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MS Cures in the News, Again

You know you are in for a story when someone, usually a stranger or the next  best thing such as a very casual acquaintance, tells you ‘my aunt had MS but she cured it with ________ (fill in your choice of ‘cures’).

I’ve had cures recommended to me often – and have heard about bee stings, hyperbaric oxygen, and chronic cerebrospinal venous insufficiency (CCSVI), more than is necessary. In spite of the rigorous scientific evidence that these don’t work for multiple sclerosis, these supposed cures just won’t go away.

I remember my own aunt who lived with MS for over 50 years talking about bee venom therapy and opting to not try it, even though this was long before the disease modifying therapy drug options were available. Even though the idea that getting stung hundreds and thousands of times by honey bees will stimulate the immune system to beat multiple sclerosis is not proven effective, people still talk about it.

There is a great explanation from the Science Based Medicine Organization about how anecdotal stories, those without proof, grow into a larger phenomenon. Due to the relapsing/remitting nature of MS, it is quite probable that the few people who believe they have experienced relief from BVT are just in a remitting stage, with no noticeable MS activity. It would be easy to believe that bee stings cured me if I had them happen as my body went into a remission. Of the thousands of people who have tried BVT, there are only a handful of people who claim to have controlled their MS through this treatment; we rarely hear from all the other who try something different and it doesn’t work, including the thousands who put their hope in bee stings. The NMSS sponsored research into BVT and found no evidence it works – and that was in 1998. Almost twenty years later there are people who want to believe bee stings will help me.

Hyperbaric oxygen therapy for MS research was promoted as a cure even earlier than bee venom therapy and it was also a failure in studies. There is no proof that spending extended periods of time for multiple days and even weeks in a hyperbaric oxygen chamber improves MS. There have been even more studies done on this form of alternative treatment than bee stings, according to a search of PubMed.

The verdict is out on stem cells therapy – it is still much too early in the studies to say self-donated transplants work, which means it is still even more too early to hop on an airplane and fly to a third world country or remote island in the Caribbean or to India or Russia, to have a stem cell transplant. If this is a treatment that works there, it will also work here in the US once the studies that are underway are completed in another few years but for now there can be significant risks. Recently an acquaintance told us about the daughter-in-law of a friend of his parents who had been in a wheelchair from her MS and could barely walk until she made a trip to a clinic in Mexico for stem cell therapy. The version I was told had a happy ending but I have since found out the reality is there was no miracle cure for her and she was out a lot of money for a three week stay in a Mexican clinic.

What has me thinking about all these supposed cures again? Just when I thought this story about another fix for MS had finally died down, it’s back in the news again and I have had several people ask if I had heard of this cure……

A current ad on Facebook proclaims an Italian doctor has found ‘a surprisingly simple’ cure for MS.  Of course I had to click to follow the link, only to find it was a story from 2014 about CCSVI. There have also been a number of well meaning friends and acquaintances excited by these ads, contacting me to be sure I had seen this cure. I’m not sure why it is making the rounds, but it sure is getting people to notice it and keep the talk going about this “liberation” procedure that hasn’t been proven.

CCSVI is perhaps the best example of how the vocal crowds can create such a demand for something that resources are diverted from elsewhere to study it even though there was no proof to base further research upon. Millions of critical research dollars for MS was used to look into the CCSVI, thanks to the anecdotal stories of a few patients and the very loud demand from people with MS that this must be the cure.

What we know about CCSVI comes mainly from a few positive patient stories such as the Science Based Medicine’s explanation of why bee venom theory took hold, but we don’t hear from all of the people who have had this done and were disappointed in the results. There has even been a study done on the effects of these anecdotal stories and the use of social media to promote CCSVI.  To the best of my knowledge all of the rigorous scientific research studies done to test the CCSVI theory show there is no correlation between blockages and MS.

In addition to not being proven as effective for multiple sclerosis, another key thing all of these treatments have in common is they can cost significant money to the patient and are not covered by insurance. The cost of travel as well as the treatment itself can run into tens of thousands of  dollars.

More significant, though, is these treatments are potentially harmful.

  • Bee stings can cause a person to go into shock from an allergic reaction to the venom.
  • Complications from Hyperbaric oxygen therapy are rare but could include burst eardrums, change in vision or even seizures.
  • Organ damage, failure to work as proposed and even death are known side effects of stem cell therapy.
  • The FDA reports for CCSVI lists complications such as death, stroke and migration of stents placed in the procedure as the major risks

Of course we all hope for the cure that will be simple and relatively accessible to everyone, but there isn’t one for MS yet. Instead of trying any of these unproven treatments, you would be better off taking your money and enjoying a day at a spa or a longer vacation – stress free time to relax has been shown to be more beneficial than any of these other methods.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • clsuhre
    3 years ago

    The “cure” most frequently touted (in my news feed at least) is gut bacteria. Probiotics and a healthy gut will take care of everything from MS to Lyme, and even hangnails, it seems. Frankly, and sadly, I don’t think we will see a cure for MS. Ever. There is so much money to be made treating and maintaining disease! I believe Big Pharma would be shooting itself in the foot to cure these cash cows.

  • Laura Kolaczkowski author
    3 years ago

    I don’t necessarily agree with the thought that Pharma will keep us ill but there is certainly no financial incentive in finding the cure UNLESS they are the one that finds that golden answer. Gut health is certainly new to the chatter and when you think about the long history of MS it doesn’t seem to fit in. -laura

  • jackie5275
    3 years ago

    I, too, think the stem cell treatment is the most promising. However, the thought of wiping out your immune system with chemotherapy seems pretty dramatic to me. I’m pretty much playing it safe & taking a “go with what you know” attitude. Heck, I haven’t even tried any of the oral medication because I know Rebif is working for me. However, should it be proven to safely work and is something I could afford or have insurance cover, I would do it in an instant.

  • DonnaFA moderator
    3 years ago

    Hi jackie5275! It’s awesome that you are pleased with your treatment protocol right now, and it certainly makes sense to stick with what works. Stem cell therapies do look incredibly promising. Our article An Interview with Dr. Saud Sadiq – FDA Approves Phase II MS Stem Cell Study Conducted by Tisch Research Center of New York which is a really in depth, and intriguing interview with a researcher going into a Phase II trial that might interest you.

    Thanks for being part of the community and sharing your thoughts! -All Best, Donna(MultipleSclerosis.net team)

  • Julie
    3 years ago

    There has been a lot in the news lately about stem cell therapy. While I believe the people when they talk about their return of feeling normal again, I also see most of them have to go back for another treatment. I’m not sure this can be called the “cure” that so many have claimed it to be.

    I understand the need to believe there is a cure. Believe me, no one wants a cure more than I do. I don’t think there is going to be a cure until they can pinpoint exactly where MS comes from, what causes it and why it affects people in various ways.

    Still, I think stem cell therapy is the most promising thing that I have read up on. I stay encouraged that research is ongoing on our behalf. Maybe one day soon I can say it never affects my thoughts daily anymore. Waiting….

  • Laura Kolaczkowski author
    3 years ago

    Thanks for sharing those thoughts, Julie. I would really like to hear from everyone who has had this procedure done and not just the few people who appear and say it worked for them. – Laura

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