PAM, I READ THE HOPKINS ENTRY ROM KERR WITH INTEREST,

YOU AND I ARE RIGHT THERE TOGETHER- TOUGH MY JOURNEY HAS ONLY BEEN 3 1/2 YEARS, MMYBE MY CRASH N BURN MIGHT HELP?

DX’D IN 97,
FIRST COURSE- PRENDISONE 80 MG- EWORKED WELL, INITIALLY
WHEN CIDP POGRESSED IVIG INFUSIONS STARTED 7 MOS LATER
NEGATIXE RESULTS
PRENDISONE WAS NOT TAPERED OFF AN STARTED OSTEOPOROSIS
CELL CEPT INTRODUCED, EVENTUALLY REPLACED PRENDISONE
AND SUBSTANTIALLY SLOWED CIDP

CELL CEPT IS AN OPTION- ALSO SEVERELY INHIBITS IMMUNE SYSTEM
LIKE YOU EXPLAINED, ERIC TURNED GERMAPHOBE!

CELL-CEPT, HOWEVER, IN LONG-TERM HAS IT’S OWN RSKS
ONE OF WHICH HAS EFFECTED ME, THAT IS MYELOMA?
(ONLY SEEN IN 10% OF PATIENTS)

BUT HERE’A WHAT I WA REALLY GELLING AT;
I’M BEING SEEN BY A DR CORNBLATH, AT HOP-KINS
ON THE FOUNDATION’S MED-ADVISOR BOARD

[I] YOU WILL HAVE A VERY HARD TIME GETTING
ANY NEURO TO TRY SOMETHING THAT HAS ONLY BEEN STUDIED
ON MS (AS OPPOSED TO CIDP)
INS WON’T PAY, DRS ARE AFRAID OF BEING SUED, ETC

I FEEL YOUR PAIN- I KNOW MY CLOCK IS TICKING, AS WELL

IT IS MY OPINION THAT MANY OF THE MS TREATMENTS MIGHT WORK JUST AS WELL, WITH CIDP. ANONEX, FOR EX- ONCE A MONTH INJECTION
HAS HELPED MANY MS’ERS I KNOW- AND YOU CAN SELF ADMINISTER
AND HAS NOT AS MANY WIERD SIDE EFFECTS

BUT, DOCS WON’T USE IT FOR CIDP?

I’M TAKING DOXYCYCLINE AN OLD TETRACYCLINE TYPE DRUG
PROPHYLACTICALLY W MY CELL CEPT, AND I’M STILL WALKING!

ODDLY ENOUGH, THERE ARE SUDIES TO INDICATE DOXYCYCLINE
IN MS, CAN ACTUALLY KILL HE BACTERIA, THAT, IN SOME CASES IS SEEN TO BE THE ROOT CAUSE OF THE MS?

BUT, AGAIN, THIS IS “OFF LABEL”

THE DRUG LOWDOSE NAltrexone, annectdotally, has reversed MANY
auto immune disorders [url]www.lowdosenltrexone.org[/url] and is really cheap

BUT TRY TO GET A DOC TO WRITE IT????

Anyway, Dear, I’m right there with you

Stick Race Anyone???!!!
Eric

I assume you are talking about stem cell transplant, or the high dose cytoxan protocol? I hope Alice will see your post & tell you about her experiences with that treatment. I hear there are like 14 people who have undergone that treatment plan successfully & that was a figure I heard awhile ago. I had high dose cytoxan infusions back in 2003 when it was very experimental. After 5 loading doses in 10 days, I continued at my local small hospital to have monthly infusions for 8 more months. Looking back I am amazed that I never got sick, even had a son who works at our local clinic living with us. But I never did get sick at all & never had any vaccinations afterwards either. But remember it was all very new then & it was my last treatment option available. It did arrest my CIDP & allow my nerves to finally begin healing. I would do it all over in a heartbeat, good luck…