Re: Update on Jan and new MD appointment

[Guest guest]

Dear Jan,

See? Once you just start knocking doors, you get rid of the fear.

And when you get to your ID, be VERY nice but VERY firm. And kindly

say this: " I have a form of sarcoidosis. I understand there is some

growing evidence that points to sarc possibly being related to a

mycobacterium. I am interested in pursuing this. Could you help me

find if I have one? And if you're not interested, could you point me

in the direction of someone who would, someone who works with what's

called the atypical mycobacterium? " And then hand them the

CDC/sarcoidosis study, and the work of Liedtke, Schick, Graham,

Michell and Saboor. Tell them also you know that there are various

ways that they can try and find an isolate (piece of your germ) and

that you would be interested in pursuing them.

See? See how nice and smooth that sounds? It's not confrontational,

and it's not demanding that they automatically know or make the

connection between sarc and mycobacterium, it's just

being........nice. Firm......but nice. It's just, here's what I've

looked into and could you help me?

And you're at Vanderbilt! One of the GREAT places for this!! Their

ID department will not think you nuts. And then, you roll the dice

and see what you have. You may not have the same as mine. It might

be harder to find in you than it was in me. I think now I've had

this a lifetime so I was really infected! I think that's WHY it

showed up in the sputum so easily. And if they can't or won't do

sputum, you have other options: spinal fluid, lung sample, liver or

spleen sample. Finding the sample that leads to the diagnosis can be

tricky business and you need a doc who will go to the mat for you!!!

That i can't give everybody, but I can give you starting points to

send you on your journey.

I am so proud of you!!! You did it. I know you're scared. The

HARDEST part actually won't be seeing the ID but the HARDEST part is

the wait for the test results. It's a verrrrrrrrrrrrry long wait.

And remember to look for the nocardia and the mycobacs first. They

take the longest to come back!!! And you'll think, why did I do

this, it will show nothing, this is a waste; every single day. And

then comes that magical day: when they call you back and say,

there's something here! And then the journey changes: you start the

drugs to hopefully get you well. And even then, even on the right

drugs, it's another verrrrrrrrrrrrrrry long trip. You have to put in

a minimum of a year. Some, even on the right combo, are not going to

get well. It's scarey here, too. That doesn't change! But getting

the tests done was the best money I ever spent in this whole sarc

episode. Eight years I can NEVER get back. Eight years of wasted

everything from surgery to drugs and all for a damn infection. What

a waste!!! But doing this, it saved my life. Had I gone on I would

have slowly died. No lie.

I wish you well. And if you need to, lean on S or Aisha or T or

Glenda or any of the others who have started down the SAME road as

you!!! I think, all total, there are about 10 of you out there who

got in to see the ID. That's amazing!!!!!!!!!!!!!!! Just amazing.

And remember, I'll do one last post about the new orgs that CDC

tells me about. That way, the rest of you all have good options.

Remember -- they are just starting points. But if you work hard

enough, push hard enough and ask " can you find somebody who would be

interested in helping me? " -- you should get to the finish line.

My best!

M

[Guest guest]

Jan,

Sorry for the struggle. Keep the faith. I'm also sorry I wrote two

letters. I wasn't sure the first one went (now I see why) and then I

wrote a second! Didn't want you to think me stupid.

Just know you're doing the best you can. And that's all you can do.

Right now, just look forward to February! And then, when you can get

better than this, concentrate on fixing the family up!

M

[Guest guest]

Jan,

Sorry for the struggle. Keep the faith. I'm also sorry I wrote two

letters. I wasn't sure the first one went (now I see why) and then I

wrote a second! Didn't want you to think me stupid.

Just know you're doing the best you can. And that's all you can do.

Right now, just look forward to February! And then, when you can get

better than this, concentrate on fixing the family up!

M

[Guest guest]

Dear Jan,

I'm so sorry to hear about your family situation but I hope that things

start to look up soon for you all. Sometimes it seems that things have to

plummet down to the bottom rung of the ladder before the light of the tunnel

shines and you can crawl to it. So keep believing for you will get there.

Good luck with the infectious disease Dr. Sometimes taking these medications

is trial and error, you're a guinea pig in a sense as you have to find what

will work for your own body, but its your health and you are worth the fight

As my immuno and I agreed, it is a much better route to take then one of

heavy chemo because this one offers a cure, not just a maintenance programme

with side effects.

Wishing you the best,

Aisha.

-- Update on Jan and new MD appointment

,

I wanted to let you and the group know the good news of reaching one of my

milestones today.

I finally received word of the referral my pcp made to a doc in the ID

department in Vanderbilt here in Tn. It is scheduled for Feb 16th at 1pm. I

m so happy and nervous at the same time i'm shaking, of course a lot of that

is this cruddy sickness, I have been feeling so bad lately and now i'm on a

prednisone taper for a few weeks and I hope that won't alter any test

results they do on me when I do go to see the ID doc cause I feel this will

be a huge milestone in my treatment regime and me getting whats left of my

life back.

Also I got my sed rate results finally after they have been dodging me for

nearly a week it was 34 which the nurse said was high.

Thank you and everyone else for your prayers and support.

I am gonna start keeping a detailed diary if that will be of benefit for the

doc when I go of all my symptoms and to tell you the truth the pred doesn't

feel like its working this time, it usually makes some kind of difference

but not this time.

My prayers are with you Aisha and Shar and her family as well as everyone

here.

I'm praying for a miracle for us all.

Love and prayers,

Jan