ALS Reversals: What Are They and How Can We Make Them Happen More Often?

My name is Rick Bedlack. I am a neurologist at Duke University in Durham North Carolina, and I started the Duke ALS Clinic 16 years ago. I am working to empower people with this disease to live longer and better lives and to have a greater role in research. I currently run the ALSUntangled Program (www.alsuntangled.org) and The Northeast ALS Consortium (NEALS) ALS Clinical Research Learning Institute. This is the story of a new program I recently started called ALS Reversals.

ALS is a degenerative disease of motor neurons, typically characterized by progressive muscle weakness, increasing disability and shortened survivals. It is widely recognized that ALS progression can be variable. It can be variable between patients, with some folks progressing much more slowly than others. It can also be variable within a given patient, with periods where the disease seems to speed up or slow down for a while. Less appreciated is the fact that ALS progression can stop (plateau) or even reverse with significant recovery of lost motor functions.

I encountered my first ALS reversal in July 2011, more than a decade into my career in ALS, while leading an ALSUntangled review of Dean Kraft, an energy healer. On Kraft’s website was a video about a person named Nelda Buss, who was reported to have been diagnosed with ALS at a top hospital and progressed to where she had lost nearly all movement and was near death. After two years of Kraft’s treatments, she was said to have recovered most or all of her motor function. I was skeptical. Nonetheless, I followed the ALSUntangled standard operating protocol and investigated. Eventually, I found Nelda Buss through social networking. I got her medical records and saw that her ALS diagnosis was sound, and had been confirmed by a trusted colleague at an excellent ALS center. She really did progress to having no strength at all in her arms and legs. Two years later she had recovered to where she was able to walk and use her arms normally.  You can read more about this ALSUntangled review here.

Since then, I have found 22 additional “ALS reversals.” Some of these were in old papers, some I found while conducting newer ALSUntangled reviews, one was in a clinical trial and two were my own patients. To me, these cases seemed important enough to focus further research on. I even found a precedent for such work: a study of HIV elite controllers [people who are infected with the HIV virus but never get sick] showed that many of them have the same genetic abnormality, which explains their resistance and helped researchers create a new drug that works for everyone with HIV.

I hypothesized that there were 3 possible explanations for ALS reversals:

  1. They did not have ALS in the first place, but rather an ALS-mimic that was so obscure that it fooled even experts;
  2. A genetic factor that made them “resistant” to the disease (like the HIV elite controllers);
  3. Positive effects from a new treatment these people started or from removing some toxic environmental trigger.

I designed two new programs called Replication of ALS Reversals (ROAR) and Study of ALS Reversals (StAR) to help me work through these hypotheses and was fortunate to receive start up funding for these from the LVH ALS Foundation.

In my ROAR program, I am testing the exact same treatments that folks with reversals tried in several more patients. In addition to energy healing, some of the other treatments associated with ALS reversals include Lunasin, Protandim, Aimspro, and bone marrow-derived stem cells through Brainstorm Cell, and embryonic stem cells through Neuraltus. There will be several novel patient-centric features of the trials in this ROAR Program, including:

  1. Broad inclusion criteria;
  2. Use of historical controls (no placebos);
  3. Few in-person study visits (most visits done virtually, on home computers);
  4. Results available in real time.

The first ROAR trial of Lunasin is underway; all 50 available spots have already been promised but we have published the protocol online, so that folks who want to try Lunasin on their own can use the exact same products and dosages as we are, and even follow their outcome measures and post them on PatientsLikeMe.

In my StAR program, I will be looking for obscure ALS mimics in people with reversals, and will be comparing their genes to people whose ALS does not reverse. The first thing this program needed to do was come up with ways to objectively define ALS reversals, and to find more of them. Last year, I worked with colleagues at Massachusetts General Hospital (MGH) and PatientsLikeMe to look for people with reversals in a large database called PRO-ACT. Our study showed that ALS plateaus and small brief reversals are not uncommon. On the other hand, large reversals lasting a long time are rare; less than 1% of more than 1000 eligible PRO-ACT participants had an ALS Functional Rating Scale-Revised (ALSFRS-R) improvement of at least four points lasting at least a year. This study taught us a lot about the natural history ALS, including what might be meaningfully different and thus worth further investigation.

Unfortunately, all of the participants in PRO-ACT were “de-identified,” so we do not know who they are and thus have no way to contact or further study any of them. I am currently working with a company called Origent Data Sciences, Inc. to define something called “ALS resistance.” This definition would encompass patients who have very long plateaus (like Stephen Hawking), or large, sustained periods of reversal. We think we might have found a way to identify “ALS resistant” patients in real time, which would allow us to find more of them and invite them into the StAR Program. Stay tuned for more on this exciting work later this year.

If you have been diagnosed with ALS, have experienced a marked improvement in motor function, and are willing to participate in our StAR Program, please contact us through our website at www.alsreversals.org.

48 thoughts on “ALS Reversals: What Are They and How Can We Make Them Happen More Often?”

  1. My husband was diagnosed with ALS in January. We saw the clinical trial with Lunisan and purchased it for my him to use, same doses as in trial. We have been on for two weeks. We have seen SMALL and I repeat Small improvements in him. Hopefully if he stays on it, they will continue.

    Liked by 1 person

    1. Hi Debbie

      Hope you are doing well . Could you please let me know how’s your husband doing now . My mother has recently been diagnosed with ALS and we want to see if it has been useful

      Like

  2. Keeping hope alive. I was diagnosed with ALS March 2014. I am doing great mentally, emotionally and spiritually. Fighting the good fight physically. I can still walk but not great distances.

    Liked by 1 person

    1. Pls I’m interested in the ALS reversal program. My brother was diagnosed with it January 2019. He has lost so much weight & limb muscles are gradually wearing off. I need your help.

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  3. Does anyone know, if a neurologist prescribed these things for a patient, would insurance cover the cost? I realize they are over the counter supplements but maybe somehow they would be covered because they are basically in a specialty category. Money is no object when it comes to my moms life, but if insurance would help with the cost that would be amazing.

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    1. Insurance covered my medicine (Riluzole) and it cost me $385/month. I went online to GoodRX.com and found a coupon and now I get the same medicine for $185/month without my insurance.

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  4. Lunisan……does this need a doctors script.? My son was diagnosed 2 1-2 yrs. ago. He has very limited use of his arms/hands, he is still walking and driving, but this seems to be getting tougher for him. Tires quickly and uses a machine to help him breathe at night. Will have him ask his doctor about this medication and hopefully he may be a good candidate.

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    1. I googled Lunisan and found a distributor in my area. He is shipping to us. Our Doctor didn’t need to prescribe. However it isn’t cheap. But if it helps, the cost is worth it. Our results are minor improvements but improvements none the less. Good luck.

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  5. Unfortunately, my daughter succumbed to her ALS. She fought the good fight and was an example to all in the family of her courage and faith. I know she’s happy and healthy again. For those who are still fighting – never give up. You will know when you are ready to leave this world. I love you all. Good luck!

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  6. Recently started LunaRich X and ramped up to 12 caps daily as of today. Too early to tell, of course, but with bulbar-onset ALS any change in my voice and/or swallowing will be instantly recognized. A positive change in lung capacity would be quickly felt as well. I strongly echo the keep fighting and never give up hope comments. All PALS are potential reversals, so we all need to believe it can happen to us. Love to all on our Cure Journeys!

    Liked by 1 person

  7. Hi friends my husband was diagnosed with Als In 2014. It was the first time we heard about this desease. Yes it is very difficult to accept your loved one to go like that. This helpless feeling is killing. I read this blog and get some hope may be this will help. Plz guide me how can I contect to the concerned people. Or what is the procedure to contect them.
    With good wishes.
    Regards.

    Liked by 1 person

  8. i am into my 8th year of this als. i feel i am being strangled by a giant boa constrictor,mine from the bottom up, others from the top down like my brother who passed so quickly. i just started lunisin from Reliv. at least i now have hope
    bless you all

    Liked by 1 person

    1. my mom is going to ALS and I bought Lunasin. I hope it will work (cross my fingure), my prayers for everybody and I will update the results

      Like

    2. Hi I was diagnosed March 2017 but was running around from doctor to doctor before that. Mine started on top and now has progressed into bottom I can’t walk very little but need assistance as I have no balance. It is sad how this disease has no cure with all the technology we have. All we can do is remain positive and pray.
      I read on Lunisan and want to give it a try.

      Liked by 1 person

      1. Hi, Luz
        I was diagnosed last Aug.2018
        Mine is slow so far . Have you started the lunisan?
        Thanks for any feed back. God bless you.
        Julie

        Liked by 1 person

  9. Just wondering if any documented cases of reversal were seen in familiar ALS? And if the genetic Sod 1 gene was involved in any reversals?

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  10. My Dear PALS,

    My heart goes out to you all. I was diagnosed with both bulbar and limb onset in Nov 2011. I was given only one year, and was in severe decline. But my wife and I accomplished the supposedly impossible. Dr Bedlack added me to his Reversals list last year, #24.

    We tell no one what they should do, but only what we have done. Find my story at http://www.alswinners.com.

    May God bless all our PALS and those that love them.

    Liked by 1 person

  11. You have inspired me to continue to gain as much knowledge as possible. I am a current medical student that has decided to step outside of the box to focus on nature and genetics for cures. The constant negativity and close minded approach is what drives me to medicine but also scares me away in fear of becoming stuck in a dead end not knowing where to look next. I look forward to continuing to follow your work and I thank you for it.

    Liked by 1 person

  12. We’re not sure we think I have als. But it could be the hereditary als thing. But I’m looking into Lenison I see a lot of people talk about it. Please give me your experience on it thank you

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  13. Any information on this trial would be greatly appreciated. My dad diagnosed in July 2013. He isn’t allowed Radicava because of his oxygen levels and other factors. Is this safe for any ALS patient at any time during their journey with ALS? Just need info to pass oto my dad’s amazing caregiver….my mom, whom keeps him moving and he keeps her moving everyday.

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  14. I have aggressive ALS. I am taking riluzole and radicava. The radicava is not slowing down the disease and I am still declining. I’m considering Lunisan. Do I stay on all my meds?

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  15. I have ALS. I would welcome any help with my disease. I am 72 years old. I taught skiing and was an extremely active person. My arms do not work anymore. I love sewing, crochet, and knitting. I love quilting. I container garden. Don’t know if I will be able to do it in the coming year. Please help!!

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  16. I am the daughter of an ALS mother who died at 56 and was diagnosed with ALS at 55. That was in 2001, I lost hope long ago as I have had Juvenile Type 1 Diabetes. Hope to me is a dangerous thing, that is all my family heard since I was 4. My mom did not deserve the horrible ALS diagnoses, she was not happy, cried all the time, and did not smile. It makes me sick seeing people smile with ALS like there is a cure coming soon, my mom was so happy, loving, and funny, before ALS. Prayers did not help, mom was miserable, she could not move, could not breath, and could not talk. She was scared, and I lost my sweet Swedish mom to the most horrible disease there is. There is no being positive, it’s a death sentence. I agree, where are all the cures at??? I miss my mom almost 18 years now, and my heart is broken. Life is so cruel.

    Liked by 1 person

    1. Hi Victoria,
      I’m so sorry to read about your mom.
      I had to reply. I kind of feel the same
      way you do. My younger brother was
      diagnosed with ALS back in 2013 and
      he passed away in August 30, 2014.
      I was his permanent caregiver, and
      it broke my heart to see him in the
      condition that he was in. I was his older brother. He passed when he was
      52, just about a month before his 53rd
      birthday. He was a young kid. I could
      not believe that there is no cure for
      this disease. With all the technology
      that we have today. I was thinking about Lou Gehrig, he to passed from
      ALS, over 70 years ago, and there still
      is no cure. If they could at least come
      up with some kind of method of
      slowing down or stopping the progress
      of the disease that would be a good
      thing. All I could say is you have to
      carry on Victoria and make the best
      of it. And lets hope that no one else
      that we know develop’s that horrible
      disease. I said that that disease came
      from Satan himself. And I really believe that.

      Liked by 1 person

  17. My father is diagnosed with ALS Oct last year now he can’t lift both of his arms properly. He is taking various supplements, medicine prescribed by neurologist,massage and physiotherapy still the disease is progressing very fast. The situation at home is miserable please help if the disease progression can be delayed

    Liked by 1 person

  18. My husband was diagnosed just last month so far he lost his speech and weakness in his arms but we danced all night no problem with The strength in his legs. We still have to see the ALS specialist but it’s taking time and we’re not sure how much longer. So I’m asking you is this something unusual that he could dance all night with ALS . They say that they were other conditions that mimic ALS or am I just wishing too hard. He does have the week arms but can still drive just fine . What other condition can mimic ALS. Thank you for your time I will be waiting for you to get back to me if you have any Thing you could tell me about this condition

    Liked by 1 person

  19. I was diagnosed in 2017, Bulbar, I can feel the mucle weakening now. It can be frustrating and discouraging but I am holding on strongly to my faith while also hoping there will be a medical break through. I always wonder ‘why me’. Life can be so unfair but it goes on. I believe strongly that there has to be a way out and Almighty God is in control. Just hearing of Lunisan, will delve more into it if it can help.
    There nothing one can do but to have faith keep hoping things will get better.
    Need to stay strong.

    Liked by 1 person

  20. My first symptoms of ALS occurred in 2009, but was diagnosed in 2011. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then i decided to try alternative measures and began on ALS Formula treatment from Herbal Health Point, It has made a tremendous difference for me (Visit ww w. herbalhealthpoint. c om).  I had improved walking balance, increased appetite, muscle strength, improved eyesight and others. 

    Liked by 1 person

  21. I was not diagnosed with ALS, but my doc knew I had some sort of autoimmune disease that she could not yet put her finger on. I was pretty sure I was slowly dying. My aunt was having weird symptoms and while we were talking, we recognized that out symptoms seemed identical. Soon after, I went to a new dentist who put me on a year-long course of a periodontic antibiotic (after also performing some minor surgery to remove infected gum tissue that my previous dentist had turned into hamburger meat). My memory is imperfect, but I think the antibiotic may have been called periostat. I seem to recall the name indicated its dental application. In any event, whether from the antibiotic or the clearing up of the infection (I do believe I had symptoms even before the infection, but I cant be sure), I became increasingly well very quickly. My aunt went on to be diagnosed with ALS and dyed from it.
    While there is no proof that mine was an ALS remission, it seemed like it may have been exactly that. Pretty sure I saw someplace that researchers were investigating treating ALS with low dose antibiotics. I post this in the event someone else may find relief. This was probably about twenty years ago and I went from seemingly dying to being healthy again.

    Liked by 1 person

  22. My sister was diagnosed and her symptoms are skewed slightly. She cannot eat at all is totally on tube feedings ,has some breathing difficulties but is able to ambulate and maneuver herself without appliance. She was down to 70 pounds before she was diagnosed since diagnosis she has gained 6 pounds . It is possible that there is a mis diagnosis because she is physically self care ambulation . Have been a nurse for 30 plus years and have cared for many ALS patients and this is so different. ????

    Like

  23. Am Taylor Howard by name, i was diagnosed with ALS for 8 years and i lived in pain with the knowledge that i wasn’t going to ever be well again i contacted so many herbal doctors on this issue and wasted a large sum of money but my condition never got better i was determined to get my life back so one day i saw a post about Herbal Health remedies Foundation , i contacted Herbal Health remedies Foundation, we spoke on the issue i told them all that i went through and they told me not to worry that everything will be fine again once i used their herbal product, so they send it to me through courier service and told me how to use it, after 15 days of usage I went to see the doctor for test then the result was negative am the happiest woman on earth now. Thanks to Herbal Health remedies Foundation.

    Liked by 1 person

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