Over the years I’ve asked patients to talk about their experiences getting a stem cell therapy of one kind or another.
One particular post in 2016 has drawn almost 400 comments, many from patients. The insights provided by these patients and the questions asked in the comment stream have provided a unique window into what’s going on out there.
There is a remarkable diversity of readers on this blog from all over the world. I know we have a lot of readers who are patients and have had stem cell treatments. Every week I get emails from a few people asking about stem cell treatments and clinics.
You can see my guide for patients here, which includes things to think about when considering a stem cell therapy. I also recommend this resource from ISSCR for patients.
Please weigh in here in the comments on this post if you or a loved one have had a stem cell treatment of some kind.
- What was it like?
- What cells were used?
- What was the background of the person doing the injection? What about the person who owns/runs the clinic?
- How much did you have to pay per stem cell injection and overall?
- What condition were you hoping to improve?
- Where did you get the treatment? A clinic? A university of hospital?
- If it was a clinic, how did you find out about the clinic and would you refer someone else to them?
- Anything else you’d like to share?
Feel free to remain anonymous if you prefer in terms of the name you use. Note that otherwise, if you use your actual name it will appear with your comment so please give that some thought.
Importantly, since The Niche is not meant to promote unproven stem cell clinics, please keep your comments balanced and non-promotional. If you felt positively about an experience explain why in concrete terms rather than saying something like “It was a miracle cure!” Also, if you received discount treatment for giving testimonials, have some ties to the clinic/doctor in question, etc. then you should disclose that. While mentioning specific clinics by name in your comments is not prohibited, give that some thought too as again this site is not going to promote unproven clinics.
On the flip side, you are welcome to share negative experiences too but don’t go overboard. For instance, this is not the place to accuse a clinic or doctor of committing a crime, fraud, being evil, etc. If you feel you had a serious side effect or there were other problems with how it all went, describe what you think happened in straightforward terms.
Overall, this post and comments are not meant as medical advice. Talk to your own doctor.
20 months ago, I had severe back pain which was 9/10 24/7. i could not sleep or even function normally. i contacted many regenerative medicine practitioners and identified one whom I could trust. He injected exosomes and PRFM into my lumbar discs and facet joints (L5-S1) and also into both hip joints for advances DJD. I rested my back and had remarkable relief and returned to full activity 8 months later. My back was improved with very manageable pain. My right hip was a complete failure and I had hip replacement surgery. End stage hip arthritis is not going to respond to exosomes because of weight bearing, plus growing cartilage may not be possible in a hip joint and a torn labrum will not heal. Left hip which was not as severe is manageable and stable but not healed.
I have had a recurrence of my back pain after 16 months of almost pain free living post exosomes and PRFM. I had two nerve roots which were in particular very worrisome. I had pain 9/10 and loss of reflexes and loss of strength and numbness in my thigh and lower leg. 3 weeks ago I took a cortisone dosepac and had an epidural steroid injection. I had some incomplete relief and I contacted a regenerative medicine MD here in Georgia who came highly recommended. We met two weeks ago and he confirmed the problem. He wanted to inject platelet lysate into the epidural space and facet joints and I asked if I could bring my own exosomes for injection as well. He had no problem with that. Last week he did the procedure after we decided on the best approach. He injected (3.5 B) exosomes only into the epidural space (trans foramina with fluoro into root sleeves L4 and L5) and 1.5B exosomes plus PRP into and around the facet joints Right L4-5 and L5-S1 (with fluoro) plus ozone. I also had the nurse inject my exosomes IV (15 billion). I am 90% improved today. Was it the exosomes or the combination with PRP? Was it a delayed response to cortisone? Impossible to know. Interestingly, I have experienced all the benefits I had the first time I was given them. great sleep, no pain, clarity of thought improved vision today and most aches and pains elsewhere are gone. I feel like a new person. Back pain today is 1/10, some pain upon waking which diminishes with stretching and movement. BTW, I knew that exosomes are important in wound healing and I was curious about a deep cut on my finger. I injured this finger about 3 weeks ago and I have had it bandaged. It probably needed stitches but I did not want to go to the ER because of Covid. The cut was still bleeding occasionally, even two days prior to the IV exos. Before bed, I re bandaged the cut and the next morning it was healed. There are parts of the cut which are barely visible now. I should have taken before and after pictures but this kind of post IV exosome healing is well documented. I know there are people who doubt exosomes and MSCs can do anything and I was initially skeptical as well. I am now a believer. I am an MD and not easily fooled by placebo. I am not saying it is a cure all but properly used, it can be very helpful. My plan is to do this every 6-8 months to hopefully avoid future problems. The initial loss of sensation, strength and reflexes was new for me and was terrifying. I did not want permanent nerve damage and muscle atrophy.
Editor’s note: This comment was slightly edited to remove the brand name of an unproven product. This comment just reflect’s one person’s opinion and has not been fact-checked. Epidural injection of unproven biologics is likely to be very risky.
I have adhesive arachnoiditis. Dr. Shehadi in Columbus Ohio did a a transplant into my spine and vein with an amazing improvement. This isn’t some hoax,it really worked for me. My symptoms simply stopped and I can walk again.
I am thinking of having it done for spinal cord issues but haven’t yet. I am sort of worried and concerned and not sure what to believe. Why might it work for some and not
others? that doesn’t give me too much hope. thoughts !!!? does the type of stem cells make a difference in your research???
I just received umbilical stem cell IV yesterday for autoimmune disease for lupus, RA, and fibromyalgia. For a month before I had NAD IV and Myers cocktail and other vitamin IV. Also taking true niagen(NAD) and neo40, glucan elite, ellagic, folate, zinc, d3, complete aminos, pro and pre biotics, phosphatidysirel, calcium and stopped gluten and sugar. This is to prepare body and help stimulate the cells. I also was to do 10 hyperbaric chamber visits to help oxygenate the cells and also infrared saunas. The NAD is very much needed, they are finding, to help aid the cells. The price was $3500 and I paid for the vitamins from amazon for additional $500. The doctor has a hyperbaric chamber and was included in the price. I own an infrared sauna but sessions are usually around 35-50$ and should be done 3-5 times a week. I am in the Las Vegas NV area and the doctor is an orthopedic surgeon. First evening and next day I’m just more tired than usual. I’ll update on any benefits.
I had umbilical cord stem cells injected into my shoulder on Aug 10 2019. I would recommend it to anyone.
I was told by my doctor that I had frozen shoulder and there was nothing that could be done until it totally froze which could be 2 to 3 years. That was something I was not looking forward too.
The cost of just under 5000.00 was money well spent.
Within 6 weeks after the treatment I was pain free and able to move my frozen shoulder.
I now have full movement and no pain.
The office I received treatment at is located in Washington.
Hi Christina,
Thanks for sharing your experience.
Do you know the name of the supplier firm that produced the cells? Liveyon? Some other firm?
Paul
Paul im not sure where your expertise comes from? Have you treated anyone with stem cells? As for your comment “not to the benefit of the patients but rather those doing the study “, I beg to differ on your opinion ,”those doing the study do not ” benifit only ” any information gathered from this study could help people in the future, including my two children who have the ALS gene. My husband and I were not promised anything from this study. Our only hope was the possibility that something could help deter the progression of the ALS in order to prolong my husbands life from days to months. Yes this study was under the right to try and yes it is part of an FDA study ? Is there something wrong with a right to try study or shall we continue to live in the dark ages of promoting death due to lack of knowledge ???
If you want more information on the
randomization of subjects along with who peer-reviewed the publication of the study, I suggest you wait untill the study is published. All other information you would like to know, I would hope you ask the two Dr’s you so graciously shared your narrow minded opinion about. Im sure they would be the experienced expert’s you would need to learn from. As for the” placebo effect”, you believe what you want you were not there to dress my husband.
Carol,
I’m a stem cell biologist and I’ve been following what stem cell clinics are doing as well as what others are doing with unproven stem cells offered outside of the traditional FDA clinical trial process.
There’s nothing necessarily wrong with Right To Try, but in my view it should be done by groups that have done their own Phase I study first and have an IND from the FDA. themselves.
It also concerns me when patients are required to pay large sums of money to get unproven stem cells. If you are OK sharing it, I’d be curious what charge you had to pay for this?
Hi Paul. Hope you are still responding. The fact that you are a stem cell biologist caught my eye. I am a patient with a degenerative disk. I have suffered unbelievable since Feb. 2019. I take a cocktail of pain meds that I loathe. After one year of traction, the pain is about 25% better. Good news is, I’ve identified some triggers. Bifocals – titling my head back to see the computer – horrible trigger. Just bought computer glasses. Next, wearing a bra. Scheduled to see a plastic surgeon. Otherwise, turning my head right and being on the computer (required for my job). I’m now being seen at Mayo. Their recommendation is a nerve oblation every 9-12 months for the rest of my life. Last year I had the nerve block to identify the nerve, and they couldn’t find it. So now I’m giving Mayo a chance to find it, though the thought of getting nerves severed for the rest of my life sends chills up my spine. So I started researching stem cell injections. I watched Ted Talks. Looking for articles. I just discovered that the Barrow Institute (for spine/brain) give stem cell injections for degenerative disks. Trying like mad to get an appointment. They also do disk replacement (I’m not a candidate for fusion due to age). So, very long story. Would value your opinion on stem cells, using your own or umbilical (seems like the latter would be more powerful, but I keep reading the opposite). Is it only temporary? Any perspectives you could share would be MOST appreciated! Wishing you good health. Lisa
@Lisa,
I’m sorry you are suffering so much! It’s understandable to look for options to help.
What you describe sounds like a risky idea to me with little chance of benefit. If they inject amniotic cells, most likely these injections don’t contain any real living cells. Most suppliers of amniotic cells sell a dehydrated cell extract that is cheap to make and store, but probably can’t do anything useful. If they inject your own cells, are they fat stem cells? Bone marrow? In either case with the living cells, I’m not aware of solid evidence that these cells can help degenerated disks.
Also, are they injecting into the spine or IV into the bloodstream?
Whatever they do, if we give them the benefit of the doubt that it can be helpful (and safe!), from all the patients I’ve talked to over the years, almost all of them had only a temporary perceived benefit. Note that I’m not a physician so I can’t give medical advice, but as a stem cell biologist who has followed these clinics for a decade, I’m just trying to be helpful calling it like I see it.
This is how stemcells have worked for my husband what gives you the right to say anything about Dr’s who are trying to help people such as my husband. People like you should stop blogging especialy if you think you know everything about ALS. You don’t know anything untill you experience ALS yourself!!!! We know there are alot of treatments that do not work and are scams but you are attacking Dr’s that could give hope to people who are trying to stay alive.of course, you wouldn’t understand the concept of hope like Dr Weiss and Dr Levy do ,thats why they are Dr’S and your a know it all blogger!!!!Try going after the scammers instead.!!!!! I also know you won’t post this to your blogg.Have a nice day !!! https://www.facebook.com/1225768719/posts/10216177414127827/
Editor’s note: I’m allowing this comment to include the FB video link even though it is in a sense a patient testimonial for an unproven stem cell offering that requires patient payments. It was a close call to allow this link to the video, but I felt on the whole it serves an educational purpose about testimonials. Also please see my separate response to this comment.
@Carol,
I’m glad your husband is feeling somewhat better.
But I doubt it has anything to do with the stem cells. Stem cells don’t work within hours.
That’s more reflective of a placebo effect.
Part of the problem with “pay-for-play” things like NEST is that there usually are no control subjects, no blinding of participants or investigators (who benefit financially from the “success”), no randomization of subjects, and often no peer-reviewed publications of the data. In my view, this is overall not to the benefit of the patients, but rather to those doing the study.
I don’t know if you’re comfortable sharing more details, but it’d be useful for readers to know how many cells your husband got, how did he receive them (injection into the CNS or IV?), was he promised any benefit or was possible benefit even implied, and what doctor actually administered the cells?
Did he receive them through Right-To-Try?
My best to you both.
Paul
I got injected on both of my knees and it has been a year…It did not work for me….
Sandra,
What kind of stem cells were used?
Bone Morris cell concentrate. Knee issues, Steadman Clinic, Greyledge technologies processing protocols. Very good results two and half years out.
Thanks for sharing your experience, Brett.
Would you say the benefit you feel has persisted or has started fading? Do you envision needing more injections?
I received treatment for my knee artrosis and received SVF from my fat tissue.
I feel better, pain decrease from 7 to 2 am mobility is better, I received 8 month ago and actually improve continue.
Thank for asking
Yes I hit steam therapy about 6 months ago. Three consecutive times it was for COPD or what they say I have emphysema did a little good not what I had hope for but the company has a veteran a day program so it didn’t cost me anyting this is a wonderful program in Coeur d’Alene Idaho very will maintained office and the staff are Pleasant and courteous I think I may be one of those few that this doesn’t work on usually this would have cost about $7,000
Thanks, James. If you are OK with it, can you tell us what kind of cells or product was used?
How did they give it to you: IV or inhalation?