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Joined: Sep 11, 2007 Posts: 667 Location: southern California
Posted: Tue Aug 19, 2008 9:49 am Post subject: Question re: stem cell therapies-
For those who understand these therapies...
It seems to me that it would be essential to stop or slow the immune process involved in MS first, before receiving a stem cell transplant- like the StonyBrook or Canadian trials. I read about folks going to Costa Rica or Taiwan and spending thousands of dollars in the hopes of "curing" their MS, but I wonder how this could be of any help, since the B and T cells will still go after the myelin.
Are these stem cell out-patient clinics just the latest trend in quackery and thievery...like those phillipino faith healers that stuck their hands in people and pulled out lumps of flesh during the 1980s...
or is there a way that injections of stem cells could be of any help to MS patients?
Here's the story that got me thinking....
stem cells in Costa Rica
anyone?
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
There have been studies that indicate that mesenchymal stem cells have immuno modulating properties. The Costa Rican clinic is using autologous mesenchymal stem cells derived from fat tissue, delivered intravenously, to modulate the immune system. They're also using umbilical cord stem cells, delivered intrathecally, in an attempt to repair damaged nerve cells.
Stem cell research is really gaining steam worldwide. Israel has become a hotbed for this research, and there is several studies going on in Britain.
The Costa Rican operation has been getting good anecdotal press accounts, but I'm still a bit wary.
I expect to see several US trials starting up within the next 6 to 10 months. I've heard there are several in queue waiting for FDA approval...
Joined: Sep 11, 2007 Posts: 667 Location: southern California
Posted: Tue Aug 19, 2008 2:50 pm Post subject:
Thanks so much, Marc-
I appreciate your knowledge. I'm still trying to wrap my brain around stem cells.
I have great hope for you and my husband and all afflicted with MS, and believe this is probably your best chance, but like you, I'm wary. Mesenchymal stem cells seem to be the most promising, since they are adult stem cells taken from the patient and wouldn't involve any rejection. And if they really can modulate the immune system too, without a chemo treatment first, it's a win-win.
Where do you think the trials would be happening in the US? Any sources you could recommend for inquiring minds?
Hope you're hanging in there-
best,
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Tue Aug 19, 2008 4:15 pm Post subject: Re: Question re: stem cell therapies-
cheerleader wrote:
Are these stem cell out-patient clinics just the latest trend in quackery and thievery...like those phillipino faith healers that stuck their hands in people and pulled out lumps of flesh during the 1980s...
or is there a way that injections of stem cells could be of any help to MS patients?
Hi AC,
Again, although both use the term "STEM CELLS" there is a huge difference between the conception of getting stem cells to damaged areas of the brain and convincing them to fix or create new neurons, and eliminating the old immune system in the hopes that the replacement immune system (from WHATEVER stem cell source) will have "forgotten" autoimmunity as part of the process
In regards to getting stem cells to damaged areas of the brain and convincing them to fix or create new neurons, so far it seems that if the results seem too good to be true, they are too good to be true. If the treatment is really expensive and is only performed in unregulated, undeveloped countries, there is good reason for that.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
There is no mention of the types of MS patient being studied. Would like to have seen if these patients are RRMS or if all types are included in the study.
Thanks for the post. It is good to know of any research going on around the globe that will possibly help us.
Joined: Sep 11, 2007 Posts: 667 Location: southern California
Posted: Sun Aug 24, 2008 10:40 pm Post subject:
thanks for the Israeli study, Dim. It was hard to read that Dr. Cohen has been working on this treatment since 1981...when he published his first article on the T cell vaccine. Research is moving too slowly for impatient me. Looks like they're working with people in the "early stage of the disease", GWA, but this could potentially help all, I'd think.
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Proffesor Dr Karousis (ex neighborhood in my father's house) that works in this team successfully inhibited more than 20 cases of MS here in Greece with stem cells (if my memory serves me right they called mesenchymal) but in one case that I know of the stem cells are from patient's brother rather from him as the first therapy with it's own stem cells was unsuccessfull.
I was remarkably affected from MS, almost bedriden, and now after a year from the therapy it walks.
Who knows what the future is in this field, my hopes are in "myelin repair foundation" findings.
I was going to try for the revimmune in Chicago at Rush. However, I'm now going to try the stem cell transplant at Northwestern in Chicago. The reason why- I'm just getting "over" a flare. Really bad one and really, really scared me. I feel that stem cell therapy is the answer-at least for now. I have a husband and son who I think or hope need me so I have to do what I can, at the very least, to stay in the condition that I am now. I hope that made sense. Dr appt Oct 28th
Posted: Fri Oct 03, 2008 2:50 pm Post subject: stem cells
Please Please post your experiences! I have friends outside of Chicago! I would try it too & will come running! (ok i can't run) But Good luck!
(I'm posting my research experiences on the Campath forum and unfortunately have nothing good or uplifting to say right now.)
Joined: Jun 08, 2008 Posts: 18 Location: Southern California
Posted: Sat Oct 04, 2008 11:55 am Post subject:
rusty2 wrote:
I was going to try for the revimmune in Chicago at Rush. However, I'm now going to try the stem cell transplant at Northwestern in Chicago. The reason why- I'm just getting "over" a flare. Really bad one and really, really scared me. I feel that stem cell therapy is the answer-at least for now. I have a husband and son who I think or hope need me so I have to do what I can, at the very least, to stay in the condition that I am now. I hope that made sense. Dr appt Oct 28th
I am looking into stmcells also. I have started Tysabri, 1 infusion, but have husband and 2 sons.--gotta do for them!! My typing/speech/handwriting gone--would not have minded in the past- haha.
I was born in Balt but now live in CA. Somethings gotta give????
I know I may not get back EVERYTHING,,,,, but something!
Yes, I will post what I can K6ristin. I'm going to see if I'm accepted, if it can be done soon, like this year as my husbands ins changes next year.
I hear ya ladystewart, got to do what we got to do.
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