Jan

[Guest guest]

Jan,

Thanks! I've really tried to be honest. I'm afraid being so cost me

that foul mail but that's OK. I got over it! And if they do it

again, the cops have them!

If you have any questions, just ask. You certainly might want to get

in touch with the infectious disease department at Vanderbilt. You

can find a main department number for them off the web. Just punch

in " Vanderbilt University Infectious Disease Department. " It should

come up! That's an option! Just call them, tell them what you have

and ask them if they have an infectious disease doc who could see

you? Tell the nurse or staff member who answers that you have sarc

and you'd like to find out if a mycobacterium or a nocardia is

powering the sarc and could they suggest somebody? I'd then take in

the studies that I've mentioned (Michell, Saboor, Graham, Schick and

Liedtke) for extra backup! You can find those on PUBMED.

The other option you have is to contact the IDSA in Virginia. They

have a website, too! Or you can call them and ask them if they have

a nonHIV mycobacterium specialist in your part of Tenn. who would

see you. The next thing I would do is once they give you a name,

then I'd call the nurse, tell them you know this request is unusual

but that you have sarc and you'd like to see if a pathogen is

powering the sarc and could they help you?

Remember they can find it through sputum, spinal fluid or small lung

biopsy where they put you to sleep first. But if it's there....they

CAN find it through DNA labs. Did me!

That should give you two great options! And then, what you have to

supply is the courage. Pick up the phone. Call. Don't second guess

yourself, put the fear on hold and just call! Here: here's the

cowardly lion's medal. I'm sending it to you and pinning it on your

chest!!! There: you have courage. And like the lion says, " Awwwwww

shucks! " You CAN do this! Now what you have to do is use it:

CALLLLLLLLLLLL. And write me if I can answer anything else! I know

this is scarey but if you don't call, you'll never start the ball

rolling!!!!! So call!!

And about that brain: One of the things some ID docs think is that

when you have a systemic infection (the big word for this is

pathogen) as I do (or 4, rather), you start running low on a

substance called dopamine. Not to mention little cytokine cells

attacking you! They used to think you only produced dopamine in the

brain. Now they know you produce it all over. (I think that's why I

jerked in some parts of my body. It wasn't my brain. It was I was

low in that area, maybe.) When you have infected white cells and

infected endothelial cells (cells in the veins), you can't carry

dopamine as well to the body. So the level slightly drops. Or so

they think! These are the cells responsible for transporting it. And

if you have infected epithelial cells in the lungs, too, they can't

carry dopamine as well, either! So with less juice, your brain

starts screwing up, not remembering, fast forward thoughts (the mind

jukebox as I call it), you feel wired, the fatigue, and you can get

a stiff neck. They know this from looking at polio patients, brucei

folks, lyme folks, aids, nocardia. And it affects your sleep. Or it

can! They are doing studies now at Northwestern to see if adding

tyrosine, which is used to make dopamine, to the diet can help the

lungs clear out these awful things faster. And if the tyrosine helps

with the dopamine like symptoms. They know that adding dopamine like

drugs can help --- but only for a short while and then, for whatever

reason, the body falls back and it doesn't work. You can find the

tyrosine study on PubMed by punching in " tyrosine and lung

clearance. " It should come up! I'm having one of those docs call my

doc next week to see if we're going to add tyrosine tabs. It's worth

a try!! And if not, then that's another $10 down the drain.

I HATE my brain. It never shuts up. I hear stuff in it all day. I

hate the Madonna music crap the most. And the KFC chicken ads. Some

days that's really going and I haven't a clue why!!!! It's " this "

brain and then me, the real brain. Kind of like having a Siamese

twin brain. But then, had it not been for a free falling, fast

forward mind, I would not have found what I did!! So I guess I can't

complain. Still, brain farts. I hate them!!!

Both of those ways should get you a doc. And if you get a chance,

you might start looking at our symptoms and dopamine. It was an eye

opener! I always thought I had a lot of Parkinson's symptoms. Now I

think I know why. I even have changes in gait. And, as I said

before, I think, two years ago in a very large PD study, they found

almost all the patients had a nocardia. So that sort of fits!

Mycobacs and nocardia act the same. A lot of PD folks have the same

mental things we do.

Hope this gives you some options! And some courage. I can't make the

calls for you.............but I can give you the honesty to try!

Tomorrow is Friday. Ask yourself: what are you doing? And if you're

not doing much, pick up the phone and call!!!!

M

[Guest guest]

Hey ,

I take methotrexate too and it seemed to be helping at first but now it seems like nothing is helping. I'm on a 6 weeks taper of pred orally and its not helping either and the neuro surgeon is pushing to operate on my neck and at this point i'm not sure if surgery is a good idea especially until i hear from the ID docs at Vanderbilt.

Confused and foggy headed i am these days.......man oh man. Think i need a break.

Hope you feel better soon.

Love and prayers,

Jan

Thanks Jan for the email. I do hope things get clearer for you. Taking the Methox. has help my mine to not be as foggy.

Love to ya,

[Guest guest]

Jan,

Maybe you need your Metho dose increased??

Marla

Re: Re: Jan

Hey ,I take methotrexate too and it seemed to be helping at first but now it seems like nothing is helping. I'm on a 6 weeks taper of pred orally and its not helping either and the neuro surgeon is pushing to operate on my neck and at this point i'm not sure if surgery is a good idea especially until i hear from the ID docs at Vanderbilt.Confused and foggy headed i am these days.......man oh man. Think i need a break.Hope you feel better soon.Love and prayers,JanThanks Jan for the email. I do hope things get clearer for you. Taking the Methox. has help my mine to not be as foggy.Love to ya, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

That's what i was wandering maybe it needs increasing. Thanks Marla.

Love and prayers,

Jan

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03