He wants to believe: Doctor searching for rare ALS reversals

Could this help treat ALS?
Could this help treat ALS?

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Could this help treat ALS? 01:20

Story highlights

  • Dr. Rick Bedlack seeks out people with ALS who have seen their symptoms improve
  • By understanding what's helping them, he hopes to find an effective therapy for ALS

(CNN)The multicolored Madras jacket is the first thing you notice about Dr. Rick Bedlack, director of Duke University's ALS Clinic. His fashion sense is by design.

In a place where there aren't many bright spots, he wants to bring a smile to your face. So if it's not the Madras print, it's a purple blazer with butterflies or a hot pink suit.
But inside the wild outfits is a man on a mission.
Bedlack considers himself the "X-Files' " Fox Mulder of his field. A poster with a UFO and the words "I Want to Believe" hangs above his desk and is the first thing he sees when he logs on to his computer every day.
Like Mulder searched for aliens, the physician is trying to find the light in the dark field of amyotrophic lateral sclerosis; you probably know it as ALS or Lou Gehrig's Disease, or the disease behind the ice bucket challenge a few years ago. ALS is a debilitating, devastating disease from which no one has ever fully recovered.
There is no cure for ALS and often not much hope.
The neurodegenerative disease disrupts the connection between the brain and the muscles, leading to weakness in the arms, legs and mouth, eventually causing issues with speech and even swallowing. Some patients can become locked inside their bodies.
Bedlack saw his first patient with ALS during his neurology residency in the 1990s. "Of all the things I had seen up until that point," he said, "I thought it was the most amazing and most terrible of all the diseases. Literally like an explosion went off in the nervous system."
What shocked him the most was the response doctors have given to the diagnosis. "The attending (physician) went back in and said, 'unfortunately, this is what you have, and this is what it does to people, and we just don't have anything we can do about it. So you should go home and get your affairs in order, and we can help you to be comfortable. That's about it.' "
Bedlack remembers driving home that day thinking, "we've got to be able to do more than that." And he did.
Though more is now known about ALS than ever before, the fact remains that no one has ever beaten this disease.
In 2001, Bedlack opened the multidisciplinary ALS clinic at Duke University in Durham, North Carolina, and here he thinks maybe, just maybe, there's a chance for patients to get better.
The patients at his clinic are rare cases with some hope, whom he has worked hard to track down -- including Mike McDuff.
Mike McDuff has seen some of his symptoms become milder.
McDuff, 64, was diagnosed with ALS in October 2012, after experiencing a decline in motor function for several years. His health rapidly declined, and he heard the same speech from his doctors that Bedlack had witnessed all those years ago: go home, get your affairs in order, and we'll try to make you as comfortable as possible.
McDuff called his adult children home to Massachusetts to say goodbye. He and his wife, April, picked out a plot for him in the local cemetery. He could barely speak and couldn't swallow, so he had to eat through a feeding tube.
But then, one of his friends mentioned a nutritional supplement called lunasin, which claims to have a range of health benefits, including antioxidant and anti-inflammatory properties. Some of its properties are theorized to slow the progression of ALS, for example through reducing the production of toxic molecules known as free radicals.
McDuff figured he had nothing left to lose, so in August 2013, he decided to try it.
Three months later, he began to see some results. "I couldn't put my finger on it ... but I felt a little better," he said. "I felt more energy."
At the end of 2013, he noticed that he was able to now swallow his saliva a lot better and decided to try his luck with some food. "My wife was making a nice pot roast dinner, and it smelled really good, but I couldn't eat, because everything was through the blender in my feeding tube," McDuff said. "I said, 'you know, hon, can you just give me a little bit of mashed potatoes and gravy? I want to see what I can do.' "
He was able to eat it.
"I started to cry," he said, "because I knew something was working."
McDuff's case is exactly the kind of rare exception to the rules of ALS that Bedlack looks for. He scours the internet and connects with doctors and patients around the world to find people experiencing what he calls an "ALS reversal." He verifies a patient's improvements by speaking with their doctors and examining their medical records himself.
If he's convinced that the person has ALS and not a disease with symptoms that mimic it, he gets to work, trying to crack the case. He calls it "ALS Untangled."
"I'm up to 24 confirmed ALS reversals now," Bedlack said. "People that I really ... believe they had ALS, and I really believe they are dramatically better." He has their records to prove it.
Today, McDuff can feed himself and speak clearly. Because of his success, Bedlack started a pilot trial based on the exact regimen McDuff followed, enrolling 50 patients. It began this year and will last 12 months.
It is too early to determine any lasting results, but at least one other patient, Matt Teasdale, is seeing an improvement after six months. After having no movement at all in his legs for months, Teasdale has been able to move leg muscles again and even lift them slightly.
Bedlack, right, has seen patient Matt Teasdale, 58, move his legs again in his trial.
For McDuff, it all comes down to quality of life. He knows that lunasin won't work for everyone, but maybe there's something doctors like Bedlack can learn from his case that could help even one person other than himself. Having experienced the worst of ALS, no one knows better than him just how important that could be.
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"I'm here. I'm alive," he said. "I got a better quality of life. I know there's a cure out there.
"We have to be very patient. I was one of the fortunate ones that it really helped me, and I hope I can help other people, too."
Given the complexities of ALS and the challenges researchers face in developing a treatment, the Motor Neurone Disease Association warns of the steps needed before announcing the arrival of a therapy.
"It is important that all drugs are rigorously reviewed for their safety and for evidence of a beneficial effect by conducting clinical trials," said Belinda Cupid, head of research for the Motor Neurone Disease Association. Motor neuron disease is essentially another term for ALS.
"Lunasin has interesting mechanisms of action that potentially could be useful in treating ALS/MND," added Cupid. "The way that clinical trials are designed is constantly evolving with new understanding of MND and with new opportunities to gather data, and we welcome a range of approaches that provide us with better understanding of the disease."