Reply All - #85 The Reversal

Episode Date: January 18, 2017

For years, Dr. Richard Bedlack has hunted for a cure for ALS, a fatal degenerative disease. And then one day he builds a website called ALS Untangled. That's when strange things start to happen. Reported by Peter Andrey Smith and Reply All producer Sruthi Pinnamaneni. Further Reading The ALS Untangled website Dr. Richard Bedlack’s ALS Reversals website The PatientsLikeMe website The ALS TDI website Nelda Buss wrote a book, You Can Walk, about her experience, and she originally appeared on Fox in 1992 Eric Valor’s website Angelina Fanous’s reporting on VICE and The New York Times Peter Andrey Smith’s website Learn more about your ad choices. Visit podcastchoices.com/adchoices

From Gimlet, this is Reply All. I'm Alex Goldman. And I'm PJ Vote. This week, we have a story from... You're not going to say, like, happy new year? You're just going to get right into the show? If I have to. Happy, it is nice to see you in January.

It's been a minute. Happy New Year. Welcome to 2017. Welcome to 2017. What's your resolution? Here's the God's honest truth. I don't really have resolutions, but there are goals that I set for myself,

but I don't like saying them in public because I feel like then people can hold me to account for those goals that I set for myself. That's the point of a New Year. Sorry. Shrithy Pinnamennanis in the studio. Hi. Castigating me. Shrithy, you're here because you have a story. Oh, boy.

I know a little bit about your story. Yes. Can I say what I know? Please. So what I know about your story is that it is about ALS. ALS is a fatal disease and like a very bad one. Like basically if you are diagnosed with it, your doctor will probably tell you, like, you have a fixed amount of time. You're going to die.

Like, people can do things to make you more comfortable, but that's kind of it. The classic thing that you hear is a doctor gives you the diagnosis and says, you know, go home, get your affairs in order. Right. But your story is about a very different kind of doctor. A very different kind of doctor. Who's trying to find a cure in a way that is extremely unusual. Yeah. So his name is Dr.

Richard Bedlack, and we actually first heard about him from a reporter named Peter Smith. Peter and I reported the story together. You'll hear from both of us. Here's Peter. So in September, Shruthi and I took a trip to Duke to meet Dr. Bedlack. There he is. Hello. Hello. Peter. Hey, I'd see you. Hi. Shrithi. Good to see you, Shrithi. Bedluck is the head of the ALS clinic at Duke University, super well-respected neurologist.

But he honestly looks like no other doctor I've seen. He's got purple pants on, he's got a white suit jacket that's printed with butterflies. He actually looks like a stylish Willy Wonka who just rolled into the room, and he's holding this old-fashioned-looking leather satchel. It is. This is an official medical bag. My parents got this for me when I graduated from medical school. So where are we going? My office. So we head upstairs. All they're littered with things that remind me of all the fun times I've had.

Bedlock walked into his office, and then he sat down. Right underneath an X-Files poster has a UFO and says, I want to believe. The X-Files comes up a lot when Bedlock is talking about this path that he's ended up on. Like, when we ask about how it all started, he says, you know how Fox Mulder had a sister, Samantha, who opened his eyes to the existence of aliens? Well, he, Bedlock, he too has a Samantha. I'll never forget, there was a patient that I saw early in the course of my career, and she came in. She was very early in the course of her ALS, just slightly affected speech and swallowing, still easily understood. Bedlock knew that this patient was at the beginning of this terrible decline, which typically goes something like this. First, she wouldn't be able to move her arms, then her legs. She would slowly lose her ability to swallow and talk, and then probably within about three to five years.

she would die. And this entire time, her brain would be fine, and so she would be basically witnessing all of it. Bedlach told her the usual. There's no real treatment, but there was this experimental drug trial that she could enroll in. And she said, you know, I'm going to pass on the research study because I read about something on the Good Morning America website called oral sodium chloride. And that's what I've decided I'm going to take. And how did you feel when you heard that? I was stunned. I was kind of like Fox Mulder, you know, when he first realized that, yes, there definitely were aliens starting to colonize the world. It was stunning. And I remember just kind of not knowing what to say and driving home that day, scratching my head and wondering, like, is this common that people with ALS, you know, would go on to the internet and find things and just try them?

Because this was the first patient that really told me that they were doing this. So that weekend he did a bunch of research. He even called the manufacturer that makes sodium chloride. And long story short, turns out the reason they didn't develop it orally is that saliva breaks this molecule down and it becomes something called chlorine dioxide, which is potentially deadly. So chlorine dioxide is most commonly used as a bleach. And so the first couple of people that they tried oral sodium chloride on, you know, collapsed and had to be rushed to the hospital. So Bedlock tells this patient, I would not recognize. recommend that you try the sodium chloride stuff. And she doesn't. But at this point, he's thinking,

okay, so patients know this disease will kill them and their doctors have nothing to offer. So how many of them right at this moment are trying something incredibly dangerous to save their own lives? So in 2009, he decides to find out. He builds a website called ALS Untangled. Okay, so we got the ALS Entangled website up. What does it look like? The main page of my website is my Twitter feed for ALS Untangled. So every day, I go on to the ALS Untangled website, and I look to see, did anybody send me any new tweets today that I need to respond to, right? And Bedlock tells ALS patients, if you hear of any new treatment, send it my way. And they do constantly. I mean, these things come right to my phone. Pretty much every day, I'll be sitting at a movie

with my wife, and here comes a tweet. Dr. B., what about fecal transplants for ALS? Badlock realizes that there's this whole world of things that patients are trying and not telling their doctors about. So he decides, in order to protect these people, he'll do exactly what their doctors will not. He'll look into these treatments no matter how outlandish they are. There was a stem cell clinic in Mexico that was injecting stem cells into the front of patient's brains. They were drilling a hole in their skull and put a needle and injecting stem cells into. to the front of their brains. One out of 10 people died a few days after the stem cell transplant.

Well, something that has a 10% death rate is not necessarily what I would consider it to be safe. Bedlock is studying everything. Supposed cures like hyperimmune goat serum, spirulina, bee venom, supposed causes like Lyme disease, and all kinds of treatments. Like at one point, he visits this clinic where the lead doctor says that he can cure ALS by leaching metals out of the body.

He showed me the inside of his mouth and his wife's mouth, and they've all had all their fillings taken out. And so it goes like this for years. People send Bedlack their miracle cures to his site, ALS Untangled. Bedlock investigates each one, publishes a scientific paper, puts it up on his site. And it always turns out the same way. Either the cure doesn't actually work, or sometimes people were lying, or sometimes the person just didn't have ALS in the first place. But then, in 2014, Bedlock learns about a case that he just cannot explain. It comes from this ALS patient named Mike McDuff, who was making a wild claim about a supplement he's taking. April and Mike McDuff. I'm going to ring the doorbell. So last summer, Shruthi and I went to visit Mike at his home.

Hello, Mike. Hello, hello. You're like a fist bump? Yeah, sure. All right. He was sitting in his recliner, leaned back, so that it was almost like he was lying down. Mike told us that he used to be a machinist, but then in 2012, he got his diagnosis, and the ALS moved fast. It hit my arms, and then it hit my throat.

I couldn't swallow, then I couldn't talk. Then June of 2013, I had a feeding tool put into me, and I looked awful. I look gray, my eyes were black, all sunken in. You know, every day I can feel myself going downhill. Mike and his wife had basically given up hope. They picked out a plot at the local cemetery. And then a couple of months later, her friend Wendy calls, and she tells him she's selling this supplement.

Right. The supplement that's made from soybeans and it's called Lunason. And I says, you know what? I said, I got nothing else to lose. my doctor really couldn't give me any hope. So what my wife did, she took the lunison, put in the blender, blend it right up, and she put it right through my feeding tube. At first, Mike said he felt different, but couldn't really put his finger on it.

And then came this big day. That I never forget it. It was the end of December. My wife had company over, and she was making a really nice pot roast dinner. So I said my wife, you know, when I had come over when I whispered to me, I said, I said, honey, says, can you just give me a little bit of mashed potatoes and gravy? I want to see if I can swallow it. So she did.

She just gave it a little bit with a spoon. And you put it in my mouth, put it in my mouth, put it in my mouth. And I chewed it. It was delicious. I couldn't believe how good. And I could taste the potato. I could taste the butter in the potato. It was so good.

I couldn't believe it. I was so excited. And what did your wife say when you were able to swallow it? She started crying. trying too. We're both so happy that I was able to, you know, it's a squall. And for the last three years, it stayed like that. He can feed himself. Obviously, he can talk. And sometimes he can even walk with assistants. This is crazy. There are a few people with the disease, think Stephen Hawking, who get worse much more slowly than others.

But people with ALS aren't supposed to get better and stay better. So when Bedlake heard Mike's story, he decided that it's not enough to just write up a paper. He decided to do something he's never done before, a trial. He says, you know, he says, Mike, us, doctor, he says, we sometimes have to think outside the box. And I was flawed. I go, thank you, Dr. Ben lack. Good for you. So last spring, Bedlack enrolled 50 real ALS patients to come to his clinic.

to take the supplement, Lunison, a supplement that, you know, people sell to their neighbors. And he's giving it to these patients to see if they get better. The trial is still underway, so there's about nine months left. And Bedlock told us that it's just way too early to reach any real conclusion. But so far, Lunason hasn't led to the dramatic improvements we saw on Mike. So if it turns out that Lunason isn't the miracle cure, then what could you? be making Mike better. Is it the world's greatest placebo effect?

Is it his toothpaste? Is it the air of Westport, Massachusetts? Or is it Mike's eight cats? Or is there a possibility that it's Mike himself? Coming up after the break, the aliens among us. Welcome back to the show. Here's Shruthi. So Peter and I are sitting there in Bedlach's office,

and he's telling us that maybe the reason that Mike got better isn't about what he took, it might be Mike himself. And we thought, but that doesn't happen in ALS. But he said, I think it actually could. It's an idea that came to him years ago. He'd been poking around, you know, looking at various unlikely treatments for ALS untangled. And he came across this video that was just spooky. It was of an ALS patient who is a way, way more extreme.

version of Mike McDuff. He pulled it up on his computer. Nelda Bus was diagnosed with ALS, amiotrophic lateral sclerosis, better known as Lou Gehrig's disease. You see a woman in her 40s with a bob cut. She's in a wheelchair and is being lifted out by her husband. You could see the atrophy in her arm and her hand.

I gave away most of my good clothing that I had, and I had my dress all picked out for what I was to be buried in. And then Nelda hears about an energy healer, a man named Dean Kraft who says that he heals people just with the touch of his hand. She makes an appointment with him. I said that the doctors say there's no hope. And he said, well, he said, that's not always true. Kraft did his lane out of hands for three months. You see Nelda lying there in front of Dean while he touches her head.

And here's the wildest thing. Nelda says that over the next several months, after this energy healing, she got completely better. Within a few years, she's out of her wheelchair, and you see her in the video, and she's suddenly building snowmen with her son. How's that? Everything has changed. She's back and she's doing more than she ever did before. Pretty amazing. I mean, it gives me the goosebumps.

It gives me the goosebumps every time I see it because that's what I would love to be able to do for people, exactly what I'm. happen to that lady. I just have to figure out why it happened if I'm going to make it happen again. Back in 2010, when Dr. Bedlock first saw this video, he managed to track down Neldebus. He got her medical records. And they're from a great hospital, the University of Virginia, and she had a really solid neurologist. I'll never forget looking through those records because I turned to my wife and I was like, my jaw was open. I said, you know how people already think I'm kind of crazy in this field? Wait until I get up at the next big meeting and say, I think I might have found the cure for ALS.

It's energy healing. And she's like, what are you talking about? I said, this lady had ALS. I'm sure of it. And she's like almost completely recovered. It's unbelievable. At this point, Bedlock did something that I would call radical. He reached out to Dean Craft, the energy healer.

And I said, I don't understand what you're doing. And I'm going to be probably a pariah for even doing this. But I want to do a small study of your energy healing. I have to ask. So how do you test something like energy healing? Well, I mean, it's not been done, so there wouldn't be precedent for it. But the way I would do it is I'd say, look, I want you to do the exact same treatment schedule that you did to Nel de Boos, the exact same frequency and duration. I just need you to treat like 10 of my patients.

And his response was just priceless. I'll never forget it. It was an email and said, Richard, for those who believe no proof is necessary. And for those who don't, no proof will ever be enough. And that was the last that he ever talked to me. Bedlach wrote up a study anyway. He wrote, in our opinion, Dean Craft's energy healing lacks a plausible scientific rationale.

Without more evidence, ALS Untangled cannot support this expensive alternative treatment for ALS. And even though he's not recommending energy healing, some of his colleagues who help out with ALS Entangled, they were uncomfortable that he'd even considered studying an energy healer. I mean, this is not what scientists do. And when we asked Dr. Bedlock about this, he gestured at himself in his butterfly jacket. As if to say, look at me.

I mean, obviously, I'm not sticking to the status quo. I guess I kind of like to make waves. I mean, it's the hair, the clothes, that kind of stuff. It's kind of fun to, you know, rattle the cage a little bit. If things that we were doing were working real well, like the field, was just exploding with successful treatments like we have with migraines and seizures and things, you know, there wouldn't really be room to rattle the cages. But I think in a field where we're stuck, we really don't have anything that works. It's why not have people thinking outside the box

and doing things different? So you're saying because ALS is incurable and terminal and terrible, that's why really necessitates you just... It leaves room for people like me because we don't know what the right approach in this field is. In other words, we don't have enough good ideas. So maybe we should consider the quote-unquote bad ideas. We should be wondering about the things that science cannot explain, like Nelda. Because if she got better, she could be the key. And Bedlock, he's curious about more than the energy healing.

He actually has a hypothesis for how Nelda could have gotten better. He thinks that maybe Nelda has a specific gene that as her ALS progressed, this gene kicked in, stopped the ALS, and allowed her remaining motor neurons to regain strength. Like, if he could figure out what that gene was, it could be huge. And there's a precedent for this kind of thing. That's happened. I mean, you know, in HIV, there's a group of people called elite controllers, people who get infected with the virus but never get sick.

And it's been a mystery for a long time until somebody finally put all those people together and studied them and found that a lot of them have the same genetic abnormality in a gene called CCR5, and somebody even developed a drug that blocks that pathway. It works for everybody with HIV, so maybe I can find something like that that'll work for everybody with ALS. But Bedlock has a problem,

even if his gene theory would explain Nelda Buss. She has read his paper, the one in ALS entangled, and saw the part about how there's no plausible scientific rationale for what she thought was the cure. Well, Nelda Boos got kind of upset about that. She actually was not happy with me for not just accepting that it was Dean Kraft and that this was incredible miracle,

that this is a treatment that can work for people with ALS. Nelda wrote him a letter and said she was very disappointed. She would not let him study her anymore. And that was it. She was gone. But Bedlock could not stop. stop thinking about Naldas case. And he started to wonder, could there be other cases like her? He'd ask his colleagues, hey, have you heard of anyone like this? And they usually didn't know what he

was talking about. One of the most common things that I hear is I had no idea that that could happen. And it's usually the older docs that have been doing ALS for even longer than I have that come forward and say, yeah, I remember over the course of my career seeing one or two people like this. And, you know, in the back of my mind, I thought that maybe they didn't have ALS. But one of the frustrating things is that a lot of the docs that tell me this, they no longer follow those patients. This kind of floored me. The idea that there could have been patients who did recover and that somehow the entire medical community just missed it. But Dr. Bedlock, way out in the fringes, he started to find some of these people, none of them as dramatic as Neldebus.

But still, each of these stories is incredible. He found Mike McDuff. And then... This is a person who has his own website. His name is Kim Cherry. He is an ALS reversal. Kim Cherry recovered his ability to breathe and swallow. There's another patient named Derek Swinard.

He has some balance issues, but he's actually able to go out and play golf again. Today, Bedlock has compiled a list of 24 people. People he considers real reversals. And he stores all their files in a cabinet in his office labeled with a big X. He calls him his ex-files. And he's found that as excited as he is about finding these people,

a lot of them are extremely wary of him. There's people on this list who've just decided to shut themselves off from any kind of mainstream doctor or scientist because mainstream medicine told them one thing, and they went out and found somebody who told them something different and embraced that person's ideas and got better from something they weren't supposed to get better for. from. So I'm trying to deal with, you know, casting myself out of that stereotype of the typical,

you know, maybe mainstream, doom and gloom neurologist. You seem like the complete opposite of doom and gloom in my mind. I appreciate that. If I convince these folks of that, maybe more of them will send me their records and I can bump this number up higher than 24. ALS is a complicated disease that scientists all over the country are trying to crack. And even with all the attention from the ice bucket challenge, who knows what approach, if any, will ever lead to a cure. But the reversals project is Badlach's Bat. And slowly, one by one, he's been convincing those people to talk to him.

And he actually called me one day and said, hey, I've read your website, I've read your story. This sounds a little unbelievable. Can you tell me about it? This is Kim Cherry. Kim said that this was a first, a doctor, a neurologist who wanted to live. listen to him. I mean, it was refreshing. It was absolutely refreshing.

And then the best thing that's happened to Bedlake in a long, long time, it actually happened because of Peter. He'd been wondering about the most incredible case of them all, Nelda Bus. The woman who had sent Badlack a letter cutting off ties with him. Peter had done some searching, and he'd found a phone number. And I was thinking this is one of those calls that goes straight into a dead end. that says this number has been disconnected. I was not expecting anyone to pick up the phone.

So I forgot to record my end of the conversation. Hello. Yeah. But you'll get the gist of it. Yeah, it's me. And so that is the one and only Nelda Bus. She said, yep. She's still free of ALS symptoms.

She's in good health. And after a few minutes of small talk, I asked if I could patch Dr. Bedlock into the call. She said, okay. Hi, is this Nella Bus? Yes, it is. Hi, Mrs. Bus. It's Dr. Richard Bedlack from Duke.

How are you? Oh, okay. Okay. I wasn't sure what you really wanted. At first, the conversation was a little awkward, understandably. But then Bedlack brought up the letter, and Nelda said, the truth is I only wrote that letter because I didn't want to upset Dean Kraft and his wife. Article?

And they called me up and talked to me for an hour. They called them first. So then I wrote that letter. You know, I wanted them off my back. Yeah, no, I mean, I appreciate you explaining that to me because I felt terrible that you were mad at me all these years because I'm... No, no, no, no, it wasn't that. It was just that they just were so angry at me. And I just, it was just ridiculous.

And from that moment forward, it seemed like a giant weight had been lifted on. off of their shoulders, and they could finally have a real conversation. Nilda said that she still believes that there's something special about what Deancraft did. She isn't really sure what it is. Bedlach said he didn't know either. I've seen about 2,000 different people with this now, and I think of all the people that I've ever seen, you're still the most amazing. Right.

And I, you know, I really have no explanation, and I don't know if, you know, if a DNA test or a blood test would show anything different. Well, that's part of what I was wondering if you'd be open to is, you know, I've got a student working with me now, and we're working on a protocol where we, you know, we might be able to draw some blood on folks who'd be willing. Right. I think you might hold the key, you know, to figure out how to stop or reverse ALS. Well, if I can help in any way, man, I will because it's a horrible.

disease, and I'll do anything I can except to have an EMG. I won't do that. Well, I won't make you do that again, but I would love to maybe get some blood on you to look at your genes. That'll be fine. Yeah, our grandson has found at UNC studying to be a doctor at Chapelville. Awesome. Yeah.

Well, if you're coming up this way, you know, maybe I can... Richard Bedlock just published a study where he raked through this giant ALS database and isolated a few more people who could be another Neltebus or Mike McDuff or Kim Cherry, more ex-files that he can study. This story was reported by Peter Andre Smith and me, Trithy Pinnameney. Reply All is PJ Vote and Alex Goldman. We were produced by me, Via Benin, Chloe Prasinos, and Damiano Mercetti. Our executive producer is Tim Howard.

We are edited by Jorge Just. production assistance this week from Thane Faye and Sangita Ryasam, fact-checking by Michelle Harris, and we were mixed by Rick Kwan. There are a lot of people I'm going to thank today. An extra special thanks to Eric Valor, the world's first fully integrated cyborg, who spoke with us extensively about his life as an ALS patient. Thanks also to Angelina Fonuz, who's done incredible reporting on ALS.

We have links to our stories on our site. Thanks to Glenn Bus, Nelda's husband, who sent us a video of Nelda just doing household chores. It's amazing also on our website. Thanks also to Lola Pellegrino, Emily Kennedy, Mickey Kapper, Paul Wicks, Amy Reuter, Barstow, Derek Swinard, Wendy Juergens, Linda Paulhouse, and all the patients who spoke to us at Dr. Bedlach's office. Lastly, big thanks to all the scientists and researchers

who took the time to explain some very complex science to us. Hyundai Oz Zindler at Northwestern University, Merritt Sikovic at Mass General, Jonathan Ling of Johns Hopkins, Dr. Fernando Vieira of ALSTDI, Hiroshi Mitsumoto at Columbia University, and Susan Maltchen. Matt Lever is your first big laugh

back at the office after a long vacation. Our theme song is by The Mysterious Breakmaster Cylinder. Our ad music is by Build Buildings, and our logo is by Matt Libchansky. You can find more episodes of the show at iTunes.com slash Reply All, or wherever it is, kids get their podcast nowadays. And our website is Replyall.com. See you next week.

Today's April 10th, 2017, speaking with homecoming client break. I'm sorry. Is that a bird? Yeah, it's driving me nuts. I could remix him for you. Would you? Sure. Watch this.

Oh, my God, I love that. You are great in being John Malkovich, by the way. Let's just keep it about you, okay? I wasn't in that movie.