Got it done - Dr. Slavin's Protocol

Discuss stem cells, adult and embryonic, and their therapeutic potential for MS here.

Postby Iskierka » Thu Jan 28, 2010 12:23 pm

And it works?
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Postby youbetcha » Fri Jan 29, 2010 1:49 pm

Well, I haven't done the infusion part yet, just the aspiration. I'm waiting to hear from Orit in regards to when I'm supposed to go to Greece.

From my understanding, this procedure is more successful for newer diagnosed MSer's as there's presumably less damage/no permanent damage yet. Having said that, I have read posts about people with SPMS who have also had success with this procedure. The outcome is quite individual.
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Postby ariehs » Thu Feb 04, 2010 12:00 am

When I first met Dr Slavin this past summer, he hadn't yet had an MS patient who was a early-on as I. I was newly diagnosed, and had only very minor symptoms so far.

Hell, by the time I got the treatment - and that took a while - I still hadn't progressed much further. It wasn't exactly a long time, and LDNs were slowing things down.

Now I'm 7 weeks post infusion, and I am starting to notice SERIOUS changes. Tingling and in my left hand, which have been constant for more than a year - since before my diagnosis - are not gone, but much less. I can feel where the fingers are again, without looking, and when I touch things, I feel them almost normally. This has been my most constant symptom, and it is gone.

I don't itch in that arm, or in my neck, anymore. That itch would come and go sporadically, but I haven't felt it at all since Greece.

My balance is not back to normal, but I am working on it (Yoga classes, Wii Fit games, physiotherapy, Kickboxing) and I am confident of getting it back.

Speaking fo all those activities - my fatigue is gone. For years before I was diagnosed I lacked motivation and had to will myself to do those sorts of things, often failing. Now I am trying classes and sticking to them, getting my work done EARLY like I always wanted to, and exercising constantly.

I also don't overheat anymore. I break a sweat and just keep going. I've even started to take hot showers again. Not just hot, but when I'm sore from a workout, I stand under scalding water to relax the muscles... and then I go out and I am full of energy!

In the last 7 weeks I was beginning to become pessimistic about the results of the infusion - it seemed nothing was happening. Then I started to notice these things slowly, and I didn't say anything about them to anyone because I wasn't CERTAIN. I am sure, now.

Not all my symptoms are gone - there's still some tingling in my hand, and when I push myself or get stressed my spasming returns a bit, and I wake up with headaches a lot of mornings, etc - but the changes are outstanding! I can't wait for my 3 month MRI!

My biggest fear now is another relapse. As I understand it, relapses stop for 3 to 5 years after an infusion, but that doesn't stop me from worrying. Things are going amazingly well, so I'm watching for that other shoe.
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Postby ariehs » Thu Feb 04, 2010 12:05 am

Iskierka wrote:I think about tretments for all the the time, and about stem cells procedure in Germany. Why did you do proderu in Greece, is there higher level of procedure? Maybe you have just closer?


I did it in Greece because that's where Dr. Slavin's team work their magic. I was lucky to have been living in Israel - where he works - when I was diagnosed, so I was able to meet with him right away, but that wasn't why I chose him. No one has been treating people with stem cells for as long as he has, and no one else has his expertise. According to many sources, the doctors in Germany are the next best, after Dr Slavin, and I have no doubt that they are excellent, but everything I've read puts Slavin at the absolute top of the list.

I'm also Canadian, and Slavin has received a lot of very positive press here, as well, and is involved in two stem cell studies going on here. One with chemotherapy, and one without.
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Postby youbetcha » Fri Feb 05, 2010 2:18 pm

I believe the wait time between aspiration and infusion is now a little over 4 months.

Does anyone know any different?
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Postby ariehs » Fri Feb 05, 2010 3:51 pm

Drs Slavin and Gesundheit at the CTCI in Tel Aviv told me that it would be between 6 and 8 weeks. The infusion WAS ready at that point, but Israeli-Turkish politics got in the way, and the fires in Athens in August also hindered things. I should have only waited 8 weeks or less, but it ended up being 6 months.
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Postby youbetcha » Fri Feb 05, 2010 5:05 pm

WOW ariehs, that's quite a long time. It sounds like it was worth the wait though. Well, I sent an e-mail to Orit asking her what the "wait" time is and hopefully she will get back to me.

Thanks!
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Postby ariehs » Fri Feb 05, 2010 6:34 pm

Sometimes Orit replies quickly, and sometimes not. It depends on how good the news she has is. I recommend calling her cell phone repeatedly until you get her if she doesn't answer your email quickly.

Remember, work days in Israel are Sunday through Friday, though Friday is a half-day at best. Israel is GMT+5, or 7 hours ahead of the North American east coast time zone.
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Postby youbetcha » Sat Feb 06, 2010 10:06 am

That sounds like a good idea. I will try calling her on Monday.

I don't mind that it will take longer than I expected as long as I'm aware that they're behind, instead of thinking that I will be headed to Greece in March.

Thanks!
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Inusion Date

Postby youbetcha » Sun Feb 07, 2010 3:03 pm

Well, no need to call Orit as I received an e-mail from her, giving me a March 9th infusion date.

I'm both nervous and anxious about the procedure.....
Last edited by youbetcha on Mon Feb 08, 2010 8:33 am, edited 1 time in total.
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Postby Momrn » Sun Feb 07, 2010 8:55 pm

Hi, I am new to this forum and was excietd to find it, as I have obtained most of my information from a different forum. I love reading all your stories and get so excited to hear about the progress by all. Just thought I would share our experience.

My daughter Janice age 25, was diagnosed with RRMS in March 2009. She has numerous lesions and started taking Tysabri Sept. 2009. In Oct. we went to Tel Aviv and had bone marrow extraction, then Jan. 14, 2010 she had the stem cell infusion in Athens.

She is now three weeks post infusion and as of yet, there is no change although per Prof. Slavin it is still too soon. Her current symptoms include numbness to her left hand, and some numbness to both feet, and fatigue. She is extremely active, participating in marathons and triathalons.

I started a blog of our experience if you would like to follow. I added a link to my homepage. (hope it works).

Good luck to everyone with their journeys. I can't wait to read about each ones experiences.

Melinda
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Postby ariehs » Mon Feb 08, 2010 7:48 am

Melinda,

don't be discouraged! When I got the infusion, I stopped taking LDNs, and for a couple of weeks things got WORSE. When things did start to get better in the last few weeks I didn't notice it right away, and even when I did it took time to be sure. Only now am I seeing how huge these improvements are.
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Postby mshusband » Mon Feb 08, 2010 8:04 am

Ariehs ... I sent you a PM ...
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Postby youbetcha » Tue Feb 16, 2010 1:20 pm

Ariehs, are you following any specific diet? I don't recall Prof. Slavin mentioning foods to avoid or maybe is this something they will talk about at infusion time?
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Postby ariehs » Tue Feb 16, 2010 2:08 pm

I have been keeping to the "MS Recovery Diet", figuring that doing so can do me no harm. I have seen a pattern between eating certain foods and certain minor symptoms, but I'm not really completely convinced.

Dr. Slavin is an expert in bone marrow and in cell therapy, NOT an MS specialist. He actually uses cell therapy to treat people with MS, ALS, and various sorts of cancer.

All to say that - no, for the sake of the cell therapy I am not on any special diet, nor do Drs. Slavin and Gesundheit promote or suggest one. I had to fast only for a few hours before the extraction, and then again for only a few hours before the infusion. That was all.
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