has anyone had one of these??

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has anyone had one of these??

Postby carolew » Wed May 13, 2009 5:12 pm

I am seriously thinking of heading to Germany to give it a try. Any advice from anyone?? this is the type where you don't receive all the chemotherapy and is all completed within a week.
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Postby scorpion » Thu May 14, 2009 4:29 am

Please read this info!! I think you need to get your neuro and doctor to weigh in as to their opinion. However the decision is ultimately yours and I wish you the best!!! I HOPE that if stem cell treatment is effective that in the next 2-4 years it will be offered in in the U.S. in a safe manner so that may be something else to think consider.


Toronto, Canada, December 4: Canadian researchers from the University of Alberta, Canada, said on Wednesday that costly and unproved stem cell therapies for various diseases are being sold directly on the internet to patients and doctors.

Beware of websites promoting stem cell therapies, experts warn
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In response, the International Society for Stem Cell Research (ISSCR) released guidelines for both scientists and regulators and has also developed a patient handbook for people considering stem cell therapy.

According to the guidelines, "The International Society for Stem Cell Research is very concerned that stem cell therapies are being sold around the world before they have been proven safe and effective."

The new study conducted by stem cell experts from the University of Alberta, Canada, found that through websites such clinics present treatments as safe and effective with no medical evidence to back up their assertions.

Researcher from Children's Hospital, Boston, George Daley, who contributed to the ISSCR guidelines, said, “I think these websites are dangerous. They overpromise effectiveness and safety of the therapy and under-inform about risks. Overhyped marketing direct to patients is putting patients at risk of financial exploitation at the very least, and physical danger at the worst.”

For the study, team led by Timothy Caulfield, looked at the 19 clinics in countries around the globe, including China (Beike Biotech), Russia and Mexico, where websites advertise expensive treatments costing about $21,500 (€16,600, £14,100). These treatments that infuse stem cells into the blood and brain are sold directly to consumers over the Internet.

The diseases being treated were multiple sclerosis (MS), Parkinson's, Alzheimer's diseases, spinal cord injuries, cerebral palsy [paralysis of a muscle or group of muscles] define, autism and muscular dystrophy. Study authors said that patients should be skeptical of these services and must talk to their doctors before pursuing such treatments.

Mr. Caulfield said that the stem cell treatments do hold great promise but many of the stem cell therapies offered by these clinics are not ready for use in patients yet.

ISSCR, representing professional stem cell experts, said, "Too often rogue clinics around the world exploit patients' hopes by offering unproven stem cell therapies, typically for large sums of money and without credible scientific rationale, oversight or patient protections.”
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Postby carolew » Thu May 14, 2009 6:09 am

HI Scorpion.Thanks for the advice.
I have talked to my neuro and she has another patient who already went this year but we have no feedback yet.
I read up on stem cells just now on the Myelin repair Foundation site. They have a very recent article that implies positive results.
In Germany, procedures are done under aseptic conditions. They would use my own bone marrow and no chemo before hand.
If I don't try it, I will always wonder ' what if'.
This is a large community of Msers, I thought someone may have done already.
We'll see, Carole
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Postby marcstck » Thu May 14, 2009 11:23 am

I've been told that the stem cell procedure being offered in Germany is basically a scam. The doctor running it supposedly has a checkered past...

Dr. Shimon Slavin in Israel is offering stem cell treatments that appear to be scientifically valid. Also, there is a group in Costa Rica that has treated many MS patients. You'll find their testimony on some of the other MS sites on the web.

Here's a thread discussing the procedure being done in Costa Rica:

http://www.msworld.org/forum/showthread.php?t=82897

And here's one regarding the procedure in Israel:

http://www.msworld.org/forum/showthread.php?t=90079

Personally, I'm looking at going to Israel for treatment in late summer/ early fall...
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Postby carolew » Thu May 14, 2009 8:35 pm

Cool, I have more research to do now on Israel.... Carole
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Postby flipflopper » Fri May 15, 2009 9:00 am

I have been looking into the stem cell treatment done Israel since last November

Carole, this was discussed briefly on this site after it was featured on the news http://www.ctv.ca/servlet/ArticleNews/s ... e=&no_ads=

Marc, thank you very muc h for your link from msworld regarding the stem cell treatment in Israel! I have not visited msworld in years but I found the link quite interesting.
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Postby carolew » Sat May 16, 2009 10:29 am

thank you very much Flip... I am still looking for the best site for the Israel techniques of stem cell transplants... does anybody have a good one?
thanks in advance. Carole
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Postby msmything » Sat May 16, 2009 4:35 pm

Carolew, I was just thinking the same thing, but not about germany...
there is a Dr. at Northwestern, here in Chicago,(way closer to Ontario),that does an autologous stem cell transplant without wiping out the pt. immune system.
They are acutally recruiting for a study, the contact is Kathleen Quigley, at 312 908 0059. it's in the MS Quarterly magazine.
The standard stem cell tx, with chemotherapy, I was warned against by my neurologist. His exact words were 'you wouldn't live through it'

My feeling is that I've been on 3 different immune modulators, and have continued having relapses, there's got to be something else!!
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Postby carolew » Sun May 17, 2009 7:45 am

thank you Msmything... you are right, it is closer but do they accept only the worse patients in this study? I will ask..
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Postby msmything » Sun May 17, 2009 8:29 am

Actually I think this study Does Not accept anyone with PP ms. They just want you to have failed interferon therapy...I definitely failed interferon..

This approach makes so much senseit's hard to find what is wrong with it. Someone I work with got a Stem cell transplant from this team she had MS and does not any longer...I'll have to pick her brain much more...she's kinda scary though..she's one of those people that will not accept that you won't agree with her...I don't know if she had immune ablation...I won't do that..too dangerous.
Also, she could afford to take a year off of work...Dunno..
I almost went to Dr. Cohen as a neuro at Northwestern, but he refuses to accept new pts. without all of your data from your previous Neuro. I was LEAVING my previous neuro, I did't want his conclusions to color a new guy's conclusions.
BTW Dr. Burt, who does the studies on autoimmune diseases at Northwestern is not a physician, he's Phd Dr of biology..
Please let me know what you find out
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Postby carolew » Sun May 17, 2009 9:40 am

Hello Msmything, I read up on NOrthwestern . They do treat the patient with some chemotherapy but not much.
I have not taken ant interferon so they would probably not accept me. I also dislike the fact that you get complications (not as severe) from the chemo they give you.
There are several sites that explain it well if you google: stem cell transplant, Chicago, multiple sclerosis (all these word together with the advanced search).
they also take much longer to give you back your cells because they also treat the cells before infusing them back to you. Therefore, the whole procedure takes a bit longer.
It's funny how your friend is... maybe the transplant made her better....
take care, Carole
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Postby marcstck » Sun May 17, 2009 8:15 pm

The stem cell therapy being trialed at Northwestern does indeed wipe out your immune system. They are using high-dose cyclophosphamide (Cytoxan) to ablate the patient's immune system before transplanting autologous derived stem cells.

If you read the exclusion criteria as listed in the multiple sclerosis quarterly, you'll see that they are concerned with cardiac function, because of the extremely high doses of Cytoxan they'll be using.

This therapy intends to reboot the immune system, and does not directly address the damage done to the central nervous system. This is why they are only accepting patients with inflammatory disease, as inflammation is a distinct sign of immune system involvement in the disease process...
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