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AfraidButNotAlone

Senior member
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Jul 27, 2013
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538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
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Atlanta
I heard a podcast today with an Anglican priest who stated that he had received stem cell therapy in Baghdad and while he is not cured, he feels as good as he has ever felt. Also that they have treated over 3700 people with an 80% success rate. The patients are MS, ALS, and MD sufferers.

Has anybody else heard of this?
 
I just googled it. The good canon has MS which can have spontaneous remissions. I am skeptical that they can extract that many stem cells from blood. Also these are hemopoetic stem cells not neural which also makes me wonder.
 
I also followed up on the latest stem cell work at u of m yesterday and it may be promising but it is also a one-way street for the immune system :-(. too big a risk.
 
During the podcast he had said that they have treated ALS and MD patients as well.

What do you mean by a one-way-street?
 
I am a skeptic because 1 I have seen a lot of pseudo-scientific treatments that are scams ( yes I know this is supposedly free but there are also misguided well meaning folk. 2 while I give the canon the benefit of the doubt that he is what he says he is there are no scientific reports data etc. if this is truly improving ALS why is this doctor not sharing this with the ALS medical community? Where are these improved ALS patients. 3 it does not seem medically logical to me from what is reported on the web.

Sadly ALS patients have spent a lot of money time and energy pursuing things that turn out to be useless or worse harmful

Not sure what Max meant if you get stem cells from other than self it is immunosuppression for life. Also once you have had stem cell or genetic treatments you are often disqualified from further trials in that area and most trials won't take you if you have had recent experimental treatment of any sort ( length depends on what it was)

This is a tough road and given the unfortunate course for many there are not a lot of do overs. A lot of trials disqualify you 24 months after symptom onset unfair as this seems. It behooves everyone to have a foggy memory for symptom onset

I hope I am wrong and this is a miracle truly but I hate to see people waste time on false hope and risk complications that could shorten their lives
Best Nikki
 
He said that it is not a one off treatment. Treatment need to be done every 3 months.
 
I found one chinese stem cell site last year which boasted a cure for ALS (& every disease known to man). For a tidy sum, I too would be cured. But that's not all, I also learned that ALS is caused by stress and too much sex. Ahem, this surprised me; I've always believed that sex is a pretty good antidote to stress.

Seriously, I'm not at all knowledgeable of science and medicine, but I believe if there exists a cure... We'd all know about it, and this forum would shut down due to lack of interest. I'm all for trials, but I'm saddened for those PALS rushing to far off places, at great expense (physically, emotionally & financially) and risk, simply because they are vulnerable to unscrupulous snake oil salesmen.

This is not to say I'm not hopeful for a cure. I sure as heck am! When there is one, I'll be right there in line at the airline ticket counter.
 
At least this seems to be free of charge and does not purport to be a cure all. I am skeptical, but hopeful
 
Check ALS untangled, a group of neurologists debunking all of the snake oil salesman. The extraction of stem cells is a very laborious and precise business, just as the guys at Emory and the University of Michigan. That's were the only 2 legitimate stem cell trials are underway. The number of people who will help you for large sums of money is astounding. Their results are not.
Hollister
 
I've looked. But this, again, seems to be fee. I could be mistaken and overly hopeful.
 
Usually when something sounds too good to be true, it is a hoax.

The chiropractor I was going to for my back said if only my wife tried his 'natural" remedy, not only would her ALS quit progressing, it would reverse it back to the day she first had symptoms.

I told him she was in bed 2/7 and paralyzed from ALS.

He stated calmly she soon would ne walking if only she went on his " natural" nutrients.

I told him off and found a new chiropractor !
 
Whenever someone tells me they have an amazing treatment for ALS I ask for testimonials and with each testimonial I want the name of the neurologist and date diagnosed with ALS.

That usually results in silence on their part.
 
I don't want to be Debbie downer, but really have to be careful. You are vulnerable to scam artist who prey on sick and terminally ill people looking for a miracle. My husband and I spent thousands of dollars trying out all kinds of natural remedies. crazy stuff...but it sounded good when we were desperate. not saying give up, but Stem cells...I would trust the Israel program and the trials here in the US only. Lot of people here feel that supplements help them--there are threads on the Deanna protocol here read some of them. Coconut oil too.

I just say walk don't run from anyone who says "cure" or reverse. If it was so--it would be well known!
 
It did say free at least for the locals. This may not be a scam but as I said above may be misguided. If they have treated so many successfully why is it not reported in scientific journals? I do not want to crush hope. I think there is hope but perhaps not from untested anecdotal treatments. Before I bought my ticket there I would need to see some solid evidence

Afraid you are returning to the US in a couple of months? If you have not already done so start looking at the clinical trials. Maybe contact the coordinators. You do not have to be referred from your clinic. If I were SALS I would look at GM and CK trials. Brainstorm if it ever gets to US. Think Mayo stem cells are already filling and gather it is against your belief anyway. Also you should think about testing for c9 and possibly sod1 defects. C9 occurs in about 12 percent of SALS and treatment for both is expected in less than a year

Take care
Nikki
 
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