as well! You'll see when you get

to where I am now you have sooooooooooooo many questions without

answers!!! And then, you start whatever your individual regime is

and it's a very lonely year. Again, YOUR drugs for YOUR critters.

Might not be the same as mine! But if there's ANYTHING I can ever do

for you, it's my way of giving back. Just write and ask. And I will

always tell you the truth and I will give you everythign I can!

Again, I am thrilled for you! Best of luck. You're in VERY good

hands. This one place made the connection about 15 years ago.

They've actually worked with several hundred patients so you don't

feel like a guinea pig. And they were nice from the get-go. In fact,

all the folks I talked with in those research studies were just as

nice!!

Best of luck,

M

And see? Didn't I even tell you how to approach the doc right?????

And I'll bet he didn't think you were looney tunes, either!! Again,

you have made my day. I hope in a tiny way I helped or at least gave

you an option.

January 21, 2004

Now that I'm going to be tested lots of questions go thru my mind.

But I have to focus on first things first.It doesn't take much to

clog up my brain, mind, thinking. I am fortunate that I have a doc

willing to do this. It was he who contacted me after not having

seen him for a while. He had read about the sarc/tb connection and

said it was up to me, a shot in the dark if I wanted to try tb

drugs. So at least he is open to other possibilities. Now the

waiting begins. Believe me , I will have questions. Even

before I got sarc I was known in the family as the one who asks too

many question. Family members would warn the unsuspecting to no

avail. If I were an American Indian my name would probably be She

Who Asks Too Many Questions. But that's how I learn. At least I

ask. In my next life I'll come back as all knowing but for now

questions work for me. (I have a list of next life attributes, one

is to have perfect pitch. My family has suffered so) Glenda

January 21, 2004

Glenda,

At first, i didn't have any questions. I was just grateful to have

solved the whole damn mess. And then, slowly, they started creeping

in. And then the anger and the uncertainty.

But you start with the tests!! Hack your foooooool self into a cup.

And if it doesn't show up that way, you have two other options.

I have to say in the studies I found, TB didn't show up that much at

all. And then I realized when they said TB what they actually meant

was that they were testing in the tuberculosis family, the

mycobacterium, that it wasn't TB itself. I mean, if it was that, our

whole families would be sick, too!!! And they use the TB drugs with

this as synergizers only; it's not the true big guns. Biaxin is.

And the waiting. It's awful. For those six or so weeks, I doubted

myself daily. I thought: MORE money down the drain. But when I found

they had worked with other chronic fatigue and sarc people, then I

knew. I just knew. It all fit. I also think this is wegener's

granuloma and lupus. I have a friend here now, G, who is going to be

tested Thursday. She has lupus. And my other friend, B, with CFS is

being tested Friday. One of the things I'd like to know is: how

systemic? And it's like my Dr. W here says, unless you test every

single tissue, you don't know for sure. You never will. So just take

the abx and go on with your life.

And she who asks too many questions? That's the she who gets the

answers.

M

In my next life, I'd like to be Flannery O'Connor. She could use a

verb like no other woman on the planet. So I understand about your

want of perfect pitch. She had perfect verb. Best of luck to you.

January 22, 2004

, where do you live? You mention Atlanta a lot, and I wondered if you are

local to us. I work at Emory University Hospital. Have you seen ID docs here?

We're looking for one (on your advice).

Love,

Jeri

January 22, 2004

My brother lives in Gainesville up on the lake so I know Atlanta

quite well! Phipps and Lenox! And the Varsity. Chili cheese. Yum. My

nephew is at Tech. I live much further south, running down I75, to

Florida. And if you ever come to Florida, without question, our most

gorgeous beach (and i've been to almost all of them) is a stretch

called Cape San Blas. It's between Panama City and Apalachicola. The

state bought all the acres so it's just you, the water and the

beach. Enormous dunes for as far as you can see! It's out on a spit.

It will blow you away! It is just breathtaking. Great water, fishing

and the bay side is great for shelling. You can stay fairly cheaply

in nearby Apalach which is a little seaside town full of old

southern homes.

You might want to write the Infectious Diseases Society of America

in Virginia (have website) to see if they have an infect hunter your

way! Tell them your whole situation and ask if they know of somebody

who would be willing to work with somebody like your husband or who

would be interested in maybe pursuing finding an infect starting

from scratch up your way. Hope this helps. M

January 22, 2004