Reply All - #75 Boy Wonder

Episode Date: September 1, 2016

Barry develops a small but very inconvenient health problem, which becomes so persistent and pernicious that it feels as if someone put a curse on him. Sruthi Pinnamaneni goes deep on a decades-long medical mystery. Lisa Sanders’ book, Every Patient Tells a Story. Lisa Sanders’ column, Diagnosis. Become a Gimlet Member to join our Q&A this Friday at 12PM EST! Listen to Reply All Executive Producer Tim Howard's latest release as Soltero! Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hey, this is PJ with just a tiny bit of housekeeping before we start the show. So one, we're trying something new on Friday, which is at lunch, noon, Eastern time. Shruthy is going to be doing a Q&A for Gimlet members. If you're a member, join us in the Slack channel. If you have questions about this episode, which has a story that she reported, or other reply-all stories she's worked on, like on the inside, come join us. We're going to hang out for like an hour. It'll be fun and weird.

We're looking forward to it. If you're not a member, obviously, you can sign up on Gimlet's web page, gimletmedia.com. It's five bucks a month. Also, our executive producer, Tim Howard, who, as has been mentioned on the show, is also a very talented musician who plays under the name Sultaro. He just put out two songs from his new album, and they're really, really good. The album's called August 31st. It's on his bandcamp. It's just sultero.bancamp.com.

My favorite song right now is, I want to have a baby. Okay, there will be links for both of those things in the episode description. No more plugs for anything. Here's the show. I'm Gimlet. This is Reply Off. I'm PJ Vote. And I'm Alex Goldman.

And. And. Shruthy Pinnaminani is in the house. Yes. I'm back. And this time, another medical mystery. Oh. For those of you who don't remember way back in episode 42,

Shruthi brought us a great story called Blind Spot, which was about a person who is suffering from. a problem she couldn't quite pinpoint no matter how many specialists she went to see. And the only person who could answer the question for her was the internet. And it turned out the real blind spot was society. Yeah. So the thing that caught my attention about this particular story, it's about a guy who starts off having what's just this very inconvenient health issue.

But it then balloons into this other thing that is so, it's almost beginning. And it's almost like someone has put a curse on him. So this patient, let's call him Barry. Barry grew up in India and his story starts back in 1986. At this point, he's living in Africa in Lome, which is the capital of Togo. He has a wife, a one-year-old son, another baby on the way, and he's a very successful businessman. Our group headquarters were in Europe. I used to fly in and out of Europe four, five times a month.

month at least. Oh, wow. I was traveling all over the world. I used to travel first class. And when I lived in Lomae, my company used to charter jets for me to travel because I was doing, I was handling a mega big global trading portfolio. It was said, I mean, I mean, I just like to, if I may just phrase it as a parable, whatever I touched, turn gold, everything was going well for me in life. Barry was 30 years old. He said he was healthy, like to go on long, And then one day, he said he just felt this like fluttering. Like this feeling of an urge to pee. And he would go to the bathroom, but the feeling it just wouldn't go away.

Within a week, I realized that things are not right. The plumbing is not right in my body. And I was going to pee very, very often. And over a period of time, it built up to 40, 45, 50 times. I'd just be, I'll be hovering around the bathroom. How did he do his job? Exactly. So he said that he would plan his entire day around the fact that he had to pee all the time. So you're basically just sort of mapping out the space as soon as you arrive saying, okay, there's the bathroom, here's my meeting.

Literally. Literally. So even if I was in a meeting with a banker, I mean, I had, he knew that I have a problem. Hey, listen, I might have to leave the meeting and go out and rush to the loo. So I sort of opened up about my problem. There was no inhibition in my mind. There was nothing like that people are going to laugh. All that has never bothered me. I've never been one for appearances. Barry wasn't really freaking out just yet. He figured whatever he has, it's small.

A doctor can help. So he starts with his local physician in Togo. And the doctor says, oh, you have an SDD, obviously. Barry says, no, I really, I haven't had any affairs. I don't think I have an SDD. But the doctor's like, yeah, yeah. Either way, the doctor gives Barry the antibiotics. Barry takes them, but they don't help. He still needs to go to the bathroom all the time. And on top of that, now when he goes, he says there's some kind of obstruction, like the urine sort of trickles out.

And new symptoms start showing up. He's tired all the time. He starts getting this uneasy sinking feeling, like the feeling you get right before you come down to the flu. And he'd get it at the same time every after. By 4.30, I'd get a fever of 99.2 degrees. I still remember that. I'd start feeling feverish. 99.2, exactly? Exactly. Exactly. It used to be. I mean, approximately. More or less exactly. Low-grade fever. So at this point, we're in month 18 of these mystery symptoms. And Barry is definitely starting to panic. He goes to London, a fancy clinic there, to see if the doctors have a better idea than SDD. But the doctors there are, are also kind of scratching their heads. You know, they have no idea what's going on with him.

So they put him through this battery of tests, everything from an HIV test to urological test to cystoscopies. And there's one test that Barry remembers especially clearly. It's a thing called a urodynamic study. It was a huge room, maybe 30 feet by 30 feet. Uh-huh. Filled with, there was a loo in the middle of the room. And it was filled with all kinds of equipment and cable. and blah blah blah blah and I was surrounded by all this electronic gadgetry

I was sitting with this wizard who said this is a new test which has come to design my kind of problems and I was sitting is pretty much like a recording studio I see cables and wires and equipment all around me except that it was much worse and I remember I had to stand there and pee and my urine fluid rate was very very poor and I was just standing there and peeing and I was just telling myself

oh god is this going to be to be my life. That sentence stuck me then, that is this going to be my life where they're going to try and experiment and try and find solutions? It sounds like he's describing like the weird hospital that Bruce Willis ends up in in the future in 12 monkeys. Like it just sounds like such a, it does not sound like any medical procedure I've ever been. Yeah. Yeah. So by this point, it's 1990. Barry has been sick for four years. And it's gotten so bad that he's had to take time off of work to figure out what's going on. He moves back to India with his entire family.

And there he sees a doctor, actually one that he'd happened to see way back when his symptoms first started. And he was surprised that, oh, four years ago you met me and you're still having the problem. And he quickly went through my history and heard about the low-grade fever. He says, oh, no problem. You have TB. So I said, what do you want to have TV? TB, tuberculosis. Do you guys know anything about tuberculosis?

No. I know that it's like an old in times disease, but then also people get in different parts of the world. And it's bad. It's so not old in times. It's not. It's so current. Yeah. It's actually one of the world's most deadly infectious diseases. I know nothing about anything. And it's especially common in India. So it's caused by a bug called mycobacterium tuberculosis. I just remember this so clearly from like a bunch of Bollywood movies that I would see as a kid. The moment the heroine, you know, she coughs into a handkerchief and then she looks and there's blood, like bright red blood.

And you're like, oh my God, she has TB, she's going to die. That was that thing? Yeah. I think I've seen the cough into the handkerchief in its blood, but I didn't know that was TB. It is TB. Yeah. And it turns out that it can actually attack totally different parts of the bodies, like not just the lungs. It can also go for the kidneys or.

As in Barry's case, the urinary system. So on the spot, we did a CT scan in this hospital in Bombay, and they found something called bulky seminal vesicles, which they said indicative of tuberculosis. And immediately he started me on a four-drug regimen, and the core drug is something called refampusin. Mm-hmm. Within 48 asthma, if you were stopped.

So the TB's gone. That's great. And what about the need to urinate? Is that also gone? that stays. And for some reason, Barry just gets worse. He has this whole avalanche of new symptoms, bad ones. Like, he starts getting kidney stones, which are excruciating, all the time. And his thyroid goes haywire. And, you know, because of that, he starts gaining a bunch of weight. He's getting this really weird thing with his eyes and his mouth. They're dry all the time. And as doctors

are like what is going on? Because this cannot be from tuberculosis. Barry's life turns into that of a lab rat. For the next 10 years, he just starts to get every single test under the sun to try and figure out what is this thing that he has. Just to give you a taste in a single year, he goes to two urologists, one nephrologist, one tropical medicine specialist, a chest physician, a psychiatrist, a psychologist, a psychologist. psychiatrist or dermatologist, one gastroenterologist, a hematologist, at one point, he even sees a faith healer. Wow. Yeah.

And all these doctors, they see that something's going on, but they don't know what. And one of the doctors recommends that he, that Barry have his prostate essentially scooped out. You know, because they're saying, like, maybe this is the organ that's causing all of these issues. And maybe if we just take it out, all these other symptoms will go. away. So they do this procedure and it doesn't help. It's crazy how much it's just like guessing. Like it's just, okay, like, let's rearrange the furniture of your body and maybe this will do something or maybe not. Yeah. And in this case, it's a pretty major rearrangement. And then as if this wasn't enough, Barry and his wife get divorced. He also makes a bad investment and loses all of his savings.

The boy wonder who was there for everyone. I've always helped people. I was the council for people. I would help people financially. The boy wonder was in a mess. The boy wonder became a middle-aged man in a mess. The very people who I would help and people who had groomed and people wouldn't take my call and people thought I want to borrow money

or people thought I'm dead and gone. I'm just a waste of time. But I never gave up one life. But there must have been moments, you were frustrated? I sit and talk to myself. It's a habit I've developed over many years. I do that every day even now.

What do you say? I have a near full-length mirror in my bedroom, and when I'm very, very tired, I stand in front of it. If I'm very tired, I put a chair and sit down and I talk to that old, tired-looking man and tell him that, what the hell do you think you're doing? Now, Barry is in his late 50s.

So he has spent half his life looking for a diagnosis. And then last year, he comes across a magazine article about crowd med, the website, crowd med. Which we're not advertising, but which we're doing, I guess our second story where crowd med is like a character in it, right? Right. And so that's a website where if you have a like a thing, a medical issue that you think has been incorrectly diagnosed, you go to this website, you create a profile for yourself. You put in all your medical history. And then you essentially assign a bounty for solving the case. So you say, I'll pay $500 for the medical detective who can solve this case. And so Barry submits his full medical history.

I have your case in front of me. It's very large. Yeah, because I wanted, unless it's detailed, nobody would get a hang of it. So a bunch of medical. medical detectives take on Barry's case. And there's one, he calls himself aptlyx, and he's a hot shot. Like, of all the medical detectives on this site, he has won the most bounties, $23,000 for just solving cases. Can you tell me a little bit about what you do just in your regular life? So what are you a doctor of? Well, I'm a doctor in internal medicine, and I'm partially retired, dividing my time between a university hospital and a VA hospital.

And I'm just curious, like, as a doctor, it sounds as if you've been working in internal medicine for a long time. Yes, I guess, 40 years about. Whoa, 40 years. Okay. So, Abtrik starts to wade through all these different tests that Barry's have. And right away, one detail stands out to him. The place I began was with this aluminum or, to him, aluminum toxicity. Would that explain any of the symptoms that he had? No, it wouldn't explain what he had.

Okay. That what that results in is a progressive brain disease. Which very clearly does not show signs of. The next thing that really attracted my attention was myisthenia. because it did explain an awful lot. So the thing that Aprix is talking about here is Myisthenia Gravis. It's this autoimmune disorder. And Aprix is thinking, you know, it might cover some of Barry's symptoms, like the weakness, the fatigue, the muscle issues.

But then he starts wondering about this other disorder, a neuromuscular one, which could explain those same symptoms. And this one is sometimes accompanied by a kind of cancer. Often a hidden cancer which may show itself, first of all, by muscular weakness. But Aptrix then realizes that there's no way Barry could have had this cancer for this many years. And so Aptrix and I talked for an hour and a half, and the man as a saint, he patiently walked me through all these different possibilities and the huge amount of thought that he put into each possible solution over the course of my life. months as he tried to solve Barry's case. You may want to take this out of your final podcast, but it's a spoiler. As you know, we didn't ever really get to a specific final diagnosis for Barry.

Why would I take that out? Well, you might want to keep people on tent hooks until later. In the end, Apteryx told Barry, listen, you might have this cluster of autoimmune disorder. that are all interlocking with each other, you possibly have four of them. And if that's the case, we can treat the symptoms, but there's no cure. And we can't give you this one simple solution

you've been looking for. After the break, we refuse to take it's complicated for an answer. And now, back to the show. So Barry had just been given this diagnosis by a crowd med doctor, Aptorix, who basically says, this lifetime of suffering, we're not sure what caused it at all.

Best we can say is it's a cluster of autoimmune diseases that can't be cured. And we're not even 100% sure of that. But, of course, it's still possible that crowd met as wrong. Like, what if there is one diagnosis? We just haven't found it yet. Right. So I reached out to the one person in the world who I think can crack this. It's someone we've had on the show before.

Dr. Lisa Sanders. Superhero. Would she like, ugh? Does she have your number box? So, Dr. Lisa Sanders, of course. She's a doctor at Yale. She teaches at Yale. She has a New York Times column called Diagnosis.

She was the inspiration of her house. She gets all the show. She's just Sherlock Holmes. It's like, people come to her and they're like, I've been to a million doctors. I can't figure out like why there's. There's like weird hair growing all over my body. Like, can you Lisa Sanders solve this?

Yeah. She's like, yeah, you're a Yetty. Right. So I emailed Lisa about Barry and I'm thinking, you know, here's what could be the most studied man medicine has ever known. And I sent her his crowd med report. And I felt like I was basically handing her like a medical detective's, like a gift to a medical detective. Like here's every clue possible. And Lisa looks over all the paperwork and calls me and says, this is just a pile of random test results.

This does not help. Having the wrong information turns out to be a really important problem in diagnosis. The way it should work is you listen to the symptoms, you examine the person, and then you think, what's likely? and then you test for that. And you do it in a systematic way. That's what's difference between a rifle and a shotgun. A rifle, you must aim it very precisely to get where you want to go. A shotgun, he just pointed in the general direction and buckshot's going to hit something.

Here, says Lisa, is the problem with this whole pile of tests. Number one, if you get this many tests done, you're going to get false positives. And number two, there very well might be this single clear answer that explains everything, but it's just buried in all this rubble. So this is where having a physical exam might be really, really useful. I know it doesn't get a lot of respect these days. So Lisa says that in a perfect world, she would start with a physical exam of Barry. But she can't, and she's a good sport.

So she said, you know what, I've looked through his information and here's my guess. So way back in 1986, when Barry had that first fluttering sensation, that constant urge to pee, Lisa thinks that he already had TB. And doctors may have missed it, and it went undiagnosed for so long, that it could have caused permanent damage. So you'll remember that he had difficulty passing his urine. And I think that was probably from the TB that was in his urethra, which can cause scarring. So even after the TB was diagnosed and treated a couple years later, the scarring was still there. And so Barry continued to have these urinary issues.

And after that, a couple years later, he starts to develop these other symptoms like fatigue, dry mouth, dry eyes. And Lisa thinks that that could be the big clue. That would be, for me, the first signs of chogrens. But there are some people who have chogrens who... Oh, my gosh, I have a dozen questions all at once. A, I don't know anything about churgrens. Am I saying right? Shurgrens?

Mm-hmm. Shurgrens? So this part got pretty technical. But basically, all you need to know is chogrens is an autoimmune disorder. It affects the cells of tear glands, salivary glands. and it has all these side effects that Lisa sees in Barry. It seems clear that his diagnosis of Shogran's could cover everything. It could cover his stone forming tendencies.

It could cover his fatigue, his body aches. I think he had a muscle problem. All of those things can be explained by a diagnosis of Shogrens. So that's great. Wait. Yeah. Does that also mean that Barry has? That's another test?

So I call him and I was like, Barry, like, I got Dr. Lisa Sanders. She's amazing. She was the inspiration for House. Yes. I don't think he knows House. But anyway, I tell him everything she said. He's very, he's grateful. He's like, yeah, I love this makes sense.

But I've had the test for Shurgrens. I've had it twice already. One time in the late 2000s and then just recently, Aptrix, the detective at CrowdMed, had him take a more precise test. And that test two was negative. Barry does not have chagrins. I know. I was just, it felt like we were just back at square one. And I went back to Lisa and I told her, you know, hey, I looked into it.

It's not chogran's. And she said, listen, there may be some one solution that she and everyone else is overlooking. But what if there isn't? What if no clear, satisfying diagnosis for Barry really exists? And Lisa says, I know that that feels like a cop-out question, but there's a good reason to ask it. I divide symptoms into system-wide and localized. And I would say that, you know, peeing is localized. Fatigue is system-wide.

And I'm trying to put them all into a pattern. It doesn't always work that way. You know, patients really long for this metaphor we use in medicine, Occam's razor. Yeah. You know, William of Occam, the simplest, most elegant single solution is often correct. That might be true in a system that doesn't have a lot of moving parts that are acting independent. Yeah. And in medicine, we like to come up with a single solution. But I think people actually have adhered to a different precept called Hickham's Dictum, which is, you know, from this guy, John Hickham. Wait, his name is actually Hickham. It's called Hickham's dictum? Well, yes, it's named after him. Guys, this blew my mind. I've never heard of this person, okay? So I looked him up. He's this doctor in the 1950s at Duke University. And was this like in response to Akam?

Yes. Ockham was like I have a razor and Hickham was like, well, I have a dictum. Well, can I tell you what is dictum is? Yes. It is. Patients can have as many diseases as they damn well, please. That's amazing. People have more than one thing.

Occam's razor is this fake thing that we impose on a patient to try to identify the cause of their chief concern. Right. But I do think that the last time we spoke, that's what you were trying to do, right? Like, it's not just the patient who wants this. It's also you. Of course. And I think it feels like a non-answer to say it's Hickham's dictum. You know, a part of me feels like, oh, medicine has given this promise of a single answer and we should keep looking for it. Medicine has not given this promise of a single answer.

the stories that are presented in the media and on television tell a single story. They're carefully constructed and chosen. Yeah. You know, one of the things I've wanted to do in my column is to do an unsolved case. Really? But the problem is that an unsolved case is a failure as a story. These are mystery stories. If you just said, well, we'll never know who killed the guy.

People would be like, what? Maybe you could do that once, but people don't like that. People like mysteries, like diagnosis, like Sherlock Holmes stories, because at the end we can tie it all up and it makes the world seem like a logical and reasonable place. Lisa said that just the day before, she had this patient who came to her with this very strange collection of symptoms. The patient felt like one side of her body would swell up, but not the other side. And so Lisa pulled out a tape measure, measured her two sides and said, huh, I don't see any swelling today.

And the patient said, she says, well, this is a good day. I said, well, come back on a bad day. And let's measure it then. I don't know. But, you know, I did come in and talk to a colleague and I said, you know, what do you think? He says, well, I've actually taken care of several. patients like that. And I've never been able to find anything. So I don't know, I don't know what that is. But maybe there is something there, something that tests just can't pick up. And it's just one more

miss for Rockham's Razor. You know, people think of medicine as ancient. The desire to find a solution to make people better. That is ancient. The ability to actually do that is brand new. And we're just at the beginning. I mean, we didn't even have penicillin until after World War II. I mean, so even though it sounds terrible to say, I don't know, let's see if it gets better, that actually is probably the truest answer we can make many times. It's funny because you're so positive, but where you're saying is kind of depressing. It's not depressing.

We just got started. You can't think that we've been doing this forever. We just got started. Yeah. Look, are you depressed that we haven't gotten to Mars yet? A little bit. Yeah. Hi, bye.

Hi, I can't see you. So, I wasn't exactly looking forward to calling Barry back. Because, you know, I'd wanted to come back to him with something like Occam's razor, not Hickham's dictum. But when I called him, he was in his office in Punei. And he said he wasn't disappointed at all. No, I didn't get my hopes of at all. I knew that if something else comes up, it would be the silver lining on the cake, but I'm enjoying the cake as it is. It's very, very easy to get demotivated and depressed and be angry at the world and angry at God and angry at Vincent.

It's so easy. But I refuse to fall in that basket. And this was the surprising thing for me. Like, the way Barry sees it, he spent a huge, chunk of his life with one question, what do I have? And when Apteryx told him that he may never have that one answer, it was like, instead of asking what do I have, he could say to himself, here's what I have, a new business that's going well, a new partner, who I love. And instead of looking for this precise reason that he, say, gets tired in the middle of the day, he just put a

bed in his office. Which is very unusual. Some days, if I have a meeting later, I close the door, you know, switch off all the phones, put my mobile phone on silent and take a nap. This is my reality. And I'm not unhappy with my reality. And when it's hard, like when Barry's confronted with the limits of what his body can do, it turns out that he isn't turning to Occam's razor or Hickham's dictum. Instead, he's got Barry's boards. Yes, I have two full boards of quotes written by me.

Two massive whiteboards of inspirational quotes that he coined. Oh, oh, can you read them to me? I'll take the eye-fide inside, okay? Okay. Thoughts can be your creator or destroyer. Uh-huh. Yesterday was the past. Today is the opportunity.

Tomorrow's the future. Keep reinventing yourself. Innovate or perish. Uh, benchmark a trait you wish to emulate. Uh-huh. How do you benchmark a trait? Benchmark a trait that you wish to emulate. The trait I always wish to benchmark is positivity.

Okay. Yes. Reality, face it or let it shake you. Enjoy it today. And attitude determines altitude. This is my favorite. Every downturn is an excellent opportunity. Shruthy Pinnameney.

She's a producer for Reply All. Dr. Lisa Sanders wrote a book. It's called Every Patient Tells a Story. It's a collection of medical mysteries. Go find it. Replyal is hosted by me, PJ Vote, and Alex Goldman. We're produced by Shruthy Pynomenini, Fia Bannon, Chloe Prasinos, and Damiano Marquetti.

Our executive producer is Tim Howard. He were edited by Peter Clowny. Production assistants from Thane Faye and Tom Cody. This is Tom's last week with us. We are very, very sad to see him go and very excited to see what he does next. We will miss you a lot, Tom. We were mixed by Rick Kwan. Huge thanks to Dr. Bobby Najari at the NYU School of Medicine

and Dr. Alan Baer from the Shrojan Syndrome Clinic at Johns Hopkins. Thanks also to Emily Kennedy, Jackie Helbert, and Lori Ann Brass. Matt Lieber is a three-day weekend you completely forgot about. Our theme music is by the mysterious breakmaster cylinder. Our ad music is by Build Build Buildings. Our website is Replyall.limo. You can find more episodes of the show at iTunes.com slash Replyall in Google Play or wherever you personally decide to get your podcasts.

Thanks for listening. We'll see you next Wednesday.