Over the years I’ve heard from quite a few patients of stem cell clinics who feel very strongly about their experiences. Some have quite positive views on getting stem cell interventions, while others feel very negatively about the stem cell clinics. I’ve heard more of the latter kind of experience.
People often tell me that the stem cells from clinics only worked briefly at best and were too expensive. Another complaint is that the clinic responds to patient disappointment often by suggesting additional, expensive shots of stem cells for the “full benefit”. There is also sometimes a sense that the clinic claims while recruiting patients or on the Internet didn’t match the patient’s own experience.
A new report by Pam Zekman at CBS Chicago reflects the polarized views out there. Some they talked to were positive, but others were unhappy.
For example take the case of Charisma Cardine, who has been blind for 13 years, which the report describes as, “the result of a rare central nervous system disease.”
“They told us that it was a 90 to 95 percent success rate,” Cardine says. “They said they worked with one other patient besides her before and they gained their sight back within two weeks,” her sister, Christiana James, adds. But Cardine’s $9,000 treatment at the Miami Stem Cell Treatment Center did not restore her sight.”
A stem cell doctor from a different clinic quoted in the article, Dr. Daniel Ritacca of the Chicago Stem Cell Treatment Center, has a positive outlook on their clinic’s treatment of more than 4,000 patients. One of his patients, Bob Leonard who suffers from MS, believes his stem cell treatment helped him. The Chicago clinic is part of the stem cell clinic chain, Cell Surgical Network.
For another stem cell clinic patient, Robert Heller who suffers from lung disease, his experience at yet another stem cell clinic, The Lung Institute (also see A Look Inside a Stem Cell Clinic Informercial by Professor David Brafman), was reported as not so positive in the article:
“Heller paid $6,500 for treatments but says his condition only got worse. “”They give you a lot of BS and wishful thinking and selling you on hopes. False hopes,” he says.”
Those are strong words.
The reporter Zekman participated in a Lung Institute webinar, where reportedly claims were made that “71 percent of their patients” had seen increases in lung function.
Many in the research community are trying to get a better sense of the range of patient experiences at stem cell clinics.
Have you had a stem cell treatment at a clinic?
What has your experience been like?
Please share it in the comments. Or you can also email me directly (knoepfler@ucdavis.edu).
My husband broke his wrist about 4 years ago. He had a $14,000 deductible on his insurance that had to be satisfied. The cost came to almost $19000.00 total. He ended up having to go to rehab for months afterward because it wasn’t set perfectly.
I guess I am missing your point Mary Bell. What medical treatment is guaranteed? What treatment is low or no cost unless you qualify for Medicaid or something similar? The high cost of medical care has left many people penniless, bankrupt and with no options. This is not unique to stem cell therapy.
I am facing knee surgery on the 28th of December not really wanting it but needint to get rid of the pain and cannot afford the stem cell treatment, I read all of your discussions and is further from knowing what to do then when I knew nothing about the stem cell treatment, I did come out of it with knowing it is a treatment and only that I am guessing that it is for the rich or super rich, they can afford to pay 6000.00 up to 40,000 for a treatment and then it one does not work continue to pay upwards until you are broke and living on the street maybe under a freeway, then what good is having a knee treatment if you can’t afford a place to live and starving to death while the doctors are around getting richer and richer while all the while you are becoming poorer and poorer and end up dying any way, the difference being you were found dead on the street in stead of a warm bed.
Barbara – I apologize for not responding sooner. I have had some pulmonary issues now for several months, which I had hoped would be rectified very shortly with #15. However, since my last posting some neuropathic pain issues have surfaced that have taken my undivided attention away from postings such as this one. So #15 will be split between pulmonary and CNS. Unfortunately the SC treatments I have received never became cures, but rather have slowed the progression of my disease, which is still quite active. You are correct with respect to the FDA and the Nevada clinic.
And you and I have similar feelings with respect to terminally ill patients and those of us with horrific chronic conditions. I do not intend to give up just because someone who is healthy is telling me that I shouldn’t risk experimental treatments. Let me put it into perspective for the healthy types. There is no known cure for my disease, If I don’t try experimental treatments I am dead.
Richard – Both Barbara and myself as well as others have received stem cell treatments for pulmonary issues. You could probably ask Barbara directly where she obtained her two excellent treatments for her pulmonary problems.
Muggles – I agree that whole organ function is important. And that is something that can be tested. Whether it comes from an integration of stem cells or general support functions is unknown at this time in humans. The “donor personality transfer” only occurs if the stem cells are given to the CNS. It does not occur if the stem cells were nebulized for pulmonary problems or given intravenously. Cell Quest and Lab Corp have been analyzing my blood for my allergist throughout my stem cell treatments. As noted previously and by numerical readout, some of the allergies that I had previously disappeared only after allogeneic stem cell therapy. An interesting note is that one of my donors had allergies that I did not express before their transplant that I “mysteriously” acquired after their transplant. So that data suggests allergies could go either way, i.e., lose existing allergies but gain others dependent on the particular donor. With respect to tracking, as long as the immune cells ended up in circulation one could track them. But if they ended up in resident lymphoid tissue, such as lymph nodes, tonsils, appendix, spleen, Peyer’s patches, GALT, etc., it might pose a difficult problem for tracking.
Mary Bell – The knee surgery you have on 12/28, will it be a total knee replacement or something less invasive? And, of course, what is the cost? If you have insurance, will your insurance cover some or all of it dependent on your co-pays? Stem cell treatment is still experimental and treatment costs vary from $2K to $50K. While most insurance companies will not pay for the procedures, they will pay for lab tests and doctor’s visits related to the treatments. My father had knee replacement surgery. It cost approximately $100,000, covered mostly by insurance. Unfortunately it did not heal and they had to do an above the knee amputation. Others I know had knee replacement surgery, their surgery had complications, they had their legs fused, and are currently walking stiff legged with one leg shorter than the other. Still others I know have had knee replacement surgery, costing upwards of $75,000 to $150,000, and they are leading semi-normal lives. My point to all this is that even routine treatments sometimes do not end as expected. No matter what type of treatment one receives the individual should be fully informed as to both the benefits and RISKS of that treatment. Lastly, good luck with your knee surgery.
Henry – thanks for the further details. Good question regarding stem cell tracking – there’s tech in development, but as far as I know this is only possible for localized groups of previously labelled cells (e.g. dopamine neurons for Parkinson’s). A non-invasive method for detecting integration of single-cells delivered systemically would be a boon to research, but I don’t see it as essential for clinical studies, as integration doesn’t necessarily indicate functionality. (but see below)
Referring back to your situation, I would think that whole organ function is the more important readout than to know if and how many cells integrated.
Thanks for the insight into “donor personality transfer” – wow, not sure about the hair color but the idea of immune tolerance – I wonder if you’ve discovered a novel way to overcome allergies. Would be nice to find the mechanism on this – maybe the MSCs are shifting the Th2 population to Tregs – some lab should do some immune and cytokine profiling of your blood (after you file the patent of course!) – and here you can do stem cell tracking as the immune cells could be lineage traced using donor specific markers.
Also isn’t the aim of SC therapy for SLE to beat the autoimmune attack, and secondarily to regenerate the organs?
how about stemcells for copd thank you norlene2@aol.com
@Henry – Well, I’m disappointed that you are not feeling better. My response to you was only because i was wondering why you were not mentioning that the initial treatments were ones you developed and supervised so thank you for making that clear. I also should note for all the FDA enthusiasts here that they in NO WAY cared what went on in that Nevada clinic.
To correct the record, I never saw any real benefit from the treatments you refer to beyond the placebo effect and was never able to go without oxygen. I have since had 2 excellent treatments that have helped me lead a much better quality of life for which I am grateful. I know many others with similar results. That’s why I would never discourage anyone from opting for stem cell treatment if that’s what they want to do. It’s simply not realistic to think terminally ill patients and those with horrific chronic conditions are just going to give up because someone who is healthy is telling them they shouldn’t risk experimental treatment based on that person’s non experience with actual treatment.
Barbara,
I’d like to know, please, where you received treatments for the lung issues?
Richie – I’m no expert on the relative strengths or weaknesses of different MSC sources, nor of the value of storage for later use. Future stem cell therapies will be of various types and perhaps “environmentally unburdened” stem cells could be of use. In any case, if you can afford it, and you are willing to donate to research, such banking may also be helpful for later longitudinal studies.
Some scientists are too sceptic. Don´t be too sceptic, don`t miss the changes and the future. I am sure the future of medicine are stem cells.
Henry – It’s good to hear that you are feeling better, but I am confused as to why you are making it sound like a group you refer to as “they” has been directly involved with all your treatments. Your first treatments, to the best of my knowledge, were done under your supervision at a doctor’s office in Las Vegas. There was no IRB, no laboratory, no one else who knew anything about how to prepare the cells, no one with any experience in the type of treatment you wanted for yourself, but you.
I’m not faulting you for wanting to improve your life as I fall into that same category, but I think that what went on there was chaotic to say the least. I personally invested time and money thinking that studies were being conducted when they weren’t. Hopefully, the “they” you now refer to is in no way connected to anyone involved in that clinic. It was a very difficult and expensive lesson for me. I would think that it was the same for you. I am optimistic that the “they” you now refer to is a group that is professional and trustworthy and conducts their research properly. That’s what is needed to nudge the FDA.
I do have a copy of the paper you mentioned, Treating Parkinson disease with adult stem cells. J Neurological Disorders, 2:1, 2013b, http://dx.doi.org/10.4172/jnd.100121, but the link does not work for some reason. I just wanted to mention this in case anyone else wanted to access it.
Barbara – I never said I was feeling better. What I said was that I was holding my own. Even though I am now no longer allergic to myriad of foods, attributed by my allergist to the allogeneic transplants, I did not come out of this unscathed. My SLE is attacking another organ, the third one thus far. In addition to everything else that is occurring, and based on verifiable auto-antibodies, I am now an autoimmune insulin-dependent brittle diabetic. I am being monitored for blood glucose 12 times per hour 24/7, so when extreme fluctuations occur I can correct them. The interesting information that has come from this ‘experiment’ is that the closer I am to a transplant the more often I go into a diabetic coma (glucose below 50) or crash (glucose between 50-70), while the further away I am from a transplant the more often my glucose goes above 200 and beyond. This occurs even though everything else is being held constant. I take once daily long acting insulin and I am on a strictly controlled diet.
The entity I keep referring to is aware of my situation and is becoming more involved since I severed all ties with the Nevada group. And you are correct; the stem cell treatments were based on technology developed in my discovery research laboratory. You should know that, you were involved with that group as well as I was. I agree with your assessment that the situation was chaotic. However, I would even go so far as to say that what occurred was a travesty perpetrated by individuals that were more interested in greed than anything else. If I knew then what I know now, I probably would have done things differently, hindsight is always better than foresight. I relied on the due diligence of the group by someone I thought was my friend, rather than doing the due diligence myself. Instead of promises of things to come I should have been more tenacious about having IRBs and other items you mentioned in place before transferring the early technology to them under CDA/NDA. But then again when death is eminent one grasps for a life-line no matter how tenuous it might be.
If I hadn’t gotten the initial series of treatments from them I would be dead, so I’ll give them that. I was led to believe by you that you were in the same situation as I, although from a different disease. It is good to see that your treatments from them worked and that you are still alive. I remember being there after your first transplant from them and seeing you take off your oxygen. I was a bit skeptical that the effect occurred so quickly, but thinking back it was probably due to the placebo effect that has already been discussed.
I have been refining my technologies since the initial stem cell transplants that were performed in Nevada and have been using myself as the test subject. I have a vested interest that the technology works. With each subsequent transplant, autologous and/or allogeneic, I am learning what should or should not be done. It has been an interesting series of experiments. The entity I keep referring to, which is not connected to anyone that was associated with the Nevada group, has taken over my IP and is advancing it as it should have been done in the first place, with the appropriate scientific checks and balances in place. Knowing that some may want to follow my research I have placed all my published papers on ResearchGate, including the previously mentioned citations. Anyone can download the publications in their entirety at https://www.researchgate.net/profile/Henry_Young.
I apologize to anyone following this thread. All I did was to answer Dr. Knoepfler’s question as to one’s experience with stem cell treatments. I have had positive experiences, but they were based, as Barbara pointed out, on technology developed in my laboratory. I tried to keep that particular information out of the conversation. I am not touting that my adult stem cell technologies are better than anyone else’s stem cell technology. What I am suggesting though is that anyone thinking of having a stem cell treatment performed needs to perform due diligence. Don’t just rely on anecdotal comments.
Ask for a list of scientific publications. Are any of their personnel listed as authors on the publications? In other words, have they been directly involved with the research developing the techniques or are they just using someone else’s techniques without fully understanding what the technique(s) entail(s). Are they under IRB (Institutional Review Board) oversight? Is the FDA aware of what they are doing? Is the procedure being performed under the auspices of a clinical trial? If so, how does the perspective patient correspond to the inclusion and exclusion criteria for the trial? Does the clinic fully inform their perspective patients about the risks and benefits of their procedures? Have the perspective patients been fully examined by a licensed physician at their clinic? Can the clinic tell you exactly which population(s) of stem cells you will be receiving, or is it an unknown mixture of cells? What are the criteria they use to determine their population(s) of cells? [I know of at least 12 separate populations of stem cells that can be isolated from almost any tissue, identifiable by size and cell surface markers.] Will the treatment be directly supervised by a licensed physician? Will the clinic be using the patient’s own stem cells (autologous) or someone else’s (allogeneic)? If allogeneic, what is the gender of the cells? If allogeneic, have the cells been tested to determine the presence of any mutations or genes that would be detrimental to the patient?
I know from first-hand experience when death is eminent one grasps for a life-line no matter how tenuous it might be. But the perspective patient or their care giver needs to be confident the clinic will be giving them the best possible care before any procedure is performed.
@Muggles
so many comments, maybe you have not seen my last 2 comments above?
I just had another question concerning the storing of MSCs from milk teeth, and I am interested in your opinion about this.
I would be happy to hear from you
Thanks in advance
@Henry None of this secrecy makes any sense to me Henry Young PhD. You say you are a volunteer, yet you are paying for treatments. You claim that this group is working with the FDA and yet won’t say who “they” are.
How can someone find the published IRB approved clinical trial you refer to for Parkinson’s?
Have all your treatments been done with the “they” you refer to? It seems like after 4 1/2 years “they” would be willing to share more information with the public or at least be seeking more participants for treatment. Are you part of the “they”? An internet search shows a company called HENRY E YOUNG PHD REGENERATION TECHNOLOGIES, LLC. I presume that is you.
Muggles – The transplants I received were autologous only (6), autologous + ABO-matched allogeneics (2), and autologous + O-negative allogeneics (6), for a total of 14 transplants. The separate populations of adult stem cells were isolated and purified from blood and verified by both size and cell surface markers.
The bell-shaped curve was not only feel-well feelings but also based on substantive objective data. The placebo effect felt within the first 24 hours after a transplant had no substantive objective data to back up the ‘feel good Superman effect’. In other words, there was a distinct difference between placebo effect and treatment effect, based on objective data.
Sorry, but I am not that interested enough for biopsy results, especially if I am the individual to get biopsied. For me a ‘simple’ biopsy will induce a lupus crisis. And a lupus crisis is not something I would voluntarily accept for the advancement of anybody’s science. Rather the results came from a multitude of animal studies using genomically-labeled clones of stem cells that were performed before the clinical studies were even attempted.
At this juncture they do not know whether the newly introduced stem cells integrating into the regenerating tissue are attacked by the next lupus crisis or whether they survive and it is the original tissue that is attacked that leads to a decrease in function. For in vivo clinical studies they need a method to track the transplanted cells in real time without harming the volunteer in any way. If you know of any method to accomplish that please let me know and I will forward that information to them.
There are a few items that I have not shared concerning side effects from my allogeneic transplants. These particular items were not anticipated ahead of time by either the entity I volunteer for or myself. Believe it or not, the donor’s personality transfers. My wife can attest to that. The donor’s hair color transfers, especially if the recipient’s hair color is white to begin with, as was mine before the transplants began. But the most intriguing of all is the effect the allogeneic transplants had on my immune system. Before my first allogeneic transplant and because of my hyper vigilant immune system I could count the foods I was not allergic to on two hands. I was basically allergic to everything. For instance, in 2003 I was diagnosed with Celiac disease. Celiac disease is an allergy to gluten found in wheat, oats, barley and rye. As opposed to the prick test (i.e., checkerboard assay) my allergist uses the sheep-RBC allergen-antibody assay to determine the antibodies in one’s blood. The test gives a numerical value for how allergic one is to a particular allergen. A score of 1.0 and the person is allergic to the allergen. The severity of the allergy is a direct linear relationship to the value above 1.0. Before my first allogeneic transplant in 2011 my score for the gluten allergen was 73. To put that into perspective, the independent lab that did the analysis used a score of 37 to denote an extreme allergy to gluten. This past year, I was tested again for the gluten allergen and my score was 0.001, no longer allergic to gluten, and therefore no longer having Celiac disease. Now, after 8 allogeneic transplants I have lost most of my food allergies, gluten being one of them.
My point being that with adult stem cell transplants, especially gender-matched, ABO-matched or O-negative donor allogeneic transplants, the ability to circumvent the ‘bad’ genes causing hereditary diseases may be a reality after all if given ‘healthy’ allogeneic stem cells in sufficient quantities and time intervals. Only time will tell.
Just Asking – I never said I was paying for treatments. What I said was that I was getting a discount.
It is their choice whether they want to reveal themselves or not. And at this juncture they requested not to be revealed until “they have all their ducks are in a row”. That is their choice. I am honoring their request. As I understand their situation, they would like to have approval from the FDA and be under IRB-approval/oversight before they begin full-scale clinical trials. Again, that is their choice.
If you are interested in any type of scientific publication I would suggest a PubMed search at the National Library of Medicine and search for key words, author’s names, etc.. You can access PubMed at http://www.ncbi.nlm.nih.gov/pubmed/?querykey=4%26dbase=pubmed%26querytype=eSearch%26.
Since you asked, the particular Parkinson citations you seek are as follows:
Adult stem cells: from bench-top to bedside. In: Tissue Regeneration: Where Nanostructure Meets Biology, 3DBiotech, North Brunswick, NJ Chap 1, pp 1-60, 2013a.
Treating Parkinson disease with adult stem cells. J Neurological Disorders, 2:1, 2013b, http://dx.doi.org/10.4172/jnd.100121
Henry E Young PhD Regeneration Technologies LLC is my consulting company. It has officially been in existence for anyone’s hire since 2012. The entity I volunteer for is a different company. I have worked with that entity for a very long time, much longer than 4.5 years. I work with them in two ways, first and longest as a consultant (under CDA/NDA) and then more recently as a volunteer, because of the severity of my SLE.
@Henry – thanks again for being so ready to provide details of your therapy and also for the balanced opinion on such early studies as a lead-in to clinical trials.
I hope others reading this can learn that controlled stem cell therapy trials are not contrary to your experience as a volunteer. Sadly, there are always conspiracy theorists who simply don’t want to hear or understand the facts.
If I may summarize your posts, the impression from a clinical standpoint is that you are describing a transplant (autologous + allogeneic) but not a drug. I guess the cells are isolated from blood and purified by some marker?
Thanks for clarifying the background to the bell-shaped curve – that this isn’t an independent biomarker activity, but encompasses your feelings of well-being and ability to function as well as placebo effects. On the actual mechanism, you say cells incorporate into regenerating tissues – is this by biopsy analysis?
Conclusion is that stem cell integration is responsible for improvement in organ function and (delayed) improvement in health – which then degenerates after the next round immune attack. However, what I don’t understand is that if the newly integrated cells are also attacked then the illness cannot ultimately be resolved so how would more cells be helpful – except for extending the transient recovery periods?
Thanks for any answers you care to provide.
Wow,Henry seems to contradict Muggles about every which way but loose.So Henry is getting pluripotent cells with no immune suppression,just like Lanza said could be done.We now have Gordy Howe,John Brodie,Tony Dorcett and now Bart Starr all going to Mexico to get the help they need that they can’t get in the U.S. because our Regulators and Big Pharma haven’t squeezed out enough money from hapless U.S. patients.
Or it could be the amazing placebo effect almost all U.S. clinicians claim it is.
Child please!
How long will it take for U.S. scientists to demand that regulators admit the fact that these treatments work and American citizens have the right to save their own lives.
How about contacting the FDA and NIH and asking them for some kind of explanation about what is going on here.
Oh and don’t hold your breath waiting for the answer!!!!!!
Edward – I did not try to infer in my comments to Paul and Muggles that the group I volunteer for was not cognizant of problems with the immune system and immuno-rejection issues. Because of the SLE that I have my immune system is hyper vigilant. It knows almost immediately when there is something present that shouldn’t be there, be it partially digested self, splinters, bacteria, viruses, allergens, or any other foreign material and responds immediately and devastatingly causing a lupus flare/crisis. Based on the group’s published data, the mesodermal stem cells they identified express a marker (MHC-I) that distinguishes self from non-self. Their identified pluripotent stem cells and totipotent stem cells do not express the MHC-I marker. Therefore, while I do receive my own mesodermal stem cells during an autologous transplant, I have never received mesodermal stem cells from a gender-matched, ABO-matched or O-negative donor during an allogeneic transplant. I have only received their totipotent stem cells and pluripotent stem cells. That was the group’s method for circumventing the problems with immunosuppressants, which have their own associated morbidity and mortality issues. Contrary to other groups that have thumbed their noses at the FDA and moved outside the territorial limits of the USA, the group I volunteer for is working with the FDA to receive approval for stem cell treatments within the borders of the USA.
There is indeed a placebo effect after stem cell transplants and I have felt it on numerous occasions. For 24 hours after a transplant I feel like I can leap tall buildings at a single bound. During the next 2-3 days after transplant I usually feel like I did before the transplant. During days 4-6 I progressively feel better and by day 7 there is noticeable improvement. I would equate the first 24 hours after transplant to a placebo [‘Superman’] effect. Days 2-3 are the rebound effect, and days 4 to 7 and beyond appear to be the biological effect of the stem cells on the system.
I believe that the only way to prove to the regulators that stem cell transplants have a biological effect is by publishing IRB-approved clinical trials. The group I volunteer for is doing just that. Their first published IRB-approved clinical trial was with Parkinson disease. Lastly, if you check the FDA/CBER website you will note that the FDA has 60 days to respond to a request for clarification, classification, categorization, and/or judgement. How many of the stem cell clinics providing treatments have done that?
Henry
Henry – many thanks for all the infos – very illuminating indeed.
Mechanistically it sounds like a an anti-inflammatory effect akin to cytokine therapy or NSAIDs (bell-shaped curve therapeutic window), but here the actives are secreted by the cells (a well-known function of MSCs).
Also allogeneic cells – wow -were they HLA-matched or are do you get immunosuppressives too? I guess you have them anyway.
I wish you well and hope that a more permanent solution comes along soon, such as CAR-T therapy and similar approaches, which look promising. Once again, thanks for sharing.
Dear Muggles, The laboratory that did the work with the stem cells that were used in my case demonstrated mechanistically that those cells, especially the totipotent stem cells and pluripotent stem cells, incorporated into tissues undergoing repair. Therefore, it may not be akin to cytokine therapy, but rather actual repair of damaged tissue. The mesodermal stem cells that were used were NOT Caplan’s MSCs, originally named mesenchymal stem cells, then marrow stromal cells, and now something else based on the ‘MSC’ acronym. Caplan’s original MSCs were cloned by Mark Pittenger (Osiris) from a starting population of three cells and attributed by them to a tripotent progenitor cell that could form only cartilage, fat and bone. Rather the particular mesodermal stem cells utilized in my case were characterized based on cloning from a single cell that could produce at least 39 differentiated cell types from the mesodermal germ layer lineage. The pluripotent stem cells, cloned from a single cell, produced at least 63 separate cell types from all three germ layer lineages. And the totipotent stem cell, also cloned from a single cell, produced at least 66 separate cell types from all three germ layer lineages, including spermatogonia.
The bell-shaped curve of activity is reflected by the fact that my SLE, a systemic autoimmune disorder, euphemistically, is trying to kill me. As the transplanted stems cells are helping to form new functional tissue, other tissue is being destroyed as an aftermath of SLE crises. The bell-shaped analogy I gave for myself was for all my organs in toto. For me, multiple organs (just about every organ you can think of) have been affected by the SLE. As one organ is treated and its function gets better, I lose function in other organs (parenchyma replaced with stroma). So collectively, it is seen as a bell-shaped curve of functional activities.
I am not on immunosuppressives of any kind. And no, I have not had chemotherapy. Rather the laboratory’s research determined that as long as I was matched to gender and either ABO-matched or had an O-negative donor, I would be fine with the transplant. And they were correct. Eight of my 14 transplants contained allogeneic stem cells, 2 were from ABO-matches and 6 were from O-negative donors. And I am still alive, 4.5 years out from my original transplant.
Thank you for your well wishes. I believe this therapy could be permanent, if I could receive more healthy stem cells more often. But that is just a guess. Only time will tell who is correct.
@Henry,
Thanks again for sharing your story and answering questions.
If some of these cells are functionally pluripotent or totipotent, what is the source? It is widely believed in the stem cell world that you cannot get such powerful potent cells like these from adult tissues. Also how do they get billions of them? Do they proliferate them in a lab? Are you able to share the name of the company doing this treatment? Are they doing a clinical trial?
Paul
Dear Paul,
The research that was published has the same cells being located throughout the body. I believe about 40 different sites have been examined thus far by immunocytochemistry and/or isolation and characterization. They published on 11 different mammals, including humans, and found them to be present in similar locations.
They have published multiple times in peer reviewed journals that you can get such powerful potent cells, so I believe them. The sizes of the cells, also published, suggest that they may have been overlooked by others in the stem cell field, and discounted as something else.
The sizes of the stem cells they use are very very small. They have also developed techniques tested in pigs and horses to make sure their techniques work on large individuals such as myself. I eat one compound (see below) daily that increases my overall numbers of stem cells. Then before harvest they give me a second compound that maximizes the number of stem cells available for harvest.
They do not proliferate them in the lab, they only use fresh isolates. They are using me as my own stem cell proliferator. They have me eat ½ to 1 cup of fresh or frozen blueberries per day to incrementally increase my number of cells for harvest. The longer I have been on the blueberry regimen, the more stem cells I generate.
They requested that I do not share the name of the company doing this treatment at this time. As I understand the situation they want to make sure “all their ducks are in a row” before they venture out into the general populace. I understand that following your suggestions on your stem cell blog they are applying for FDA/CBER approval for their techniques. So far their fresh isolate autologous technique has been categorized as a ‘minimal manipulative biologic’. They are now applying for a same day surgical exemption from CBER for their autologous fresh isolate stem cell procedure. They currently have IRB approval for freshly isolated autologous and allogeneic stem cells for treating neurodegenerative diseases, traumatic brain injuries and pulmonary disorders.
They already have done a clinical trial. They published the 7 month and 14 month follow-ups from an autologous Parkinson disease clinical trial in 2013. As I understand the situation they are waiting on word from the FDA before starting any large scale clinical trials with the aforementioned disorders.
I am hoping that they will begin research on proliferating stem cells in the lab and then testing them on volunteers. I told them I want to be one of the first volunteers they test. I am more or less holding my own with autologous and allogeneic fresh isolates, but if I could receive more healthy stem cells more often I think I would do better.
Henry
Henry – good to hear your story. I don’t think any clinic would promise a cure with something so easily defined as a measurable autoimmune response. Unapproved stem cell clinics barely offer any independent data to show that anything has really been achieved – does your clinic do any tests before and after treatment to assess progress, such as the SLE REAL score or T-cell profiling?
For such defined autoimmune illnesses, such as SLE, MS, diabetes, MS, the only “measure” I have heard of is that the patient or their family “believes” that it has worked. That’s unfortunately not a basis for proof of efficacy.
For Muggles: I have objective data from allergy testing both before and after stem cell treatments, i.e., nuclear antigens, foods, medications, environmental, etc. There were also organ function tests before and after. I also have subjective data on how I feel, usually bell-shaped curves. The organ function tests vary depending where I am on the curve. When I am on the down side it is time for another treatment.
For Paul: The stem cells I received are endogenous totipotent, pluripotent, and mesodermal stem cells isolated from blood, both autologous and allogeneic.
The cells we’re given in the billions, usually 5-10 site directed and an equivalent number systemically.
Intranasal for CNS issues, nebulization for pulmonary issues, and systemic for Internal organ functioning.
The usual cost is $5K per treatment. I received a discount because I am their guinea pig volunteer.
Most individuals do not have the severity of the disease that I have. I inherited SLE genetically from my mother, who died of complications from SLE.
Presumably with a less severe disease they would need fewer treatments.
@Muggles
addendum to my last comment one hour ago
I have just one additional question. What do you think about storing the mesenchymal stem cell from milk teeth? for possible medical applications in the future.
just take a look at this article:
http://onlinelibrary.wiley.com/doi/10.1002/stem.1909/pdf
Because I am thinking about storing the mesenchymal stem cell from the milk teeth of my children. I know at the moment it is not possible to use these cells.
But maybe in the future? Maybe to grow new tissue, or new organs… What do you think?
@Muggles
Thank you, now I have learned something more about stem cells. Until now I have really thought, stem cells could form new tissue. So I think PRP works the same way, PRP includes helpful factors for regeneration, who help the damaged tissue (cartilage) to repair itsself. So PRP problably can only help, if the tissue is just damaged and can regenerate.
Hope some day medicine will be able to produce stem cells, which can form new tissue in the body, but I think this will take very long time.
Thanks.
I have had 14 adult stem cell treatments. Realistically they are just that, treatments and not cures. I, along with my physicians and spouse, thoroughly believe that if I hadn’t had the stem cell treatments I would be dead. I was 2-week terminal Stage-IV SLE before my first treatment. With the stem cell treatments I am holding my own against my disease.
@Henry,
Thanks for sharing your experience. I am glad you feel positively about how things are going with the SLE.
I was curious about a few things. What type of adult stem cells have you received (e.g. SVF?), what # of cells were given, and how were they transplanted? Also, what about cost?
How much would 14 stem cell treatments of the kind that you received cost? At most stem cell clinics, the cost is $8K-$10K each so probably most patients could not afford more than 1-2 treatments.
Paul
Richie – the language used in science and medicine can be confusing when one is trying to explain something in brief. So I would say that physio can “support” repair of cartilage but regeneration of cartilage itself needs cells to divide and become cartilage cells. Now we have to be careful with terms, because In the stem cell (SC) therapy we are talking about with Nadal, the cells were NOT given with the aim of becoming new cartilage cells, but to support endogenous regeneration – so in effect similar to physio. If this actually happened or if it was both types of support that helped nobody knows.
In addition to the above there are real scientific borders, and fat SC clinics try to use confusing language so that people will believe the impossible, Simply put – there are supportive SC therapies using mesenchymal SC (MSC), which do not differentiate into new tissues and are proposed to secrete factors helpful for regeneration – and therapies in which new tissue is supposed to come from SC. In the latter case this is by either by making the tissue in the lab and transplanting it or encouraging adult SC to grow and differentiate – in this second version is very difficult to show in humans that new tissue has been produced by endogenous (adult) SC, but work in animals has demonstrated this in a some cases.
Now come the fat SC clinics that use supportive cells and sell them to patients with the story that they will turn into new tissue, including pancreas, neurons, heart, bone and cartilage, This is rubbish. MSCs are all over the body in any case and obviously don’t work – so they are selling you what you already have.
For Nadal’s back problem (needing cartilage or muscle repair), it may be true that MSCs were supportive – but only supportive – like physio, If he went to get support for type 1 diabetes, where there are functioning beta-cells, or stroke, where heart tissues is damaged, then he would be wasting his time and money.
@Muggles
Problably you are rigth, but physiotherapy won`t have the power to repair cartilage?
The problem is that nobody knows exactly which injuries Rafa suffered and no one knows exactly how he was treated by stem cells (MSC, bone marrow). So it is not possible to be sure about something. It is a pity, because maybe the stem cells really have played a major role for his recovery. Maybe – I know a maybe is not enough and of course no proof, and so this case impresses only some dreamers like me. I hope there will be soon some pilot studies.
Concerning PRP-therapy. I just googled and saw, PRP is really already FDA approved
http://www.drbayatshahbazi.com/Prp/AdiStem_PRP_Brochure.pdf
So only insurances don´t accept this therapy.
Of course celebretys as Rafael Nadal have a bigger influence to the public, because we think. If a sports star like Rafael Nadal chooses this therapy, he will know what he is doing. Because a star player can afford the best physicians and problably has the best counsel.
By the way there is one little difference between Rafael Nadal and the other ones (like Gordie Howe), who where treated by stem cells. Nobody (no clinic and no physician) has used his healing for public relation, because nobody knows exactly where and how he was treated.
Thank you for your interesting answers and evaluation.
Richie – Rafael Nadal is no different to many other sensationalist stories or recovery with no real proof. He had various treatments and recovered. Without hard evidence you cannot align his recovery to any specific therapy. You say, “No one of them helped him….” but where’s the proof? Physiotherapy doesn’t work overnight, so to say it didn’t work is just not scientific.
By the way, by Nadal’s own account, he had physio for some months AFTER stem cells – so by your logic the stem cells didn’t work and the second round of physio did.
Nadal was helped by physiotherapy – but that doesn’t sell newspapers. Don’t mistake real scientific reports of therapeutic efficacy with tabloid journalism.
Probably you are right, but please consider the case of Rafael Nadal is a little bit different. As far as I know he had serious injuries and he tried several treatments. No one of them helped him and he tried at least the stem cell therapy. 6 weeks later he returned to the center court. So I think it is likely that the stem cell therapy has helped him. I know there is no evidence, and it is just a case report… , but I think you should not rule it out.
Why the famous people? The big newspapers only write about these people. Somewhere I wrote here already, that the PRP-therapy has healed the avascular necrosis of my brother – after seven years, he is no celebrety and so no newspaper has reported his story.
I am not sure, if PRP is FDA approved? The insurances don`t pay for it, but I have seen that PRP could work. So evidence is much but not all.
“Too easy to divide just between government approved therapies and other therapies.”
Yes it’s easy because – it takes years to gather data on efficacy, safety, delivery and formulation and then only 1 in 3 drugs are approved and even these must be followed up in phase 4. Compare that to the zero data on efficacy, safety, delivery and formulation with the “others” – not one single data point to show where the cells went or what they did or even what the real “success” rate is. Easy to divide between them.
Nadal had months of physiotherapy before and after his cell therapy – maybe that had something to do with it. Doesn’t it seem strange to you that such unapproved therapies seem to work mostly on famous people? Sorry, but it’s hokum.
@Muggles
I am sceptic about these wonderful healings too, but what do you think of Rafael Nadal? After receiving some stem cell therapies about one year ago, he played a fantastic season and everybody could see, he is even able to play professional tennis again. We have discussed his therapies here some time ago and experts thought, that he has received PRP and some additional applications – maybe with MSC, maybe taken from his own bone marrow. But till today nobody knows exactly, how he was treated?
I am very interested to get to know more background information about his treatment? Do you know more about this?
And so I think it is too easy to divide just between government approved therapies and other therapies.
For example I have seen myself that PRP-Therapy could be very effective, but health insurances still don´t pay for PRP.
I assume these are adult stem cells being used since it’s being done in the U.S.Adult stem cells are the “YUGO” of stem cells and the only ones U.S. regulators will let slip by their restrictive control.It’s not really sanctioned,they are just looking the other way.Once other countries make the breakthroughs we need to help patients,the U.S. regulators will have to admit the truth and relent.
Both embryonic derived or much younger than adult placental stem cells can not be used and as a result the benefits are limited or non lasting.
What we don’t see is organ damage,cancer or attempted suicide as a side effect of drug therapy we hear about while we are eating dinner with the T.V. on.
Does it sound kind of crazy or is it just me?
Richie, as often commented on this site – serious clinics will only be offering government approved therapies. It’s the same with any drug. Can’t be any simpler really,
I know your next comment will be that Geordie Howe and hundreds of others were healed by non-approved stem cell therapies, but this is fiction, self-promotion, a delusion – or at best – a misunderstanding, or just marketing.
This is the problem we discussed already, there are serious and other clinics and in most cases it is not possible to differ for patients.
Why not call your post, “Some patients happy with stem cell treatments while others are not?” – and include the positive comment from the MS patient?
“Another MS patient Dr. Ritacca treated believes the $7,000 treatment worked for him.
“I’m walking better. I’m walking faster. I’m more balanced than I used to be,” Bob Leonard says.”
Probably, everyone listens to what he wants to hear and makes conclusion in accordance.
Having about been killed by Kaiser Permanente (the care was horrendous that I received, not to mention that my premiums were very high), I opted for stem cell treatment. I believe stem cell therapy has saved my life. I’m sure that individual experiences can vary for those who go to Kaiser just as much as they can for those who opt for stem cell therapy. I also believe that Kaiser did kill my mother. The level of care was so bad, that if I had had the resources, I would have sued them.
Would I recommend Kaiser to anyone? NEVER. Would I recommend stem cell therapy. ABSOLUTELY.
Barbara, can you tell me where you had your stem cell therapy? I am researching for my brother, who has COPD and am in need of feedback. You can email me directly at vraymer@nyc.rr.com. By the way, I share your opinion about Kaiser Permanente. I used to live in San Francisco and was forced by HMO to use Kaiser. A long time ago, but still remember the treatment. Thank you for your help.