Patients guide to treatments

Updated for 2016. Top 10 list of important, easy to understand facts for patients about stem cell clinic treatments.

For better or worse, I am in the unique position of being a stem cell scientist and also a former cancer patient. Looking on the bright side this gives me a unique perspective on things compared to many of my colleagues.stem cell logo

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 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 for 2016 as some things have changed in big ways in just the past few years. 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.

1) Stem cells are often essentially a type of drug and possibly permanent in your body after a transplant. Yeah, 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 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 cells treatments will have side effects. Not maybe. Definitely. Our hope is the side effects will be relatively mild. 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 approved by the FDA for use in the U.S. consists of versions of 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 in 2016 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) NEW–Just because something is called a stem cell “clinical trial” doesn’t mean it really is and being listed on clinicaltrials.gov means a lot less than it used to. I am contacted weekly or even daily at times by patients or their families and they are rightly focused on getting information that they can trust. Many stem cell clinics call the treatments that they offer by the name “clinical trial” and 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, there are data supporting the study, and those doing the trial do not charge patients to be in it. You shouldn’t have to pay to be a guinea pig. I think that’s almost always going to be unethical on the part of those giving it. I often suggest that people turn to the federal website clinicaltrials.gov for information and that 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 in many cases 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.

The post above is for information only and is not medical advice. All medical decisions should be made by patients in consultation with their personal physicians. 

150 thoughts on “Patients guide to treatments


  1. 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!!!


    • 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.


      • 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.


    • 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


  2. 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?


  3. 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.


  4. 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


  5. 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?


  6. 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.


  7. 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.


  8. I have advanced COPD. I am searching for an autologous stem cell clinical trial in which to participate. Can you help me?


  9. 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.


  10. 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.


  11. 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.


  12. 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


  13. 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!


  14. “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.


        • 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).


  15. 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.


  16. 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.


  17. (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.


  18. 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

  19. Pingback: Celltex, RNL and phony worst case stem cell scenario comment | Knoepfler Lab Stem Cell Blog

  20. Pingback: Paul Knoepfler: tratamentos com células-tronco – Para Tio Orsini


  21. 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.


  22. 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.


  23. 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..!!


  24. 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??


  25. 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.


  26. My wife has been diagnosed with FrontoTemporal Lobe Degeneration. Does anyone know of any clinical stem cell trials that she might be eligible for?


  27. 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.


  28. 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


  29. 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?


  30. 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.


  31. 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


  32. 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


  33. 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.


  34. 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.

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  37. 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.

  38. Pingback: Dan Gazit Mesenchymal Stem Cells - Stem Cell Research


  39. 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?


  40. 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


  41. 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?


  42. @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.


  43. 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


  44. 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?


  45. @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.


  46. @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.


  47. @ 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.


  48. 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.


  49. 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.


  50. @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?


  51. 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.


  52. @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?


  53. 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?


  54. @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.


  55. @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.


  56. 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.


  57. @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?


  58. @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.


  59. 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


  60. @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.


  61. 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.


  62. @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.


  63. @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.


  64. @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?


    • @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…


  65. 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


  66. 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?


  67. 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.


  68. 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!


  69. 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 ?


  70. 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&sect=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


  71. 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.


  72. 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


  73. 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.


  74. 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.


  75. 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


  76. 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.


  77. 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


  78. 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?


  79. 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.


  80. 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!


  81. 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


  82. 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.

  83. Pingback: 5 Things You Probably Don’t Know About Stem Cell Treatments


  84. 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.


  85. 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!


    • 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.

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