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Topic Fetal Stem Cells for PD Go to previous topic Go to next topic Go to higher level

By parkinit On 2012.07.04 18:10
My spouse is desperate for some relief as he sees his PD progress. Consequently, my PWP believes that fetal stem cells may be the answer. There is a "doctor," who I personally believe is selling snake oil, offering to provide fetal stem cells outside of the U.S. This doctor makes some outrageous claims, which are frankly, unbelievable. He also claims that these stem cells can gravitate to the brain even though they are injected subcutaneously or intravenously. This is all he is allowed to do legally, because this doctor is a psychiatrist, not a neuro surgeon or neurologist. Even though my digging has found that this doctor has been evicted out of several countries and has run clinics under various names and treats patients from HIV to eating disorders to "everything" now - he claims pretty much every degenerative or fatal disease can be cured through fetal stem cells and claims a 96% success rate. Also, he has no clinical trials to back up his claims, just personal testimonies from "patients" who may or may not be paid employees of this unscrupulous man.

Of course, the logical person says, "yes, this is snake oil and how dare he prey and take advantage of those who are already in a desperate and emotional situation." Not so, with my spouse.

When the rubber meets the road, I will not support my PWP in making the long flight across the country to see this doctor. I can't seem to talk sense into my PWP.

Have any of you faced this and what do we do? I want to support my PWP, but I don't want to support these false hopes this "doctor" has placed in my PWP's heart.

By shakydog On 2012.07.05 01:08
If it sounds too good to be true, it usually is. I have no idea who the person is that would make such claims, but in more than 14 years of desperately seeking relief I have found no such treatment or cure. If your PWP wants to spend money to feel better he should buy lottery tickets. The odds are better. And he will feel just the same - like a fool.

Shaky

By lurkingforacure On 2012.07.05 23:11
First, there are places claiming this and the most famous one, Xcell in Germany, was placed into receivership by the German government...now it appears the $$$ people paid are gone and, well, here's a link to more, but you get the idea if you don't want to read the whole thing:

http://neurotalk.psychcentral.com/showthread.php?t=172461&highlight=xcell

Someone I know used to work in drug research and told me that in other countries, you have NO IDEA what they are putting in you. These places in other countries where regulations are much looser, such as China, you could be getting pig eye cells or broccoli DNA injected. I have researched this extensively and have yet to find substantiated claims of success. Sure, you may find one person raving about how they got their life back, but if this were really helping folks, it would be all over the internet. The only people talking about this are those who are hocking it.

Second, everyone should know that they have previously done fetal stem cell implants in Canada, this was YEARS ago. What happened? Well, people were better, temporarily. But they still had PD, it still progressed, and they still died. On autopsy, it was discovered that the implanted, new, healthy cells had succumbed to the same PD fate...so PD "spread" to the new healthy cells. This is why simply implanting new cells will never cure PD: the cause is still there (and currently unknown) and makes the implanted cells sick as well.

Case in point: Dennis Turner, who got his own stem cells put into his head here in the US around 2005, has not maintained his improvement, sad to say. I have heard that his PD has spread to the other side now and he has progressed like everyone else despite the autologous stem cell work he had done by Dr. Michael Levesque. Google him and his doctor for more.

Be very careful what you get into. We ordered some "aryuvedic" PD medicine from India, had to send a money order of several hundred dollars and pay a huge rate for shipping....the pills were unlabeled, crumbly globs of dark brown clumpy powder and some were light brown, came in these weird groups wrapped in paper with poorly written instructions for taking. After a few doses my husband couldn't do it anymore and told me they
"literally smelled like shit" (they did, sadly). Since no labels were provided (despite a request for them), we really had no idea what was in them! We didnt' take any more and I stuffed the pills in the box they came in up on his closet shelf. Months later we noticed a horrific smell coming from his closet and I went in there and found not one but TWO dead rats who had apparently gotten in to the pills, eaten some of them, and died. The pills were scattered all over the top shelf where they had been, and the box and paper wrappings gnawed open. Is this scary or what?

We are all so tempted to do anything that might help relieve the suffering. It still scares me to think what might have happened if we had kept taking those pills from India. What is sad is that so many are so willing to profit off of another's suffering, and even more egregious, without concern that they may actually make things worse. So be very careful.

By LOHENGR1N On 2012.07.05 23:42
parkinit, This is a tough one! Trying to reason with someone as desperate as your husband seems to be right now at this point is a tough order. Most logical arguments will not sink in. You'll have to be as direct and to the point as can be. Something along to line of look if this is true don't you think MJ Fox or Ali would have already gone to him and had his cure? With the money they have compared to us? Something that hits home quick and fast, something that makes sense to him. I know this sounds so simple compared to the many arguments that could be made but for now it might be enough to just jar him enough to say ..wow yeah you're right.I don't know if this will do the trick or help you any but it's worth a try. Take care best of luck and hang in there!

By lurkingforacure On 2012.07.06 09:09
The only thing I am aware of that they have found to help PD is exercise. I understand that a lot of PWP simply cannot do that, though. My husband forces, and I mean forces, himself to exercise and some days he just cannot, other days, he is able to will himself out the door.

There are things on the horizon and there is a lot of research going on. I keep telling my husband a cure will do him no good if he's not here to get it. We are trying to buy time until a cure or at least better treatment (read: something that will stop progression) comes out.

By parkinit On 2012.07.06 22:24
Lo -

Good ideas; thank you. Next time we talk about this I will pose those logical (and yes, simple) comments and questions.

I was asked by my PWP today if I would transport him as a last restore and I said that I just couldn't do it. I couldn't support this quack in his robbing people of their hard-earned money.

By karolinakitty On 2012.07.09 21:27
parknit...just saw your post....Not long ago I happen to find a story..maybe on NPR...not sure where an aAmerican doctor from Atlanta and 2 mexican doctors were doing some kinda of fetal cell therapy at this "clinic" in Mexico...the American doctor was arrested but disappeared after his bond hearing..and the clinic was supposed to be out of business..supposed to be....It turns out they were using fetal cells from abortions. The American doc did the abortions then sent the cells on to the docs in mexico.....It was about a year ago....someone had posted something on FB page about fetal cells and I did a google search and found that article...wish I had the link for you but couldn't find it again....I know that PDF is doing work on stem cells from the hand and they have already been doing that type of testing in the UK and Hungary......


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