Stem Cell Therapy and Circumvention Tourism

A Dr once told me that they had a patient, against their strong advice not to do it, went anyway to get stem cell treatment. This patient spent $40k for the procedure, and it did not work. This was here in the states. I have adjusted my habits in eating, drinking more water etc. It has helped me in certain degrees with MS, but I realize there is no cure yet. I try to participate in any trials there are for MS, with the express reason of getting more research for curing this disease. Be wary of the `Spin Dr` that has a cure. If that were true, it would be all over the news, especially the MS sites.

I couldn’t agree more that if there are places fooling people out of their money, they should be exposed, but some of the fearmongering is giving the doctors and people who ARE doing a good job of this type of research a bad name. This article is a little reckless with the images it uses. I am not aware of exactly what stem cell therapy is, but a stem cell transplant is not a therapy. It is in fact a medical procedure that is in fact FDA approved for leukemia, but not MS yet. It involves harvesting white blood cells, some of which are stem cells, chemotherapy, to basically kill off ones current bone marrow, and replacing the stem cells in order to build a new set of bone marrow. A hard reset for the immune system. It comes with a list of contraindications, some risk, and has been done here in the US for nearly 50 years. HSCT is not a therapy, but in my mind, it is a cure. I was diagnosed with MS 9 years ago. I haven’t taken a single dmt, steroid, or even an nsaid in the last year. My mri 2 months ago showed no new lesions. Every day I wake up and I get just a tiny bit better than I was the day before. That’s not a scam, and that happened legally in a trial here in the United States. HSCT saved my life.

Hi Laura - Last year I traveled to Mexico to undergo HSCT, a chemo treatment that includes stem cells. This treatment is FDA approved in the US, but for MS...so I guess my trip would be considered circumvention tourism. It was the best decision that I ever made. And your right, we all need to do our homework and decide what is best for us. I just wish that the FDA wouldn't block us from getting these life saving treatments closer to home.

Today marks the 49th anniversary of my husband's diagnosis of MS. He has never experienced a remission in all that time. Just a slow downhill progression. I never expected there would still not be an effective treatment or cure by this time. At this point my wish to walk with him again before we die will never happen. We are running out of time. This is why Americans are going to other countries for medical care...and hope.

Hi Laura,

Since there are rays of hope with the stem cell data we do have, it makes Circumvention tourism at least intriguing as we hope for a cure.

Options are limited here in the U.S. Like me, I’m sure many of us called the Tisch Medical Center to inquire about their phase 2 stem cell trial. They said they are only taking current Tisch patients. Having PPMS, I am not aware of any other FDA approved options here in the U.S. The Northwestern University trial was only for RRMS patients.

So here we are. I am glad we at least have Ocrevus. Also, Ampyra helps a little with walking ability. Other than that, what else is there besides managing symptoms?
We do not have time to wait for results of Tisch and other trials. If it hasn’t already done so, MS may take away our independence.

I agree that Circumvention tourism it is risky, but have been gathering information about treatments outside the U.S. I am currently researching HSCT treatments in Mexico and Russia.

We owe it to ourselves to at least look at all options.

Thank you,
Doug

There is currently zero effective treatments for any MS patient with a progressive form of the disease. This amounts to >50% of 2.5 million MS patients, of which 1 million are in wheelchairs.

Right or wrong, why does one think MS patients seek answers elsewhere based on anecdotal studies or phrase 1 or 2 trials? It is because the current system has failed the MS patient miserably.

Quackery (or insanity)= the current state of FDA supported 20 + billion dollar pharma driven neuroinflammatory treatment only model, which have no or barely any effect above placebo on the progression of the disease.

Where are the effective treatments for neurodegeneration, remyelination and neurorestoration? When will this come about to be available from your pharmacy? 10-20+ years away? Time is not a luxury patients with progression have. It is not relapses one should fear. It is progression of the disease for which there is no effective treatment.

This brings me to stem cells. Do you honestly think pharma and their associated neurologists are going to be giving up their cash cow and study stem cells (HSCT or MSCT therapies)?

This is another trash article that does not delineate between HSCT and other stem cell therapies. Let's remember that the 'stem cells' in HSCT are not required, they only help recovery. It's the chemotherapy that ablates the immune system and allows it to regenerate. This is the same chemotherapy used in MS since the 70's for certain progressive cases and it has been shown to stop MS in many cases. There is 25+ years of documentation on this. Dr. Wahls had chemo and touts her diet as a 'cure' of sorts.

How are the Ocrevus ads below my post doing? I hope you're enjoying them.

I agree that stem cell therapy in certain janky clinics is risky especially if there is no science and evidence behind it. Stem cells by themselves do not have the evidence needed to make the risky call to have procedures done.

Mesechonical stem cells are for real in Panama using umbilical chord. It also is used by Regeniex in San Diego. There is allot of success and in most cases it may have to be done more than once. Many are doing it from the US and when you go there and meet face to face people and see the success stories. For instance Sam Harrell and Holy Huber and so many others. It’s not just MS it is also Parkinson’s and Autism. It really is effective for Autism and MS. The problem is the FDA along with Drug companies don’t want this due to know money to be made. They will do everything to not make stem cells happen. Right now TISH Parm in New York doing clinical trials on it but they are being hampered by FDA. Stem Cells are not a drug. You can get them from your own fat! Then re-injected into you and it works. May take three or four times for real amazing results but no money to be made by big Pharm. mesechonical stem cells from your own fat or a donated umbilical chord, which is tested for all known diseases before it passes, is extremely safe. Safer then any MS, Autism, Parkensen medicine. ARE YOU WILLING TO LEARN.

Hemopoietic stem cell transplant has more to do with the chemo therapy than it does the stem cells. This is a most important fact that should be mentioned whenever discussing traveling for stem cell treatments. The results of the clinical trials in Cleveland prove without a doubt that there are many thousands who could benefit from this treatment who have no options even though they have been doing HSCT with good results in the United States for 20 years, for some reason they still cannot figure out if it works. Go figure.
It’s not fair when speaking of stem cells to not mention the difference and undeniablely absolute positive results when discussing this subject without being somewhat misleading.

I had a stem cell transplant in Freeport, Bahamas back in October 2015. The results were almost immediate. The numbness was gone from my arms and legs and I was able to stand for longer. It was like setting back MS 10 to 15 years for me.

It didn't last. For 12 to 16 weeks, I experienced very positive results, but gradually, I returned to baseline.

The procedure was done by an American doctor and used autologous stem cells taken from my stomach and hips. It was also part of a clinical trial and cost me little but the trip to Freeport and the serveral days stay.

I would do it again in a heartbeat, if only to have that temporary relief.

Stem cell therapy for multiple sclerosis has a 20-year history. Getting more studies is very difficult due to the lack of economic benefit. Hematopoietic Stem Cell Treatment (HSCT) is done every day (for cancer patients). It is shocking to me that its acceptance by the medical community in the US has been neglagible. As a 25-year MS patient who traveled to Puebla Mexico to receive this life-changing treatment, I find their continued lack of support almost criminal. HSCT is a cure not a treatment. With billions of dollars at stake, who’s looking for a cure?

Hello,
I have no idea who the fitness person is that you speak of, but I do want to tell you that your concerns are well taken by those who have actually done our homework and have decided to seek treatment outside of the United States. My Progressive MS was calmed, my quality of life improved, and my mind was clear for the first time in years with adult stem cell therapy.

It may come as a surprise to you that the current mainstream MS treatments offer very little with risks and side effects that can complicate and kill someone with Multiple Sclerosis. After failing and being taken off of these pharmaceuticals, I was a “no options left” patient and frankly, was ready to give up on life itself.

Our own cells have healing properties. I know it, because I have felt better and have feeling and movement in parts of my body that were completely numb or unresponsive.

That has to be worth something. It is worth everything to me. That means that I do travel outside of the USA until things change.

And, if you’ve done your homework, you already know things are changing in favor of medical freedom and access to our own cells.

My opinion on stem cell procedure for MS is that the FDA is dragging its feet due to the pharmaceutical companies. So we as MS patients pay the cost with our health. Dr.Burt at northwestern university had proven HSCT to be a viable treatment with excellent results but you have to be wealthy to obtain it. The FDA shrugs its shoulders to his findings. He's been doing these treatments overseas for quite a while with very positive results and might I add with no problems.

What a joke. Typical article from a big pharma sponsored web page. I suppose all the testimonials from the hundreds who were kind enough to take time to share their stem cell stories is just a big conspiracy. As a husband of an an umbilical cord mesenchymal stem cell recipient I can tell you there is absolutely efficacy to this procedure in the treatment of MS. Sadly this article would have you believe because there are no double blind placebo based clinic studies it is a dangerous and useless treatment. Just more regurgitation of big pharma backed medicine. The reality is that anyone that puts the time in to do the research knows the pharmaceuticals used to treat ms carry much more risk than stem cells (this does not include the hematopoietic transplant where chemo is used). MSC infusion carry virtually no risk. The reason there are next to no completed studies done is because of the cost to bring anything the FDA classifies as a drug to market. 2.6 billion dollars on average. There are no grants out there that would cover anything close to that. So who is able to do it, drug companies. If you want to see how therapies should be brought to the masses look to the legislation Japan has.
So yes, although I can get a prescription here in the US to cover a drug that will cost my insurance company over $100000 a year, with most likely little efficacy for my wife's PPMS; I will once again have to get on a plane and travel out of the country, spending $25000 of my own money, to get her a treatment that actually works and without side effects of traditionally therapies.

Although it is true you can receive adipose stem cell therapy in the US, the numbers are not believed to be great enough to have significant benefit. Unfortunately expansion and reintroduction of cells in the US is illegal (surprise surprise).
Although that will be changing in Texas very shortly.

The average neulologist maybe satisfied when the MS is slowed with the new/better treatments available. But as far as I know even Ocrevus does not completely halt your MS. For a patient gradually suffering function loss and losing their independence is something horrible.
For agressive RRMS HSCT offers the possibility to really halt your MS for an unknown period and it frustrates me big time that HSCT is not available for so many. Neurologists should do a better job here and fight for their patients getting HSCT for MS in every hospital. For many lower educated patients it is impossible to read the scientific reports and learn about HSCT and where to get it, and how to pay for it. Neurologists should take care of this, not the patients.

It is obvious that people here are pretty vocal about this subject. I agree with the writer of this piece in her concerns, and her attempt to inform others of the risks. I really don't see much wrong with what she wrote. Unfortunately though I can see that there is a lot of confusion, and mixed up information in the reply posts. If I may, I'd like to try to help clear up some of the confusion. If you're asking how I know anything... I was a pre-med student before MS derailed my plans, after which I switched to molecular biology and volunteered in a university stem cell lab. Eventually I had to drop everything as my hands no longer worked well. But I kept up my studies and research for the past 15 years.

First of all, stem cell research is not exactly new. But as in the field of regenerative medicine, SCT is fairly new and still in its infancy. The field is incredibly complex, which is part of the reason it's taking so long to find viable therapies that are also safe. In the case of HSCT, it can help some people with multiple sclerosis, and yes a big part of that is destroying autoreactive and dysfunctional immune cells with chemotherapy to allow naive immune cells to grow and proliferate. But to say that it 'resets' the immune system is too simplified, and somewhat incorrect. HSCT therapy for MS has been available in the US for around 10 years now. It isn't FDA approved, but it also isn't illegal, it's considered an experimental procedure. HSCT isn't a cure, and it doesn't stop MS. It has been shown to delay neurodegeneration for up to 7-10 years in some people. Since no one knows exactly what MS is, there hasn't been any way found yet to arrest it. There have only been a few ways found to delay damage for some subsets of people. Also, if you have had the disease longer than ten years, or have been on certain immunosuppressant drugs, the procedure either won't work or would be too risky to try. It's fairly complex to figure out whether it's worth it and safe for each patient. It has nothing to do with sinister, money-hungry drug companies and other institutions. There are a dozen or so questionable companies offering more empty promises than anything else.

As far as stem cell therapies to regenerate lost nerve fibers... I'm sorry to say that is just not possible yet. No matter what the promises are, there is no way yet to grow what is gone. And with the central nervous system it gets exponentially more complicated. Think of this like a tree that has caught fire and burned down--you can't take the ashes and make a new tree, it's just gone. To the person who had the procedure done in the Bahamas, your story is similar to other people who've had similar procedures. There's no way to know for certain--because no one can perform a forensic examination on a living person--but based on what you wrote it doesn't sound like you had extensive nerve damage at the time, just more likely myelin damage that was cleaned up for a time. But since the underlying neurodegenerative process can't be stopped yet, the disease eventually catches up. Science is catching up fast with genetic engineering though, and we may see breakthroughs on that front well before stem cell regenerative therapies.

As far as people like Terry Wahls, it's impossible to know exactly what happened in her case other than she was very aggressive with her treatment fairly early. Her diet and other lifestyle changes won't reverse permanent damage, but that doesn't mean you shouldn't try anyway after careful research and talking it over with your doctor. Which brings me to my final point... no one is telling anyone not to try. There are lots of unknowns, and lots of possibilities. The main point here was to help clear up some confusion and give accurate information, because there's a lot of bad information out there. Just be careful, do plenty of research and educate yourself, and ask lots of questions. Are there unscrupulous people, greedy drug companies, and institutions that are careless and indifferent? Yes... but they're not the majority. Every day thousands, if not tens of thousands of people are working hard to find better ways to treat MS as well as trying to find a cure. Let's hope it's sooner than later.

Very well and thoughtfully put. I would also say your informative response is unbiased and balanced. Thank you for taking the time to contribute.

I just read you're article. I just returned from Mexico after having circumvention stem cell therapy. This is my second trip to receive my own expanded mesenchymal stem cells as an infusion. A treatment that is banned by the FDA. The FDA has approved antibiotics that we are now cautioned about because of adverse reactions. They approved imaging dye that they have now put a caution on. They allow the reworking of the same drugs which after several years of use show their ugly heads. They even approved a synthetic cannabis. I do not believe the FDA has the patient's best interest at heart. I am a patient with a chronic disease with no cure. It should be my right to try a therapy to improve my quality of life. The type of therapy I received is not a cure but has improved my life. I believe I would still be working if I had been able to try this when I was first diagnosed.