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.
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?
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?