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kaden03

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Does anyone have any information on stem cell therapy with ALS patients? My family is looking to speak w/ someone who has had it, or a dr that performs it... any information/links to web sites that would help inform us. My grandmother was diagnosed in Feb of this year and she's deteriorating really fast. She has a lot of support and a positive outlook but its so hard seeing things get worse. She was walking one month and barely able to stand on her own the next. We live far from any major cities/hospitals and there isn't much going on up here for support groups, walks, organizations etc. The info we have received from her Dr is very limited.
Anyways, I wish the best of luck to all of you out there living with this or who have loved ones who are. It isn't easy and you are in my thoughts. Kris
 

MtPockets

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Sorry, stem cell treatment does not work.

I think you will find plenty of discussions about this if you use the search feature above. From all those I know of who have tried this, all they gotten from the procedure is poorer.

There is no treatment or cure for ALS. Stem Cell Treatment is a scam. Maybe one day it will help, but right now it is not effective.
 

kaden03

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Do you know anyone who has tried it? Not just over the web but personally? I spoke to a man from Washington Maine who had it done 3 mos ago. He spoke positively about it but it's still so early. I'd really like to speak w/ more people who have gone through the treatment. Whether the experience was good or bad... just for some real perspective on what it actually does and doesn't do.
I appreciate your honesty Mtpockets.
 

Al

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You will have trouble finding people to talk to because of a couple of reasons. First people don't like to admit they've been duped into spending 30 to 100 thousand dollars for an operation in a 3rd world country where they wouldn't even drink the water. Second , I don't recall seeing anyone on this or any other forum that has had a benefit longer than 3 months. Thirdly these clinics don't want you talking to patients saying it violates doctor patient confidentiality. Of course they don't want you talking, because it doesn't work.
AL.
 

kaden03

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Doesn't sound too positive.
I appreciate your opinion and advice. I'll make sure to let you know how it swings either way. I won't be one of the embarrassed ones who hides for spending a lot of money-regardless of how it goes I'll let you know. Thanks for the info!
 

andyvaughn

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Kaden, there was a gentleman who talked extensively about stem cell treatments, if you search under "stem cell man" you should find his web site. He has passed away, but you can find more info there. Also in the recently released documentary "indestructible" there is some talk about stem cell treatments. I also haven't heard anything about anyone having lasting postive effect from stem cell therapy, but if I had an extra 30K to spend I would probably encourage my husband to try it, maybe the old adage "desperate people do desperate things" is true, but it is always nice to have some form of hope?
Andrea - wife of Pals Jim
 

hopingforthebest

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stem cell

Dear Kaden

I am so sorry about your grandmother's rapid progression with ALS. It is such an awful disease that we are all desperate to help our loved ones.

Recently a kind neighbor of ours had told me about a gentleman from Maine that had the stem cells a few years ago and was doing great when she had last spoke with him two yrs ago. She sent him an email and was so eager when she called me to tell me she was at her computer and looks like a reply back from him to ask how he is doing and if I could email him about his treatment, as my husband has ALS and is progressing and is having breathing problems.

She cried as she read the email, as it was from his son, telling her "he fought a good fight" with having the stem cell but passed away. We had an appointment at our ALS clinic and told our doctor about this man and that he had gone to an island for this treatment and we read great things on his web page after the stemcell. Our doctor knew about the man that is offering hope to ALS patients. He said this man who does not have a medical background is getting stemcells from umblical cord blood donated from woman after giving birth to their babies. The horrible part was that this man was originally charging $10,000 but now is up to $100,000 AND WAS NOT TYPE MATCHING FOR BLOOD MATCHES. Our doctor said that there is a special place in hell for this man giving people hope that did not exist and making promises of cures.

Be very careful about those that promise things and ask for large amounts of money and you need to travel to an island.

We are all praying for hope, for a cure but hope that all of us can obtain without risking our loved ones lives to these wolfs disguised as lambs.

Love your grandmother and spend as much quality time with her.

Patty
 

cadreamer

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stem cell therapy in the cayman islands

Thanks for the information about stem cell therapy. My husband was considering traveling to the cayman islands for this $28,000 treatment. The company is Stem Cell Biotherapy (they advertise success for ALS on their website). It was recently announced on the front page of the Cayman Island's newspaper

I think everyone thinks that it is still too early to see any success in stem cell therapy. Not sure if that has to do with the fact that they are using umbilical cord versus fetal stem cells.

Thanks again, we really wish it was more promising too.

Terry
 

MtPockets

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"The ALS Foundation has also investigated the Cell Therapy Clinic by talking with a staff physician, sending a detailed follow-up questionnaire, and talking with several former patients."

You can read their report and findings at:
http://www.quackwatch.com/06ResearchProjects/stemcell.html

I think the name of the site says it all, (QUACKWATCH).

I am sorry, I wish this treatment did work for the sake of all of us.
 
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dbw

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Messages
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CALS
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I took my Father (PALS) for stem cell therapy in China last November. Based on the experience and my observation, the stem cell therapy is a very promising approach but has a long way to go to cure ALS. After the therapy, my Father had some improvement on his chewing and swallowing capability for about a month. He could eat normal food for only about a month after he came back from the therapy. Then, everything went back to its old progression track. I met a couple of other ALS patients there. All of their improvement didn't last very long either.
 

MtPockets

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For the benefit of those who are not familiar with this form of treatment, would you be willing to list the total cost of such a procedure?

I look at things from a cost to benefit ratio. It seems your benefit end of the deal was not very good. I am sorry.
 

dbw

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I don't remember the exact cost amount right now. Please give me some time to look it up. As to the cost to benefit ratio, the low benefit could not be justified by the high cost. It doesn't worth it, at least for us. You need also take the long hours flight into the consideration. It was pretty hard for my father. That is why we never went back.
I also want to make it clear that it was "stem cell" extracted from human umbilical cord blood by a Chinese company called BeiKe. It was not real embryonic stem cell.
 

Al

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Posts with links sometimes do not show immediately because they go into the moderation area where it is determined if it is Spam. This may take a few minutes or few hours depending on the time of day.
AL.
 

cajuntexusa

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PALS
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04/2008
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Thanks Al. It is good to know that they watch this site I do not normally post links but I thought this one was well worth the notice.

Regards,
 
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