Status
Not open for further replies.

mamaoftwo

Distinguished member
Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
First of all, people, Ive been here for a while now so you know I am NOT trying to sell anything. I genuinely want to know more about this. Bala's post got me googling. Anyway, I checked the scamwatch section on this forum and couldn't find anything about it. I also checked out chuck's site. No luck. SO here is my question - I came across a site called stemcellman. com. This guy and others claim to be slowing their disease progression or halting it with stem cell treatment at some clinic in Belize.
It all sounds rather scary to me. I mean how do these people even know they are getting injected with stem cells and if they are, do they know anything of their integrity? Would be a total bummer to go get treatment for ALS and end up with say cancer or HIV as a result.
At any rate, I am just curious. Does anyone know anything about it? Has anyone read about it? Opinions. (and I say that knowing that Al will probably be first to jump on this screaming "total BS, don't waste your time or money"). Thoughts anyone?
 
The only reason I would fly to Belize would be to spend some time on the spectacular beaches down there. San Pedro is absolutely beautiful. I spent a week in Belize (mainly Belize City) a number of years ago on a mission trip, and as much as I loved the people, I didn't see much that would encourage me to seek medical treatment there. Plus, I don't think that stem cell research has advanced far enough to produce that kind of result. If the claims were true, we would be hearing more about that than Heath Ledger, Britney Spears, or whatever other celebrity is in the news on any given day.
 
I looked over his site a couple months ago (my mom has ALS). It gave him temporary relief and he's gone back for a second treatment.
Several things come to mind:
*I believe it's terribly expensive.
*If it really, really worked, that doctor would be a rich and famous man.
*From the pictures, it doesn't look terribly sterile all the time.
*There is nothing governing where the stem cells come from, or if they are stem cells at all.
*At that facility, it looks as though you get careful, friendly, constant attention. The gentleman that has the website you refer to also has family with him. I know if I had that sort of love and treatment that I'd feel better to.
More power to those that are willing to risk it, but I am skeptical.
 
My husband has a friend who has a spinal cord injury due to an auto accident who went to China for stem cell treatment. Last night the friend gave my husband this website, www.stemcellschina.com. His blog is listed on the right side "Wayne's SCI Blog." Wayne told my husband they had met a man there who thought the treatment helped his ALS (see Drew's ALS Blog). I just looked at it quickly this morning and in the last post he says he is about to get a cane so to me it sounds like his illness is progressing.

Wayne (with SCI) is a smart guy and his wife is a physician's assistant, so I'm sure they really checked things out. BUT Wayne was in China in summer '07 and if there has been improvement it's not apparent. He tells my husband it helped so maybe it has. But there is also such a thing as cognitive dissonance. If a person has a big investment of time and money in something and the outcome doesn't match up to the expectation, he subconsciously makes it match by deceiving himself that the outcome was greater than it actually was.

Stem cells may hold the key to a cure for our illness, but at this point I know I wouldn't rush off to a foreign country for treatment.
 
I wasn't the first to jump in and you already seem to know my opinion so I'll just say again to any of these 'clinic's'. Show me a patient that has had more than 3-6 months verifiable progress and maybe I'll believe. It hasn't happened since 03 when I was diagnosed. I don't expect it to happen any time soon unfortunately.
AL.
 
I know you're probably right Al, I guess it just seemed so hopeful when very little else seems to be.
 
I know. It really stinks and I wish there was something that I could tell new people and us oldies here that would be encouraging. Outside of a few drug trials coming up, there is not a lot of good news out there. There are a lot of ways to spend money on unproven remedies and supplements that don't work but may help you feel better due in part to the placebo effect. They don't last long though. A few months at best. Some people think I'm negative but I'm a realist. If it sounds too good to be true well then it probably is. A lot of people have been burned and reported it here and other sites. All I ask is just don't shoot the messenger.
AL.
 
Please, I wasn't "shooting you". I was kind of laughing to myself as I wrote it because I knew what you'd say - based on past history. I know you are the voice of reason around here. Don't worry. We all feel (at least I think I can speak for all of us) that no matter what you say, you have our best interests at heart. I, for one, really appreciate that. :)
 
Must be getting old if I'm getting that predictable. LOL. Have a good day.
AL.
 
Scientific American Magazine, November 2007 had a 8 page very informative article called
Save Neurons Possible therapies for Lou Gehrig’s disease. (Pg.85) There where basically 5 potential therapies. (I quote)
Neurotropic factors (proteins such as vascular endothelial growth factor (VEGH) and Insulinlike growth factor 1 (IGE-1) appear to protect motor neurons
Small Molecules Compounds such as resveratol which is found in the skins of red grapes may be able to protect neurons by stimulating the production of nicotinamide adenine dinucleotide (NAD). one advantage of the small molecules id that they can pass thru the blood-brain barrier. (I will add one 8 oz. glass of red wine has 640 mg. of resveratol so yes I try to drink a glass ever night while the jury's out on that one! LOL!)
Stem Cell Grafted stem cells can act as biological pumps for delivering vital growth factors to damaged neurons. Experiments in rodents have shown that the stem cells can actually migrate to the regions where the injured neurons are located.
RNA Interference Synthetic strands of RNA can interfere with the production of toxic proteins in neurons and glial cells. The RNA strands bind to certain messenger RNAs (mobile carriers of genetic information) preventing them from manufacturing their corresponding proteins.
Physical Exercise Studies have shown that putting mice on a regiment of exercise on running wheels can slow the progress of ALS. Combining the exercise with the IGF-1 therapy has a synergistic effect that is more pronounced than that of either treatment alone.

It does go on to say “Turning any of these novel approaches into an effective therapy will be challenging.”

My only opinion (besides drink red wine) is Stem cell has possibilities , but we're not there yet.
 
I totally agree with you, Al. You couldn't have said it better!

Irma
 
stem cells

I have been wondering about stem cell transplants too. My cousin found an article about this neurologist person at Hadassah Hospital in Isreal who is doing stem cell transplants from bone marrow and claims it restores folks with ALS and MS. The doctors name is Dmtrius Karusis. I asked my doctor at Univ. of Va. about this process and he
says that the results of this process have not been published yet. I would do anything
to rid myself of this disease, but I will not travel out of the US to do it. Does anyone out there know of anything going on as far as stem cell theropy or clinical trials in the US?
Is there anyone out there from Virginia?
 
Status
Not open for further replies.
Back
Top