Three more studies

[Guest guest]

Hi everyone,

I had some more email yesterday, people wanting to know about

neurosarc as opposed to regular sarc. And did I find anything with

that? Because if I didn't, then that would mean somehow neurosarc

maybe isn't involved. I could see their point. Granted, when I did

my original searches months ago, I didn't specificially do it under

that. I did it more under just DNA alone. I figured DNA was DNA.

Didn't matter if they took it from sputum or CSF. Maybe that was a

dumb way to do it, but now, looking back, I don't think so. Maybe!

But in the end, it got me to take my own gamble on doing test

results that later came back positive so.....I don't think I was too

far off. Heck, my brain does NOT work right most days. So I could

have been wrong in my initial approach. Maybe....

Still, there have been 3 studies about neurosarc and the DNA in them

did find the slow growing mycobacterium. Some used the more advanced

DNA, which has been really refined since about 95-96. And when a

study says it used " tuberculosis chain reaction, " I don't want that

to scare you. It just means they used the DNA from the mycobacterium

family. TB is one of the mycobacterium, is all. It does NOT mean

it's TB. If I had TB, my whole family would have been sick, even my

ex-husband. They aren't. So they really don't think it is TB at all.

There are more than 100 members of the bacteria/mycobacterium family

and TB is one of them. So is leprosy. So is paratuberculosis which

is a different critter and has been linked to gastric problems and

gastric immune diseases. In the end, there are more than 100 of them

and you have to find yours. You really have to search with DNA to

find out which one but medicine really can now find it! Could be

avium, intracellulare, chelonae, marinum, kansasii, abscessus,

fortuitum, xenopii. Or others. And the drugs for all of them vary,

too, as do the doses and schedules. Some of the drugs they do by

weight, by the way. And no, I am NOT going to tell you how much I

weigh. I did lose 50 pounds when this first hit. Now I can't seem to

lose the weight even if I eat but a small 600 calories a day. I hate

my belly. The ID docs call it lipodystrophy. You can look that up on

Yahoo and see how it works!

Anyway, should you want to take these to your doctor, you might want

to look at the brief study done by W Liedtke and P Faustmann in

Germany; U Schick, also in Germany; and DY Graham at Baylor

University in Houston. All on PubMed. Type in " mycobacterium and

neurosarcoidosis. " For those of you from other countries, Faustmann,

I found, did have a website of his own. It's in German and I'll

admit I don't understand the language. I don't know if he takes

email. If you decide to write him, I know you'll be nice! I could do

it in French, maybe, but not German.

All 3 found mycobacterium in neurosarc either with DNA or in the DNA

of CNS spinal fluid. So those 3 back up my original 8 or 9.

Just thought you should have this. Again, I'm not pushing it!! But

it's interesting these guys found the same as the ones I originally

found. And, of course, found some of the same creatures that I later

DNA tested positive for. Coincidence? Maybe! But I don't think so!!!

That would be a pretty odd coincidence......especially since I found

them off the web today and I had test results weeks ago.

Remember....if you do this you have to DNA test first and then go on

the right drugs.

Have a great day. I'll try and lay off posts about this. I must be

boring you guys to death!!! I don't mean to. Thanks for even letting

me appear here. I truly don't mean to bore. Again, I do NOT want to

push. But I just want you to have the same information that I did,

is all. Something, as we say down South, to put in your hip pocket

to chew on later.

Take care,

mycobacmary

[Guest guest]

severe kidney pain is my main complaint for almost a year now i had stones but the pain is just so well painful im right now trying to get to the chat room

[Guest guest]

severe kidney pain is my main complaint for almost a year now i had stones but the pain is just so well painful im right now trying to get to the chat room

[Guest guest]

Dear Marla,

No, I am NOT a doc. I got my undergrad degree from UNC Chapel Hill

in English. They have one of the finest English departments in the

country. And the BEST basketball ever!!!! I got my master's at

Florida State, also in English. I have been a reporter since 1974

and my last job was covering the White House adn the country on

disability and civil rights for a large Washington syndicate. My

column went out to more than 300 papers. At the time I had back

problems and saw a lot of discrimination because of my

back....little knowing that my back REALLY was a form of sarc. Funny

world, huh?

My journey to the Cleveland Clinic was part of a LONG one. So sit

back, here goes. It's long. Sorry to be so winded.

I've been sick going on 8 years total. In 1999 when I could stand

the insomnia NOOOO longer (only i didn't know what it was) i took a

drug called klonopin. for maybe 10 weeks? VERY short term. i know

it's mildly addictive but i was only going to take it 10-12 weeks

tops. i just wanted to sleep. i was living on 4 hours a night,

soemtimes NO sleep. and in the day, i had these other wacky symptoms

only i didn't think it was all related. (again, it was the sarc only

i didn't know it and at the time i only had a stupid chronic fatigue

syndrome diagnosis). so after 12 weeks i noticed my symptoms got

WORSE. a LOT worse. and i thought: why is this?? so i stopped the

drug. and i almost died. and i mean....died. in 3 weeks time my hair

fell out, fatigue so bad i could NOT move, heart killing me, could

not get air in, skin peeled, kidneys bled like mad, unreal body pain

where i would cry, could not see (uveitis), stomach swelled to a

pregnant belly size, stool changed. all these awful things that are

NOT part of a withdrawal. but, sadly, the internet can be a good

thing and a bad thing. i saw sites onthe web thta said you could go

into " benzo withdrawaL " FOR 5 OR 6 YEARS, EVEN IF you only take it a

hand full of weeks. so at the time, i thought: well, OK. i took the

wrong drug. but symptoms got worse. much worse. ihad to leave work.

a job i adored.

so i went to see the great doc i have now. and we started to

explore " drug induced disease. " actually there are really only 5 of

them: porphyria, all the 12 forms of vasculitis including wegener's

granuloma, the hemolytic anemias, stevens johnson skin stuff and

sarcoidosis. i went to UAB to see a porphyria doc. i didn't have it.

i went to UNC to see a vas doc. he was a jerk but i didn't have that

either. I also then went to the cleveland clinic just to be sure i

didn't have wegener's/vasculitis and saw hoffman. that's when they

did the virus studies, too. (it was actually there i began to see

the link between infections and immune disease) i went to another

clinic to find i iddn't have the anemias. i went to a skin doc and

did not have SJS. (by the way all these docs knew of the dangers of

klonopin. do NOT take that drug) finally i got to a sarc doc who saw

the lung scars, high D, high ACE, CNS monocytes. if you're

interested the guys at the cleveland clinic have written a great

article on drug induced lung immune diseases they have seen in their

clinics. drugs you might want to think twice about before taking.

you can find it on PDF by looking up " drug induced lung disease " on

Yahoo. It should come up. And you'll see in it are the sedatives.

you might want to check their drug list out and see if there are any

drugs on it you've reacted to! i've had other reactions but NOTHING

like klonopin. NOTHING.

There is a VERY good slavic doc, his name is f Prandota. You can

find his stuff on pubmed. Prandota's theory is that underneath every

deadly drug reaction is an infection the person just didn't know

they had. And what gets raised up by the drug, once it's stopped, is

that the drug, he theorizes, somehow sedated or interfered with the

white cells trying to fight the infection. take the drug away and

the white cells roar backin an attempt to really fight an infection,

one, again, you didn't know you had! And that roaring back can be

quite lethal. So that was me!!! Prandota was right and that Klonopin

almost killed me big time. I am still in touch wiht 4 others that i

met off the one benzo site. All of them, like I was, are now in

theprocess of seeing an ID doc. All of them, by the way, wound up

having sarc!!!!!!! Amazing, huh?

So that's my whole story. My journey into sarcdom. Please, I am NOT

a doc. I make a ton of mistakes. Adn my juorney has been a very long

one as you can see. But in the end, I did get to the finish line!!

Maybe a smarter person would have gotten there faster but I did make

it. I did find it....for me! I NEVER once gave up on me. I knew

somehow that drug made it worse. Only I just didn't know WHAT it had

made worse. now I do.

Hope this helps you!

M

TIODATT. You did a post but I don't see any questions. write and

post again. i will answer what you have!