What should patients think about when they are considering a stem cell therapy? Going to a for-profit, unproven stem cell clinic is particularly risky and raises more questions.
Patient guide to stem cell therapies
For better or worse, I am in the unique position of being a stem cell scientist and also a former cancer patient. This does give me a unique perspective on things.
Keep in mind this is not medical advice and you should absolutely talk to your personal doctor with whom you should make your own decisions. I am not a physician.
Note also that I’m not selling you anything so I don’t have a conflict of interest in urging you to be cautious and skeptical.
Another update is this new resource for ways to report a bad stem cell clinic experience or a concerning clinic.
I know there are thousands of people out there looking for more practical information about stem cell therapies and treatments.
These folks understandably are using the Internet to look for some clear, good info on stem cell treatments either for themselves or their loved ones.
Too often the info that is out there is either wrong, partially misleading, biased, or overly complex.
So in this patient guide post I want to address this need for trustworthy factual information and no-nonsense perspectives.
I am speaking as a scientist, patient advocate and cancer survivor in the form of 10 key realties list below to help you guide your way through the jungle of stuff out there about stem cells.
As mentioned above, I have now updated this post as some things have changed in big ways in just the past few years.
What is stem cell therapy and key facts you need to know?
1) Stem cells are often essentially a type of drug and possibly permanent in your body after a transplant.
Stem cells can be extremely unusual drugs, but they are often drugs even if some argue they aren’t. The FDA considers them drugs in many cases. Unlike other traditional chemical drugs, once a patient receives a stem cell drug, it will not necessarily simply go away like other drugs because a stem cell drug consists of living cells that often behave in unpredictable ways. What this means is if the stem cells are doing bad things your doctor has no way to stop it. You have no way to stop it. Also because stem cells are alive they can grow inside your body, move around, and change. This can be helpful or harmful, but the big point is that it is not something that is controllable or reversible.
2) Side effects. Like any medical product, even aspirin, stem cell therapies will have side effects.
One hopes that the side effects will be relatively mild, but it’s hard to predict. Different kinds of stem cells have variable risk profiles, but if someone tells you that the stem cell treatment they are selling has no risks then that is a big red flag and I would walk away. They are either woefully lacking in knowledge or aren’t being honest with you. Sometimes clinics will either on their websites or in person acknowledge risks almost as sort of a disclaimer, but then they’ll tell more casually that there aren’t really any risks. A common statement is “The only risk is that it won’t work.” That’s false.
3) The only stem cell treatment explicitly OK with the FDA for use in the U.S. consists of versions of cord blood/bone marrow/hematopoietic stem cell transplantation.
What this means is that any other stem cell treatment you see advertised on Facebook or Google or elsewhere that indicates it will be given to you inside the U.S. is not FDA approved. The exceptions to this are if it is part of an FDA-approved clinical trial or it is using stem cells in a procedure that meets other criteria (e.g. being both homologous use and minimally manipulated–yeah I know these are jargon terms).
4) If you venture outside the U.S. for a stem cell treatment, use extra caution, but these days also be very careful inside the U.S.
Whether you travel abroad or closer to home, have a knowledgeable physician inside the U.S. guiding you, preferably your primary care doctor who mot often are not going to buy into hype. We have to avoid the trap of thinking that only the U.S. can offer advanced medical treatments and these days many American patients get their stem cell transplants here in the U.S. from dubious clinics.
5) Stem cells are not a cure-all.
I am as excited as anybody about the potential of stem cells to treat a whole bunch of diseases and injuries, but they are not some kind of miracle cure for everything. When a doctor offers to inject some kind of stem cells into a patient either into the bloodstream or into a specific place that is injured such as a shoulder, we just do not know at this point if it will do any good with the exception of bone marrow transplant. You should start getting worried if the clinic tells you that one kind of stem cell such as fat, bone marrow, or amniotic stem cells can treat many different conditions. There’s no science behind that kind of claim. Stem cells are not a panacea.
Patients often mention to me that the doctors offering stem cell treatments told them that the treatments are proven safe….or that your own stem cells cannot harm you…or that adult stem cells are harmless. I often tell people to think about how much research and how many questions they ask when looking to get a new car. You should bring at least that level of intensity (ideally much more) to getting info about stem cell transplants too as the stakes are even higher. Be skeptical. Ask many questions and if you aren’t convinced, then don’t do it.
6) Don’t let celebrities be your guide to medical care.
The number of famous people getting stem cell treatments is increasing including sports stars and politicians. Don’t let what these folks do influence what you decide to do about your health. Just because they are famous do not believe for one minute that they are any more informed than you or your personal doctor about medical treatments or stem cells. If anything I think sometimes famous people are more reckless with their health than average people like you and me.
7) Reach out to scientists as a source of info.
As a scientist I am always happy to hear from people outside the scientific community with questions about stem cells and other research. I can’t speak for all stem cell scientists but you might be surprised at how likely it is that if you send them a very short, clear email with one or two questions that they will respond and be helpful. We can’t or shouldn’t offer medical advice, but we can give our perspectives on stem cell research and its clinical potential, etc. Just do not cold call scientists as you are unlikely to find them that way and even if you do, they may be cranky. Email. If they don’t reply try someone else and don’t be offended they we didn’t answer. Often times we may not answer because we are super busy. For instance, I often get more than 100 emails a day.
8) The people selling you non-FDA approved stem cell treatments want your money.
As such they will do their best to convince you that their treatment is safe and effective. The more convincing they are then the more money they make. They may offer patient testimonials either from patients who truly believe they were helped or from people who are paid to say the treatment helped them. The bottom line is that the sellers of dubious stem cell treatments are generally in it for the big bucks. Admittedly I do think that some of these providers truly believe stem cells are helpful, but you’ll never see even them offering to give patients the cells at cost. These are instead very much for-profit operations.
9) A stem cell “clinical trial” isn’t necessarily a real trial.
I am contacted weekly or even daily at times by patients. Or their families. They are rightly focused on getting information that they can trust.
Many stem cell clinics use the name “clinical trial”. That’s often misleading. In the standard meaning of “clinical trial” the experimental therapy being tested has the FDA’s approval to be used in the study. In addition, there are data supporting the study. Further, those doing the trial do not charge patients to be in it.
You shouldn’t have to pay to be a guinea pig.
I often suggest that people turn to the federal website clinicaltrials.gov for information. It is still a great resource, but be aware that many pseudo-clinical trials are popping up on there that are really mostly about making money. They do not have FDA approval and there are other issues of concern. So even on that website use caution.
10) The most important thing is information/data and you have a right to see it before treatment.
Before you or a loved one get a stem cell treatment, ask two key questions.
First, is the treatment FDA approved and if not, why not? Second, can you please show me the data that proves your treatment is safe and effective? See what kind of answer you get. If they criticize the FDA or invoke a plot by “big pharma” to block stem cells then that is a warning flag. If they refuse to show you data, then that is a big red warning flag. They may say it is confidential or that it is not published yet, but as a patient you have a right to see the data, assuming they have any data at all.
These facts will likely change over the coming years, but right now I think they represent reality. I know as patients we need hope, but these unapproved stem cell treatments will at best take your money for nothing, and at worst will endanger you or your loved ones.
11) Chiropractors shouldn’t be doing stem cells.
Chiropractors really shouldn’t be in the business of working with stem cells at all. They are not legally allowed to do these kinds of injections themselves so they get a physician to work with them and either that physician or a nurse practitioner does the actual injection to get around the rules. Yet we often see chiropractors in particular selling injections of freeze-dried and reconstituted ‘stem cells’ that is actually just a mixture of dead cells/cellular junk.
You may find the Closer Look at Stem Cells website to be a useful resource too.
A reminder. The patient guide above is for information only and is not medical advice. All medical decisions should be made by patients in consultation with their personal physicians.
Totally agree with you Dr. Freeman. you are absolutely right there are a lot of heroes out there doing their best sometimes under difficult circumstances to make a difference.
Thanks for your comment.
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It’s very interesting guide for the patients. We are going to start cooperate with clinics who perform stem cells therapy, but we need more knowledge to educate our patients. Your guide was very helpful, thank you 🙂
“Patients guide to treatments”, the first comment on this written on-line blog was January 3, 2012. It is December 7, 2019, thus almost 7 years ago. Some of the items in the article are still relevant but after so much time, various clinical reports and reviews published on the NIH site, I would suggest the author “revamp” the contents to bring it more inline with present available information.
For instance, there is an ongoing clinical trial in Atlanta Georgia at Emory University Medical Center using MSCs derived from bone marrow aspirate of “blood stem cell patients” (after having received a “stem cell transplant” for a blood cancer condition). These patients are on high dose prednisone for the chronic GVHD which they have but the steroid is not effective, or there is an attempt to reduce the dosage or eliminate prednisone completely. This phase 1 clinical trial is hoping to see is the effect can reduce/eliminate the prednisone load, and since it is Phase 1, toxicology is being tested. It is towards the end of the trial and the dosage is 2 million MSC cells once a week for four weeks, (derived from the patients bone marrow, and then grown in tissue culture in a lysate solution).
It is a clinical trial that requires one to be in the Atlanta area for 42 days initially. The NCT# 02359929 identifier on clinical trials.gov. Below is the contact information. 12/07/19
Jonathan Berman, CCRP
Clinical Research Coordinator III – BMT Clinical Trials
Emory University – Winship Cancer Institute
1365 Clifton Rd NE, Suite B4000
Atlanta, GA 30322
Phone: 404-778-0676
Fax: 404-778-8583
If you look at the first line it says it was updated in 2016, but I agree another update is in order soon. Thanks.
Paul, Thanks. I am not aware of a blog started by a stem cell scientist like this one. Very needed.
In the interest of those of us looking for Tx, although I realize it could be time-consuming, it would be great if you could provide your thoughts on specific postings
For example, a post by “Graham” [July 27] indicates he had a Chiropractor office inject an “amniotic allograft” into his knee which worked for about 6 months and then apparently stopped working and a “boost” was needed. To my knowledge, in the US any allograft cannot, by law, contain any stem cells. Labs are allowed to advertise ‘growth factors’ and other components like collagen, laminin, hyaluronic acid, etc, which can have the kind of effect described by Graham. See, for example: https://amniotechnology.com/products/palingen-flow/
So it is most probable that Graham had grown factors injected, and not stem cells, as he thought.
Stem cells, have been shown to actually regenerate cartilage after a single treatment, and the regenerated cartilage appeared to be a permanent result that required no “boost”. See, for example:
https://amniotechnology.com/products/palingen-flow/https://www.medpagetoday.org/meetingcoverage/aaos/31131?vpass=1
Notice that the stem cells were “allogeneic”, obtained from from donated bone marrow aspirate.
Here’s one report of “autologous” stem cells from the patient’s own fat [New Zealand]. Essentially the same protocol used by US Stem Cell before it was stopped by the FDA’s lawsuit.
Here are other studies reporting cartilage regeneration:
Filardo G, Perdisa F, Roffi A, Marcacci M, Kon E. Stem cells in articular cartilage regeneration. J Orthop Surg Res. 2016;11:42.
Burke J, Hunter M, Kolhe R, Isales C, Hamrick M, Fulzele S. Therapeutic potential of mesenchymal stem cell based therapy for osteoarthritis. Clin Transl Med. 2016;5(1):27.
@Nick,
This is a lot of crap out there to be frank both in terms of “information” and products. For any particular product other than bone marrow material and/or material that is actually part of an FDA cleared real clinical trial (doesn’t charge people), most often it’s anyone’s guess whether it has living cells that are actual stem cells in there. FYI: https://ipscell.com/2016/12/wanted-both-dead-alive-amniotic-stem-cell-clinics-sell-zombie-cells/
Most of the clinics I talk to don’t even claim any more (many used to) to regrow cartilage and I don’t see academics who think we are there yet either. Those who believe in a benefit for joints invoke an indirect growth factor mechanism that doesn’t rely on the injected stem cells staying long term or growing themselves into anything.
Admin: why not allow treatment specifics like Dr. name, lab fabrucating the product, etc.? Cleansing posts of these specifics renders them hollow and useless. As a patient, I need those details to be able to research not only the practitioner but also the lab.
@Nick,
I do allow some mention of specifics, but in a limited way. Between clinics posing as patients to advertise and litigation risk, it’s hard to allow mentions of clinics without restrictions.
An Australian company (https://www.mesoblast.com) with 10 years experience, has stem cell derived products in clinical trails. There is an approved product in Japan. The company is working on FDA approval; a list of products in development: lead product candidates under investigation are:
MPC-150-IM for chronic heart failure
MPC-06-ID for chronic low back pain due to disc degeneration
MSC-100-IV for acute graft versus host disease
MPC-300-IV for biologic refractory rheumatoid arthritis and diabetic nephropathy
I hope this gives relief to those suffering, and in a sense begs the question “why is the FDA, medical industry, clinical trial industry, not pursuing this new field of human health applications ?”
You’re right, several providers claim that the stem cells they have been selling has no side-effects which is something questionable.
DOCS HAVE LUBRICANTS ,NOT STEM CELLS, THAT R EFFECTIVE. I M STILL LOOKING FOR A DOC THAT WILL RETRIEVE MY G SONS UMBILICAL CORD FROM NEW ENGLAND AND DO WHAT IS NECESSARY TO HAVE CELLS WITH NO MEMORY FOR USE ON ME, IN TEXAS. .
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I had stem cell treatment on both knees November 2017, the procedure was called “amniotic allograft” it involved injecting stem cells directly into the knee “cavity” behind the knee cap.
To begin with I considered it to be nothing short of a miracle.
Before the procedure I had trouble walking unaided, literally within a week the level of pain diminished slightly. Within 2 months I had no pain at all. After about six months the pain in my knees started increasing, Chiropractor recommended PRP treatment to “give it a boost”. A week later pain was gone again, however the pain is now coming back, now at 10 months.
Chiropractor recommends doing it again using umbilical cord cells.
The initial treatment cost close to $7k and he is saying the cost will be the same (another $7k), his claim is that the cord cell count is 5x more per cc than when I had the treatment last year.
The sales pitch for the first treatment included a claim of stem cells being “live/active” for upto 10 years, and that I wouldn’t need to do it again (if at all) for 10 years.
The Chiropractor I see (3 years now) is very good at chiropractic care, and he truly believes in the products, I have become trusting in his opinions, he has done much good changing my diet as well as correctly diagnosing a condition that was incorrectly diagnosed by a specialist MD.
I have no doubt it was working, I have proof in the form of before and after X-rays, as well as how mobile I have been. The efficacy seems to not be there long term.
My dilemma now is do I really want to spend another $7k, “hoping it works this time”?
This expression comes to mind “the definition of stupidity is doing the same thing expecting a different result”
I would be interested in opinions of others…
Thank you
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All I can say is that I had stem cell treatment on my knee used fat and bone marrow cells, over a year ago and I had amazing results. I have no pain and back to playing tennis!!!! So it worked for me and I thank god i did not have to go through surgery and so thankful surgery was not my only option.
Really, really interesting information; especially for a field that is fairly new and undocumented/unproven. Also, very frustrating when one is looking for answers to questions about whether stem cell/prp injections are safe? practical? affordable? successful? and which one? for a senior hoping to prolong a healthy lifestyle of activities while some of those joints/cartilage/muscles begin to wear out and naturally erode. And to avoid painful, expensive, invasive, with lengthy rehab surgery……..anyway, I shall keep looking and learning. thanks y’all!
Does anyone know about stem cell therapy for spine osteoporosis? How about Premier Regenerative clinicib Arizona? Are they legit? Thanks!
I regrew a portion of my finger with XXXXX Stem Cells!
Editors note: brand name removed to avoid promotion.
I was told the state of Texas , as of Sept 2015 allows the use of cord blood for immediate family use, without FDA intervention. My grandson, born Nov. 2015 has his cord blood stored out this state, for my specific use. I was diagnosed Prmary Lateral Sclerosis 2009., a lesser form of .A. L S I cant find a doctor that will retrieve this cord blood and sponsor the injections. I have taken the H L A test to qualify, is there someone in Houston, Sugarland, area to help.
I was diagnosed with Relapse Remitting Multiple Sclerosis in May of 2014, and I have been taking Tecfidera twice a day. I am trying to see if there are any clinical stem cell trials for RRMS. My mom suggested that I research Emory and a few other locations. Any suggestions out there, as I would be ever so appreciative. I will continue to do some research myself. Thanks
I too have dx of RRMS 2007…have run thru the drug gambit now only doing diet and mmj for pain a spasms.my numbness has progressed so I’m looking into adipose autologous mesenchymal stem cell treatment ..my physician of 20 years who recently had to retire due to his having Parkinson’s disease has recommended it …he himself was receiving those treatments so that’s why I put so much faith in its possibilities… currently raising funds myself but would love to hear your findings or experiences if you find or experience any. . thank you, Jan
A year ago, after checking with previous stem cell clients, the clinic injected my bone marrow stem cells into my left knee. The process was painful using a local anesthetic and I had to wear a brace for a couple of months. I also took the nutritional formula sold by the clinic and didn’t exercise strenuously for a couple months. I experienced no bad side effects. After immediate pain relief for my osteo-arthritis, I did well until I reexperienced pain in both knees 6 months later, after I’d walked on cobblestones for a month in Europe.
I recently had both knees injected at an office closer to where I live, with stem cells from placentas. I again consulted with several previous patients who’d had the same procedure and had experienced considerable relief. A month after the stem cell injections I had PRP (plasma-rich-platelets) from my blood in both knees. I am following this clinic’s recommended nutrition regimen, drinking 10 glasses of water a day, and not overdoing walking for two months. The pain in my knees is 70% reduced from what it was a year ago. If the amniotic stem cell treatment lasts I’ll be satisfied. I don’t want to have knee replacements (recommended by 3 orthopedists) or again pay the high prices for more stem cells.
Does anyone know if Leukodystrophy has a chance with Brain Stem Cell Therapy? My fiance has been suffering much because of this. Would like to know more information, please….thank you
18 years ago I suffered traumatic avascular necrosis bilaterally to my humeral heads. After much pain, and the fortunate medical advise and experimentation offered by a CO orthopedic surgeon, my shoulders healed leaving me with severely arthritic joints. Years of swimming, physical therapy and pain have me back to square one.
Initially upon diagnosis, it was recommended I have bilateral arthroscopy . I dodged that bullet, only to be presented with it again in 2015 and now in 2017. Shoulder arthroscopy is not as advanced as hip or knee arthroscopy. It offers limited ROM and a terribly long recovery. I am looking for an alternative and I was hoping I could find it in stem cell options. Apparently, this is a pipe dream and I am mourning, once again the loss of functionality. I am not willing to trade pain and limited ROM for disfigurement, pain, limited ROM, and bankruptcy. So, it seems I am rather stuck. If you have information of studies that might offer me some hope, please forward. I have scoured every pubmed, clinical trials, etc. I can find, and I have failed to locate any trials or potential trials.
hello, my son has Aspergers, is there any evidence supporting stem cell treatment can help? There is a company called XXXX that I am talking too, they have told me there are no side effects and the cost is 15 thousand, I asked if we would need more than one treament and they have assured me we will see a substantial difference in our son
Hi Maria,
There’s absolutely no evidence that stem cells help Asperger’s or Autism Spectrum Disorders more generally.
Even more importantly there’s no evidence that such a treatment would be safe for your son.
These folks just want your money.
Spinocerebellar Ataxia here..also about six months out fro having my Nurse Practitioner. The idea of becoming a vegetable is both terrifying and motivating. Where would you suggest going to find some reputable clinics abroad, who offer stem cell therapy? Would a neurodegenerative disease be stem cells injected into the head itself, or injected into the bloodstream?
I am a PM&R physician (M.D.) who uses interventional procedures to treat a variety of painful/degenerative conditions of the musculoskeletal system. I do NOT do stem cell injections as part of my practice. While I appreciate some of the information in this post as being accurate and informative, the author appears biased and misses a few important points:
1. The FDA does NOT regulate the practice of medicine. So, just because the FDA does not “approve” something, does not mean it hasn’t been proven to be safe and effective. For example, re-setting and casting a fractured arm is NOT FDA approved. Why? Because it falls into the practice of medicine and NOT a drug delivery. Stem Cells are NOT considered under the jurisdiction of the FDA so long as they are “minimally manipulated.” Thus, while there is no FDA approved use of stem cells, it’s NOT because there is no proof that it is a safe and effective treatment.
2. The author states that if we inject stem cells into a particular site “we just do not know at this point if it will do any good with the exception of bone marrow transplant.” This is NOT accurate. There have been many published studies which have demonstrated both efficacy of stem cell treatment and its safety. Many would argue that we need more studies. Many would argue that we need larger and better studies. I would not disagree. However, that does not change the fact that these studies have been published in peer reviewed journals which means that there has been at least some level of scrutiny in validating their authenticity.
I do acknowledge that we are in the infancy of our understanding of stem cell treatments, and that we need more and better information before we will truly know how to best utilize this treatment option.
@Michael,
Thanks for the comment.
Regarding your points, I would clarify a few things.
The FDA may not regulate the practice of medicine, but it does regulate the devices, the drug products, and in some cases the procedures used by physicians including related to their use of stem cells.
Further, even minimally manipulated stem cells are considered drugs if they are used in a non-homologous fashion. The FDA’s draft guidances point to fat stem cells being both more than minimally manipulated and often used in a non-homologous fashion. So you could flip your statement around and say that stem cells ARE considered under FDA drug regulatory jurisdiction UNLESS they are both minimally manipulated and used in a homologous fashion. The Cell Stem Cell paper from my colleague Leigh Turner and I published last year was based on our survey of stem cell clinics throughout the U.S. that lack FDA approval and I would say very few of those appear to be meeting this hurdle: both minimally manipulated and used in a homologous fashion.
Regarding your 2nd point, actually we still don’t really know conclusively if stem cells are both safe and effective in the vast majority of cases for different applications with various cell types for specific diseases. A few papers based on non-RCTs are not proof. I’m guessing in 5-10 years we’ll have proof for quite a few, but we aren’t there yet in my view. Up to today some studies have indeed been encouraging, but it’s early days. As you yourself said, this is in its infancy.
Paul
Admin: Would not allogeneic bone marrow MSCs be more than “minimally manipulated” by culture expansion?
And when injected in the knee,or shoulder, or as an IV, would not that be non-homologous?
I am a ‘newbie’ here, so don’t know my way around yet. Could you kindly post a link to your and Turner’s survey of stem cell clinics? I’m a potential patient in search of a clinic, but so far it seems I will need to go to another country to get either autologous or allogeneic stem cell Tx for a knee..
hello all. i have a 18 year old son suffering from CP (cerebral Palsy). does anyone have any idea if stem cell therapy is helpful in this situation and who should i consult..thank you
I believe as long as clinic protocols follow same day tissue transfer guidelines and “minimal manipulation” guidelines as set forth by the FDA, then Autologous stem cells that are harvested from blood, bone marrow, or adipose tissue can be re-administered to you on the same day within a closed system safely. Do the potential benefits outweigh the risks? I think so and their is no fear of rejection because they are genetically coded to you since they come from you. As long as clinics utilize a sterile technique for harvesting autologous stem cells I personally deem it safe. The isolation procedures fall under the category of physician’s practice of medicine wherein the physician and patient are free to consider their chosen course of treatment. This will always be provided as a service and as a practice of medicine only. This procedure is not a drug nor do most claim it to be a cure for any condition. Most deliver stem cell enriched treatments. The milieu extracted and delivered is rich with stem cells but it “does not single out any one particular cell group”, as no differentiation has yet occurred. This SVF may help patients suffering from a wide range of conditions. Quantitative data has proven this fact for many in the form of blood tests and MRI’s which are deemed the gold standard. Qualitative data as well has been flooding the internet in overwhelming numbers. I hope all in this thread don’t discount the potential regenerative possibilities of this therapy for yourselves or your loved ones. Many doctors believe they are not going against their Hippocratic oath of “do no harm” and are engaging and pursuing this particular form of therapy for their patients for both financial reasons to keep their doors open and because this may prevent even more costly surgeries or continual suffering.
Ron,I am having my doctor look into this stem cell trial and will make up my mind after talking to him.I am really up in the air about this.
can any doctor tell me whethert his bone narrow transpalbt ti cure cancer is the same to treat mnd tks doctor
Don ng
I read your blog carefully. But it’s help me to know what is stem cell? But if anyone more details than visit our site.
ALERT! Dubious claims from stem cell clinic, http://calweststemcell.com/
“PRP injections are used as an anti-aging treatment to help slow down the physical aging process”
Please provide evidence of this.
@admin – you are very fair in letting most post their opinions on here and my respect for that – but surely you’re in danger yourself allowing adverts from clinics making dubious statements.
@Andy, can you direct me to specific comments that concern you? Thanks. Paul
The poster “Sandra Figueroa” is linked to the site http://calweststemcell.com/, where you find:
“PRP injections are used as an anti-aging treatment to help slow down the physical aging process..”
“When compared to steroid injections or surgery, stem cell therapy has less side effects.”
“By injecting PRP into areas like the cheeks, jaw, neckline, hands or scalp, the body is sent into regeneration mode.”
There is no data presented, nor any I could find in PubMed to support these claims.
I have informed both the FDA and the FTC.
Hi there
Please help me i m suffeing from bulbar mnd since early 2013 can stemcell help thanks appreciate your reply
Hi would you have an updated link to the stem cell clinics database. It appears to be broken. Thanks for the great research on this subject. Also wondering if there are any clinics that are taking proper precautions with embryo stem cells. Thanks v much!
Has anyone been to the stem cell clinic in Manhattan N.Y for fat stem cells for copd.They take the fat from your belly and use it in the stem cell treatment.I want to go there but would like to hear from some one who has done this there. Please let me know .deegeardino@optonline.net
Noting that this thread has been for almost 4 years, I just hope if new information/breakthroughs are now emerging regarding the Stem Cell Therapy. My brother has a chronic Kidney failure and it is either transplantation or regenerative therapy. Hope one can update our knowledge on this topic.
Hi Omer,
Has your brother had any improvement? Did he go for any kind of regenerative treatment? I am very interested to know, as I might try stem cells for kidney disease too. Please let me know.
I hope and pray that your brother gets better.
Shahzy
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Sir : I have advanced Glaucoma and almost completely blind. I have a Shunt in both eyes to relieve the pressure. They are maintaining my pressures well.
If you could give me some feed back, i sure would be happy. It scares me to be blind. I am Roberta M. 62 years old.
meri age 30 hai mujhe disc degeneration diseases hai kya stem cells se iska treatmat ho sakta hai
Nice information
Paul and David.I finally have the information on the Clinical trial NCT02216630 for Copd.They sent me paper work on what they do. The trial last for a year and you have to let your insurance Co know even though you are paying for it yourself.They do the Adipose Derived Stem Cells by liposuction.the reason I was having a hard time getting them they were just getting set up.I talked to Duncan Ross and he explained everything to me plus they sent me the paper work on the computer which I printed out to take to my doctor because they want him to do some of the testing so I don’t have to go into Manhatten N.Y. all the time.The Official Title is A Open-label,non-Randomized,Muli-center Study to Assess the Safety and Effects of Intravenous Impantation of Liposuction Derived Autologous Adipose-derived stem Cells in Subjests with Chronic Obstructive Pulmonary Disease. The phone number for the trial is 305-454-7836 there is another number on the trial site 844-707-2673.I am going to make a appointment with them in June, if some one goes there I would like to know what they think and what kind of Parking they have because it is N.Y.They have the trial in other places-Illinis,Nevada,New York,North Carolina,Texas,Costa Rica and Nicaragua.The trial is Sponsored by Kimera Socity Inc.if anyone goes there before I do please let me know.deegeardino@optonline.net
Does anyone know if stem cell therapy helps in parkinsons patients
Hi Paul, I enjoyed this post a lot and thought it is very accurate (scientist myself, although not for stem cells). Since I read another article on this Wales-based cell therapy company, just wanted to add that I find your comparison of cells as drugs very accurate and good to understand for the implications of stem cell treatments. Btw, here is an excerpt from an interview with this company and they also come up with a very similar comparison, i.e. stem cells as medicine. I thought this might be interesting for some of the critiques here.
“Our vision for the company is to develop medicines for life-altering conditions. The type of heart failure we treat is very much life-threatening. In our trial we’re treating people with a life expectancy of less than a year.
“So the market potential for our drug is probably in the hundreds of millions. But that’s at least two years away from launch and probably five years away from peak sales.”
CTL is developing two techniques for treating patients, as Mr Morgan explained.
“One is to create a pool of stem cells that can be injected into the patient, [then] there is the rejection problem because they’re not your stem cells.
“The other avenue we’re pursuing is where it’s your own stem cells that are taken from your own body and are then manufactured by our technology. You get your own cells back and then there’s no rejection problem,” he said.
Mr Reginald added: “We’re able to offer cells off the shelf just like a normal medicine, we’re also able to take a patient’s own cells and grow them to a number that would be sufficient to be able to treat the patient.” ”
Since the people working with stem cells call them medicines (as the FDA would, too) and as stem cells are future money makers waiting for a billion dollar market to emerge, patients totally need to be alert and careful when considering such techniques..
Thanks for sparking the discussion on this important topic and keep up the good work, Paul!
Paul, thank you for the time you dedicate to updating people on this website.
Do you have any updates on the fda involvement in regenerative orthopedics? Did the ruling against Regenex in 2014 only apply to cultured stem cells, and not the same day procedures (from bone marrow and fat) that are popping up all over the US? If so, do you know of any ongoing investigations into these same day procedures?
In regards to the risk of “something else growing from the stem cells years down the road,” I would think that after decades of stem cell treatments that we would have heard more about this by now. Aside from, WOMAN GROWS NOSE ON BACK! (after stem cells from her nose were place in her spine…), I have not come across much in regards to this risk. Do you have any information to share?
The reason I ask is because I practice pain management. I spend all day talking about nutrition, exercise, sleep, postural awareness, and overall health – but at the end of the day medications, injections and other procedures are still a part of my daily routine. The discussion about regenerative medicine is becoming more and more popular, and I like to keep my patients well informed. Thank you for any help.
Hello. I have Rheumatoid Arthritis (RA) and I am considering stem cell treatment to hopefully reduce my joint pain. Has anyone heard of any success stories and results of having such a treatment?
For David Seymore please let me know what NCT stem cell you went for. Thank You. Dee Geardino
Deegeardino@optonline.net
Anne thank you for your email address ,I will write to you today.Dee
for David Seymore what is the NCT number is it a clinical trial? Is it NCT02216630 or NCT 02645305 ? I have been try to get information on a NCT.is there a way we can e-mail each other on this site.I have copd and want all the information I can get from people trying to get stem cell for it. Anne please let us know how your mother in law makes out.Is there a way to e-mail David and Anne? Dee
Feel free to email me at gracie167@gmail.com… Anne
Just an update on y mother in laws treatment at the lung institute. We completed day one of the venous treatment at the lung institute. They are very professional and thorough. They put is up in a very nice Hyatt place hotel and made my mother in law feel completely comfortable. She was anxious before the first day but now she is excited. It’s a very simple procedure but they take the time to go through each step as it occurs. She feels a slight relief which was to be expected after the rich plasma that was put back by IV. We have today and tomorrow left and will be back in 3 months to do another session since she has severe copd/ pulmonary fibrosis/ interstitial lung disease. So far… It has been nothing but a positive experience. Will update how she feels along the way.
has anyone been to the Rengen Center in the Dominican Republic for stem cells for copd.They do 3 treatments bone marrow plus fat plus blood all at the same time and it is done in a hospital there not a clinic.I am thinking of going there or the Lung Instit in Pittsburg Pa but they will only do the blood stem cells and bone marrow plus fat plus blood stem cells is much better so I have read about.At Rengen-center.com you are there for 3 days.There is a trial for stem cells but I can’t get any answer from them maybe you can paul.The trial was on clinicaltrials.gov and there are to ID # NCT02216630 and NCT02645305 for copd and one place is in N.Y. which is close to me in N.J the trial is run by Duncan Ross contact Duncon Ross Phd infor@duncanross.net. Paul can you find out about this trial I get no answers.i would also like to know more about the one in the Dominican Republic if anyone has been there I spoke to the Doctor there and he is really very nice and convincing.Thank You Dolores G
Hi Paul, can you please tell me what you think about http://www.itrt.es/en/itrt-tea.??
I already left some links for you in my previous comments ? Are these guys for real , treating knee oa and disc degeneration ?
@lo,
I don’t have enough information on that group yet.
Paul
Hi,I was a runner for about 40 years, both parents had double knee replacements. Not able to run anymore and was told 2 years ago that I’m now bone on bone. I still continue to work out daily, when I’m on the eliptical I feel zero pain, when I get off I can hardly walk the rest of the day. I be been told by several doctors I need replacements( which I’ve been fighting for a long time). Starting to do stem cell( bone marrow) research. Any guidance you can give me would be greatly appreciated. I don’t want artificial knees, but I’m thinking I’m too far gone for anything else.
After doing extensive research… I will be taking my mother in law next week to the lung institute for stem cell treatment. I have had nothing but a good experience so far in dealing with them. She is in a situation where she is getting much worse by the day and our family decided that it is worth trying. I will send along any info as we go through the process.
As I read the posts above, I see a lot of People with questions about the Lung Institute which has clinics in several areas including Scottsdale, AZ and Florida and elsewhere. I do want to make it clear that my post above does not in any way mean that Willie Nelson had his procedure at the Lung institute as I don’t know that information and believe that he DID not go to the Lung Institute but rather a hospital in Texas. But where he did his procedure is still a mystery to me!!!
That being said, if anyone does have any information about the Lung Institute, please do do do share it with us as there are several of us considering going there!!!
Thanks tons,
Linda
@Linda
Here are some past posts for background on this clinic, which in my opinion give reason for questions and concerns about the Lung Institute:
https://www.ipscell.com/2015/11/some-patients-unhappy-with-stem-cell-clinics/
https://www.ipscell.com/2015/04/lunginstitute/
Regarding the Lung institute and the results for COPD, I don’t know about them but I do believe that stem Cells for COPD does work and am considering it myself and the only thing holding me back is the expense. I know Willie Nelson had Stem Cell therapy for his COPD and he is going strong!!!! Search for the interview that was done in Jan 2016 with Willie where Dan Rather interviews him, Toward the beginning of that interview Dan asks him how he is doing and he says he is going great. He talks about having the stem cell therapy and how great it worked for him and he says he would recommend it to anyone with lung problems. My friend knows Willie and said he had the procedure in October 2015 and his manager is going to have the procedure as well and another friend of his had it done and also got great results.
Mmm i just saw that they treat RA as well even though i did not see any of their studies involving a large number of people like on their knee oa trials
http://www.itrt.es/en/stem-cells-treatments/artrosis/rheumatoid-arthritis-knee-case-1
Hi Paul,
Thanks for the swift reply. According to their about us page, it seems their studies and treatments are funded by the spanish government and they treated over 500 patients for various conditions such as Oa and disk degeneration…to be honest I really don.t care who sponsors them , their studies were published on the first page of the journal “transplantation” …. They also have a lot of articles on nih.gov ( this is how i heard of them in the first place) and their results show ” cartilage regeneration” compared to pain relief or no other benefits…here is one of their clinical trial from 2014 , but they also have quite a few ones from 2015 with even better results…
https://clinicaltrials.gov/ct2/show/results/NCT01183728?term=msv&rank=1§=X4301256#othr
the head scientist is mr lluis orozco and the full team is here
http://www.itrt.es/en/itrt-team
Have you heard of any of them in the us ?
Their full list of scientific papers you can find here and many of their articles are on nih.gov (this is how i found them)
http://www.itrt.es/en/publicaciones/lista
What is your honest opinion about this institute ? They seem the real deal when compared to other stem cell companies offering selfwritten testimonials instead of real scientific data…anyways i.m just curious knowing if you guys know what other guys across the ocean are achieving
Paul, i have been reading a lot studies lately about stem cell terapies and i found a clinic in spain who has conducted several trials of knee oa regeneration using mesenchymal stemm cells…his resulrts are impressive to say the least and the public studies are listed on the website
http://www.itrt.es/en/publicaciones/lista
What do u think about this clinic compared to regennex and others ?
@Io, is this a for-profit institute?
I see so many people have asked about the effectiveness of stem cell therapy for treating muscular dystrophy but no one has responded to any of those comments. I also need to find out if this has worked with anyone at all and where. Any help in this direction would be appreciated. Thanks!
My view–I haven’t seen any evidence (data) that the offerings of the Lung Institute are proven scientifically to be safe and effective for what they claim.
I am considering taking my mother in law to the lung institute in Pittsburgh for stem cell therapy for her COPD. Her quality of life is getting worse and there is nothing else that I have found with any promise of hope. She isn’t a candidate for a lung transplant or any invasive surgery because of her late stage copd. For anyone who is going through it personally…this stem cell therapy gives a glimmer of hope for a better quality of life. Is there anyone who has received stem cell therapy for copd or either has any information about the lung institute?
I have a severely torn Rotor Cuff tear on my right shoulder and I am too old for this severe operation. I have a constant number 2 pain all the time and much more when I move my arm in certain ways. Is there any one out there that has had a Stem Cell shot for this condition and did it help ?
Don
Any idea when the FDA may approve stem cell treatments? 2 years? 5 years? Just a guess is most appreciated…
@Robin,
It depends on what you mean by “stem cells”. There are literally 1000s of clinical trials ongoing. Do you have a specific kind of stem cell and disease/condition in mind?
Best,
Paul
I have Stargardt’s Eye Disease, my doctor was doing clinical stem cell trials, he told me last week the Company decided to not continue phase two, but to work on Macular degeneration instead of stargardts…
@Jeff Muggles
Now, I am going to see another outcome of PRP. A good friend of mine has “water in her knee”. In the MRT the knee shows a little hole and the physician says, PRP could fill this hole. If PRP fails, a surgery will be necessary. Today she received her first PRP treatment. so in about 6 weeks I will know more about the outcome.
Or do you see any alternative treatment for her knee?
@Jeff Muggles
thank you for your answer. I think one problem is that nearly nobody is doing double blind controlled clinical trials concerning this question. The only study I found is this one: https://www.clinicaltrials.gov/ct2/show/NCT02189408?term=PRP+meniscus+tear&rank=2
The clinics/physicians who offer this treatment just say they have good experiences and offer this therapy. So there will never be evidence/clarity. This is not good for the patients.
I wish you a happy new year.
@Richie – hope you had a good Christmas!
As often discussed such articles provide no solid evidence that MSC are responsible for the proposed benefit (no control data or evidence of mechanism and n=1 is not statistically significant). I wonder how many MRIs show no recovery or only partial?
This could become an approved therapy if first assessed in controlled clinical trials, so that the right patient population can be identified, otherwise you end up operating on 10 patients instead of the one that gets the benefit and have no clue if that one will get an abnormal growth after a few years. That’s what these “volunteers” are risking – and are paying lots for it too!
However, I do like their statement on the proposed mechanism of action, “stem cells can do some pretty cool things, all of which are pretty revolutionary”. Probably need to work on that before applying for a clinical trial.
@Muggles
I just read the following article concerning our discussion, the article shows interesting MRI images
http://www.regenexx.com/stem-cell-cartilage-regeneration/
@David Seymour,
thank you for sharing your experiences with us
I entered and NCT for stem cells for COPD was told chances were about 65% 4 days later I am no longer gasping in the middle of the night. I do not know how it works but I definitely am better than before. There is nothing else out there at this time.
What kind of stem cells did you get and were did you go for them.Was this trial NCT02216630 by Dr Duncan Ross?
for all who may be interested
another promising/encouraging/interesting case report
http://edition.cnn.com/2015/12/18/health/turning-points-stem-cell-therapy/index.html?utm_campaign=Stem+Cell+Science+News&utm_source=hs_email&utm_medium=email&utm_content=24749678&_hsenc=p2ANqtz-9jgVR68XN-YJUZhj_BXDwBexGcSvlWzHMvolqzHP9ZYizE-naIAqB8DANkn3QRkxBFUBB2GKeCRmp2jEiXWhOsgdQvTA&_hsmi=24749678
@Paul
I just remembered that you have invited Dr. Centeno to a discussion under another topic some time ago.
In the comments above we discussed so much about PRP and avascular necrosis and a little bit about Dr. Centeno. The question above we could not answer was:
how high is the success rate for PRP-treatment concerning avascular necrosis?
Could you please ask Dr. Centeno to join this discussion and give us an answer?
Because I think he has treated many patients with this condition.
I have copd and I am thinking of going to The Lung Instute in Pittsburg Pa,I have tried everything else including Lung Reduction.I did my first Lung reduction on my right lung at the University of Pennsylvania in 1998 and it worked great for almost 10 years so I went back and had my left side done which helped a lot but not as much as the first one because my lungs had gotten worse over the years.Dr Larry Kaiser did my first Lung Reduction and Dr Joel Cooper did the second one in around 2011.When they do Lung Reduction they go in through your side just under the arm pit about maybe10inches,was in the hospital about 4 days and home.I did not find out about the lung reduction through my pulmonary dr I found out about from a little paper I have been getting for years called THe Pulmonary Paper I love this paper if there is something new for copd they will have it.So now I am looking into stem cell but still on the fence about getting it.This is the web site for the paper http://www.pulmonarypaper.org.One last thing if I could do the Lung Reduction again I would but that is out ,with as far as I could with that.I am just letting the people with copd know about another way to go if you pass the testing.If anyone has done the stem cell for copd please let us know how it worked for you and where you went.If I do decide to do this I will post it.
Dee G
Dee G, Ron B here, did autologous I V stem cell procedure @ Lung Institute, Tampa office April 2014. Came home to Okla. continued taking the stemtrition pills & glutathione/ albuterol treatments for six mo. I was @ about 30% capacity when I took the treatment, about 30% six mo. later, today, about 25% on 2 Lt. O/2, 24/7 today, slowly going downhill. Can’t say treatment helped, can’t say it didn’t. Seemed to improve a little bit shortly after but could not sustain improvement. Probably should have taken the full course of OTC supplements recommended but funds were limited at that time, still are. I still believe these type of treatments are feasible, to be fair to Dr. there still needs to be a lot of research into this therapy, as I think it has great potential. My therapy consisted of a treatment once per day spread over three days, then continue at home with nebulized treatment and pills for 6 mo. then reevaluation. Did not do reeval. as could not afford to take a trip to Florida at that time. At that time L I had only been open about six months and only had the Tampa location. An aside note: I think this therapy could be accomplished with better results if you did another round of treatments at three month and six month intervals. The fall of ’14 I got a “charge” of something during harvest and never recovered. The local yokuls wouldn’t, or more likely couldn’t do a lot about it except for the standard ” take two aspirin & mail in your $50.00″ diagnosis. I am currently doing evaluation for Lung transplant @ U.T. Southwestern, Dallas, Tx. However I continue to search for the less invasive stem call therapies to try before having to go see the “butchers” as I know “there aint nothing we can’t screw up with surgery”. As I said before I cannot confirm nor deny the benefit, but do believe there is tremendous potential here. To be fair to the Dr.s ,There are risks involved, there are real dangers out there, there are tons of stuff we don’t know, research is the only way we find out this stuff and FDA clinical studies are needed to find these answers. As of April of ’14, I was told, FDA does not consider autologous venous, adipose or other stem cells as treatment as such, supposedly under the “physician heal thyself” doctrine to be considered for coverage by the insurance companies. Any way good luck, feel free to contact me
@Bob
I would do so, too. I think this example shows how difficult it is to decide. Scientist often say in their comments, patients should not choose new stem cell therapies. But you must consider the whole situation. For sure nobody should elect a non proofed therapy with levity, but in any case you have to calculate the alternatives.
Of course, I would choose PRP. It is good to be sceptic, but in this case, PRP seems to be the best / only choice.
@Muggles, Goofy
But this is the problem for patients, what should they do? They know about reliable case reports in which PRP has helped/healed (in this example PRP, but there will be other examples concerning other therapies). The alternative to PRP in case of avascular necrosis is a big surgery with mostly just a medium outcome and some additional risks – for example they had to take some bone cylinders from the knee, so the knee may be damaged.
PRP seems to have no big risk and no big sight effects, but offers a chance – the convertible point is just how big is the chance that PRP could help – possibly a small chance, but a small chance is a chance, even, if it is a small one.
So, what would you advise to a patient in this situation?
Would you really recommend the big surgery without trying PRP?
Goofy – I never said other studies are worthless – on the contrary, experiments and clinical investigations are crucial.
I said that studies that report on single patients (n=1) are not statistically significant and without a level of statistical significance, health insurers and clinicians cannot advise patients that a particular therapy has a likelihood of success.
You mistake safety in medicine with a lack of openness – this is completely erroneous.
@Muggles
I don’t agree with you, no clinical trials don’ t mean that this therapy is worthless. I think the physicians (Centeno, Lox) see the outcome and so they know (hopefully), what they do/offer to their patients. There are no studies, so you can not know, if this therapy really will not work. Or do you have any own experiences?
Sometimes in science it has taken al long long time, until something new was accepted, just think of Darwin – how many years was he waiting …
I wish scientist should be a little bit more open for new therapies and just give them a chance.
@Muggles
Thank you, I will read it now.
Richie – here are the clinical trials databases I use mostly
http://www.clinicaltrials.gov
http://clinicalstudies.info.nih.gov/
http://apps.who.int/trialsearch/
http://www.isrctn.com/
https://www.clinicaltrialsregister.eu/ctr-search/search
http://www.centerwatch.com/clinical-trials/listings/
@Muggles
yes, this is really the crucial question? Maybe the trials are too expensive? I have as told above very good personal experiences concerning PRP. But of course maybe my brother was just the lucky one… There are still many questions. But until anybody has done trials I think nobody knows how good PRP really works – in my opinion 50% would be a good result…
Hope some day there will be trials and hope the study about PRP and meniscal tears will publish their results soon,
After all, it is still a difficult question for potential patients: to try PRP (with less sight effects and risks) or to have a big sugery, which is the alternative. So I think many people would try PRP, I would do it the same way.
You wrote “other databases”: Where can i find more databases?
@all
If anybody has personal experiences concerning PRP, please let us know.
Richie, Muggles, @all
I have personal experience with PRP. I received 7 PRP injections from the Steadman Clinic, Vail CO, in Feb 2016. At that time I had 4 injections in the right adductor, 2 at the right hamstring attachment and one in the right piriformis. After severe pain for 3 months, I started to go out of pain the fourth month. Thinking that it may have been the PRP injections that relieved my pain, I decided to have more injections done at the Centeno-Shultz Clinic , Broomfield, CO, in March 2017. I, too, had seen the success of PRP patients on the videos on their website and thought that a different doctor may get better results, especially one from the Centeno Clinic. I had PRP injections in the right S1 area, right L5-S1 area, right L5-S1 facet joint, right L4-L5 facet joint as well as in the right hamstring at the ischial tuberosity, the right adductor at attachment to the ischial tuberosity, the right intraarticular hip and the right glute med and min area. I have been contacted by the Registry that is supposed to follow up with Centeno-Shultz Clinic patients two times. I’m still waiting for results and for the pain to go away. My take away is that PRP does not work, at least not on me. My side effects were increased pain in the derrière in more ways than one and a much lighter pocketbook.
I had all this done due to a horse accident in Nov 2013 in which my right sacrum was fractured and I damaged the soft tissue all around this area. My desired effect was to be able to sit, exercise, ride horses and live the active life I had been living.
On to another subject—I’m concerned about the Right to Try law in Colorado for obvious reasons.
Richie – there are no clinical trials for PRP and avascular necrosis (compared to 124 using other therapies). I used the studies for orthopedics and arthritis for data, and other databases.
You can of course find some studies on the web reporting “amazing results” on one person (n=1), but nobody is going to publish studies where it didn’t work. So it may work sometimes, but is it 50%, 10%, 1% or 0.01%? This is what national health agencies need to know or they won’t pay for it.
If Dr, Centeno and Dr. Lox have amazing results, why are they not disclosed in independent, controlled clinical trials for all to see?
@Muggles,
I just looked on clinicaltrials.gov for clinical trials concerning PRP and avascular necrosis. I entered all these three keywords and I found not one study:
https://clinicaltrials.gov/ct2/results?term=PRP+avascular+necrosis&Search=Search
Do I make a mistake or are there no studies concerning PRP and avascular necrosis?
concerning meniscal tear I just found one completed study:
https://www.clinicaltrials.gov/ct2/results?term=PRP+meniscus+tear&Search=Search
But this study has not published any results, yet.
Which studies do you mean? How can I find these studies?
There are several physicians, who treat avascular necrosis with PRP and report a good outcome, not only Dr. Centeno. For example Dr. Lox from Clearwater, Florida, has shown amazing results together with patients on TV.
I am sceptic, but i can not believe, that this all is not true?
Bob – PRP is reported to be a mixture of growth factors and anti-inflammatory factors used to support tissue repair – but cannot regenerate new tissue from scratch. Hence, clinically it is mostly used in orthopedics, arthritis, sports injuries (such as rotator cuff Injury), burns and wound healing, but not in illnesses of tissue loss, like diabetes or Parkinson’s or neoplastic diseases.
A search on http://www.clinicaltrials.gov for “platelet-rich plasma” pulls up 187 studies – however, only a handful report the results of completed studies for orthopedics and none show significant improvements. It could be that the trials were badly designed or a number of things – in the veterinary field PRP is reported to be beneficial in 40% of cases (and horses can’t lie!)
Likely is that PRP may add some benefit to targeted physiotherapy and other supportive therapies – but I wouldn’t recommend dropping all other therapies for PRP alone, especially where there is a pathological tissue degeneration.
@Muggles, Richie,
very interesting discussion. Where and how can I read the controlled trials? What was treated by PRP in the trials? Maybe PRP works only in some conditions?
Richie – when someone asks you what the success rate of a therapy is, you cannot give any significant answer with an n=1.
Dr. Centeno showing MRI scans in his own webinar for his own clinic is meaningless without context and does not show that “patients were healed by PRP”.
As a scientist I go to clinicaltrials.gov to get data from controlled clinical trial results. The 5% comes from about 10 trials using PRP that have reported results – one showed about 5% benefit and nine showed none whatsoever.
There are certainly many reports from clinicians like Dr. Centeno showing “promising data”, but statistics show that either some people respond well but most do not – or that the benefit is generally very low on average.
One thing that Centeno’s Regenexx has done is track patient outcomes over years through a registry and publicly report on them.
In his webinar I attended a couple of years ago, he was candid about their mediocre results on hip arthritis.
In understand that retrospective data is inferior to a prospectively\ designed clinical trial, but it does represent a significant investment along with their claim to have published many scientific papers.
It would be interesting to see the opinion of a more qualified reviewer on their approach.
Given their claim to invest heavily in research, equipment, training and data analysis, the high cost may be justified.
Of course it is no evidence, but it is most likely that PRP is in this special case responsible for the recovery. Because the avascular necrosis exists for 7 years and was healed in about 8 weeks with PRP (backed by MRI scans). Before the PRP treatment he had no other treatment in the year before. As last (unsucessful) therapy attempt he received intravenous bisphosphonates one year before PRP, but it didn’t help him. So I don´t think that any other treatment could be responsible for the recovery.
Maybe my brother was just the lucky one, I don´t know exactly?
But I attended to a webinar of Regenexx which was given by Dr. Chris Centeno. Dr. Centeno reports the same in this webinar and shows several MRI scans of patients he has treated with PRP. These patients were healed, too, by PRP.
So I am a little bit surprised that you wrote, that only up to 5 percent benefit from a PRP-treatment. Do you know where I can read this study? I am very interested in this topic. By the way Dr. Centeno also reports that PRP could heal a meniscus tear.
@ Richie – I’m happy that your brother made a recovery, but this still isn’t a controlled scientific study to prove that the PRP was the cause of the recovery (see our discussion with the Nadal story – n=1 is not scientific).
From your description, I can also conclude that your brother needed long-term conservative therapies as well as PRP and ESTW and even here there’s no guarantee that any of these was the cause.
The problem a clinician has and patients like Manny asking if PRP works is that they want to know how likely it is they will recover. From your experience it is 100% but from actual clinical trial results it 0-5% because there are n=100’s of patients that had no benefit.
@Muggles,
yes I can, He suffered 7 years from this avascular necrosis. He tried some conservative therapy options. But his condition was getting worse. As last option he tried PRP together with ESTW (extracorporeal shockwave therapy). It was like a wonder, he got healed. The success of this therapy is documented by MRI scans before the therapy, after the therapy, 6 month and one year after the therapy. (He got 6 times PRP and 6 times ESTW once a week, after this the avascular necrosis has disappeard, but there was still left a bone marrow edema. Because of the edema he received 4 additional ESTW-therapies once a week, and the edema disappeared as well.)
So I think of course this is just a case report, but the therapy has worked and who heals is right.
@Richie – your said “PRP has healed the avascular necrosis of my brother”
Can you provide clear controlled scientific evidence for this or do you mean “I believe” it was PRP that healed my brother? There’s a massive difference.
For profit stem cell “clinical trials” are still going strong on Cliniclatrials.gov years after clearly unethical, dangerous, and predatory behavior was reported. IRB information is still unavailable, not even the name of the organization. Apparently, these “clinics” use for-profit private contract companies for an IRB. This is nuts! Last year you had a post from the director claiming that there were new rules coming. Has anything, anything at all, happened?
Hey I’m looking to get stem cell treatment through Stem Cell of America has anyone heard anything about this company. I have Muscular dystrophy in search to slow the progression they offer fetal stem cells but I have to go over the Mexico border to get treatment. Please help any advise
Did you ever get treatment with stem cell of America in Mexico? I am thinking about it. I have progressive ms.
@Manny
PRP has healed the avascular necrosis of my brother, so I believe in this therapy. He was treated outside the USA, so I can not give you any advise. But in my opinion Regenexx seems to be good and serious. You should visit their homepage. Sometimes Dr. Chris Centeno is doing a very informative and interesting webinar, where he shows pictures of already healed injuries.
Hope you will get help.
I live in northern CA. Am looking into trying either PRP (platelet rich plasma) or MSC from bone marrow or adipose tissue for the regeneration of a lateral knee meniscus. Does anyone have any experience with this injury and these treatments, either at speciality clinics or with other MDs or ODs?
Does anyone know anything about two clinics, one in San Rafael, the other in Alameda, which offer these treatments? The first clinic is called Regenexx, the second Hemwall Center.
Paul…I hope you still keep track of this blog and will agree to resume answering at some of the queries? Has anything changed in the three years since this began in this field?
an hospital offer me a stemcell treatment using rabbut-cell, imported from swiss.
I am not sure with the offer. Can you provide me an advice
I am thinking about stem cell replacement at the Lung Institute inn Nashville. Have tried to research it but am not having a lot of luck. They also have clinics in Tampa, Scottsdale, PA. Do you have any info on them?
Dear Sir,
Please let me know if the treatment of Liver Cirrhosis is available through stem cell therapy.
Am also interested in this topic. Wish u the best. Did contact a stem cell clinic with locations both inside and outside of the USA . They were thorough in their medical history questions and their panel of physicians who reviewed my documents appeared to be honest and forthright in their appraisal and no one ever pushed me at all, They encouraged me to take time to research and thinj about all my options.
do you have any info on the LUNG INSTITUTE and there stem cell therapy
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Hi I am scheduled for a Stem Cell treatment to try to eleviate my symptoms associated with Menier’s disease, mostly the vertigo. I will be seeing a doctor at a Docere clinic in the US (I am from Canada) to perform the procedure. Do you know of any data that can support that Menier’s has been treated with Stem Cells? And not just Dana White (President of the UFC). The doctor states he has treated numerous people for Menier’s but I was looking for some other data not directly linked to this physician so I am properly informed of the chances it could help me.
Hello, I’m from Spain, do you know stem cell treatment works for a Meniers disease?
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GREED MOTIVATES ALL ASPECTS OF STEM SELLS WITH PHARMA, DOCTORS, F D A AND ALL ACTORS ENVOLVED BECAUSE THEY CAN NOT PATENT YOUR STEM CELLS. GET INVOLVED IN A CLINICLE TRIAL THAT IS FREE. ASK QUESTIONS THEN DECIDE. GOOD LUCK.
I am interested in starting a regenerative medicine program in my hospital. We are looking for adult adipose stem cells. I am curious about what other systems are out their for delivery of stem cells.
Respected sir …. I am glad that there are ppl like you who does all to spread the true message .. I am very very happy ..
sir I need help for my father who had cerebral infract on the left side of the brain currently he has speech disorder along with slow movement of his body … I have heard about dr alok sharma from Mumbai ..sir if you have any information about him. Kindly revert back .. as I need advice from you .. Thanks
Dr. Paul, thanks for the website. It is a very useful recource and start-point. From what I can see you’ve stopped replying to the posts but inthe hope that you will read this and will am posting a question of my own – In your considered opnion do you think that Stem-Cell treatment holds promise in the regenraion of Optic Nerve atrophies? I have Galucoma and am interested in knowing if there is a cure as I have major impairment of eyesight in the left eye. Do you think enrolling for a Phase 2 Clinical study being held in Pune, India on this is a rational decision ..? Regards, Rahul
I’d caution about a blog based on personal experiences. I have MS (long time) and hope that a stem cell procedure can halt or reverse 20 years of damage. Individual opinion is not fact-based, it is anecdotal and simply opinion. I want to see a blog or website with before and after results from MRI or similar. A good example of a bogus public opinion blog was the one supporting Doug Broeska and his CCSVI and stem cell combo therapy. Broeska claimed to be a doctor and had no such degree at all. He was running a sham operation and is wanted by Canadian authorities. But reading the opinions of the patients, his process was better than sliced bread. Except for the many not helped and still out $60,000.
There should be a good blog where people that have had stem cell treatment in the usa and can talk about the out come and were they went and the doctors that do this and the price.Is There one?
very good question, I would read such a blog, too
i have optic neuropathy through 5 detached retina surgeries. lost 95% vision in leftt eye. have been in conversation with beike in Bangkok. stem cell work?
Hi Mr. Reed, I am Ms. Hemalatha from India. I have suffered a central retinal artery occlusion last year and lost partial vision in my right eye. My optic nerve has also been badly damaged . I wonder if you underwent the treatment at Beike. If so, did it help you. Would really appreciate and be grateful for a feedback. Regards. Hema
Stem cells in other words are like magical raw material “master” cells that be me transformed into bone cells OR skin cells OR brain cells or any other of the 220 different types of biological cells. That’s pretty cool. This pluripotent property makes stem cells the ideal raw material for the body to use to repair various organs and tissues in the case of injury, damage or simply wear and tear. And it makes them potentially very useful for medical treatments that can restore and regenerate the health of bodily systems that contain cells damaged from disease. Stem cells are precursor cells they are essentially blank cells that can be turned into any other type of cell. They stay dormant until they are triggered to become specialized. – Stem Cell Cost in Europe
I’d advise a great deal of caution if you are looking into the stem cell clinics out there in the U.S. or abroad that claim to have treatments for stroke.I agree with you about my remarks doing a service.
Do you have a list of locations that offer stem cell injections for comparison? I have a 14 year old daughter whose right side of the brain did not fully develop in the womb, so I am interested in researching this form of treatment. She is unable to read, nor know her ABC’s, but highly bright in left side of the brain issues. I received a tetanus shot days before her conception, and had bleeding a 5 months gestation, so she may suffered a stroke in utero.
My wife has been diagnosed with FrontoTemporal Lobe Degeneration. Does anyone know of any clinical stem cell trials that she might be eligible for?
I had a stem cell procedure in march of 2012 m for ms. Helped immediately! Lessions on spine are gone brain lessions still there. Blood brain barrier is very hard to get through. Burning in legs was going same day and have not been back. Until FDA can figure out how to make money on this people will suffer financially and in health!
What kind of stem cell procedure did you have and where? Are your lessions on your spine really gone? Did your doctor take an MRI of your spine? My doctor told me stem cell therapy is illegal. Are you working for one of the clinics that perform stem cell therapy? If so you are misleading people who are very sick. Before you chastise the FDA you should back up your statements with facts. It’s not fair to give people false hope.
Hi Dr. Paul,
Has anybody heard about a stem cell therapy center for muscular dystrophy, in Bangalore, India? Any data available?
Would like any info regarding the Neurogen Brain and Spine institute for stem cell therapy in India, for my son with duchennes muscular dystrophy??
Hi…Paul,
Recently few groups have discovered VSELs (Very Small Embryonic like Stem Cells). They are saying that, VSELs are equivalent to Embryonic Stem Cells. VSELs reside in all adult organs, are very small in size. But very few say 1-2 groups report their results reproducibility.
Can you comment on that regarding VSELs on basis of your experience in Stem Cell Biology field..
Thank You..!!
Stem cells are not drugs when they are not manipulated or expanded. The FDA considers them drugs only when there have been growth factors or other compounds added to them. This is currently illegal. That is like saying blood donating is donating drugs. A blood product is as close to a category I can think of.
Those with MS And ALS should explore low dose naltrexone. I have personally seen a woman who was totally disabled go back to work. It does not work with everyone but is 20 dollars a month, no side effects, been around 40 years. website is ldnresearchtrust .org.
How about coming out of the school umbrella and see what has been going on in the clinical battlefield for over 7 years I have performed thousands of procedures with autologous BM and adipose stem cells and witnessed lives change for the better. We are there. It is time for the handcuffs of financial restraint to be lifted and allow physicians to do what thousands of research papers have been claiming. It works! And, it works with out any abnormalities for years to come. I would like to see the statements or papers that show it is not ready and the factual basis as to why it doesn’t. Without the laws of HIPPA, I would be so pleased in sharing with you hundreds of patients that have seen their disease halt, reverse, or in most cases diminish all together. And it is across the board in all specialties of medicine.
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I have to agree with Jennifer, I have had MS for 14 years now and I to have exhausted all of the FDA approved therapies which have not stopped but only slowed the progression of my MS. I have been a nurse for the past 15 years but have been out of work due to my illness for the last 5. I consider my knowledge of the healthcare industry greater than average, with seven years of college. I have been researching these stem cell transplants for some time now, and it really cracks me up when people say “we’ll, if they worked, don’t you think Montel would have had it done.” LOL. HOW DO WE KNOW HE HASN’T….. He could have had chemo, who’d of known, he’s already bald. Besides, it would go against all his health food preaching.
But on a more serious note. I have been communicating back and forth with Mexico, because I have been denied into all U.S. trials ( not enough flair ups in the past 2 years) because of being on Tysarbi. I have asked about their autologous bone marrow transplants. They don’t shut down the entire immune system but do use cyclophosphamide, and mannitol prior to adm. Bone marrow into menengines to enhance crossing the blood brain barrier. So in my opinion, and this is just my opinion, because my neurologist will not collaborate with me because I’m considering going out of U.S., I would think this would be safer than full body irradiation. My opinion is still up for debate
(admin note: this post was edited XXXX)
I have FSH Muscular Dystrophy and in the last few weeks I have learned about XXXX center. I have contacted them and I am doing everything I can to be a candidate and qualify for this procedure. I have a response and I’d like to share it, this is what I received back.
Thank you for inquiring about our services that we believe can be a help to you and your medical condition. Our affiliates at XXXX Center (Dr. xxxxxx) and XXXX Center in XXXX (Dr. xxxxxx) will be more than able to help you with your condition. (We) believe you are a good candidate for our SVF procedure. All our affiliates have the approximately the same pricing structure so there is no need in applying to all the treatment centers. If Dr. xxxxx or Dr. xxxxx do not return your emails please contact me and I will help you in your quest to receive a free phone consultation.
I left the doctors names out for respect purposes. I am just curious to what people/scientists/ or other doctors may think about this? does anyone know about SVF and if it is legit? has anyone had SVF and came back with promising results? I have seen videos on youtube about many patents receiving stem cells and their outcome they say is positive. One guy even said his Creatine kinase levels are back to average. what that means is before he went in for treatment his Creatine kinase levels were well over a couple of hundred. After his stem cell injections and to this day his levels are at a steady 74, which is equivalent to an average persons Creatine kinase level. for those of you who dont know, Creatine kinase levels are the breakdown of muscle in your body. You can check these levels with a blood test.
I just don’t understand. If your going to die anyway, what difference does it make to try stem cell therapy. Whole different ballgame when you are the one with the disease. In our case, ALS. You try anything.
I don’t think that it is scientifically correct to call a stem cell a drug. And there are many types of cell and many types of stem cell and even more contexts for such cells. I just don’t understand why one would try to put them all in the same regulatory bucket, let alone in the same bucket as “real” drugs?
Regulations should be reasonable. The law makes a fool of itself when it tries to fool nature by using verbal trickery.
“one scientist agrees that adult stem cells are NOT drugs, and another disagrees” ooops up top! It was late and my comment to you was waaaaay too long! HA! Sorry for my longwindedness!
Hi Jennifer. No worries. Thanks for the comments.
Some thoughts from me….
While bone marrow transplants, which are stem cell therapies, have been around for decades, other uses of stem cells for medicine are relatively new and there is a lot that we do not know. It is frustrating, but it also makes sense that there is going to be disagreement and even confusion amongst scientists, doctors, and patients. Our lack of knowledge and lack of consensus makes using stem cells as medicines a high risk way to go today. I hope that changes in coming years. I am a fan of the potential of adult stem cells.
I understand that if one has had no benefit from conventional medicine for a certain disease like MS that taking some risks could be appropriate. I respect where you are coming from on that.
But I think the potential benefit from the stem cell therapies being offered by clinics is near zero and the risks are very real even if poorly understood. Why? As a scientist who has been thinking about these things for a very long time, the reasoning offered by the clinics just makes no sense. Let’s take the case of MS. Transplanting adMSCs into an MS patient by IV is a common approach, but it makes no sense to me. Most of the cells will be dead or lodged in the lungs within a few hours. It is possible than basically 0% make it to the central nervous system. MSCs also are not known to make cells of the nervous system. Could MSCs “modulate” the immune system in a way that could help MS without even entering the nervous system? I suppose, but I’m not aware of any proof of that. They could also make MS worse by triggering autoimmune reactions.
I also think that many clinics and doctors offering these “stem cell” therapies are predatory and take advantage of vulnerable patients. Why? Very simple. To make money. These folks are not Robin Hood out to help you simply for the goodness of their hearts.
Finally, in my opinion the widely held view that there are “teams” or different “camps” in the stem cell world is mostly inaccurate. The stem cell researchers I know who are my colleagues most often work on multiple types of stem cells and like them all. For example, my lab works on adult, embryonic, iPS, and cancer stem cells.
Good to hear your educated opinion Mr Knoepfler! Thanks for the reply. 🙂
Hi. I am norwegian, and i have heard that in sweden they have very good results with stem cell treatment and MS. Norwegian pasients are ver angry because if they go to sweden, they have to pay the treatment themzelves. Very expencive. Good luck. P.S. I AM LOOKING FOR STEM CELL TREATMENT TOO, having copd/emphysema.
I think I have nothing to lose, except the money.(will have to sell my house).
Paul, even though I don’t agree with you on most of your points, I very much appreciate how you are always kind in your reply to skeptics and criticism. Having to come to the point of seeking alternative treatment is no fun…What has happened with the MS patient in general is that we’ve totally lost trust in the neurologic approach to MS and FDA approved MS drugs. The drugs don’t work. The drugs are not effective. The drug studies are turning out to be wrong. When you’re newly diagnosed you tow the line and do everything your doctor suggests. Once you’re about 5 yrs. into the diagnosis and your body starts rejecting the maintenance drugs, you go to the internet and start looking for answers. If you’re a part of a support group, you start talking amongst yourselves about how the drugs are failing you as a patients. Most MS patients I know have tried at least 3 different maintenance drugs with huge rates of failure! I’ve NEVER heard even one MS patient brag about how awesome their maintenance drugs is! We think they suck! MS is a unique bugger! No known cause, no known cure, no effective drugs…It kind of sets us apart in the disease community. Ask 10 different Neuro’s their opinions, and you’ll get 10 different answers, as to what MS is….There’s no collective opinion. Lot’s of theories, but no answers. So with all that being said the MS patient has become a professional risk taker. We’ve tested and tried all the black label drugs, the interferon’s with horrible side effects and the new pills that can cause PPML and death. Since we can’t rely on the data and the studies that the FDA put out, we look to personal experience. We look to others who have been successful in an alternative treatment. Many patients as you know, have success stories from becoming medical tourists. These are the ONLY success stories we are hearing. The internet has connected a whole generation of MS patients. Collectively we know the FDA approved drugs don’t work. We don’t mind taking a chance on an unproven treatment. Some people operate their lives from a “show me the proof” kind of mentality. ALL the MS patients that I know operate from a “this is my experience” mentality. I’ve never been a risk taker in my life, but unfortunately “our” FDA has turned me into one….Go figure! I’m new at all this chatting to scientist online, and commenting on articles…one thing I find interesting is that there is absolutely NO consistency in the “science” end of this either…One scientist agrees that adult stem cells are not drugs, and another agree’s! It’s not much different then our doctors. It makes it really rough on the patient! Once again it makes us rely only on our collective experience as patients. I wish the scientists and doctors could come to a meeting of the minds, but I’m sure that’s wishful thinking. I’ve been a fly on the wall in most of these online groups and it’s quite entertaining! It’s like you are all on teams…The adMSC team and the Embryonic team and a few others that I forget the letters to….Well I’m on the patient team and to be quite frank, we’re loosing!
I am a patient who was treated for MS then my diagnosis was changed to NMO. That was 8 years ago. At that time I was running 1/2 marathons and stumbling. I can now barely walk without an aid and even then it is difficult. I have had 2 major falls resulting in broken bones and hospitalization and I simply don’t know how much longer I can continue to “power through”. I have been investigating stem cell therapy and spoke to a clinic in Florida that uses tissue from fat cells. It is very expensive and will take everything I have to get the therapy. If it works it will be worth it. If it doesn’t…I will be financial sunk and likely headed toward a permanent wheel chair and need assistance for DLA’s. I know that you cannot offer advice however have you heard of any successes in this type of therapy to reverse demylination? Any information is greatly appreciated!
Melanie. I am considering adipose autologous mesenchymal stem cell treatment…I have MS and OA. Would love to hear how you are fairing thus far and if you did any treatments. Apreciate your sharing, Jan
Paul,
Thanks for the post. As we have discussed, the FDA (and EMA) have both established pathways to bring certain treatment/products to market without official “approval”. I don’t believe the language you’ve chosen to use leaves room for this completely ‘compliant’ category of treatments/products.
–Lee
I have herd many opinions most of which was to be optomistic and cautious about stem cell procedures. Does stem cells protect or help revese someone who has very minor hearing loss.
I was hoping stem cell would cure my OA in my hips
am i crazy??
You are not crazy, Linda.
I think stem cells have great potential for OA.
However, most of the experts I know who have no financial interest in selling you a treatment do not believe we are there yet. We need another 5-10 years.
So, you do not know ONE person who has been successfully treated on thier hips with OA?
Unfortunately, none that I am convinced as scientist that actually worked.
I do believe that OA is one of the most promising diseases to be treated with stem cells, but it’s taking time to figure this out.
There are however, 51 clinical trials listed for a search for “arthritis” AND “stem cells”. Check it out here:
http://clinicaltrials.gov/ct2/results?term=arthritis+AND+stem+cells
My best wishes to you!
Paul
The key question is what does one mean by “actually worked”. Here are a few Pub Med refs that seem to indicate that some improvements have sometimes been achieved for OA.
http://www.ncbi.nlm.nih.gov/pubmed/18038395
http://www.ncbi.nlm.nih.gov/pubmed/17002893
http://www.ncbi.nlm.nih.gov/pubmed/20458744
http://www.ncbi.nlm.nih.gov/pubmed/21510531
http://www.ncbi.nlm.nih.gov/pubmed/20392971
There are more similar publications… and they often used approaches that seem similar to some of the clinical trials to which you refer, Paul. (I’m working on the assumption that Linda might be interested in what results have been obtained already…)
Perhaps it’s too much to expect that stem cells (or drugs?) can ever be a bullet-proof cure-all for OA. You’ve got to ask what caused the OA in the first place — and that also seems like another nontrivial question… and may require other modes of treatment.
Frankly, I’m impressed that there is even an outside chance of partial fix.
I had an umbilical cord stem cell transplant in China in 2008. Unfortunately I did not see any change in my condition, but fortunately I did not have any side affects. My issue is a stretched cord at T7-T8 with tethered spinal cord syndrome.
My issue with the industry is that reporting on research progress is inconsistent. I hear about new potential findings then zero after that. As much as we hate big pharma, there is an incentive to produce drugs and get them to market unlike progress with developing treatments using stem cells.
What is your opinion of stem cell treatment for autism?
Specifically expanded/non-expanded donor mesenchymal cells and CD34+ stem cells?
Thanks for your feedback.
Celine,
Thanks for the question. Unfortunately from what I know there is zero convincing evidence of this kind of approach helping autism.
I have advanced COPD. I am searching for an autologous stem cell clinical trial in which to participate. Can you help me?
Randy, I’m not aware of a stem cell trial for COPD. I wish I could help. Paul
StemGenex and The Lung Institute are doing clinical trials for COPD. However, patients pay – I’ve heard pricing from $8,000 to $13,000 for one treatment.
I have never heard of patients paying for clinical trials.
http://clinicaltrials.gov/ct2/show/NCT02041000?term=kristin+comella&rank=2
I am a 52 year old female who, 2 years ago suffered a stroke(right sided cva with left sided hemiplegia) after heart surgery to replace my mitral valve. Despite 12 weeks of intensive therapy in a rehabilitation hospital and on going daily physiotherapy i still have no functionality of my left arm and can only walk slowly with the aid of a hiking pole. Could stem cell treatment help me at this late stage?
Gail, I’m not sure I have a good answer for you, but to my knowledge there are no FDA approved stem cell therapies for an injury of this kind. I’d advise a great deal of caution if you are looking into the stem cell clinics out there in the U.S. or abroad that claim to have treatments for stroke. As far as I know there is no good science supporting the safety or efficacy of any of those. Talk to your personal physician and if considering a treatment, ask to see data or publications. My best wishes.
I KNOW YOU WROTE THIS TWO YEARS AGO – I HOPE BY NOW YOU’VE ALREADY GONE FOR STEM CELL
The FDA represents just over 300 million people. The world has about 7 billion people. Without even getting into debates over corruption, money, treatment, etc, surely it is obvious the FDA is only avery small piece f the puzzle.
Paul,
What are your insights on Autologous Stem Cells.? I have the occasion to work with a physician currently conducting a clinical trial here in southern Nevada. What are your thoughts?
They’re your own stem cells – they’re harvested from you – unless you have a severe blood condition, your blood can be harvested to help cure you.
I am a doctor yes a real doctor stop with the all doctors are in it for the money all people need money to support their families and in most cases mean well train for years and work brutal hours at huge legal risk.are there bad doctors of course there are bad humans in any positions be it church government law etc. It’s all fun and games until you are sick at that point your opinion of doctors will change trust me……I am a doctor….anyway I have a horrible condition called idiopathic polymyoneuropathy hyperreflexia severe muscle pain and fasiculations sounds like fun.Nothing has helped I would sign up for just about anything and hope stem cells can help
Doctor, I am recently diagnosed with ALS, looking for something postive in the USA or Canada concerning stem cell trials or treatments. I view the FDA as in the pocket of big Pharma in much the same way that the NTSB is in bed with the airlines or for that matter our Congress is corrupted by various lobbying groups and PACS. Good Luck with your search for a real answer, I certainly know that not all doctors are in it for the money, OMG ! My primary neurologist is great , but so overworked and bogged down in paperwork , I do not envy him at all ! He is my hero !
Bill, you have my best wishes on your health. There are a lot of people out there working on stem cells including on hope for ALS, but unfortunately this all takes time…years really. I don’t have ALS so I have never been in your shoes, but I am a cancer survivor of a very serious malignancy. So far I’m doing well, but I know what it is like to be a patient, and us scientists/doctors saying we need more time is frustrating. But you are right there are a lot of heroes out there doing their best sometimes under difficult circumstances to make a difference.
Thanks for your comment.
Paul
Hey Doc, you posted this two years ago – I truly hope you’ve gone for Stem Cell by now and are no longer suffering!!
I am watching diabetes destroy my family. I saw my doctor doing his best to fight it as all his family is diabetic. So the disease is a bad one, I am taking a chance a new procedure will either stop it or weaken it. Also about any other disease. As long as the side effects aren’t worse than the disease, give it a try. And be positive about it, positive attitude is a medicine.
Doctors abroad are in it for the money, of course. But, doctors in the states are also in it for the money. The FDA is just in the hip pocket of Big Pharma. Too, many drugs and been put out as safe and later people are dying from them. As adults we should have a little more freedom to make our own health decisions.
If people die from so called “safe” FDA approved drugs, imagine what could happen with “unsafe” drugs.
I am a potential patient doing research. Your remarks about stem cell providers are a far greater disservice to the public than the services of probably 98% of the doctors you deride.
How dare you presume to know that the motivation of every doctor is purely financial? My life was saved in the 80’s by courageous doctors who were hounded out of practice by the FDA for providing treatments that are now mainstream.
Doing the work that you do, you are too sophisticated to be ignorant of the actions of the FDA in serving Big Pharma and Big Medicine at the expense of the patient. The only possible explanation for your statements is your collusion and/or your financial dependence.. Your statements betray you.
Dear R. Jameson,
You are very wise as a patient to be doing research on possible stem cell treatments before getting one.
I disagree with you about my remarks doing a disservice. I also have not derided anyone, particularly not any real doctors.
It is true that the FDA has a culture of caution that some might argue slows movement of research to the clinic, but it also generally does a good job of keeping the public safe.
I have no financial interests that you allege.
i have a ef of 35% and was doing all kinds of research on stem&genetherapy to repair damaged tissue after my heart attack in 2011.i hade a widow maker but they didnt have to paddle me i was awoke until they put the stent in me.and afterwords since then i havnt smoked a cigeratt and its 2014.plus i changed my diet and i still work on cars,ride bikes.walk alot.so when my dr told me he wanted to implant a icd and me being only 42 at the time got a second opinion. and that dr told me im five to ten yrs my condition can worsen.and an icd comes with life threatening after effects.so iv’e been trolling unuversities for clinical trails and iether there finished or havnt started recriutment and what i dont understand is when im walking,or excercising,im not out of breath and my blood pressure is 130/77 with a resting heart rate at 58 or in the 60’s and i just dont feel sick as he claimes i am.but one thing about the second dr that i didnt like about the first is,that when i told him i didnt want a icd,he said thats all right im not gonna pressure you,we have other methods we can use to help.but the first said i needed it right away. which he scared me went into a real depression.and im still depressed.even after my echo stress test my new dr.told me my ej hasnt changed after a year its the same 35%please if there are ways to make your ej fraction go up?plus he took me off metiprol to cordivilol.which is better?
I am doing some research in hopes of avoiding a total knee replacement (TKR). I have extreme osteoarthritis and am bone on bone with no meniscus. I have friends who have had successful TKRs with no problems and also several for whom it has not gone well (understatement). It’s a big operation and with an unpredictable outcome, and it scares me. My first forays into for-profit stem cell clinics have been alarming. Their websites are so obviously tying to sell you something, many are full of misspellings and bad grammar, and the individuals I have talked with can’t answer basic questions. But I also see the testimonials and have read glowing articles in AARP and elsewhere about how many people are getting successfully treated for arthritis and avoiding joint replacements. Here is my question: Are there any for-profit clinics in California which are run by competent, professional physicians who are knowledgeable in their field? I am willing to risk $5-$7K on a fee for service procedure if it offers even a 50% chance of avoiding TKR surgery. But I don’t want to encourage or support bad actors, and I certainly don’t want to run the risk of a worthless or botched procedure. I just don’t think there would be 100 clinics in California if they were ALL charlatans pedaling snake oil. I feel like the truth about these clinics must be somewhere in the middle, and I’d appreciate feedback on who the more reputable operators are. Thank you.
Did you get an answer?
I too am looking for an alternative to TRK. I’ve spent 6 hrs today reading various articles/blogs on stem cell, and I still come away feeling skeptical. When doctors/clinics are advertising on tv like they are selling a sham wow, I’ve got to be very skeptical.
RIGHT ON!
Having worked in the medical field for 20 years I can can appreciate both sides of this issue. However, most doctors and healthcare workers are in it to help people, they don’t make as much money as they used to anymore.
And also having a daughter with MS I would love to have stem cells be approved by the FDA and be a hundred percent effective for her.
My issue is this, if the FDA is so up and aboveboard why don’t they approve anything in the wellness industry?
Why is it that Naturopaths and Alternative docs don’t get as much credit as MDs? Why is it that vitamins and minerals don’t get paid for by insurance? Aren’t all those things considered being proactive and preventative in an effort to prevent a pre-existing condition??
Let’s face it, the heads of the FDA and the Agricultural Department who bring us GMOs and the like, have interchanged Chiefs many times.
Politics reigns, corporations triumph over people and it will never end as long as there’s money and power as the motivating factors.
I had a stem cell transplant, also known as HSCT, in Chicago by Dr. Richard K. Burt at Northwestern for my autoimmune disease. Dr. Burt started this about 20 years ago for MS and its a trial study, which is FDA approved. My disease was CIDP, which is much like MS and I have been in remission for 5 years now. I have had no side effects from the treatment and I am living my life again. Call Dr. Burt, look him up online, and see if he can help your daughter. There are also numerous Facebook group pages out there for HSCT to get more info.
I think you are talking about this trial: http://www.bloodjournal.org/content/bloodjournal/102/7/2373.full.pdf
It´s an interesting Phase I but it is not an approved procedure (yet) and there are many optimizations to be made due to side-effects. The procedure is very aggressive in terms of immune cell ablation with the risk of infection etc., but with some more trials it should be improved.
But I would not recommend folks on here go to any clinic and ask for Dr. Burt´s procedure, especially children. It may take a few more years but then the 5 year survival rates will be better.
It truly amazes me how websites such as this one is still not yet shut down because of its completely misinforming data on what stem cells are and what role they play in actually saving people’s lives! FDA is in bed with the Pharmaceutical, they have been for decades, They have approved thousands of ‘legal’ drugs on the market which has resulted in millions of deaths around America, through prescription drugs. Therefore to say stem cells are drugs is a complete and utter nonsense, it is an organ transplant. It has NOTHING to do with FDA or being a drug. In fact the FDA have persistently tried to shut down all stem cell activities as it threatening their playground of manufacturing hard drugs and keeping people sick, as opposed to treating them once and for all. Wake up people!!!
I think we are all awake here.
Some scientists are also concerned about the out-of-control marketing of unproven therapies and products…
http://www.nature.com/news/don-t-market-stem-cell-products-ahead-of-proof-1.13389
any help for optic nerve neuropathy caused by det. retina surgeries-5. optic nerve was damaged and have just glare in right eye. no sight to speak of
I agree with you. Yes, doctors are in it for the money, but show me a doctor in the states that is NOT in it for the money.
There are a vast number of my colleagues in Family Medicine who truly care for their patients and are practicing medicine in an unsubsidized field because of that care. Yes, we make more than a factory worker, but the time and cost of medical training require some added compensation.
I volunteer at a free clinic for zero pay in Kansas. It is staffed by physicians and nurse practitioners who are retired or working extra time after hours from their usual jobs. There are hundreds of such clinics across the country and thousands of other situations where physicians donate their time.
Totally agree with you Dr. Freeman. Many doctors are working for less money than years ago, have mounds more of paper work and are forced to see more patients a day.
It is true that the FDA is approving drugs that are harmful but the approval is not always by the actually reviewers who have often pleaded to not approve a particular drug. The pharmaceutical companies appeal and somehow mysteriously the higher ups approve it. The drug ends up harming people even causing death just as the reviewers had stated. My only hope is that someone will stop this ramming thru of approvals over the protest of the reviewers of the drug themselves. I have often questioned if the pharmaceutical companies go to their congressman and claim this is a very important drug and force them to contact the FDA.
If the Doctors are working for less money ( and not all )…they have no one to blame but the insurance companies. I actually had a procedure and told them I was un-insured and they gave me a quote for single payer – walk in. It was cheaper then using my high price insurance. Thanks Obama !!
Stem Cell treatment seems like a great thing, but its like finding out who’s telling the truth and whos not. Consumers always get screwed in the end. Especially in Florida
I AM INTERESTED IN A BIOMEDICAL RESEARCH FIRM IN HOUSTON, TX. FAMILIAR WITH CRISPR USING UNSPECIALIZED STEM CELLS, P L S WITH DYSPHAGIA. LOST MY VOICE
usa a capitalist country and so the citizens are all in for the money. the whole system revolves around money.so i cannot show you a doc who is not in for the money
Vanessa: I agree with you. The FDA is perceived to be the “protector of our health”. I am presently waiting on the FDA to declare our autologous stem and regenerative cell processing “minimally manipulated” so we can finally offer commercially available autologous stem and regenerative cell laboratory products to patients of US physicians and surgeons across the United States at a cost perhaps 50% or less of the cost for overseas treatments. Our government should encourage an American enterprise offering state-of-the-art technology and therapy to our US citizens that will improve health, create US jobs and help decrease our health care costs. This site is a disgrace. The truth is that researchers extrapolate hundreds of billions of dollars from taxpayers to conduct experiments, create drugs that all have harmful side effects and charge extreme amounts of money for these drugs with harmful side effects. Have you ever heard of FDA APPROVED drugs that are removed from the marketplace? Have you ever listened to the TV ads where the side effects of the “wonder drugs” are worse than the disease? I defy any person to establish that the use of your own unexpanded, “minimally manipulated” stem cells that are transplanted into your own body has proven to cause any negative side effects.
Dr. L
Dr. L,
You state the reasons why we are all hopeful for regenerative medicine. we want cellular therapies that cure and repair. Trouble is we are not there yet. Throwing some adult stem cells into to body hoping they’ll do something positive and not cause cancer or other problems is irresponsible medicine until we get more data back on safety and efficacy. we all would like the FDA to move faster- hopefully they will. but grassroots medicine leading to experimentation of desperate patients at the doctor’s office is no way to go and is already leading to multiple deaths that could have been avoided.
“Throwing some adult stem cells into to body hoping they’ll do something positive and not cause cancer or other problems”. You are so right. I am a cell biologist, we culture the stem cells in dish and are trying to induce cell differentiation into different types of cells by adding different growth factors and so on, Not all stem cells will listen to what your ordered. As the human body, injection stem cell into body or blood really are big risky even if injection the cells are the safety under FDA control condition, It maybe hope to get new organs? how do we know those stem cells only repair the injury tissues not format cancer cells or some unknown cells? I think if stem cells were hope to cure or treatment most diseases, meaning it is just dreams for comfort the very illness patients.
Scientists still need working hard on this field and it will take at least a few years, I think.
U can’t afford dt hate on it
Dr. L and Vasessa should stop using the names of their goats as monikers
We are actively seeking stem cell treatment for my father. He has asbestosis and as a result has begun to create pulmonary fibrosis. Please HELP!!!!!!!!! He is 63 and otherwise completely healthy. Please, please, please help.
Consider a lung transplant. Stem cell treatment won’t get the asbestos out of him
President Trump!!
Are you listening!!
At all??!!
I’m praying for you most empathically!
???
Ha, who/what are you praying to and what are you saying as you pray/the hoped outcome?
SAW where they were putting miniature tubes into the blocked airways past the obstructions. Experimental Im sure but it worked. Dont get upset , only makes it worse. Believe.
I do wonder what the agenda of the FDA really is – if they and the pharmaceutical industry can’t charge you overwhelming prices to use your own blood and bone marrow to heal you; if they can’t keep you strung out on all these maintenance drugs like warfarin, etc., then that means they are going down the toilet. None of their warnings are real, because too many people have now used the procedure who have had major terminal conditions and are living WELL AND HAPPY. I think the FDA should be investigated. The President opened the way for Stem Cell Therapy in 2008 – and the FDA is still dragging their behinds on this. Time to fess up and stop lying to the people – YOUR OWN STEM CELLS ARE NOT DRUGS – So stop trying to freak people out. Stay Blessed
I completely agree, the guy above most likely is on big pharma’s payroll, and the FDA couldn’t be more corrupt. To prove my point look to the United States to be one of the last countries in the future to approve stem cell treatments. The FDA will kill stem cells as long as they can, because their corporate puppets, and most people know this.
The people that work at the FDA are not corporate puppets but somehow as I said above that drugs get approved against the FDA reviewers protests that they should not get approve. I look to the Congress folks from that pharmaceutical area. My thoughts have been for many years that the pharmaceutical company goes to their Congressperson and claims their drug is absolutely needed and miraculously I gets approve by officials above the drug division level.
Thank you, i m totally agree with it. Nobody can control its proliferation. they are not studied enough. Many peaple died after such treatments with stem cell especially after the rejauvenation injections !