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Ecowarrior

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My father has ALS, he can no longer talk and he is beginning to have problems with breathing. We haven't had very much luck with doctors. My parents feel so alone.
Just this week my father found a web site about stem cell therapy in Costa Rica. Supposedly this therapy prolongs life and won't repair the damage thats already been done. My mother contacted the doctor and set up for this to take place in April. My concern is what are the risks in doing this? Does anyone know of anyone that has had this procedure done? Does anyone have any insight or information about this they can share. If this is something that can be a break through or is helping it seems like we would be hearing more about this. I am very worried about him doing this, I am also very hopeful this may change things for the better.
 

mlb

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Hi Eco,

What sort of stem cell therapy is it? Can you find out some details?

A.
 

liz

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Ecowarrior -

What postings I have read from people who tried things like this have always ended with them having regretted their decision. I would think if there was a major break through in stem cell therapy all of the ALS Clinics would be on top of it. I wonder how the stress of the travel will effect your dad. I know the FDA can be slow, but it should give one pause....

Liz
 

Ecowarrior

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mlb said:
Hi Eco,

What sort of stem cell therapy is it? Can you find out some details?

A.
I'm not real sure what it's all about but he's pretty excited about it. The cost is $14,000 and he'll be there 10 days. There is a web site I visited that has video about the therapy(different Co.same therapy). I'm very sceptical about it but, having some kind of hope is better than waiting to die. (that sounds creepy!:twisted: )Here is the web address for a Co. based in Florida that does therapy in the Ukraine. I'll find out more details and post them.
 
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liz

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I really can't believe I'm saying this , but what has he got to lose? If he can spare the cash, i hear a vacation in Coata Rica is to die for. The price you mention sounds like an expensive vacation to me. Is that a waste of money? That's for all of you to decide. I've head Costa Rica is a great destination. Me personally, I'd go without any expectation of a cure. Sounds like a lovely vacation.

Liz
 

mlb

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Hi Eco,

I had a look at the internet site. It mentions that the transplant is suitable, amongst others, for diseases of the nervous system but does not specifically mention ALS. There are quite a number of diseases that affect the nervous system and it would have helped if they were more specific.

I am curious because my brother had a similar operation except that he went to Beijing (China) two years ago to have his done.

You just don't know what to say or do in such circumstances. There is a possibility that the transplant may not work but on the other hand what if it works? If it was your own life, you would want to try anything to save it. There is no doubt however that the future (near or far) lies in stem cell therapy.

Is your father's condition deteriorating at a rapid state? How long is it since he was diagnosed?

A.
 

Al

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Some might think I am negative but I think your money would be better spent on the trip to Costa Rica and forget about the stem cell transplant. We have had one person here go there and while there was a small improvement at first it did not cure anything and how do you know if it helped? There is a lady here in Toronto that recently went to China amid much fanfare both going and coming back. She had a blog, links to the website and all sorts of publicity and you can't find any information about her anywhere. Obviously it didn't work and no one wants to say. Any of the other people that have been to China or Europe have not had long term good effects. I think stem cells may be the way of the future but not yet. If I recall we did address the issue of the clinic in Costa Rica last year and there was some concern about the credentials of the doctors there. I would be asking a whole lot of questions before putting down any money and remember that in most foreign countries if something does go wrong you are on your own.
AL.
 

Al

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By the way if you use the search feature and type in Costa Rica and click on the topic does anyone know of stem cell research you can read what was said last year.
AL.
 

Meg1

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One of the cruelest things about this disease is that the average 3-to-5-year survival figures offer a great opportunity for scam artists to take advantage of new sufferers with little risk that previous victims of their scams wil out them. No, South American stem cell transplants aren't going to help. Neither will Chinese olfactory cells. Or IV antibiotics. Or Lutimax, or removing amalgam fillings, or Rife machines or any of 100 other things that have been tried for years by desperate and dying people.

When the cure arrives, no one will have to discover it on obscure websites describing shady procedures performed in third world countries. The severe and progressive symptoms of ALS will make it immediately obvious when a real treatment is discovered and a Nobel prize for medicine will not be far behind.

But the trip to Central America sounds like a wonderful idea--just drop the pricey and no doubt dangerous stem cell operation and have a great time.
 

emjoi

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What's the worst that can happen?
Your dad is a sick weakened guy, and he is about to undergo Surgery or Drug Therapy or whatever the Cure involves.

The poor guy is already suffering, both physically and emotionally. To me, it feels like throwing some more pain onto the fire.

At least research it a bit. Get the name of the place, the names of doctors, the names of people they have Cured. Make some phone calls. If they really have a cure involving something as advanced as Stem Cells, then someone should know who they are.

If you were going to spend 14 Grand on anything else, like a car, you'd do a bit of research first.

Be doubly careful of people who claim "We Cure Everything!". It doesn't work that way.
 

lunarruna

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Search by treatment "stem cell transplant' you will see there are 5 people there and you can email them, and/or search the discussion forum for their experiences..also 3 people had 'stem cell--umbilical cord' as a treatment...I dont know anything about stem cell therapy, but the PLM website is great for finding out more about treatments...I encourage all PALS and their CALS to join...its a real treasure and you canuse it to track your own progression and treatments.
Beth CALS to husband Shannon, diagnoseded 8/04 at age 40
 
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hazel

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Stem Cell Doctor

My father has ALS, he can no longer talk and he is beginning to have problems with breathing. We haven't had very much luck with doctors. My parents feel so alone.
Just this week my father found a web site about stem cell therapy in Costa Rica. Supposedly this therapy prolongs life and won't repair the damage thats already been done. My mother contacted the doctor and set up for this to take place in April. My concern is what are the risks in doing this? Does anyone know of anyone that has had this procedure done? Does anyone have any insight or information about this they can share. If this is something that can be a break through or is helping it seems like we would be hearing more about this. I am very worried about him doing this, I am also very hopeful this may change things for the better.

Hi, my name is Hazel and I have a son with type 1 diabetes and Neuropathy. Conventional treatments, both in the US & CR do not seem to work. We would like to get him involved in this new stem cell program in Costa Rica. This is where we are from and according to the info on the web site, I think he would be a good candidate.

Unfortunately, we have not started so I don't have any answers to your questions, other than what you've already discovered at the web site. All I can say is that a friend of ours recommended the treatment because her son has a similar condition and has responded very well in a short amount of time.

We're planning a trip to CR at the end of the month and hope to start treatment then but don't know where to go. Can you give me the contact info for the doctor your mother contacted? Any direction would be greatly appreciated. If we begin treatment and I have some answers for you before April, I will definitely contact you. I can even research your questions while I am there and maybe help you get the answers you need. Thank you for any assistance you provide and let me know if I can help in any way.
 

Jennifer51

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I agree with Al and Meg1.
I really WANT stem cell treatment as I think it WILL be the answer. We are collecting cord blood from two soon to be born grandchildren with the hope we may be able to use it...BUT...it seems to me it is not an option YET...There was an article in the Telegraph, one of Englands most respected newspapers about an indian lady doctor who is doing it. A british lady, with ALS went to her to have it done...so far no improvement and then they say to make it work you have to have multiple treatments.! even more money on an unproven proceedure. It has been proved to work with some problems (in reputable non fee hospitals in the UK) but so far NOT with ALS
I am in contact with a london hospital with reputable staff who are looking for the answer through stem cell treatment...my mnd neuro thinks it WILL be possible, but the time is not now...who knows when the breakthrough will come. I just hope it is soon and when it does we will all know about it...it WILL make headlines.
 

Al

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Hello Hazel. You probably didn't notice that this thread is almost 2 years old. The starter of the thread never posted again. This leads me to a few possible conclusions. One- the stem cells didn't work ie. no improvement. Two- the father died either from ALS or from infection which is quite common in these type procedures. We are talking third world countries here. Three- we made him mad because we had nothing good to say about the process in any third world clinic. They do have lovely web sites. My son designs websites. People give him pictures and he puts them together and it looks like a fine place. See what you get when you get there. Pay me enough and I'll give you testimony that I saw aliens in my backyard last night. If it did any good ANY , he would have been back rubbing our noses in it. Almost 5 years here and no one has rubbed my nose in it. Save your money.

AL.
 

Al

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By the way Hazel I am being brutally honest with you. I hope you're not offended. One of the good things about this site is the people here. Honest, caring and no false hopes. We support everyone but with the truth as we see it.

AL.
 
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