The ALS Untangled website
The 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
Reporter Peter Andrey Smith’s website
ALEX GOLDMAN: From Gimlet, this is Reply All. I’m Alex Goldman.
PJ VOGT: And I’m PJ Vogt.
ALEX: This week, we have a story from —
PJ: You’re not going to say it like “Happy New Year?” You’re just gonna get right into the show?
ALEX: If I have to.
PJ: Happy, it is nice to see you in January.
ALEX: It’s been a minute. Happy new year. Welcome to 2017.
PJ: Welcome to 2017. Uh, what’s your resolution?
ALEX: 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.
SRUTHI PINNAMANENI: That’s the point —
PJ: That’s exactly —
SRUTHI: — of a new year’s resolution.
SRUTHI: Sorry, I just —
ALEX: Uh, Sruthi Pinnamaneni’s in the studio.
ALEX: Castigating me. Sruthi, you’re here because you have a story.
SRUTHI: Oh boy.
PJ: I know a little bit about your story.
PJ: Can I say what I know?
PJ: So what I know about your story is that it is about ALS. Uh, ALS is a fatal disease, and like a very bad one. Basically if you are diagnosed with it, um, your doctor will probably tell you you have a fixed amount of time, you’re gonna die, like, people can do things to make you more comfortable but that’s kind of it.
SRUTHI: The classic thing that you hear is the doctor gives you the diagnosis and says, um, you know, “Go home and get your affairs in order.”
PJ: Right. But, your story is about —
SRUTHI: A very different kind of doctor.
PJ: (laughing) A very different kind of doctor. Who’s trying to find a cure in a way that is extremely unusual.
SRUTHI: 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 will hear from both of us. Here’s Peter:
PETER SMITH: So in September, Sruthi and I took a trip to Duke to meet Dr. Bedlack.
[Sound of walking in]
SRUTHI: There he is!
RICHARD BEDLACK: Hello.
BEDLACK: Peter, right?
BEDLACK: Nice to see you.
SRUTHI: Hi, Sruthi.
BEDLACK: Good to see you, Sruthi.
PETER: Bedlack 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, and —
SRUTHI: He actually looks like a stylish Willy Wonka who just rolled into the room, and he’s holding this old-fashioned looking leather satchel.
SRUTHI: It’s not even a medical bag.
BEDLACK: It is! This is an official medical bag, my parents got this for me when I graduated from medical school.
PETER: So where are we going?
BEDLACK: Into my office!
PETER: So we head upstairs —
BEDLACK: The walls are littered with the things that remind me of all the fun times I’ve had.
PETER: Bedlack walked into his office, and then he sat down, right underneath an X-Files poster. It has a UFO and says, “I want to believe.”
SRUTHI: The X-files comes up a lot when Bedlack 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, Bedlack, he too, has a Samantha.
BEDLACK: 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 —
SRUTHI: Bedlack he 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 the 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.
PETER: Bedlack told her the usual: there’s no real treatment, but there was this experimental drug trial that she could enroll in.
BEDLACK: And she said, you know, I’m going to pass on the research study, because I, I read about something on the Good Morning America website, called oral sodium chlorite, and that’s what I’ve decided I’m going to take.
PETER: And how did you feel when you heard that?
BEDLACK: I was stunned. I was kinda 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 kinda 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 onto the internet and find things and just try them? Because this was the first patient that really told me that they were doing this.
PETER: So, that weekend he did a bunch of research. He even called the manufacturer that makes sodium chlorite.
BEDLACK: 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.
PETER: So chlorine dioxide is most commonly used as a bleach.
BEDLACK: And so the first couple of people they tried oral sodium chloride on, you know, collapsed, and had to be rushed to the hospital.
PETER: So Bedlack tells this patient, I would not recommend that you try this sodium chlorite stuff. And she doesn’t. But at this point, he’s thinking, OK, so, patients know that 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.
PETER: Okay, so we got the ALS Untangled website up. What does it look like?
BEDLACK: The main page of my website is my Twitter feed for ALS Untangled. So, every day, I go onto the ALS Untangled website, and I look to see, did anybody send me any new tweets today that I need to respond to.
PETER: And Bedlack tells ALS patients: if you hear of any new treatment, send it my way. And they do, constantly.
BEDLACK: And 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: “Doctor B, what about fecal transplants for ALS?”
SRUTHI: Bedlack 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 will look into these treatments, no matter how outlandish they are.
BEDLACK: There was a stem cell clinic in Mexico that was injecting stem cells
into the front of patients’ brain. They were drilling a hole in their skull and putting a needle and injecting, uh, stem cells into the front of their brains.
SRUTHI: That’s crazy.
BEDLACK: 1 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 to be safe.
SRUTHI: Bedlack 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 there says he can cure ALS by leaching metals out of the body.
BEDLACK: He showed me the inside of his mouth, and his wife’s mouth, and they’ve all had all their fillings taken out.
SRUTHI: And so it goes like this for years: people send their miracle cures to his site, ALS Untangled. Bedlack 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, Bedlack learns about a case that he just cannot explain. It comes from this ALS patient named Mike McDuff who is making a wild claim about a supplement he’s taking.
[WALKING INTO MIKE’S]
SRUTHI: April and Mike McDuff.
PETER: I’m gonna ring the doorbell.
PETER: So, last summer, Sruthi and I went to visit Mike at his home:
PETER: Hello, Mike!
MIKE MCDUFF: Hello, hello!
PETER: Gimme like a fist pump?
MIKE: Yeah, sure.
PETER: He was sitting in his recliner, leaned back so 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.
MIKE: It hit my arms, and then it hit my throat. I couldn’t swallow, then I couldn’t talk. And then June of 2013, um, I had a feeding tube put into me, and I looked awful. I looked gray, my eyes were black, all sunken in, you know, everyday, I could feel myself going downhill.
PETER: 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 that she’s selling this supplement.
SRUTHI: Right, the supplement that’s made from soybeans and it’s called Lunasin. .
MIKE: I said you know what, I got nothing else to lose, my doctor really couldn’t give me any hope. So what my wife did, she took the Lunasin, put it in the blender, blend it right up, and she put it right through my feeding tube.
SRUTHI: At first, Mike said he felt different, but he couldn’t really put his finger on it. And then came this big day.
MIKE: I’ll 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 to my wife, you know, I had her come over, I whispered in her ear and I say, “Honey,” I 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 me a little bit with a spoon, and she put —
PETER: Into your mouth?
MIKE: Right into my mouth, put it right in my mouth, and I chewed it. It was delicious! I couldn’t believe how good. I could taste the potato, I could taste the butter in the potato, it was so good. Oh, I couldn’t believe it. I was so excited.
Sruthi: And what did your wife say when you were able to swallow?
MIKE: She started crying, too! We were both so happy that I was able, you know, to swallow.
PETER: And for the last three years, it’s stayed that like that. He can feed himself, obviously he can talk, and sometimes he can even walk with assistance.
SRUTHI: 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 Bedlack heard Mike’s story, he decided that it’s not enough to just write up a paper. He decided something he’s never done before: a trial.
MIKE: He says you know Mike, us doctors, we sometimes have to think outside the box. And I was floored. I go, thank you Dr. Bedlack. Good for you!
SRUTHI: So last spring, Bedlack enrolled 50 real ALS patients to come to his clinic to take this supplement Lunasin, 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 Bedlack told us that it’s way too early to reach any real conclusion. But so far, Lunasin hasn’t led to the dramatic improvements we saw in Mike. So if it turns out that Lunasin isn’t the miracle cure, then what could be making Mike get better? Is it the world’s greatest placebo effect? Is it his toothpaste? Is it the air in Westport, Massachusetts? Or is it Mike’s eight cats? Or, is there a possibility that it’s Mike himself?
ALEX: Coming up after the break, the aliens among us.
ALEX: Welcome back to the show. Here’s Sruthi.
SRUTHI: So Peter and I are sitting there in Bedlack’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.
VIDEO NARRATOR: In 1985, Nelda Buss was diagnosed with ALS, amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease.
SRUTHI: You see a woman in her 40s with a bob cut. She’s in a wheelchair, and is being lifted out by her husband.
VIDEO NARRATOR: … where she went about to die.
BEDLACK: (speaking over video) You can see the atrophy in her arm and her hand.
NELDA BUSS: 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.
SRUTHI: 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.
NELDA: I said that the doctors say that there’s no hope. And he said, “Well,” he said, “That’s not always true.”
VIDEO NARRATOR: Kraft did his laying-on of hands for three months.
SRUTHI: 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.
NELDA: How’s that?
NELDA’S SON: Everything has changed. She’s back, and she’s doing more than she ever did before.
BEDLACK: (speaking over video) Pretty amazing. I mean, it gives me the goosebumps.
NELDA’S SON: It’s great to have a mother, it really is.
BEDLACK: (speaking over video) I mean 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 happened to that lady. I just have to figure why it happened (laughs) if I’m gonna make it happen again.
SRUTHI: Back in 2010, when Dr. Bedlack first saw this video, he managed to track down Nelda Buss. He got her medical records. And they’re from a great hospital, the University of Virginia, and she had a really solid neurologist.
BEDLACK: I’ll never forget looking through those records, cause I turned to my wife and I was like, my jaw was open, and I said, “You know how people already think I’m kind of crazy in this field? Wait till I get up at the next big meeting and say I think I might have found the cure for ALS — it’s energy healing!”
BEDLACK: And she’s like, “What are you talking about?” and I said, “This lady had ALS, I’m sure of it!” And she’s like almost completely recovered. It’s unbelievable.
SRUTHI: At this point, Bedlack did something that I would call radical. He reached out to Dean Kraft, the energy healer.
BEDLACK: 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.”
SRUTHI: Um, I have to ask. (laughs) So, how do you test something like energy healing?
BEDLACK: 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 Nelda Buss, the exact same frequency and duration. I just need you to treat like ten of my patients.” And his response was just priceless, I’ll never forget it. It was an email that 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.
SRUTHI: Bedlack wrote up a study anyway. He wrote, “In our opinion, Dean Kraft’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 Untangled, they were uncomfortable that he’d even considered studying an energy healer. I mean, this is not what scientists do.
And when we asked Bedlack 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.
BEDLACK: I guess I kind of like to make waves. I mean, it’s the hair, the clothes, that kind of stuff. It’s – it’s kind of fun to rattle the cage a little bit. If things that we were doing were working real well, like the field was just exploding with, you know, 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?
PETER: So you’re saying because ALS is incurable and terminal and terrible, that’s why it really necessitates you just —
BEDLACK: It leaves room for people like me, because we don’t know what the right approach in this field is.
SRUTHI: 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 Bedlack, 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.
BEDLACK: 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 will work for everybody with ALS.
SRUTHI: But Bedlack has a problem. Even if his gene theory would explain Nelda Buss, she has read his paper, the one in ALS Untangled, and saw the part about how there’s no plausible scientific rationale for what she thought was the cure.
BEDLACK: Well, Nelda Buss 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, you know, incredible miracle, that this is the, you know, a treatment that could work for people with ALS.
SRUTHI: 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 Bedlack could not stop thinking about Nelda’s 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:
BEDLACK: One of the most common things that I hear is, “I had no idea that that could happen.” And I, you know, 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.
SRUTHI: 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. Bedlack, way out in fringes, he’s started to find some of these people. None of them as dramatic as Nelda Buss… but still … each of these stories is incredible. He found Mike McDuff, and then:
BEDLACK: This is a person who has his own website, his name is Kim Cherry. He is a ALS reversal.
SRUTHI: Kim Cherry recovered his ability to breathe and swallow. There’s another patient named Derek Swinnard, he has some balance issues, but he is actually able to go out and play golf again.
To date, Bedlack 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 them his X-Files. And he’s found that as excited he is about finding these people, a lot of them are extremely wary — of him.
BEDLACK: 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 from. So I’m trying to deal with, you know —
BEDLACK: — casting myself out of that stereotype of the typical, uh, you know, maybe mainstream, doom and gloom neurologist.
PETER: You seem like the complete opposite of doom and gloom.
BEDLACK: Well I appreciate that, and if I can convince these folks of that, maybe more of them will send me their records and I can bump this number up higher than 24.
SRUTHI: 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 Bedlack’s bet.
And slowly, one by one, he’s been convincing those people to talk him.
KIM CHERRY: He actually called me one day, and say, “Hey, I read your website, I read your story. Uh, this sounds real unbelieveable, can you tell me about it?”
SRUTHI: That is Kim Cherry. Kim said this was a first. A doctor — a neurologist — who wanted to listen to him.
KIM: I mean, it was refreshing. It was absolutely refreshing.
SRUTHI: And then: the best thing that’s happened to Bedlack in a long, long time. It actually happened because of Peter. He’d been wondering about the most incredible case of them all, Nelda Buss, the woman who had sent Bedlack a letter cutting off ties with him.
Peter had done some searching … and he’d found a phone number.
PETER: And I was thinking this is one of those calls that goes straight into a dead end —
PETER: — and says, “This number has been disconnected.” I was not expecting anyone to pick up the phone.
PETER: So I forgot to record my end of the conversation.
NELDA: Hello? (pause) Yeah?
PETER: But you’ll get the gist of it.
NELDA: (laughs) Yeah, it’s me.
PETER: And so that — is the one and only Nelda Buss. She said, yup, she is still free of ALS symptoms, she is in good health. And after a few minutes of small talk, I asked if I could patch Dr. Bedlack into the call.
She said “OK.”
BEDLACK: Hi, is this Nelda Buss?
NELDA: Yes it is.
NELDA: Hi Mrs. Buss, it’s Dr. Richard Bedlack from Duke, how are you?
NELDA: Oh, OK, OK. I wasn’t sure, uh, what you really wanted.
PETER: 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.”
NELDA: Because, after they read your article —
NELDA: — and they called me up and talked to me for an hour. They said I should have called them first before I ever talked to you. So then I wrote that letter because, you know, I wanted them off my back, so … (laughs)
BEDLACK: Mhmm. Yeah, no, I mean, I appreciate you explaining that to me, because I felt – I felt terrible that you were mad at me all these years, cause I’m —
NELDA: No, no, no, no, it wasn’t that, it was just that they just were so angry with me. And I just … it was just ridiculous.
PETER: And from that moment forward it seemed like a giant weight had been lifted off of their shoulders, and they could finally have a real conversation. Nelda said that she still believes that there’s something special about what Dean Kraft did. She isn’t really sure what it is. Bedlack said he didn’t know either.
BEDLACK: 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.
NELDA: Right (laughs) 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? Um …
BEDLACK: Well that’s – that’s part of what I was wondering if you’d be open to, is, um, you know I‘ve got a student working with me now, and we’re working on a protocol where, you know, we might be able to draw some blood on folks who’d be willing —
BEDLACK: Cause I think, I think you might hold the key, you know, to figuring out how to stop or reverse ALS.
NB: 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 have that.
BEDLACK: 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.
NELDA: That’ll be fine. Yeah, our grandson is down at UNC, studying to be a doctor, at Chapel Hill.
BEDLACK: Well if you’re coming up this way, you know, maybe I can — I’ll certainly…
SRUTHI: Richard Bedlack just published a study where he raked through this giant ALS database, and isolated a few more people who could be another Nelda Buss or Mike McDuff or Kim Cherry. More X-files that he can study.
This story was reported by Peter Andrey Smith and me, Sruthi Pinnamaneni.
Reply All is PJ Vogt and Alex Goldman. We were produced by me, Phia Bennin, Chloe Prasinos, and Damiano Marchetti. Our executive producer is Tim Howard.
We are edited by Jorge Just. Production assistance this from Thane Fay and Sangita Rayasam. Fact checking by Michelle Harris. We were mixed by Rick Kwan.
There are a lot of people I’m gonna thank today.
An extra special thanks to Eric Valor, the world’s first fully integrated cyborg who spoke with us extensively about life as an ALS patient.
Thanks also to Angelina Fanous, who’s done incredible reporting on ALS. We have links to her stories on our site.
Thanks to Glenn Buss, 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 Capper, Paul Wicks, Amy Reuter Barstow, Derek Swinnard, Wendy Juergens, Linda Paulhus, and all the patients who spoke to us at Dr. Bedlack’s office.
Lastly, big thanks to all the scientists and researchers who took the time to explain some very complex science to us: Hande Ozdinler at Northwestern University, Merit Cudkowicz at Mass General, Jonathan Ling of Johns Hopkins, Dr. Fernando Vieira of ALS TDI, Hiroshi Mitsumoto at Columbia University, and Susan Molchan.
Matt Lieber 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 Lubchansky.
You can find more episodes of the show at iTunes.com/ReplyAll or wherever it is kids get their podcasts nowdays. And our website is replyall.soy.
See you next week.