Radiolab - Rodney Versus Death

Episode Date: August 13, 2013

What do you do in the face of a monstrous disease with a 100% fatality rate? In this short, a Milwaukee doctor tries to knock death incarnate off its throne.

Wait, you're listening. Okay. All right. All right. You're listening to Radio Lab. Radio Lab. Short! From.

W. N. Y. C. See? Yes. And NPR. Hey, I'm Chad I boomrod. I'm Robert Quilwitch. This is Radio Lab.

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

A story about death incarnate. And the man who, well, who thought he could beat death. Yeah. Are you in? Yeah. Nice to meet you. I'm Tim. Comes from our producer Tim Howard, but you're already here, so just start. Okay.

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, for the, the live show. And I met this woman, Anne Gese, to talk about her daughter, Gina. Do you want telling me just like, where you're sitting, what room? Crazy story. I am sitting in the kitchen of my home in Fondelac, Wisconsin. All right. So anyway, back in 2004 in September of 2004, her daughter, Gina, was 15, sophomore. I remember it was homecoming week, so they had all activities each day and dress up days.

Gina's a volleyball player, and one morning she just starts to feel kind of crappy. She started getting a tingling in her left arm. We thought maybe she had a pinch nerve 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. 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't 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 arms started to involuntarily jerk. Her speech started becoming real slurred. 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 a neurologist for some tests. Just trying to get down to the bottom of this, you know,

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. 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 behind the altar the stained glass windows up high it just seemed like it wanted to get outside and there were open windows it's like go

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 you hit it to the floor I don't know what he used but Gina kept looking back at it

and being the animal lover she is She thought she had to help it. And so she jumps up, runs over to the bat, 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 a pediatrician about this...

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 what we call stuporous. You mean like she couldn't talk? She could, but barely. She was talking only single sentences, could only follow a one-step command. She was in a wheelchair.

Because she couldn't physically stand. Her left arm with twitch and spasm. She would apologize, say sorry, and then try and get back in a position for the exam. And she was literally getting worse by the minute. Within two or three hours, she had to have a breathing tube 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. If you are diagnosed with rabies, then what do you do? You die, basically. You die? Yeah. Well, like, 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 Wasek. I'm a senior editor at Wired Magazine. And they wrote a book called Rabid, 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 in the Samarian literature, in 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 genin and you got bit by a bat, you might have tried eating a cock's brain, goose grease mixed with honey, the flesh of a mad dog, salted, the skin or old slough of a serpent, a clod from a swallow's nest applied with vinegar, and then we have the dung of red poultry, provided it as of a red color is very useful.

If those didn't work, you could pull out the feathers from around a 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 rabid dog or bat bite is actually going to transfer the virus.

In the sense that, you know, the saliva just will fail to get the virus where it needs to be. So every so often, the healer's going to come along with his roosters anus and, you know, 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. 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 there. Right, exactly. So you get a wound, it gets infected, that goes into the blood. But 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 can 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 like 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 like 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 rock. thriving 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're just shake and overflow.

The muscles in their throat sees up. A 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 advantageous. You are trying to transmit virus through biting. So an animal who can't swallow his virus-filled saliva.

They're going to be like a loaded gun. Right. And eventually, after a few days in these late stages, a 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 a, it was. So when the official results came back and Rodney took Gina's mom and dad and 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 and 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 what else do you got and they said well we can do standard intensive care well does that work well no what else do you have and then Dr. Wilby said okay 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. And what I did is I pulled, I don't know, about 20 years worth of case reports. Started reading. It sounded pretty hopeless. 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.

disorder of nerve transmission. That may be what's happening in the brain during rabies is something called excitotoxicity. Excitotoxicity. Excitotoxicity. Yeah. 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 over-stimulated, over-excited, 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 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, rabies doesn't destroy 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. Entirely normal. Moreover, the virus was gone. You couldn't even detect the rabies virus in their brain. The brain no longer had rabies in it. Really?

Yeah, it was like there was no weapon at the virus. 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 beat your immune system to the punch. It would kill you faster than the immune response could eradicate it. Because the virus moves, what,

more quickly than the immune system? Way faster. And to me, me 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. That's worse than death, I think, in everybody's eyes. Were you nervous about the possible, like he said, she could end up being a vegetable just like she'd survive. I don't think I thought that far ahead. 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 pole 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 a hold of you. He is my refuge and my fortress, my God in whom I trust. Surely he will save you from the Fowler's snare and from the deadly pestilence. And so we were just waiting.

It 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. So our immune system is working?

Yeah, it was working, and in fact, we now had rabies antibody, and we had a fair amount of it, and it was in the spinal fluid, meaning it's around the brain. And so essentially the plan worked. So we 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 under for another week.

And then finally, they start to wake her up again. And she gradually, you know, woke up. The radiativeity looked great, and she had nice pupils. But physically, she did not move a muscle. They'd pinch her. They'd poke her. She had no movement. anywhere other than her pupils. So she was responding to light?

Light, that's it. And this was the one thing that Rodney was most afraid of, that Gina was... A lock-in, essentially locked inside this box of a body. And it was the worst day of my life. Because it looked like she'd probably go to 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 about two days later, Rodney's in the hospital, he's looking over Gina's charts. You know, he's just checking her exam. 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 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 Gina Gese, 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. Having fish. I remember we had fish. How long was she in the hospital for?

About two months. I had to learn how to stay in and then to walk, to turn around, to move my toes. I was really after 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 it to do. And it was frustrating. And it definitely took a toll on me psychologically. You know, I'm still recovering.

I'm not completely bad. stuff like balance and I can't, you know, run normally. She can't play volleyball anymore, but she finished high school, went to college. I graduated with a degree in just general biology. And now Gina is really into bats. She's a bat lover. Yeah. 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 stuff.

Yeah, I'll feed them, I'll pet them. I've been going to bat festivals here in Wisconsin, so I have no fear of bats. That 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. That's the name of Rodney's thing that he did with her? Yeah. You 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 I'm about to 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, you know, percentage for a treatment for a disease, five out of 30. But on the other hand, this is rabies. And, you know, for all of human history, it was zero out of 30. Was there anything about the five? 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 Requenko, a physician by profession.

Just so happens, Sergio was also from Peru. I was born in Lima. And he now works as an epidemiologist at the CDC. But in 2010, they traveled deep into the Amazon jungle. First from Lima, we have to travel to Trapoto. I mean, we're talking remote. What were they looking for? 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. Terenacocha and Santa Marta. So they arrive and... Have a pretty lengthy discussion with the community leaders. They explain what they're up to, then go door to door. Household to household. We visit each house and talk with one member of the family.

And they'd ask, you know, have you been bit by a vampire bat? Have you had any illnesses? Then they'd take a blood sample. And what they found is basically... 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 amount to 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 in any of the cases. They didn't seem to have rabies. They 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.

Huh. 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, laboratory confirmed 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. Hmm. Wow. And this actually brings us back to Gina.

Because at the point when she arrived at the hospital to see Rodney. She actually 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. We could not isolate virus from her. Which is unusual. It does seem that she is immunologically. 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, you know, 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 Gina Gesey survived. 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, you know, 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 rabies. I mean tens of thousands of slum kids in Bangkok could be preventatively vaccinated against rabies. So these critics would say, you know, give people a vaccines, but don't induce a 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 a coma, you have a coma, and don't induce a coma. 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 Gizi, that's very unlikely. Gino was basically at death's door. There are something that might not be fully understanding in Gina Gis' case, but it was obvious that if she was not given this alternative, she might not have survived. And you could argue that if Gene 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 zero percent survival to being 85 percent survival. And now he puts the success rate of his protocol. At about 20%.

That's a lot better than zero. 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 throw up your hands, say, sorry, it's not going to make it? Do you check and see if maybe he's immunologically special? Put him in a coma? Do you put him into a coma that you don't know is going to work? Whatever the case, you've actually got to 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 99.999.9.9. You know, like it's... And it might be that it was never quite on that throne. Yeah, exactly.

Ever. Right. All right. Well, we've certainly cleared things up. Thank you, Tim. Thank you. Sure thing. Thanks also to Ashvin Shaw for research help.

And to you guys for listening. Hi, this is Claire calling from Beijing. Radio Lab is supported in part by the National Science Foundation and by the Alfred P. Sloan Foundation. enhancing public understanding of science and technology in the modern world. More information about Sloan at www.slown.org.