ALS research offers hope for those diagnosed with deadly disease
Posted November 21, 2019 3:59 p.m. EST
Updated November 24, 2019 11:19 a.m. EST
Raleigh, N.C. — A Duke University doctor who treats ALS patients is excited and hopeful after documenting cases in which patients who have the condition have seen it vanish.
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease, is a progressive neurogenerative condition that affects nerve cells and robs its patients of their ability to walk, talk and eventually breathe.
Those diagnosed with the illness generally live just three years on average.
Stories of survival
Nelda Buss was diagnosed with ALS when she turned 43 in 1985, and the wife and mother of two was not given much hope.
"You depend on your family to do everything," she said, adding that her symptoms progressed rapidly shortly after diagnosis. "You can't even go to the bathroom by yourself."
Thirty-four years later, Buss, who is now in her 70s and lives in Blacksburg, Va., is fully mobile and shows no signs of having ALS.
"I'm careful, but at my age you have to be careful!" she said through laughter.
She tried changing her diet, taking vitamins and even electric shock after being diagnosed with ALS, but Buss credits an energy healer with taking her disease away in about two years.
Buss says people have a hard time believing her story and think she was misdiagnosed.
"I wish they had a cure for it," she said, but advises those diagnosed with it to keep fighting. "It's a difficult disease and if you don't have all the support, it's very difficult.
"I'm glad I went through all that, (because) It probably makes you a stronger person," she said. "But to keep thinking about it, I don't think is a good thing either."
Dr. Richard Bedlack is the director of the Duke ALS clinic and is internationally known for his research and treatment of patients. He said when he hear about Buss and her recovery, it prompted questions.
"Well, when I found that case, I had some soul searching," he said. "I was kind of like, what does this mean?"
He has worked for more than 20 years to find a cure for ALS.
Bedlack started a worldwide online database called ALS Untangled, where patients and experts share information and hopeful stories experienced by Buss and others.
"In (her) chart, (it) had measurements documented that suggested she was paralyzed and quite near death," he said. "Whenever someone makes a claim that something helped them, we try to find that person (and) get their records (to) prove that they really had ALS and prove that something really objective happened."
Bedlack says so far he has documented 43 cases of ALS reversing.
"I've started to find these cases of people who look like they had ALS and got better from it," he said. "So I now know of 43 people from all over the world who once had ALS and either don't have any of it any more or got rid of most of it."
Via teleconference at a meeting in Utah, he recently spoke to a group of people who have made that remarkable turnaround.
"I'm constantly looking for things that give me more positive energy, so the more ALS reversals I find, the more excited I get," Bedlack said.
ALS no more
What links all these reversal cases?
Experts say in some instances it is an exposure to wood, although no one is quite sure why.
"Maybe there's something natural in wood that immunizes people against ALS so that when they get it, they get a mild enough case where there body can just fight it off," Bedlack said. "I know I don't have the answer to this disease right now. I have things I can do to make people's lives better, but ultimately I still can't fix it. So, I'm trying to keep an open mind and look everywhere I can."
Curcumin, found in spices such as curry powder, has been linked to five of the ALS reversal cases.
Researchers say it has also shown promise in the lab, drastically changing the progression of the disease in animals.