Re: mary of the myco kind

January 23, 2004

Dear Aisha,

What a trove of info you are! Yes, I did see the relationship

between some sarc and a few who had TB. But actually very few of the

studies I found found very many who outright had the TB. And again,

if it was that in all of us, we'd all have family members, those

around us daily, who were sick. Hey --- even my lousy exhusband

would be sick. But he wasn't. So yes, there is a relationship! But

in my own life, I didn't have it. However, there are some sarcs who

do!! You're right.

Yes, I take rifampin. But i never took it before, never alone and

not without Biaxin. Will it work alone? Depends on what you have. So

again, you're right. Depends on what you have. But with avium,

intracellulare and chelonae, you need biaxin to make it work. I

guess that was my whole point: don't just take drugs, find out what

you're taking them FOR first. and we worked them all in slowly so

we'd know what drugs were causing what symtoms if any of them

appeared. we actually phased in the TB drugs first. They were the

scariest. So far, so good! and then the biaxin. You might have

entirely different critters than me. You might not even have the

avium and intracellulare.

If you can't take biaxin, even half a tablet, there are other drugs

for them to give you, including the azithromycin. They'll know what

to do! And remember, you have to determine if it's a reaction or if

it's an IRIS. But you know your body. I don't have to tell you that!

Your docs will know what's what. Looking back on it all now, I would

swear to you that I could have never taken biaxin, that it made me

sick. But it wasn't the drug; it was an IRIS. My first IRIS was that

bad. But then poof, it went away. Now, every two weeks they phase

back but hopefully, after three months, they won't be as bad. Oh so

I hope!!! I hate them. And you never know what's going to show up in

them as the various infects rise up, try and jockey back for

position.

And you're right, which ones.... is the whole argument: find out

what you're taking it for and then do the combo. You're right!!!

Totally!

Rifampin has only one bad side effect so far. I don't mean to be

gross. But it turns your pee and your stool.........dead orange.

Like orange. That took some getting used to. Ethambutol we backed

down on a bit. I already have uveitis which is about 65 percent

better now. But E can cause eye problems. That one is the one that

scared me. Some people just do the R and not the E! Up to your doc

for sure. I do NOT know it all!!!

I don't think you'll have much argument from your doc. My only fear

is that with some of you, if it doesn't show up in sputum, then

you'll have some docs who'll say, well, there's nothing here! And

then, they would have missed the chance to explore further in CFS or

lung tissue. That's why you need a guy who can stay with you the

whole way, bear down and truly FIND it. I lucked up. Mine showed up

pretty fast in sputum.

You know I truly wish you only the best. But you've got the names

and numbers and that says it all!!!!! Thank you for ever letting me

post here! Thank you. Without you taking a chance on me, none of

this information would have gotten out. You and T took a huge

chance. I'm very grateful. I've never once betrayed that chance,

either. I've always told the truth. And when I don't know, I tell

you.

And truly, the DNA, however it's performed, will get you to the

finish line. And then, you work on your drug combo. Who knows? Maybe

by the time you test, the world would have come up with a much

better drug!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! But the world better wake

up because I have a sneaky feeling it's gonna find out that most all

the immunes...........are this.

I know the phrase " the body turns on itself " was invented by a man.

I actually tried to find the creep who came up with that phrase. I'd

like to kill him. He set medicine back by about 200 years. And the

lives it mostly affects are women. So you know the ass was a man.

I " ll find him. And if I do a book (which I hope to), his name is

going to be front and center.

One last thing. Another little stroke. Today I got my courage up and

called one of your former members who lives here in my little town,

of all places!! We talked a long time. Once she got used the fact

that I was not talking about some other list's antibiotics (and boy,

you say the word antibiotic, people because of that list want to

jump all over you so i'm trying to come up with a new word) but was

talking about a whole nother deal, she really listened. Here was the

thing that shocked me: both of us swam in the same swimming pool.

Can you believe it????????? And she grew up with lots of birds.

Birds a major avium source. And she had gardens, she lived on the

south side where there's a lot of drainage and water runoff

problems. And she worked in a hospital. So there it was! Her sister

is sick, too, which makes me think they inherited the bronchiectasis

like my siblings probably did. Anyway, it showed what a tiny world

it was!!!!!!!!!!!!!!!!!!!!!! All because of your list. I wanted to

get to her in case the house really sells and I have a chance to

move. She at least had the name of the doc I used here in town.

Thanks again for letting me do this. And I hope your test results

are very successful!! And that ultimately that gets you to the right

drugs -- the right drugs for YOU -- that get you well.

Best,

MA

January 23, 2004

J,

I am sorry for your infection. My favorite color is Tar Heel blue. I

bleed blue but I don't s--t blue!!! hahahaha. Orange is OK in trees

in the fall. Not in the toilet bowl. I cringe every time I think

somebody is going to come in a stall behind me. But then maybe I am

unreal. Jim wanted to know if I was real. So I crap orange. maybe I

am unreal. Ha!!!

m

January 23, 2004

J,

I am sorry for your infection. My favorite color is Tar Heel blue. I

bleed blue but I don't s--t blue!!! hahahaha. Orange is OK in trees

in the fall. Not in the toilet bowl. I cringe every time I think

somebody is going to come in a stall behind me. But then maybe I am

unreal. Jim wanted to know if I was real. So I crap orange. maybe I

am unreal. Ha!!!

m

January 23, 2004

J,

I am sorry for your infection. My favorite color is Tar Heel blue. I

bleed blue but I don't s--t blue!!! hahahaha. Orange is OK in trees

in the fall. Not in the toilet bowl. I cringe every time I think

somebody is going to come in a stall behind me. But then maybe I am

unreal. Jim wanted to know if I was real. So I crap orange. maybe I

am unreal. Ha!!!

m

January 24, 2004

Dear Kim,

That's an excellent question! Is there a sarcoid? Was there ever

one? At least in my case (and i'd been sick 8 years) the docs don't

think so. They think it was the 4 infections the whole time. So was

there ever a disease called sarc? It's just my VERY personal opinion

but I don't think so. I just think the docs all started down the

wrong road that phrase " the body somehow turns on itself and we

don't know why " got accepted.

Remember, an ID and a sarc guy go after this with two totally

different minds! Totally. Is one right and one wrong? No. Just

different backgrounds, different approaches. But in my case -- and I

can only speak for me -- the ID doc's approach was MORE right. In

the end, everybody has to make up their own mind.

I don't know what state you live in. But I think I gave the

universities who are on the cusp of this. All you have to do is call

and ask for the ID department. Tell them what you have and that'd

you would like to see if there is an infection powering your sarc.

That you know it's an unusual request but that since the 1990s there

has been a lot of medical evidence that shows there is one. And

then, cite the studies: Liedtke, Schick, Graham, Michell Saboor. And

you'll need an ID doc who's really willing to dig! That is, one who,

if your sputum is negative, is willing to go to the mat for you and

do either CSF or lung sample!!!!! NEVER stop at the sputum if it

comes up negative. I wish I could give each of you a good doc!!! I

can't but I can give you the next best thing: a place to call!

I'd try calling Heifets at National Jewish Center in Denver, any of

the branches of the ID departments of the University of Texas as

they are all connected and they all know about this, UCSF in San

Francisco. The doc's name there is s. University of Colorado ID

Department in Denver, Washington University in St. Lou, MO., Yale

University ID Department if you live on the East Coast and

Vanderbilt in Tenn. There! That should give you a good US sampling

from all over. And if that fails you, again, call the IDSA in

Virginia. They have a website with their phone number. Tell them

you'd like a doc in your area, that you have sarc, who would be

willing to really work hard with you and see if there's an infection

collection (You know.....like Calvin Klein? The spring collection!

Well, I call it the 'fection collection. Lovely little ugly green

and brown things now showing at a lung near you!!!) in you!!!

Are you in danger? Well, I was. I knew I was dying. I could tell it.

Lost 50 pounds, never moved, didn't eat, couldn't breathe, didn't

think right, didn't sleep, hurt all over. I just somehow knew it was

more serious. Guess it was because I had so many in my family who

had this and who died. I just didn't know then what it was. Yes, if

you don't get some of this knocked back and it is this, it is VERY

serious. VERY.

I've often thought this would make a VERY funny cartoon. Except only

somebody like me (or the others I met who went my route and that's

just it --- it's ONLY a route!!!) would get it. You have a funeral

service and there's a group around the coffin. And one of the people

says, " oh, it was just that chronic fatigue that got her. " And above

the coffin is the REAL ghost with a lab sheet in her hand, sadly

shaking her head!!!!!!!! I don't mean to scare you. I'm trying to be

funny. But that's just the irony: it wasn't the fatigue. It was the

fection collection.

So I hope this helps you. Was there ever sarc? I truly don't know.

But I now have a ton of questions about it!!!!!!!!!

Hope this helps you,

MA

January 24, 2004