Old 09-18-2015, 04:22 PM #1 (permalink)
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Exclamation Stem cell of america

Hello All:
Today is my first day on the forum. My beautiful 61 year old sister was diagnosed with ALS on 7/1/15. We are still in shock as I'm sure all of you were when newly diagnosed. My family is desperately trying to find something to slow down the progression; my sister, Diane, has bulbar ALS. Her speech is slurred and her arms & legs on her right side are beginning to feel very heavy. She also has to be very careful when she eats because of choking. We are seriously contemplating Stem Cell of America located in Westlake Village CA. Because it is not FDA approved, the treatment takes place in Tijuana (10 minutes across the CA border) Has anybody received treatment from Stem Cell of America?
Please advise ASAP! We are tentatively scheduled to go next month.
Any help you can provide is greatly appreciated.
Thanks very much!
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Old 09-18-2015, 04:34 PM #2 (permalink)
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Default Re: Stem cell of america

Use the search feature in the blue bar above to find discussions on this. Also, google the company. Lots to be learned.
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Old 09-18-2015, 04:36 PM #3 (permalink)
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Default Re: Stem cell of america

I would not touch them with a ten foot pole. I think someone did try them unsuccessfully a couple of years ago. I don't think they post here any more.
The doctor who runs this is a psychiatrist, for a while he ran a weight loss clinic, he had his license taken away for a while by California, I think for unethical practices.
Here is an article about evaluating stem cell therapy places
How to Avoid Fraudulent Stem Cell Practitioners | ALS Worldwide
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Old 09-18-2015, 04:38 PM #4 (permalink)
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And I am desperately sorry about your sister.
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Old 09-18-2015, 05:47 PM #5 (permalink)
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Default Re: Stem cell of america

At this time the only treatment for ALS is Riluzole.

There are many 'possible' treatments such as cannabis, the Deanna Protocol, removing mercy fillings, and many more.

NONE are proven. Most are expensive and some are dangerous.

The stem cell clinic you mentioned is snake oil, pure and simple. If it worked you would see it heralded here loudly and often. There are valid stem cell trials ongoing, but this is NOT one of them.

One of our members went to China for stem cell treatment and I don't think we've heard from them since.

Before you throw money and hope into one of these treatments, check here and/or on ALStdi.
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Old 09-18-2015, 07:12 PM #6 (permalink)
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I'm so sorry for the diagnosis and can only agree - this is a waste of your sisters precious time left and of a large amount of money.

Put your efforts into anticipatory planning and filling her time with all the things she would most like to do.
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Old 09-18-2015, 10:19 PM #7 (permalink)
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Default Re: Stem cell of america

I'm sorry to hear about your sister. The only alternative treatment I would not discard from Greg's list is cannabis, for which use in ALS has been published in peer-reviewed medical journals. But do not let her waste her time, hope and money on an expensive con game.

Please also encourage her to join us here. While Greg is correct that there are no approved pharmaceuticals apart from riluzole, there are many strategies, such as diet, range of motion exercise, massage, the right bed and wheelchair, appropriate use of BiPAP, supplements and more that can optimize her health status over the course of her disease. It is very hard to separate the wheat from the chaff using Google. Anyway, we welcome you here.

Best,
Laurie
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Old 09-20-2015, 12:34 AM #8 (permalink)
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Default Re: Stem cell of america

> cannabis, for which use in ALS has been published in peer-reviewed medical journals.

Laurie, I would appreciate a pointer to any published info on mmj as I have been blindly following my own regimen.
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Old 09-20-2015, 12:51 AM #9 (permalink)
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I saw a lot of studies when I googled "which cannabinoid helps with als"
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Old 09-20-2015, 01:11 AM #10 (permalink)
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Default Re: Stem cell of america

Dr. Greg Carter has been the leading researcher in this area. Although not specific to ALS, he did an SCI presentation last year that probably has the most up to date info. Apart from that, here is the PubMed link to some abstracts.
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Old 09-20-2015, 01:14 AM #11 (permalink)
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Default Re: Stem cell of america

I was going to add the links later, but since it went to mod w/o them, let's try again...

SCI MMJ presentation by Dr. Greg Carter
PubMed links to his abstracts

He is the authority in this field in terms of ALS.
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Old 09-20-2015, 02:53 PM #12 (permalink)
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Default Re: Stem cell of america

Aarrrg. $36 to view full article.
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Old 09-24-2015, 12:56 AM #13 (permalink)
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Default Re: Stem cell of america

Sorry, Greg, but the SCI presentation is pretty complete -- and free. You could also e-mail him; he's first author on the 2010 ms so may have reprints of that paper available. Still, of the experiments cited, 1) that mouse model is obviously questionable and 2) without dosefinding, quality control drug and controlled human trials (good luck w/ that!), treating ALS w/ cannabis is based on cumulative clinical evidence -- his, yours, everyone else's. So not sure you're missing $36 worth.
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Old 09-24-2015, 10:03 AM #14 (permalink)
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Default Re: Stem cell of america

Also check ALSUntangled.com - Home for more information on cannabis, Deanna's protocol, and this snake oil salesman in Tijuana. I know this is frightening but throwing money at it when the treatments don't work can be dangerous. Good luck!
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Old 09-28-2015, 10:21 AM #15 (permalink)
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Default Re: Stem cell of america

Truly blessed, I'm so glad you found us before you went off to Tijuana. Even the name of the town sounds sketchy to me.
There have been many good tips for Diane instead of Stem Cell Fraud Man, she is very fortunate to have such a loving proactive sister!
God bless, Janelle x
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