Cell-based Transplantation Patient Views

I did the mesenchymal stem cell clinical trial. It's been unblinded, I got the real dose not placebo.

My case hasn't shown a significant progression but that's true for the times before, during, and after the trial. Some things seem to have gotten better but also I'm just kinda used to them being there.

Those were administered by regular old IV, so they could in theory help things anywhere in the body. I was holding out for regrowing hair, which isn't just "nice"- it would be objective evidence that it does something. No improvement in hair to report, though.

Didn't get any sense of smell back either- it would be really exciting to see that, again, not just because it would be nice to smell coffee brewing again but, again, that would be objective proof of it helping since that almost never improves on its own and you can't get better smell test scoring by optimistically thinking it's better

I was in a clinical trial and received mesenchymal stromal cells. The final data is not yet published, I saw the prelim data which hadn't yet indicated which arm was placebo, low-dose, or high-dose. The arms all showed improvements though and no one stood out as far worse than the other two, so it didn't appear all that different than placebo.

At the conclusion of the study I was unblinded and told for sure I got the high-dose arm. Did it help, though? Can't say. I've not progressed much but wasn't progressing much before or after the treatment period either. I still have pretty bad periods of symptoms at times. Maybe they would have gotten worse without this treatment, but I can't know that.

It was a great opportunity for me to try them for free with the benefit of high quality control used for a US clinical trial. There is no released proof of their usefulness for PD and I wouldn't recommend spending your money on this.

I had stem cell therapy 11 years ago and it helped relieve many of the patient's symptoms. The clinic the patient went to was in San Diego harvested the stem cells from the patient's fat. Mannitol has been used to reduce brain swelling as a result of injury. Their reasoning is by dehydrating the brain when they are ready to administer the stem cells the brain after some dehydration will such up the IV fluid containing the stem cells (my layman’s terms) and also injections in an area of the nose (no pain) were done all with the hopes of getting some of the stem cells past the blood-brain barrier. The patient is having another treatment as the patient's PD is progressing and this time it will be in Chicago. The patient is praying for great results again.

My stepfather just got a stem cell treatment from the Cleveland Clinic. It was done by a private praticinor

It was with the help of these people

https://clevelandcordblood.org

Just hoping this information can be useful for someone else, it seems really difficult to find information when I tried to look myself so I’m forwarding information I got first hand.

He’s 58 years old and is supposed to see noticeable effects in up to 3-6 weeks

It was non-invasive and given through a cpap machine, I believe.

Yes I have and had stem cell therapy at their clinic in Serbia only 4 weeks ago. It takes 3 months before results are felt so will report back then. 👍🤠

Have you thought about stem cell therapy? The patient is 50 years old. The patient was diagnosed five years ago and has been doing stem cell treatments since 2022 when they did a clinical trial in Texas. They’ve continued to pay out-of-pocket for stem cells for the last year and a half and have been doing fantastic. It is expensive so I would see if you could find a clinical trial first. They did their clinical trial through Hope Bioscience in Texas outside of Houston.

I am involved in study out of UCLA And the primary researcher is involved in a stem cell study funded by Bayer. They are about to start recruitment for a phase 2 trial. Phase 1 was promising. I have announced my interest in being involved in the phase 2 trial, but there is a risk separate from any medical risk of the treatment. There is a chance that any given participant could end up in the control group, which would involve being knocked out for “surgery“ and having a small incision placed on your scalp without having any stem cells injected. Participants will never know if stem cells were actually injected into their brains. This would be done to avoid the placebo effect skewing the study results.

My doctor (movement neurologist at Mayo) recently told me about stem cell treatment she’s excited about. It involves implanting directly into the brain so probably no picnic but she’s looking forward to the results of the study (which probably won’t be for another couple of years).

Hi a fellow patient – great to hear you received benefit from autogulous stem cell treatment 11 years ago! Would you mind sharing where in Chicago you will be going for further stem cell treatment? Thanks!

My sibling has had Parkinson’s for 32 years. Presumably from Agent Orange exposure in Vietnam with the Red Cross. She’s been on practically everything out there over time, including DBS placement. I’m her caretaker/P.O.A. Sadly, she’s now in a memory care facility, stage 5, fading fast.

A friend was diagnosed about a yr. ago. He & wife chose to try stem cell treatment & manital (some sort of sugar?) Other things too, like Brain 770, which reportedly decalcifies the pineal gland. His wife researches like crazy. Over time, I see many positive upticks with my friend's neurology symptoms. He’s walking better, speaks a bit louder, is getting up earlier, is coming out on his own again, is cooking again, etc. Much more energized. Stem cell is not covered by Medicare at this point. They paid about $12K, having a nasal spray treatment. Don’t know how many treatments were done/ covered by that amount. Stemedix is one company that does this.