October 19, 2009 at 11:42 am

when you pay out of pocket, they charge the patient a flat $100,000. that includes everything except your accommodations of course.

this particular clinical trial ends in april of 2010, i think. i’ve been meaning to ask the staff if they intend to continue it or start a new one– i will ask when i get a chance. but– seriously– the exact same protocol is being done in brazil for half the price. my doctor– the head of the program– dr. burt– works with the head of the program in brazil– they even co-publish re: their findings. and there are other places around the world doing it too– if you care to enter the world of medical tourism, that is. as far as when dr. burt’s findings get published and what the fda will do with a study that had 11 participants is another story– one that i have no answer for. but, the direction is good, albeit slow. for instance, dr. burt’s findings may inspire many other neurologists to initiate new protocols around the country– who knows… in closing, if i didn’t have the parents i have, hence the resources, i would have gone to brazil…


September 27, 2009 at 9:38 am

yes, sterility is a known possible side effect of cytoxan. from what i gather, the age of the patient and the amount administered are significant factors. he could save sperm now if it is a real concern…

my one blast of 3,400 mg of cytoxan has made me feel better than i have ever felt since having cidp… i will be posting on this subject after i get the drive replaced in my beloved mac, that decided to crash yesterday.:mad:

hug, a.


September 1, 2009 at 10:04 am

cytoxan is chemo– so when i go for my treatment, i will be given high dose cytoxan 1st, then be re-infused with my own stem cells. it is really the chemo part that is supposed to do the job of destroying the autoimmune cells, and good cells… the stem cell “rescue” as they call it, is to save your life from the high dose cytoxan they give you… there are some on this board– pam h. and jan b who have obtained remission from chemo alone– have a peak at their stories. what is special about my treatment is not the chemo part– its the stem cell re-infusion that quickly rebuilds a “healthy” immune system after its destruction from chemo…

hope this helps–