Radiolab - Rodney v. Death

Episode Date: September 2, 2022

In the fall of 2004, Jeanna Giese checked into the Children's Hospital of Wisconsin with a set of puzzling symptoms... and her condition was deteriorating fast. By the time Dr. Rodney Willoughby saw her, he only knew one thing for sure: if Jeanna's disturbing breakdown turned out to be rabies, she was doomed to die. What happened next seemed like a medical impossibility. In this episode, originally aired in 2013, Producer Tim Howard tells Jeanna's story and talks to authors Monica Murphy and Bill Wasik, and scientists Amy Gilbert and Sergio Recuenco, while trying to unravel the mystery of an unusual patient and the doctor who dared to take on certain death. Episode credits: Reported and produced by Tim Howard CITATIONS: Articles:"Undead: The Rabies Virus Remains a Medical Mystery," Wired article by Monica Murphy and Bill Wasik "Bats Incredible: The Mystery of Rabies Survivorship Deepens," Wired article by Monica Murphy and Bill Wasik "Study Detects Rabies Immune Response in Amazon Populations," the CDC's page on Amy Gilbert and Sergio Recuenco's work (inc. photos from Peru) "Selection Criteria for Milwaukee Protocol," when to try the Milwaukee Protocol Books:Rabid: A Cultural History of the World's Most Diabolical Virus, by Bill Wasik and Monica MurphyOur newsletter comes out every Wednesday. It includes short essays, recommendations, and details about other ways to interact with the show. Sign up (https://radiolab.org/newsletter)! Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today. Follow our show on Instagram, Twitter and Facebook @radiolab, and share your thoughts with us by emailing [e-mail].    

Hey, it's Latif. This is Radio Lab. Okay, go with me here for a second. Imagine all the diseases that afflict human beings. Imagine they all came together and had their own version of the Olympics. Okay, so events are like, who could infect a human the fastest

or who could infect a human from the longest distance or who could last in a human body for the longest. But I imagine the most heated and heinous competition of all would be the deadliest. Like what is the deadliest disease? Now until I heard the episode you are about to hear, which first broadcast in summer of 2013, I would have been so confident that I could name, you know, all the gold medal contenders, like Ebola, AIDS, anthrax, now COVID, but no. This episode is about a disease. I didn't even imagine was in the running, but in terms of mortality rate alone, it beats all of those diseases

and every other one you can think of. This episode is also about a doctor and a patient who tried to beat those odds in the fall of 2004, reported by one of the best, and if I'm being honest, most morbid producers we've ever had Tim Howard here is Rodney versus death Wait, you're listening Listening to radio lab radio from W and Y Hey, I'm Chad Abumron. I'm Robert Krollwich. This is Radio Lab, the podcast.

Today on the podcast, a story about death incarnate. And incarnate? Incarnate, I think. I think incarnate. Incarnate? That was Tim Howard, our producer. Oh, I'm sorry, am I in here yet? No, you're not supposed to be in yet.

You're not supposed to be in yet. You're coming, you're coming. A story about death incarnate. And the man who, well, yes. You're coming. A story about death incarnate. And the man who thought he could beat death. Yeah. Are you in? Yeah.

Let's meet you on Tim. Comes from our producer, Tim Howard. But you're already here, so just start. OK. So late last year, I took a trip out to Wisconsin. Test one, too. It was like that first weekend of November when we were out there for the live show.

And I met this woman Anne Gesee to talk about her daughter, Gina. Do you want to tell me just like, where are you sitting? What room? Crazy story. I am sitting in the kitchen of my home in Fondle Act, Wisconsin. All right. So anyway, back in 2004 and September of 2004, her daughter Gina was 15 sophomore. I remember it was home coming weeks so they had all activities each day and dress up days

and... Gina's a volleyball player. And one more learning she just starts to feel kind of crappy. She started getting a tingling in her left arm. We thought maybe she had a pinchener or something. Thought nothing of it. Then she goes to a volleyball game. Somebody, I guess, sets the ball to her to spike,

and she looks up, and she sees two of them, and she doesn't know which is the volleyball. Double vision? Yeah. About a week later, she started getting flu-like symptoms. She has headaches, she feels really sluggish. Double vision. Yeah, about a week later. She started getting flu-like symptoms. She has headaches, she feels really sluggish. Each day she just got more tired. One of those days she does go to school, take the PSATs. But then the next day she can even get out of bed. They go to the doctor and he says, well, it's not the flu. So we went home and then she just kept getting worse. Her arm started to involuntarily jerk.

Her speech started becoming real slurred. She, her body kind of stiffened up. Like, we'd get her up to go to the bathroom. And she just, it was just really scary, weird how her body was just stiffening up. Anne and her husband John took her to an neurologist for some tests. Just trying to get down to the bottom of this, and what is going on with her

because the meningitis came back negative, everything else they were testing for came back negative. Were they running out of things to test for? Yeah, they pretty much didn't know what else to do. And a day later on a Saturday, Gina's hospitalized. And then on Monday, when her pediatrician, who had seen her on Friday, came in and saw her. And saw how much worse she was in just two days.

He was like, frazzled like, what is going on here? And then something just made me tell him about the bat. Bat? Yeah. So this was a month earlier. Gina and her family, they were at mass. It was St. Patrick's Catholic Church, you know, old, big church. And a bat was flying around and it was just kind of

bothering everybody. It would just like land on the behind the altar of the stained glass windows up high. It just seemed like it wanted to get outside. And the stained glass windows up high. It just seemed like it wanted to get outside. And there were open windows, it's like go. You know, they're right there go. But it just, and then it would swoop down and it started getting lower to the people's heads and stuff. And there was an usher. He hit it to the floor. I don't know what he used, but Gina kept looking

back at it. And being the animal over, over she is she thought she had to help it and so she jumps up runs over to the back grabs it by the wings and takes it outside and as she does the bat bites her on the index finger of her left hand So it breaks the skin. Yeah, they washed it and then thought nothing of it But when Anne told the pediatrician about this, he, his face turned white, he walked out of that room, he says, I'll be right back, but he never told us what it was.

They immediately rushed her to Milwaukee to this other hospital. Children's Hospital Wisconsin. To be treated by this guy. I'm Rodney Willoughby. I'm an infectious disease consultant. And at the point when Rodney met Gina, she was, uh, what we call stuporous.

You mean like she couldn't talk? She could, but barely. She was talking only single sentences, could only follow one step command. She was in a wheelchair. Because she couldn't physically stand. Her left arm would twitch and spasm. She would apologize, say sorry,

and then try and get back into position for the exam. And she was literally getting worse by the minute. Within two or three hours, she had to have a breathing to put in. She was essentially becoming comatose. The way she looked, I wasn't sure she was going to survive. And of course, if she had rabies, I pretty much knew she wasn't going to survive. Rabies. Yeah.

But if you are diagnosed with rabies, then what do you do? Um, you die, basically. You die? Yeah. Well, like, what, all of the time, some of the time? All of the time. It's a really deadly disease. In terms of the percentage of people who come down with the symptoms of rabies who die,

it is the deadliest disease in the world. The deadliest? Yeah. Here's the bottom line. If we say there are 55,000 cases of rabies a year, then you also have 55,000 rabies deaths a year. Meaning it's 100% fatal. Yeah.

And by the way, this is Monica. Monica Murphy. I'm a public health veterinarian. And this is Bill. Bill Wasick. I'm a senior editor at Wired magazine. And they wrote a book called Rabbit, where they trace the history of rabies all the way back to the beginning.

There are references to rabies going back as far as we have human writing and the Samarian literature and the Acadian literature. For thousands of years, we have been throwing everything and anything we can think of at this disease and failing. I mean, one like real. I mean from the start. You see these very, very weird cures. Desperate. For example, in Roman and Greek times, if you're a genus and you got bit by a bat, you might have tried eating a cox brain, goose

grease mixed with honey, the flesh of a mad dog salted. A skin or old slough of a serpent. A clawed from a swallow's nest applied with vinegar. And then we have the dung of red poultry provided as if a red color is very useful. If those didn't work, you could pull out the feathers from around the live rooster's anus and apply the anus to the bite wound.

On the theory that said anus would suck the poison up out of the wound. Wait a second. How would a rooster's anus cure ever catch on in the first place? I mean, it wouldn't work. Well, yeah, but if you think about it, not every rabbit, dog, or bat,

bite is actually gonna transfer the virus. In the sense that, you know, the saliva just will fail to get the virus where it needs to be. So ever so often the healer is going to come along with his rosiness and put it on your wound. And sure enough, it works. Case closed, we have our rabies cure. So you're saying that Pliny's list is a lot of lucky accidents by sorcerers. Yeah, I think that lucky accidents

were kind of probably what kept some of these things kicking around long enough to become accepted. Well, what do we know about rabies for real? And what do we actually know about the disease? I mean, not much. We know it's a very unusual virus. Yeah. The way a typical virus travels

is it has a port of entry. It replicates locally. It makes it into the bloodstream. It circulates widely. It finds its target tissues and then it replicates that. So you get a wound, it gets infected, that goes into the blood. What rabies? It enters the body at the bite wound site.

Say in Gina's case, the tip of her finger. It binds to a nerve right there. To a particular receptor. And then crawls its way up the nervous system. One to two centimeters per day. I think that's right, to attack the brain. It literally grabs onto the nerve and climbs up. It's like hand over hand.

It might take a few days to go the length of a finger, maybe three weeks to go the length of an entire arm. It's during that slow climb that we could administer vaccine and help the body mount an immune response. If you give a person the vaccine before they see symptoms, while the virus is still climbing its way up to the brain, this should be okay. But once the infection has taken root in the brain, then it's too late for vaccination.

The moment you have a twitchy finger, the moment you have the slightest little flu-like symptom which will later progress into rabies, that's the moment that you know you're going to die of that disease. What does the virus do when it gets to the brain? Well, it's very much not known specifically what happens in the brain. It might start shutting parts of your brain down in about 30% of the cases. The muscles might start to kind of get paralyzed.

It's called paralytic rabies. Eventually, their entire body will get paralyzed and they might just slump into a coma. Or more often, it's that cliche of the rabies death is what actually happens where people have these spasms of rage. There are videos online where you can see people in this state. Yeah, YouTube.

I find them impossible to watch. People, you know, just screaming and riving in convulsions. From the virus's perspective, it's trying to drive its host to be more aggressive so that it bites somebody else and spreads more virus. The other thing that is, I find really perverse, is that they will get this fear of water, a really powerful fear of water. The human victim of rabies tries to drink, wants to drink. But then they'll bring the cup to their hands and they just shaken over float.

The muscles in their throat sees up. The gag reflex. And they can't. They can't drink water. Yeah. You can imagine, though, again, from the virus's perspective, why that would be adept in THS. You are trying to transmit virus through biting. So an animal who can't swallow his virus filled saliva.

They're gonna be like a loaded gun. Right. And eventually, after a few days in these late stages, person might lapse into a coma, have a heart attack. There's really any number of ways they could die. That sounds awful. And it was, it was, so when the official results came back and Rodney took Gina's mom and dad

and in John Geese into a room and told them, we're sorry but she has rabies. And it's definitely too late for the vaccine. John, I both started crying. You know, is there anything that can be done? And one of the doctors said there's nothing we can do. We can either put her in a dark room and let her die. You can take her home and let her die.

And we're just... this can't be happening. They said, uh, what else do you got? And so, what we can do is stand in intensive care. Well, does that work? Well, no. What else do you have? And then, Dr. Willowby said,

Okay, well... Well, I do have an idea. I'd like to try this. I don't even know what he called it. Okay, so the night before, while they were waiting for the test results, hoping it wasn't rabies, Rodney started calling around. You know, I actually called the CDC asking if there was anything that was unpublished but promising.

They say no. And then I essentially headed to the library. What I did is I pulled, I don't know, about 20 years with the case reports. Started reading. But he does notice one thing. He sees mention in this one kind of obscure paper. I read one article that said, well, this might be just sort of neurotransmitters. That maybe what's happening in the brain during rabies is something called excitotoxicity.

Excitotoxicity. Excitotoxicity. Excitotoxicity. Yeah. It sounds exciting and maybe toxic. What is it? Well, excitotoxicity. And this is tricky stuff.

And it's controversial. Yeah. This is the kind of thing that actually makes rabies or researchers at conferences get into fights with each other. Here's a basic idea. You might think that a brain infection just physically destroys the brain. Yeah. But under this theory, the brain isn't physically destroyed.

It's just that the neurons themselves are getting overstimulated, overexcited, and then that part of the brain is disrupted, and it all just kind of shuts down. Just making it impossible for the brain to function properly and so the sort of life-sustaining functions of the brain like breathing and you know circulating blood they stop working because the neurons that control them are just overwhelmed. Right.

In other words, if the brain doesn't the brain, it disrupts the brain. The brain itself is spared. So it's like a software problem, not a hardware problem. Yeah. And what Rodney read is that people had died of rabies, and in the autopsy their brains looked totally fine. And entirely normal. Moreover, the virus was gone.

You couldn't even detect the rabies virus in their brain. Brain no longer had rabies in it. Really? Yeah, it was like there was no weapon at the scene of the crime. So that was my clue. What that suggested to Rodney is that the immune system does eventually turn on. Right. And it kicks in and it starts fighting the disease, but it just gets there too late.

So the immune system had all the tools, but essentially this virus beats your immune system to the punch. It would kill you faster than your immune response could eradicate it. Because the virus moves more quickly than the immune system. It's way faster. And to me, it was like, well, you know, the solution there is obvious. If you could buy Gina's immune system some time, enough time, you could clear the brain and the brain would not be damaged.

She might survive. So what he suggests to Anne is that he put Gina into a coma. Put her into a coma. Induce a coma. And if an anesthesiologist is controlling routine brainstem activities, like breathing, circulation, then no matter what the virus is actually doing inside her brain, he might be able to keep her alive. Long enough for the immune system to make a response, which would take normally about seven to ten days. And this is still kind of a guess.

This is entirely, I'm improvised, yeah. And lots of things can go wrong. And when they go wrong, they typically go wrong badly. He knows there's a huge risk that she's going to end up being brain dead. Or maybe locked in. And that's worse than death, I think, in everybody's eyes. Were you nervous about the possibility that he said she could end up being a vessel, just like she'd be survived. I don't think I thought that for her head.

I thought more of, let's just keep her alive. Get the disease out of her. So they put Gina into a coma. Rodney figures will give her a week and then we'll check to see if she has an immune response. And once they had her hooked up with the coma, she had the pull with all the IV stuff on and the different medications and stuff. Anne stays with Gina in the hospital room and spends her time. Praying and calling people and asking them to pray. She repeated this one prayer, Psalm 91, over and over again.

It talks about, you know, basically the devil not getting ahold of you. He is my refuge and my fortress, my God, in whom I trust. Surely he will save you from the foulard snare and from the deadly pestilence. And so we were just waiting. He will cover you with his feathers. Waiting. And under his wings, you will find refuge. It was probably the most uncomfortable feeling I've ever had in medicine.

Seven days in, they sample her spinal fluid, send it in for testing, and then they get the results Which say her antibody response is in and going up Air mean system is working. Yeah, it was working in in fact We now had rabies antibody and we had a fair amount of it and it was in the spinal fluid is meaning it's around the brain And so essentially plan worked so we said said, well, okay, let's start waking her up. But as they're waking her up, she has a fever and they couldn't figure out what was causing the fever. So they put her back on her for another

week. And then finally, they start to wake her up again. And she gradually, you know, woke up. The brain actually looked great, and she had nice pupils, but physically, she did not move a muscle. It pinched her, they'd poke her, she had no movement anywhere other than her pupils. So she was responding to light, and said... Light, that's it. And this was the one thing that Rodney was most afraid of. That Gina was... a lock-in, especially locked inside this box of a body.

And it was the worst day of my life. Because it looked like she'd probably go survive and we'd actually done worse than death and as Rodney drove back and forth from work He kept repeating this one prayer. Jesus Christ Son of God, have mercy on me a poor sinner Jesus Christ Son of God, have mercy on me a poor sinner Jesus Christ Son of God, have mercy on me a poor sinner and then But two days later, Rodney's in the hospital, he's looking over a genus charts. You know, he just checking, you know, Sam, and another doctor was finishing up her shift

and she comes over to Rodney. He said, oh, did you know that she had reflexes today and I said, no. Rodney grabs a reflex hammer and then sure enough, she had knee reflexes. Next day, her eyes started fluttering a little bit. Within a week, she was back. For a couple weeks after I woke up, I still have no memory. This is Gene and Gizzy,

the first person to survive rabies without the vaccine. My first memory was actually Thanksgiving day. A couple weeks after she woke up from the coma. Back in 2004, I just remember being with my family and playing board games with my brothers and just them being there and then going down to the cafeteria for dinner and having fish. I remember we had to have a cafeteria for dinner, having fish. I remember we had to fish.

How long was she in the hospital for? About two months. I had to learn how to stand and then to walk, turn around to move my toes. I was really after A.V.s, you know, a newborn baby who couldn't do anything, and then I had to relearn that all. Do you remember that feeling?

Yeah, I mentally, I was there, you know, mentally. I knew how to do stuff, but my body wouldn't cooperate with what I wanted to do when it was frustrating. And it definitely took a toll on me psychologically. You know, I'm still recovering. I'm not completely back. Stuff like balance and I can't run normally. She can't play volleyball anymore, but she finished high school when to college.

I graduated with a degree in just general biology. And now Gina is really into bats. She's a bat lover. If I ever go down to the zoo, you know, they always, they let me go behind and in with the bats and I can pet them and serve. Yeah, I'll feed them all pet them. I've been going to bat festivals here in Wisconsin.

So I have no fear of bats. It would be the last person I would expect to go to a bat festival. Oh, this girl is a saint, that's all. She is the poster child for what became known as the Milwaukee Protocol. This is the name of Rodney's thing that he did with her. Yeah. I mean, this has been tried again.

This has been tried all around the world by different people and different versions of it, but it's been tried around 30 times. With what result? So everything about, say, forward, there's debate about every single little bit of it, but he says five survivors. Five survivors? Yeah. Out of how many people?

Out of about 30 people, which on the one hand is that seems like a terrible percentage for a treatment for a disease 5 out of 30, but on the other hand, this is rabies, and for all of human history, it was 0 out of 30. Was there anything about 5 that separates them from the others? Well, this brings us to the really murky territory. You know, rabies has been one of those just really interesting pathogens to me. The more you think you know about it, the more you don't know about it. This is Amy.

Dr. Amy Gilbert, I'm a research biologist at the National Wildlife Research Center here in Fort Collins. So this gets to your question, Robert. A couple years ago, Amy actually went to study rabies in Peru with this guy. I am Sergio Rocunco, and the physician by profession. Just so happened, Sergio is also from Peru. I was born in Lima, and he now works as an epidemiologist at the CDC.

So going to... But in 2010, they traveled deep into the Amazon jungle. First from Lima, we have to travel to Tarapoto and from Tarapoto. We were talking remote. The hours from Jirima was to San Lorenzo and the people. Boy, they're looking for it. Well, they were studying bat-borne diseases, and in that part of the world, people have a lot of contact with vampire bats.

So we choose two towns. Trinacoccia and Santa Marta. So they arrive and... Have a pretty lengthy discussion with the community leaders. They explain what they're up to and go door to door. Household to household. We visit each house and talk with one member of the family.

And they'd ask, have you been bit by vampire bat? Have you had any illnesses? Then they take a blood sample. And what they found is basically rabies front page news. 11% of the blood samples that were tested. Seven people out of 63 had what we call evidence of virus neutralizing antibodies. They had rabies antibodies in their blood. Okay. Well, you know how I mentioned that sometimes the body will mount our response to rabies,

but it's just too late. Yeah. So you might see those antibodies, but only when somebody's dying, right? And these people in Peru, they had the antibodies. But we didn't have any evidence, there was any neurological disease, any of the cases, didn't seem to have rabies but were really very surprised I'm sorry why well think about it the only way they could have gotten those antibodies in their blood was by contact in some point with the virus they'd come into contact with rabies and yet they were fine it was almost as if they were immune to rabies. Well, I- But Amy won't use that word

immune because- The data are sort of inconclusive as to whether there was any entry into the brain. Like they didn't know if the virus made it all the way into these people's brains and so did they come down with full blown rabies or not, they don't know. But it's possible that these people are special. Some people even argue that there are special individuals who are able to survive rabies. And not just in Peru. Monica told me about another case. The Texas wild child. The rabies case, the laboratory confirmed, um, in a girl in Texas.

17-year-old girl. A runaway. She shows up in 2009 at a girl in Texas. 17-year-old girl. A runaway. She shows up in 2009 at a hospital in Houston. She has a headache, her neck hurts, and she's really agitated. They confirmed that it was rabies, but she didn't receive the Milwaukee Protocol or any critical care measures. As far as we know, they just figured she would die. But then three weeks later, this girl went on, you know, to walk out of the hospital.

She just got better. No drugs, no coma, nothing. On her own. Wow. And this actually brings us back to Gina, because at the point when she arrived at the hospital to see Rodney, she asked she was diagnosed as having small amounts of antibody in her. She already had antibody in her blood, like those people in Peru. She did not have recoverable virus, which is unusual.

It does seem that she is immunologically special. In fact, if you look at all of the people who have gotten the Milwaukee Protocol and survived, they all have that profile. Like the girl in Texas, like precious Reynolds. That's another girl who got the Milwaukee Protocol and survived. They have had similar lab work come back. Those patients have extraordinary lab work

and extraordinary outcomes. And so some researchers in Canada and Thailand have argued that Rodney's protocol actually had very little if nothing to do with gene and g easy surviving. They would say she survived. Despite Dr. Willoughby's treatment rather than because of Dr. Willoughby's treatment. Oh, so they're accusing him of basically pulling a rooster's anus kind of number. I don't think they would really put it that way. Exactly. They say that the Milwaukee Protocol should be discontinued

and that we shouldn't be wasting time and money on it. You know, they, in Bangkok, are acutely aware of the fact that to do one Milwaukee protocol case you could Vaccinate I think it was all the kids in Bangkok preventatively against me. Ten to thousands of slum kids in Bangkok could be preventative Luhaxi and against rabies. So these critics would say you know give people of vaccines But don't induce the coma and don't use these untested drugs that rodney Administers and if somebody comes in with an advanced case

of rabies, well unless you have evidence that they're one of these immunologically special people, you just need to accept the fact that they're going to die. I think, no, calling not to do anything, I will definitely disagree, we'll have to do something. According to Sergio, the idea that Rodney somehow just got incredibly lucky when he was treating Gina Gizzy does very unlikely. Gina was basically at death's door. There are some things mind-n-know-be fully understanding Gina G's case, but it was obvious that

if she was not giving this alternative, she might not have survived. And you could argue that if Gina is part of this immunologically special group of people who can just survive rabies without the vaccine, then how come nobody did before Rodney came along? You know, this is really not science. This is right now storytelling. There's something right, but we still don't know, and we won't know until we figure out which parts work and don't work.

You know, for now, Rodney's forced to evaluate and try to improve the protocol just one patient at a time without the funding or research that he wants, so, you know, no clinical trials, no animal models. So we're left learning the hard way, which is an awful way to learn. But he says, you can't just give up hope. You know, in the early days of cancer treatment, they weren't having any success, but they didn't just stop. And I've seen treatments for cancer evolve over my professional career from being 0% survival

to being 85% survival. And now he puts the success rate of his protocol at about 20%. That's a lot better than 0. And it could go up. All right. Might not go up, it's true. So if you're a doctor now though,

and a kid comes into the hospital, hasn't had the vaccine, has a full blown case of rabies. What do you do? Do you just dirt your hands, say sorry, it's not gonna make it, do you check and see if maybe it's immunologically special? Put them in a coma. You put them in a coma, that you don't know

is gonna work? Whatever the case, you've actually gotta be glad that Rodney gave Gina a shot, because whether or not you think that he saved her life or she saved her own life, the fact is that at least now we know that Rabies isn't quite the killer that we once thought it was. He took it off of its throne of death, even if, you know, just a little bit maybe. And when we say, you know, rabies is coming off, it's 100% thrown,

it's, you know, down to 99.99, you know, like it's... And it might be that it was never quite on that throne exactly ever. Right. All right, well, we've certain clear things up. Thank you, Tim. We're sure things. Thanks also to Ashwin Shaw for research help, and do you guys for listening? Oh, oh, oh, and before I forget, we have this newsletter that comes out every Wednesday. We've worked really hard on it.

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