Stem Cell therapy for PD: Does anyone know... - Cure Parkinson's

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Stem Cell therapy for PD

Rafiki2 profile image
49 Replies

Does anyone know of any positive results for treating PD with the use of Stem Cell therapy?

I am considering this type of therapy for my PWP wife who was diagnosed in 2019. The procedure I am looking at is one where they extract a small amount of fat from your own body and then obtain Mesenchymal Stem Cells from this fat. As these are one's own stem cells, there is no risk of rejection.

There seems to be a lot of research and trials regarding stem cell therapy and PD but I have not come across anything that seems to establish any of its effectiveness.

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Rafiki2 profile image
Rafiki2
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49 Replies
Farooqji profile image
Farooqji

The fat thing is fraud. There are a number of such clinics claiming it. However legitimate stem cell treatment is not yet available in the market. There are a number of trials going right now and if successful, can be available commercially within next 5 years

Baron1 profile image
Baron1 in reply to Farooqji

Stem Cell treatment using patients own Mesenchymal Stem Cells is not a fraud per se. Again this is my opinion and everyone is entitled to their own opinion. Based on many studies that have been done, it is plausible and has shown benefits in many neurological disorders. Just because there may be limited studies in the USA, does not mean it is a fraud. If you such world wide, there are institutions that have recorded successful application with patients own Mesenchymal Stem Cells. Again, it is up to the individual to ascertain what is believable and how deep they are willing to investigate the subject matter of Stem Cell treatment.

Best wishes to you all.

Farooqji profile image
Farooqji in reply to Baron1

How commercial stem cell clinics work

A typical treatment at one of these clinics involves removing fat cells from the abdomen (some clinics remove bone marrow or blood for this procedure), treating the cells in various ways in order to isolate mesenchymal stem cells or stromal cells from the removed tissue, and finally injecting these cells back into the body. The cells are re-introduced into the body in different locations (into the bloodstream, cerebral spinal fluid, nose, eye, etc.) depending on which disease is being targeted. Such treatments are performed for a fee, sometimes a large one, and are not covered by insurance.

• Be cautious of any clinic promoting a treatment that has not been proven by the FDA to be safe and effective.

• There is some promise in the area of using stem cells as a possible treatment for PD, but much more research needs to be done before such a therapy will be approved for clinical use.

apdaparkinson.org/article/u...

7springshollow profile image
7springshollow in reply to Farooqji

Several reputable clinics are currently conducting FDA approved trials using stem cells obtained from fat.

Farooqji profile image
Farooqji in reply to 7springshollow

Can you please share the references

Bolt_Upright profile image
Bolt_Upright

Where are you considering getting it?

I have to agree with Farooqi: The only place I know of to get valid stem cell treatments is in the trials.

Now for some good news: The trials may still be accepting patients. Last I heard, a few weeks ago, the Houston trial was still taking applications. And Houston's trial seems promising (to me, high school educated Bolt).

Here is an 18 day old thread on Houston. Looks good and accepting patients: healthunlocked.com/cure-par...

Here is a video of a woman that got stem cells in Houston: youtu.be/9qq0WRdHct4

Rafiki2 profile image
Rafiki2 in reply to Bolt_Upright

Thank you all for your feed backs and thank you Bolt_Upright for posting the video on Marie, very encouraging.

I reside in South Africa and have done (and still doing) extensive research like many of you are doing. I recently came across a US company called Cell Surgical Network stemcellrevolution.com which has become a global network of physicians and doctors performing investigational studies into personal cell therapy, primarily using adipose derived stem cells from one's own fat. This they claim is far better than cells derived from bone marrow, especially in older people.

CSN was established in 2010 and today has a large number of members in the USA and in over 12 countries. They have a list of conditions that they are currently studying which includes PD. There are a number of videos on YouTube.

I recently contacted their South African member and when asked whether they treat PD was told that they do not specifically treat any disease. They only administer stem cell therapy and let the stem cells do their job. Which kind of makes sense.

The amount of fat they extract by using a mini liposuction is only about 50cc (milliliters)and they then extract between 30 to 50 million stem cells from this. The whole process of extracting the stem cells and administering them via IV takes about 3 to 4 hours.

If you want to know more, I suggest you look at their website and contact your nearest CSN physician/doctor for further information.

Looking forward to any comments.

Juliegrace profile image
Juliegrace in reply to Rafiki2

If they charge you to participate in their “clinical trial “ they are not legitimate.

Bolt_Upright profile image
Bolt_Upright in reply to Rafiki2

Be wary of the bait and switch! I have an example from a different stem cell site:

DVCSTEM dvcstem.com/post/stem-cell-...

(I do want to give the site credit for clearly stating the details and linking to studies, while I still find it misleading)

The first significant heading is "Parkinson's disease treatment with mesenchymal stem cells: Current Research.

Stem cell therapy may benefit Parkinson's Disease by replacing and repairing damaged dopamine-producing nerve cells within the brain. One study published in the journal "Stem Cells Translational Medicine" in 2016 reported the results of phase I clinical trial in which MSCs derived from bone marrow were transplanted into the brains of 12 patients with Parkinson's disease.

The study found that the transplantation was safe and that the patients improved their motor function and reduced the severity of their Parkinson's disease symptoms."

So... they lead with this very promising study...

But... DVCSTEM does not use bone marrow cells and they don't transplant their umbilical cord stem cells (DVCSTEM uses donated umbilical cord cells) into PwP brains. They put them in your bloodstream: "Our IRB-approved protocol involves the intravenous (IV) infusion of 300 million culturally expanded human umbilical cord tissue-derived adult mesenchymal stem cells (MSCs)." dvcstem.com/protocol

So just make sure the product matches the pitch :)

Rafiki2 profile image
Rafiki2 in reply to Bolt_Upright

Hi Bolt_Upright,

I had looked at DVC Stem about 7 months ago and as I reside in South Africa the whole exercise would have been too expensive. More importantly, when I asked them for some concrete evidence of PD patients, which they claimed they had treated successfully, they were not able to produce this. They said that this was mostly for confidentiality reasons. This left me with no alternative but to abandon the thought of using DVC.

It does however look like they have had some successes with other diseases, especially MS, but less so with PD so far based on their reviews.

jeffreyn profile image
jeffreyn

"I have not come across anything that seems to establish any of its effectiveness."

I would say that is because MSCs-for-PD is currently at the clinical-trial stage, not yet at the clinical-use stage. Among other things, the two Texas trials (Hope Biosciences and Uni of Texas) are seeking to determine the most effective size of dose and number of doses. Results from both of these Phase 2 trials (N=60 and N=45) are due to be published late this year or early next year.

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

Hardisk70 profile image
Hardisk70

I definitely wouldn’t say MSC is a fraud. I just finished taking part in the Hope Biosciences trial. We’re waiting for the results due out sometime over the summer.

jeffreyn profile image
jeffreyn in reply to Hardisk70

That would be their first Phase 2 trial (N=24), using autologous HB-adMSCs.

clinicaltrials.gov/ct2/show...

Do you feel that you got the real cells, or the placebo?

20fatcats profile image
20fatcats in reply to jeffreyn

did they inject the stem cells into your brain.Have you noticed any good or bad effects. Thank you for going forward for this. Very brave

Hardisk70 profile image
Hardisk70 in reply to jeffreyn

Honestly I think I got the placebo cuz I don't feel any better or different unfortunately.

Bolt_Upright profile image
Bolt_Upright in reply to Hardisk70

Will they be offering the real deal to the control group after the trial is complete? (I hope so).

Hardisk70 profile image
Hardisk70 in reply to Bolt_Upright

me too :)

Zardoz profile image
Zardoz in reply to Hardisk70

Hardisk70, what is your personal experience having gone through the Hope Biosciences trial? How do you feel & what has changed?

Hardisk70 profile image
Hardisk70 in reply to Zardoz

Great facility. Very nice staff. Honestly I think I got the placebo cuz I don't feel any better or different unfortunately.

Boscoejean profile image
Boscoejean in reply to Hardisk70

thanks for letting us know

Farooqji profile image
Farooqji in reply to Hardisk70

It will take time even if it's real stuff

Farooqji profile image
Farooqji in reply to Hardisk70

I have written several posts about the Hope Biosciences trial and don't call it a fraud. I was calling the clinics as fraud who sell unproven treatments

Motheroffive profile image
Motheroffive in reply to Hardisk70

I got to date 4 stemcell infusions from Hope through the “right to try act”, therefore I got the treatment for sure. I have seen benefits slowly showing: first less rigid, better gait, but primarily I do not have “off” periods at all (taking Sinemet 62.5 x 3 day and mucuma) so I can exercise better. The price charged is in no way comparable to the private clinics (c $6k per infusion). I will wait and see how my progression goes this year (hope it will slow down/stop) and then I will decide if I go for more (I live in Europe). Will keep you posted!.

Rafiki2 profile image
Rafiki2 in reply to Motheroffive

Hi Motheroffive,

This sounds very encouraging, thank you for letting me know. May I ask you if the stem cells were obtained from your own body (fat/bone marrow/blood?) and did you receive them by IV? Did you receive all 4 infusion in the same day?

Motheroffive profile image
Motheroffive in reply to Rafiki2

Hi Rafiki, it was obtained from my own fact cells, the infusions are via IV. I had twice 2 infusions within 2 weeks (as I had to travel, stayed 3 weeks to have 2 infusions each time). Note that the results are dependent on your own body’s response and for me they (still) are small gradual improvements, my greatest hope is to see the progression stalling. You can reach out to them , they will explain the risks as well (nothing is risk free!).

seamusw profile image
seamusw in reply to Motheroffive

Have you had any more progress?

Motheroffive profile image
Motheroffive in reply to seamusw

I am pretty stable, still able to sport, work full time, and keeping c/l at 62.5 mg 3 times a day

seamusw profile image
seamusw in reply to Motheroffive

So I assume you think this worth pursuing. ?

Michel0220 profile image
Michel0220

Hi Rafiki

I have attended the Cure Parkinson’s research day in London a few weeks ago where Prof Roger Barker was the key speaker.   He is a world leader in stem cell therapy for Parkinson’s (please see attached video).  His view is that the technology is still being trialled and that it is still to early to use it outside of trials.  youtu.be/ixXDHgXcUz0

Rafiki2 profile image
Rafiki2 in reply to Michel0220

Hi Michel0220,

Thanks for posting this video. It clearly shows that there is still work to be done in stem cell therapy and it may be worth waiting a little longer. I shall be following this closely.

In the meantime, there are other treatments that are in their final phase 3 before applying for FDA approval and hopefully will soon become available. The ones I am closely following are 1) Dr. Tass's gloves, 2) Tavapadon pills by Cerevel Pharmaceuticals and 3) Ambroxol.

These are just some of the possible treatments I have on the short list and there will certainly be more in the coming weeks and months ahead. Let's all keep fingers crossed.

Michel0220 profile image
Michel0220 in reply to Rafiki2

I think that is the right approach. If you are interested in Ambroxol then the other speaker after Roger Barker was Professor Shapira on Ambroxol (see video below for an update).

youtube.com/watch?v=xdYmaJ-...

I hope to have the pleasure of hosting Prof Peter Tass for a talk and Q&A session on the Parkinson's gloves in June.

Rafiki2 profile image
Rafiki2 in reply to Michel0220

Hi Michel,

I have just watched the video on Ambroxol, thank you. It does sound very promising but still a way to go unfortunately.

I hope the the talk with Prof. Tass in June will happen. Will this be on a webinar which the public can participate? Where will it be held?

Michel0220 profile image
Michel0220 in reply to Rafiki2

The plan is for a Zoom webinar with Q&A. I will be sharing details on HU once confirmed.

limcheeese22 profile image
limcheeese22 in reply to Rafiki2

what about Buntanetap by Annovis Bio?

Bolt_Upright profile image
Bolt_Upright in reply to Michel0220

May I counterpoint Michel?

There is this (literal) rocket scientist named George Goss who had MS.

In 2008 they were just trialing Hematopoietic Stem Cell Transplantation (HSCT) for MS.

George tried, but was not able to, get into the "HALT MS" trial: clinicaltrials.gov/ct2/show...

So what George did was: Take the protocol the trial was using and find a cancer hospital in Russia that would duplicate the trial for George! George was in his trial at the same time personal trial at the same time the HALT MS trial was going on. Both trials were successes.

Here is George's story: themscure.blogspot.com/

All that said: Doing an N of 1 trial is VERY risky.

Carpediadem profile image
Carpediadem

Have you red about the stemcelltrial in Lund Sweden lately?? Its big news here!!

Michel0220 profile image
Michel0220 in reply to Carpediadem

Thank you Carpediem. Lund and Cambridge are working together on this (this is the same project as the one mentioned by R Barker). Very interesting indeed, but we will have to wait quite a few years (5-10?) before we can hope to benefit from this.

Zephy22 profile image
Zephy22

lunduniversity.lu.se/articl...

Isn't the real problem that no one really knows if replacing the dopamine-producing cells with new ones of whatever type (and with whatever effect) treats PD; or if it just gets rid of a symptom of the disease?

WinnieThePoo profile image
WinnieThePoo in reply to HugoRipanykhazov

Not really. Roger Barker was quite specific. Stem cell transplants do not treat PF and are only of benefit for people who respond well to dopamine supplementation

HugoRipanykhazov profile image
HugoRipanykhazov in reply to WinnieThePoo

I didn't know that there are PWP who don't have any dopamine deficiency (and who therefore dont need to supplement the actions of those cells).

WinnieThePoo profile image
WinnieThePoo in reply to HugoRipanykhazov

It isn't a question of not having a deficiency, it's not responding to the rectification of that deficiency. Not necessarily for all symptoms. So some PWP still experience off times or no relief of motor symptoms on high levadopa supplementation, and no PWP experience relief from constipation by taking sinemet.

Stem cell transplants, at best, will do the dopamine replacement well . They won't cure the underlying illness.

See about 7 minutes and 30 seconds in to the Roger Barker presentation in Michel's post above

HugoRipanykhazov profile image
HugoRipanykhazov in reply to WinnieThePoo

I didnt understand that but it appears we are back onto the question of no one really knowing what PD is. And therefore defining it by symptoms in the knowledge that most PWP have more or less the same symptoms.

kaypeeoh profile image
kaypeeoh

Placebo is the common reaction when talking about stem cell results. I'm a veterinarian and found results from injecting stem cells into the stifle (knee) of limping dogs. Dogs don't get better because you say they're getting better. Dogs get better because stem cells make them better.

Farooqji profile image
Farooqji

According to Professor Paul Knoepfler, Ph.D. , who is the specialist in stem cell research "I found 37 trial listings on stem cells for Parkinson’s on Clincialtrials.gov, which sounds like a lot. However, unfortunately, almost none of these are real, robust interventional trials based on solid preclinical data. Many have unknown status, have been terminated, or are using MSCs or mesenchymal cells or bone marrow cells, which doesn’t make sense to me. Some are for-profit clinic-type operations too, which is troubling.What are some of the more promising trials or efforts that will lead to trials? I can’t list them all but here are the ones I’ve been following most closely:

The MSK Parkinson’s disease trial looks interesting. Viviane Tabar and Lorenz Studer are co-leading this trial on testing injections of stem cells into the brain for Parkinson’s. This is the BlueRock Therapeutics trial. I can’t wait to see the results.

Jun Takahashi has an iPSC-based trial ongoing in Japan for Parkinson’s. I’m excited to see those results in a couple of years too.

Other potentially promising stem cell-related Parkinson’s disease efforts are in the works too. Jeanne Loring founded Aspen Neuroscience, which is working in this area. I expect they’ll start a trial in 2023 or 2024.

Malin Parmar leads a team that has a future trial planned too." :

ipscell.com/2022/10/parkins...

kaypeeoh profile image
kaypeeoh

The study I used says SQ fat has thousands more mesenchymal stem cells than an equal volume of bone marrow.

7springshollow profile image
7springshollow

Be careful. Many places don't grow a significant number of cells to be effective. Check YouTube for video from Hope Bioscience to see some of the differences. They are conducting FDA approved trials and have had good results.

kaypeeoh profile image
kaypeeoh

The theory is that stem cells are primordial, meaning they have the ability to turn into whatever type of tissue the body needs. I found the mesenchymal cells were effective when used to treat ACL injury. I'm a veterinarian and was able to extract stem cells using basic equipment I already had. Then inject the stem cells into the stifles (knee) of two 90# dogs. Typically the only treatment for torn ACLs is surgery. Surgery costing $10,000 per leg. The stem cell treatment cost $20 per leg. The client didn't have the money for expensive surgeries and was planning to euthanize both dogs. But the stem cell remedy worked and saved both dogs.

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