Hello Everybody,
My aunt has sca 8. She was diagnosed by it about 6 years back and now she is in very bad state of it. Getting worse day by day. Its hereditary one. She is going for stem cell treatment from Beike biotech China. Does any body here has had this treatment? Can it really improve someones quality of life as they say. Please reply.
Thanks in advance.
I made inquires a few years ago for my wife who has AOA2 ataxia. I spoke at length with her neurologist whose specialty is ataxia. He told me it was a scam and if stem cells were working and it cured or helped with ataxia you wouldn't have to go to China for it. It would be happening in the USA. I also know of several people with ataxia (I know them from another ataxia internet site) who went to China, had the treatment which cost $35,000, thought they got better while there, returned home and shortly after slipped back to where they were. Its called the Placebo Effect. Sorry for this negative response but its what I know.
Dick
I don't know personally, but all I've ever heard from several sources is "scam".
In October of 2013 my fiancé looked into stem cell for his ataxia. The Beike company in China has a branch in India a “state of the art” facility. He went through the therapy to the tune of more than $30,000. With the stem cell they gave him daily therapy and acupuncture. It didn’t help. He told me that there were many people that came in with wheelchairs and they were told they would leave walking and they didn’t. We hoped that this would be the miracle we prayed for. It wasn’t.
As it happened the doctor that invented this process was there and Jeff heard him lecture. He was not impressed.
I hope you have better luck!
I had stem cell treatment done in 2012 in the USA to help with my (Sca2),I haven’t seen or felt any difference …everybody is different ,so it might work for someone else
It doesn't do anything but drain you of life savings. Please help her save that money.It cannot work for ataxia. There is mountains of evidence against and none for it All testimonials are done by the company before the patient leaves so they don't have a chance to really say how they are ashamed to have wasted their time and so much money. Many have come out worse than when they went in. There is no regulation. They can inject a person with anything. I have done surveys ande spoken to many who went and regretted it. If it was anything, thousands of us would be flocking and it woiuld be all over medical news.THIS DOES NOT WORK!!!!!!!!!
Thanks alot Jonas for your response but should I leave my aunt with no hope as she is very excited about it and wants to get the application procedure done asap. Can you give me any contact details of the patients you've contacted about this.
Thanks
Jonas Cepkauskas said:
It doesn't do anything but drain you of life savings. Please help her save that money.It cannot work for ataxia. There is mountains of evidence against and none for it All testimonials are done by the company before the patient leaves so they don't have a chance to really say how they are ashamed to have wasted their time and so much money. Many have come out worse than when they went in. There is no regulation. They can inject a person with anything. I have done surveys ande spoken to many who went and regretted it. If it was anything, thousands of us would be flocking and it woiuld be all over medical news.THIS DOES NOT WORK!!!!!!!!!
Thanks alot Barbie. Are you saying she should not go for it? Though she is very curious about her application and departure for the thialand branch. Also please tell me what type of ataxia your fiancé had? And how many injection he had, what type of cells injected and what was the duration of the stay? PLEASE REPLY
barbie said:
In October of 2013 my fiancé looked into stem cell for his ataxia. The Beike company in China has a branch in India a “state of the art” facility. He went through the therapy to the tune of more than $30,000. With the stem cell they gave him daily therapy and acupuncture. It didn’t help. He told me that there were many people that came in with wheelchairs and they were told they would leave walking and they didn’t. We hoped that this would be the miracle we prayed for. It wasn’t.
As it happened the doctor that invented this process was there and Jeff heard him lecture. He was not impressed.
I hope you have better luck!
I’m cautious about anything coming out of China having been there in 1999 before my Ataxia set in. However I have a friend who took her brother to China for stem cell therapy. I don’t know if it was through this company but will put you I. Touch with her to see. He is not better, but not worse either. He’s in a chair and has limited speech. He and I were diagnosed about the same time. I’m much luckier as I’m mobile and in much better shape. Email me at seascapes at mac dot com
I heard at the NAF Convention that stem cell treatments aren't there yet. It's a great idea but the cells have to be injected in the precise place and that's difficult to do, not only that but the stem cell molecule is too large. The Dr's and researchers said it's about 10 years away. If there daughter or son had ataxia they wouldn't put them through that. www.ataxia.org
Not to burst your aunt's bubble, but I also looked into stem cell therapy through the same company. Never went through with it, as there's no concrete evidence/research that it helps. I talked extensively with my neurologist, a specialist in ataxia and research. He said stem cell research is in it's infancy. Stem cells can't cross the blood/brain barrier at this time, with the way it's being injected in China (whatever that means...,ha!). I wish nothing but the best for your aunt if she spends thousands of dollars to go through with it! I was diagnosed with ataxia eleven years ago and it's progressed. I wish more than anything for a cure! This is just my opinion...;o)
I agree that stem cell therapy may offer hope in the future. I wouldn't want to participate in offering false hope.
I spoke to someone whose husband has/had MS. He underwent stem cell therapy in Montreux, Switzerland. (The withdrawal of stem cells was done in Tel Aviv.) This man's wife told me that after the procedure, he was significantly helped for four months. I know the dr. in Tel Aviv, who was/is a serious guy but I don't know more about this procedure. I was warned repeatedly against it, In fact, the dr. in TLV told me that most neurologists are against it.
Basically, there are several tests going on right now involving stem cell therapy aand various diseases. The American FDA is particularly slow in accomodating new procedures and I think Rick Perry, the govenor of Texas had stemcell therapy for something (he did this abroad) and came back a believer
My Neurologist had a hospital funded patient to check the benefits of stem cells on Ataxia.
They were to monitor the before and after progress themselves
The Chinese declined the patient and monitoring
Enjoy your $35,000 on something else