Darrell

[jamorel]

I want to introduce you to Darrell - he was diagnosed in 2011 and is on bipap full time now. He has never been on this site and I have encouraged to come here. Darrell lives in Calgary (where I live) and I met Darrell because of ALS.
He and his friends asked for help as they have a lot to discover but dont know where to start. His facebook page is here - Darrellsjourney - Wall | Facebook and it would be great if you said hello.

The biggest thing and why I am posting is that he is looking into stem cell therapy. I read a few things that were positive by TedH5 and wondering if there is any more important info I should share with Darrell. Sorry, not meaning to sound lazy...I know I can search and go through all past threads, but with work, school and a three year old... I was hoping I could just ask and maybe you could give me a few tips to pass on to him.

hope you are all well
jodi

 

[Al]

There are stem cell trials going on in the U.S. right now. China, Mexico and other third world countries are rip offs.

AL.

 

[jamorel]

He is looking at Mexico and that is what I kinda thought, Al. I read TedH5's experience and wondering how I might get Darrell on that path rather than Mexico. I have heard of people going to these places and paying a fortune only to feel terrible. I dont want to dash his hopes...but perhaps try to weed the trees from the forest for him a bit. Thanks Al...will contact ALS Canada. Maybe they can give me a lead for him

 

[hjlindley]

The only one I am aware of is Emory in Atlanta and you must be a Georgia resident. There may also be one in France. But the others are correct...if it is not a teaching hospital you are familar with, it is probably a scam.

 

[jamorel]

ever heard of Dr. Steenblock? San Diego / Tijuana clinics?

 

[trfogey]

There was a legitimate stem cell trial being conducted at Hospital San Jose Tecnologico de Monterrey in Mexico a couple of years ago that a handful of folks from that other-website-we-don't-promote-here actually underwent. Of the three that I've kept track of, two were dead within a year from respiratory failure (neither of them could get adapted to BiPAP use when they needed it). The third one, who had the least progression at the time of implant, is still alive as of early November 2011 and progressing slowly (ALSFRS-R went from 45 to 40 In the two years after the procedure).

There are three important caveats to keep in mind about this particular trial. One, only one paper has been published concerning this trial. The ALSuntangled group reviewed this paper and found some serious methodological flaws with the portion of the trial described in the paper. More papers have been promised at various times in the past, but have not been delivered. The trial appears to have "dropped off the radar" as far as any discussion about it in the wider ALS/MND community is concerned.

Second, foreigners were admitted to that trial on an entirely different criteria than Mexican nationals -- one of which appeared to be a willingness to make a sizable cash "donation" to one of the entities involved. Third, the ALSFRS-R scores of the surviving patient at that other site are self-reported. I don't have any reason to disbelieve them, but they may not be accurate.

 

[HelenL]

jamorel and Darrell, welcome to our forum family... you already have some great info, and the only thing that I can add is that I believe there is a stem cell trial going on in Israel, and possibly Germany, but don't recall the details. Other than the Emory trial in Atlanta, there aren't any in the U.S. that I know of. And I think the Germany one may not be legit either.

Tell your PALS that he'd be much better off looking into legitimate trials rather than wasting his time and money on scams.

 

[jamorel]

Hello Helen. I have been here for awhile...I lost my best friend July 1st to ALS. Nice to meet you.
I am very cautious of all that is out there, having witnessed and stumbled across so much while Joy was going through this. I've learned important lessons, such as not to dampen hope, regardless of my personal thoughts. I get very angry when I come across the salesmen of hope that are out there, but then I have to check myself. What if just one of them is actually on to something?
For Darrell, I would like to try to get him into a program like TedH5 but as he is in Canada, he may not be able to. There was a trial here, but at the time when they were "recruiting" apparently his breathing was still "too good" (what ever that means). It isnt that good now but I think that trial is done. And again I feel a little anger toward the whole guinea pig tactic, and I have manage that. If you know of anything that he might be able to apply to, I would love to hear as I would like very much to have good news for him. At least hope of something.

 

[rcharlton]

ever heard of Dr. Steenblock? San Diego / Tijuana clinics?

There is simply no reliable evidence that these foreign stem cell treatment centres do anything other than line their pockets with money from desperate people.

Check this out.

A Skeptical Look at David Steenblock, D.O.

I also note that Darrell is undergoing treatment for lyme, another area fraught with scammers. I suppose a course of antibiotics is not troublesome but just be wary of health care providers offering a slew of expensive services not covered by your provincial coverage.

 

[jamorel]

Thank you...yes, Joy was treated for Lymes. Not good and quite a waste of time as she was told that she would still have ALS regardless. She quit the treatment early as it was too hard on her physically. I am skeptical of everyone in this field. i guess the one thing I have read that made me pause was Tedh's experience, but that is the only one I have heard that has had a positive response. I believe that all Joy bought was hope, and I guess that is something.