Hi-Cy questions

What is Hy-Cy? sorry for my ignorance

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…

From what I have read, it can be a treatment done for various autoimmune disorders such as MS and CIDP–not necessarily connected to having a stem cell transplant. Here is a little info that I copied.

“HICY” Drug Regimen Reverses MS Symptoms in Selected Patients
Release Date: 06/10/2008
New approach to immunosuppressant treatment tested in nine individuals shows promise

A short-term, very-high dose regimen of the immune-suppressing drug cyclophosphamide seems to slow progression of multiple sclerosis (MS) in most of a small group of patients studied and may even restore neurological function lost to the disease, Johns Hopkins researchers report. The findings in nine people, most of whom had failed all other treatments, suggest new ways to treat a disease that tends to progress relentlessly.

“We didn’t expect such a dramatic return of function,” says Douglas Kerr, M.D., Ph.D., associate professor of neurology at the Johns Hopkins University School of Medicine. “Although we’re very early in the game, we think this approach could be the linchpin of a significant advance for MS treatment.”

Researchers have used the so called HiCy treatments with some success at Johns Hopkins for a variety of other immune system disorders, including aplastic anemia, lupus and myasthenia gravis.

Cyclophosphamide kills immune-system cells but spares the bone marrow stem cells that make them. The usual method of delivering it in pulsed, small doses, however, can cause the drug to build up to toxic concentrations in patients’ bodies, causing a variety of side effects, including a greatly increased risk of infection.

Seeking an alternative way to use the drug, Kerr and his colleagues reasoned that HiCy might clear out the majority of a patient’s immune system in one fell swoop, then allow it to “reboot,” giving nerve cells a fresh start and an opportunity to repair themselves. In the current study, nine MS patients got a total single infusion of 200 milligrams per kilogram of cyclophosphamide intravenously over four days, a dose several times higher than that given in pulsed regimens but significantly lower than the total amount usually given patients over time.

Before treatment, Kerr says, the study participants were “the worst of the worst” among MS patients. Eight of the nine patients had failed conventional MS treatments, and several of them were wheelchair-bound.

Reporting in the June 9 Archives of Neurology, the Johns Hopkins team said the disease appeared to reverse course for seven of the nine patients over two years following treatments. Overall, the patients, men and women ranging in age from 20 to 47 at the beginning of the study, experienced a 40 percent reduction in scores of a standard test that measures disability. They also had an overall 87 percent improvement in scores on a composite test that measures physical and mental function.

[QUOTE=Pam H]Iassume you are talking about stem cell transplant, or the high dose cytoxan protocol? I hope Alice will see your post & tell 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…[/QUOTE]
Hi Pam,
Could you give a little synopsis of your journey with CIDP please? i.e. symptoms, age of onset, treatments tried. That is wonderful that it arrested your CIDP.
Laurel

Pam I read the myth thread and I think I got a good picture of your journey–so you can ignore the above request.
Laurel

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

Isolation. Wash your hands a ton. Get a proper air filter mask. As far as future inoculations wait and see what your body does and how your system reboots