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PostPosted: Tue Aug 19, 2008 8:49 am 
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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

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Tue Aug 19, 2008 10:29 am 
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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...


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PostPosted: Tue Aug 19, 2008 1:50 pm 
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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

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Tue Aug 19, 2008 3:15 pm 
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Last edited by Lyon on Wed Jun 22, 2011 7:03 pm, edited 1 time in total.

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PostPosted: Fri Aug 22, 2008 12:11 am 
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http://www.israelnationalnews.com/News/News.aspx/100276


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PostPosted: Fri Aug 22, 2008 6:35 am 
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DIM wrote:
http://www.israelnationalnews.com/News/News.aspx/100276


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.

gwa


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PostPosted: Sun Aug 24, 2008 9:40 pm 
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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

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Husband dx RRMS 3/07
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dual stents placed 5/09
CCSVI in MS


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PostPosted: Mon Aug 25, 2008 5:43 am 
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Last edited by Lyon on Wed Jun 22, 2011 7:03 pm, edited 1 time in total.

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PostPosted: Tue Aug 26, 2008 11:51 pm 
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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.


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 Post subject: clinical trials
PostPosted: Thu Sep 25, 2008 12:06 pm 
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Have you visited this website:

http://clinicaltrials.gov/ct2/results?t ... +sclerosis

I have seen both mesenchymal & hematopoic (sorry for the misspelling!)
stem cell research. This one is complete:
http://clinicaltrials.gov/ct2/show/NCT0 ... is&rank=33

where first they got chemo then stem cells. Don't know the results...

It sounds great! The only one recruiting right now seems to be in England. Best of luck!


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PostPosted: Fri Oct 03, 2008 9:53 am 
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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 8O


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 Post subject: stem cells
PostPosted: Fri Oct 03, 2008 1:50 pm 
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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.)


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PostPosted: Sat Oct 04, 2008 10:55 am 
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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 8O

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!


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PostPosted: Sat Oct 04, 2008 6:33 pm 
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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. :D


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 Post subject: Re: stem cells
PostPosted: Sat Oct 04, 2008 8:44 pm 
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k6ristin wrote:
I'm posting my research experiences on the Campath forum and unfortunately have nothing good or uplifting to say right now.
Have you not had anything? or just not "amazing"? Have you noticed a change in relapses frequency or triggers?


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