Any experience with stem cell therapy for Parkinson's disease?

[ysar]

Did anyone have experience (good or bad) with stem cell therapy for Parkinson's disease? There're clinics around the world (for example in Mexico) offering this treatment. Any recommendations? Thank you!

[Coletteflint]

whilst trials are ongoing and the research is looking good (see Professor Roger Barker and his work in Cambridge) currently NO STEM CELL THERAPY HAS BEEN SHOWN TO WORK IN PD and those offering it at exorbitant prices in poorly regulated jurisdictions are likely charlatans. Please beware.

[jimcaster in reply to Coletteflint]

Colette is exactly right. Anyone trying to charge you for stem cell therapy is a charlatan. There are currently legitimate trials being conducted in Japan, Sweden, England and the United States (Bayer/BlueRock and Aspen among others), but as promising as it appears, stem cell therapy is not available to the general public...yet.

[MarionP in reply to jimcaster]

Can't emphasize enough what you just said Jim.

[Civic407]

I was in a study in Texas at Hope Bioscience near Houston. There is no cost, but 50/50 shot that you get placebo. I think they are still recruiting.

[RonB1 in reply to Civic407]

What were the results? Did it work for you?

[djresd in reply to RonB1]

We have embarked on the stem cell road in the USE. Results are pending. Labeling all providers as charlatans is overkill but there are a lot of of unqualified opportunist who are not doing research and have not published results of research. There is strong evidence that stem cells will be a massive medical breakthrough in the next few years. Standing by and waiting for big Pharma and placebo based double blind studies will not help Parkinson’s patients who are at the back end of their disease process. This forum has discussed alternative treatments such as B1, lithium and others which have offered some hope for some patients but not for us. Stem cells properly sourced and prepared are very expensive to produce. We have been advised the results should not be expected in less than 2 to 3 months , if we find positive results, we will most certainly share them as soon as possible. We are somewhat resentful of the implication that we are suckers for Charlatans. Standing by and doing nothing while being reassured that help is coming in 7 to 10 years is not in our nature. We have done much research to find a provider who has done research and has published results and continues to do more research. He also has a solid medical reputation internationally. Stem cells at this point are not a cure but might be an expensive treatment that buys time. However, funding for large scale stemcell research is not easy to find. If it wasn’t for the foundations there would be no progress at all. Parkinson’s patients are still taking variations of drugs that were developed in the late 1960s. This is shameful. So we took a chance and we pray.

[Civic407 in reply to djresd]

I'm with you. Good luck, let us know how it goes.

[MarionP in reply to djresd]

Stem cells implantation is invasive, correct?

[Civic407 in reply to RonB1]

Didn't do much for me but I think I got placebo. Some of the other people that I talked to think they improved.

[RonB1 in reply to Civic407]

I'm in the clinical trial now ... I get an infusion next Wednesday.

[JayPwP in reply to RonB1]

All the best 👍

[MarionP in reply to RonB1]

Which clinical trial?

[RonB1 in reply to MarionP]

Hope Biosciences stem cell trial in Houston, TX

[RedTruck99 in reply to Civic407]

The Hope Bioscience FDA clinical trial that you and RonB1 are in is the real deal. The dose is 200 million (2 x 10^8) cells through IV, 6 infusions over a 32-weeks, for a total of 1.2 billion mesenchymal stem cells, These cells are taken from your own adipose tissue with a 1-time extraction and banked for life, then expanded in a lab to this very high dose whenever a dose is required. You can't get this from clinics selling "stem cells" because they don't have a million-dollar lab staffed by cell biologists. And no other stem cell trial has ever used this high dose. This trial is for Early and Moderate Parkinson's

Here is the clinical trial where you can see all of the PD outcome measurements they are tracking. hopebio.org/protocol?name=H...

The trial says it was completed April 2024 but it will take months for results publication.

FDA placebo controlled trial clinicaltrials.gov/study/NC...

I have a good understanding of this therapy because starting in 2012 I've had this treatment for aggressive MS from another FDA-monitored biotech in Houston that has a high-dose stem cell lab.

[jeffreyn in reply to RedTruck99]

"These cells are taken from your own adipose tissue with a 1-time extraction and banked for life ..."

This is correct for Hope Biosciences recently completed clinical trial NCT04928287, which used autologous MSCs.

clinicaltrials.gov/study/NC...

However, the trial that RonB1 et al. are on (NCT04995081) is using allogeneic ( i.e. donor derived) MSCs.

clinicaltrials.gov/study/NC...

[RedTruck99 in reply to jeffreyn]

Oh thank you! That's great, I hope the allogeneic works just as well, then no need for extraction and banking.

[RonB1 in reply to RedTruck99]

Personally, I prefer donor cells from a young, healthy person. I would assume our own blood cells, dna and genes have been compromised or altered due to Parkinsons disease.

[busters_dad]

What about the stem cell therapy Ed Bagley Jr. is promoting? I believe it targets the gut, not the brain. But he also says he's doing diet, glutathione, NAD, hyperbaric therapy.

[MarionP in reply to busters_dad]

It's an interesting idea but problem is one need to actual research or else one is simply gambling. And not with good odds, which means out of every hundred or try it maybe one benefit, maybe two benefit, there may be people just think there's a benefit and there really isn't, and nobody can say what caused it so you can't claim that anything caused it that you're selling or hawking or boostering.

When you have five variables (not including the chemical, it's supply, it's purity, it's safety, and whether it is what it's supposed to be and delivered as it's supposed to be and not neutralized in the gut and doesn't necessarily make it out of the gut, and no controls and no sampling and no actual diversity of patients, and no evidence as to whether it is a cause or a result of something), that is not evidence, that is just gambling because you happen to have the money and nothing better to do with it, and you need to be quite rich to take such risks. Actors!

So if you have three sources and nothing better to do or you feel that major benefit could accrue, and so it's worth it, try and report back.

Hopefully what you report will be able to be measured in some way, independence in some way, or what you should do is go find some people similarly and doubt with bucks and nothing better to do and a high degree of suffering, say 10 of you, and then see come back to us and let us know. If it really works it won't take that long to find out.

[RonB1 in reply to MarionP]

I believe the real gamble is to sit back and do nothing more than rely on medication, which is proven to only act as a band aid. Parkinson's is neurodegenerative, so that's why I am participating in the stem cell clinical trial. If I were to do nothing - I would be unhappy with myself for not taking action, while I still can.

[MarionP in reply to RonB1]

And I'm very happy and grateful that you will kindly report your results! Because I and probably many of our members are not in a position to do so for ourselves.

[RonB1 in reply to MarionP]

Yes, will do.

[Rabilo]

Ron81 how old are you and hiw did u get into Trial pls?

[gomelgo]

The trial is now full. I tried to get in, and almost did, but had an accident that prevented me from going to my first assessment. So I'm very keen on hearing how folks in it are faring as it goes along. I believe it's a year long.