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: Medical Mysteries and the Art of Diagnosis.
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!
Further Reading
Lisa Sanders’ book, Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.
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!
Transcript Read Now
PJ VOGT: From Gimlet, this is Reply All, I’m PJ Vogt.
ALEX GOLDMAN: And I’m Alex Goldman.
SRUTHI PINNAMANENI: And …
PJ: And?
SRUTHI: And--
ALEX: Sruthi Pinnamaneni is in the house.
SRUTHI: Yes. I’m back. And this time, another medical mystery!
PJ: Oh!
ALEX: For those of you who don’t remember, way back in episode 42, Sruthi brought us a great story, uh, called “Blind Spot.” Which was about a person who was 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.
PJ: And it turned out the real “blind spot” was society.
SRUTHI AND ALEX: (laugh)
SRUTHI: Um yeah. So the thing that caught my attention about this story--it’s about a guy who has this very inconvenient health issue … but it then balloons into this other thing that is so--it’s almost beyond medicine, and--it’s almost like someone 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.
BARRY: Our group headquarters were in Europe. I used to fly in and out of Europe four, five times a- a month, at least.
SRUTHI: Oh, wow.
BARRY: I was travelling all over the world, I used to travel first class.
SRUTHI: A-huh.
BARRY: And, um … when I lived in Lome, my company used to charter jets for me to travel, because I was doing--I was handling a mega, big global trading portfolio. Uh.
SRUTHI: Uh--
BARRY: It was said, I mean - I mean, I’d just like to--if I may just phrase it as a parable, whatever I touched turned gold.
SRUTHI: (laugh)
BARRY: Everything was going well for me in life.
SRUTHI: Barry was 30 years old. He said he was healthy, liked to go on long walks … And then one day, he said he just felt this, like ... fluttering? Like, this feeling of - of an urge to pee.
And he would go to the bathroom, but the feeling, it just wouldn’t go away.
BARRY: Within a week, I - I realized that, uh, things are not right. The plumbing is not right in my body.
SRUTHI: Uh-huh.
BARRY: And I was going to pee very, very often.
SRUTHI: Uh-huh.
BARRY: And over a period of time, it had built up to 40-45-50 times--I’d just be … I’d be hovering around the bathroom.
PJ: How did he do his job?
SRUTHI: Exactly! So he said he would plan his entire day around the fact that he had to pee all the time.
SRUTHI: So you’re basically just, sort of, mapping out the space as soon as you arrive, saying, “OK. There’s the bathroom, here’s my meeting. …”
BARRY: Yeah, yeah. Yeah.
SRUTHI: “I’m gonna--”
BARRY: Literally, literally, so even if I was in a meeting with a banker. I mean, I had to--he knew that I have a problem. “Hey listen, I might have to leave the meeting, go out and rush to the loo. So.”
SRUTHI: Mmhmm.
BARRY: I - I sort-of opened up about my problem. There was no inhibition in my mind.
SRUTHI: Mmhmm.
BARRY: There was nothing like, “The people are gonna laugh.” All that has never bothered me. I’ve never been one for appearances.
SRUTHI: 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 STD, obviously.” Barry says, “No, I - I really, I haven’t had any affairs, I - I - I don’t think I have an STD.” 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 with the flu, and he’d get it at the same time, every afternoon.
BARRY: By 4:30, I’d get a fever of 99.2 degrees, I still remember that. I’d start feeling feverish, febrile--
SRUTHI: 99.2 exactly?
BARRY: Yeah. Exactly, it used to be.
SRUTHI: That’s so weird.
BARRY: I mean approximately, more or less exactly. Low-grade fever.
SRUTHI: 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 “STD.”
But the doctors there 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 tests to cystoscopies, and there’s one test that Barry remembers especially clearly. It's a thing called a urodynamics study.
BARRY: It was a huge room, maybe - maybe 30 feet by 30 feet?
SRUTHI: Uh-huh.
BARRY: Filled with--there was a loo in the middle of the room. And--
SRUTHI: Uh-huh.
BARRY: --it was filled with all kinds of equipment and cables and blah blah blah blah. And I was surrounded by all this electronic gadgetry.
BARRY: I was sitting with this wizard who said, “This is a new test which has come to design my kind of problems.”
SRUTHI: Uh-huh, ok.
BARRY: And, uh, I was sitting ... it was pretty much like a recording studio, I see cables and wires and equipment all around me, except it was much worse. And I remember I had to stand there and pee. And my urine flow, it 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 my life?”
That sentence stuck me then … that “Is this going to be my life? Are they going to try and experiment and try to find solutions?”
ALEX: It sounds like he’s describing, like, the weird hospital that Bruce Willis ends up in in the future in Twelve Monkeys. Like, it just sounds like--
SRUTHI: Right?
ALEX: --such an … it does not sound like any medical procedure (laughing) I’ve ever been through.
PJ: Yeah.
SRUTHI: Yeah.
SRUTHI: 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.
BARRY: And he was surprised that, “Oh! Four years ago you met me and you still having the problem?”
SRUTHI: Mm.
BARRY: 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--
SRUTHI: TB.
BARRY: “What do you mean I have TB?” I said, “They’ve che-” Yeah--
SRUTHI: TB.
BARRY: TB. Tuberculosis.
SRUTHI: Do you guys know anything about tuberculosis?
PJ: No.
SRUTHI: Yeah, it’s--
PJ: I know that it's like, an olden-times disease, but that also people get it in different parts of the world. And it's bad.
SRUTHI: It's so not olden times.
PJ: It's not?
SRUTHI: It's so current. Yeah. It's actually one of the world’s most deadly infectious diseases.
PJ: I know nothing about anything.
SRUTHI: 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 gonna die!"
PJ: That's was that--
ALEX: That was a thing?
SRUTHI: Yeah. This is common.
PJ: I think I've seen the cough-into-the-handkerchief-and-it's-blood, but I didn't know that was TB.
SRUTHI: It is TB. Yeah. And it turns out it can attack totally different parts of the body--like not just the lungs. It can also attack the kidneys, or, as in Barry’s case, the urinary system.
BARRY: 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 is indicative of tuberculosis. And immediately, he started me on a- a four-drug regimen. And the core drug is something called rifampicin.
SRUTHI: Mmhm.
BARRY: Within 48 hours, my fever stopped.
SRUTHI: So, the TB's gone.
PJ: That's great!
ALEX: And what about the need to urinate, is that also gone?
SRUTHI: No, that stays. And for some reason, Barry just gets worse.
He has this whole new avalanche of new symptoms. Bad ones. Like, he starts getting kidney stones, which are excruciating--all the time. Um, and his thyroid goes haywire, and, you know, because of that, he starts gaining a bunch of weight.
Uh, he’s getting this really weird thing with his eyes and his mouth--they're dry all the time. And his 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 ten 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, uh, two urologists, one nephrologist, one tropical medicine specialist, a chest physician, a psychiatrist, a dermatologist, one gastroenterologist, a hemotologist--at one point, he even sees a faith healer …
ALEX: Wow.
SRUTHI: Yeah, and all these doctors, they see that something is 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.
PJ: It’s crazy how much it’s just like guessing. Like, it’s just, “OK, like, let’s rearrange the furniture of your body and maybe this’ll do something. Or maybe not.”
SRUTHI: 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.
BARRY: The boy wonder who was there for everyone--I’ve always helped people. I was the counsel 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 I had groomed and--people wouldn’t take my call, and … people thought I want to borrow money or people thought I’m- I’m dead and gone. I’m just a waste of time. (pause) But I never gave up on life.
SRUTHI: But there must have been moments where you were frustrated?
BARRY: Uh, I sit and talk to myself--it’s a habit I’ve developed over many years. I do that every day, even now.
SRUTHI: (smile-sighs) What do you say?
BARRY: I have a near full-length mirror in my bedroom, and when I’m very very tired--
SRUTHI: Uh-huh.
BARRY: --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?”
SRUTHI: Now, Barry is in his late fifties. So he has spent half his life looking for a diagnosis. And then last year, he comes across, uh, a magazine article about CrowdMed, the website, CrowdMed. (laughs)
PJ: Which we are not advertising. But which we’re doing, I guess, our second story where CrowdMed is, like, a character in it, right?
SRUTHI: Right, and that's the website where if you have uh, uh ... a ... like a thing, a medical issue that you think has been incorrectly diagnosed, you go this website, you create a profile for yourself, um, you put in all your medical history, and then you essentially sign a bounty, uh, 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.
SRUTHI: I have your - your, um--your case in front of me. [page ruffling] It’s very large.
BARRY: Yeah. Because I wanted--unless it’s detailed, nobody would get the hang of it.
SRUTHI: So, a bunch of medical detectives take on Barry’s case. And there’s one … he calls himself Apteryx--and he’s a hotshot.
Like of all the medical detectives on the site, he has won the most bounties. $23,000 for just solving cases.
SRUTHI: Can you tell me a little bit about what you do, just, in your regular life? Uh, so, what are you a doctor of?
APTERYX: Well, I’m a - a … a doctor in internal medicine. And I’m partially retired--
SRUTHI: Mmhm.
APTERYX: --divid- dividing my time between a university hospital and a VA hospital.
SRUTHI: And I’m just curious, like, as doctor, it sounds as if you’ve been working in internal medicine for a long time.
APTERYX: Yes, I guess, uh, 40 years, about.
SRUTHI: Woah! (laugh) 40 years, OK. And um--
So Apteryx starts to wade through all these different tests Barry’s had, and right away one detail stands out to him.
APTERYX: The place I began was with this aluminum, or to him, alu-min-ium toxicity…
SRUTHI: Would that explain any of the symptoms that he had?
APTERYX: No, it wouldn’t explain what he had. What that results in is a progressive brain disease.
SRUTHI: Which Barry clearly does not show signs of.
APTERYX: The next thing that really attracted my attention was myasthenia because it did
explain an awful lot.
SRUTHI: So the thing that Apteryx is talking about here is myasthenia gravis. It’s this autoimmune disorder. And Apteryx 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.
APTERYX: Often a hidden cancer which may show itself, first of all, by muscular weakness.
SRUTHI: But...Apteryx then realizes that there’s no way Barry could have had that cancer for this many years.
And so Apteryx and I talked for an hour and a half … and the man is 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 months … as he tried to solve Barry’s case.
APTERYX: And 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.
SRUTHI: Why would I take that out?
APTERYX: Well, I--you might want to keep people on tenterhooks, until later.
SRUTHI: In the end, Apteryx told Barry, “Listen, you might have this cluster of autoimmune disorders 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.”
ALEX: After the break … We refuse to take “it’s complicated” for an answer.
BREAK
ALEX: So, Barry had just been given this diagnosis by a CrowdMed doctor, Apteryx, 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 cannot be cured. And we're not even 100-percent sure of that.”
SRUTHI: But, of course, it’s still possible CrowdMed is wrong. Like, what if there is one diagnosis, we just haven’t found it yet.
ALEX: Right.
SRUTHI: So, I reached out to the one person in the world who I think can crack this. Um, it's someone we've had on the show before, Dr. Lisa Sanders (laughs).
PJ: (laughs) Superhero! Was she like, “Ugh.”
SRUTHI: (laughs)
PJ: Did she have your number blocked?
ALEX: “Again?!”
SRUTHI: (laughs)
PJ: Um, so Dr. Lisa Sanders, of course, uh, she - she's a doctor at Yale. She teaches at Yale. She has a New York Times column called "Diagnosis." She was the inspiration for House. She's a 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 like weird hair growing all over my body, like--can you, Lisa Sanders, solve this?”
SRUTHI: Yeah.
PJ: She's like, "Yeah, you're a Yeti."
SRUTHI: (laughs).
SRUTHI: So I e-mailed 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 CrowdMed 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."
LISA: Having the wrong information turns out to be a really important problem in diagnosis.
SRUTHI: Mhmmm.
LISA: 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 the difference between a rifle and a shotgun. A rifle, you must aim it very precisely to get where you want to go. A shotgun, you just point it in the general direction and buckshot’s going to hit something.
SRUTHI: And 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.
LISA: 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. (Physical exam--)
SRUTHI: 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’ve caused permanent damage.
LISA: So you’ll remember that he had difficulty passing his urine.
SRUTHI: Mhmmm.
LISA: And I think that was probably from the TB that was in his urethra--
SRUTHI: Yeah.
LISA: --which can cause scarring.
SRUTHI: 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.
LISA: That would be--for me--the first signs of Sjögren's. But you don’t, there are some people who have Sjögren's who--
SRUTHI: So--my gosh, I have a dozen questions all at once. Uh--A, I don’t know anything about Sjögren's, am I saying it, Sjögren's?
LISA: Mhmmm.
SRUTHI: This part got pretty technical, but basically Sjögren's is an autoimmune disorder, affects the cells of tear glands, salivary glands, and has all these side effects that Lisa sees in Barry.
LISA: It seems clear that his diagnosis of Sjögren's could cover everything.
SRUTHI: Mhmmm.
LISA: It could cover his, uh, stone-forming tendencies. Um, 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 Sjögren's.
PJ: That’s great! Wait, does that also mean that Barry has to do another test?
SRUTHI: So I call him, and I was like, “Barry, I got Lisa Sanders, she's amazing.”
PJ: She was the inspiration for House.
SRUTHI: 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, all of this makes sense, but: I've had the test for Sjögren's.”
PJ: Oh.
SRUTHI: I’ve had it twice already.
PJ: Oh.
SRUTHI: One time in the late 2000s … and then just recently Apteryx, the detective at CrowdMed, had him take a more precise test.
And that test, too, was negative. Barry does not have Sjögren's.
PJ: Ahhh.
SRUTHI: 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 Sjögren'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."
LISA: I divide symptoms into … system-wide and localized.
SRUTHI: Right.
LISA: And I would say, you know, that peeing is localized, fatigue is system-wide.
SRUTHI: Mhmm.
LISA: And I am trying - trying to put them all into a pattern, it doesn't always work that way. You know, patients really long for this - this metaphor we use in medicine, Occam's razor.
SRUTHI: Yeah!
LISA: You know? William of Occam, the simplest, most elegant, single solution is often correct.
SRUTHI: Yeah.
LISA: That might be true in a system, that doesn’t have a lot of moving parts that are acting in independently.
SRUTHI: Yeah.
LISA: And in medicine we like to--we like to come up with a single solution. But ... I think people actually have--adhere to a different precept called Hickam's dictum. Which is, you know, from this guy John Hickam--
SRUTHI: Wait, is his name actually Hickam? It’s called Hickam’s dictum?
LISA: Well yes, it’s named after him.
SRUTHI: 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--
PJ: And was this like, in response to Occam?
SRUTHI: Yes.
PJ: Occam was like, “I have a razor,” and Hickam was like, “Well I have a dictum”?
SRUTHI: Well, can I tell you what his dictum is?
PJ: Yes.
SRUTHI: It is, "Patients can have as many diseases as they damn well please.”
ALEX: (laughs) That's amazing!
LISA: 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.
SRUTHI: Right, but I do think that the last time that we spoke that is what you were trying to do, right? Like it's not just the patient who wants this, it's also you.
LISA: Of course.
SRUTHI: And I … I think it just feels like a non-answer to say it’s Hickam’s dictum. You know, a part of me feels like, "Oh, medicine has given this promise of a single answer, and - and we should keep looking for it."
LISA: 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 are carefully constructed and chosen.
SRUTHI: Yeah.
LISA: You know, one of the things I have wanted to do in my column is to do an unsolved case.
SRUTHI: Really?
LISA: But the problem is 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?!" (laughs)
SRUTHI: Yeah.
LISA: 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.
SRUTHI: 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--
LISA: 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 say, "What do you think? And he says, “Well, I have actually taken care of several patients like that and I have never been able to find anything. So I don't know. I don't know what that is.”
SRUTHI: But maybe there is something there. Something that tests just can’t pick up. And it’s just one more miss for Occam’s razor.
LISA: 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. (laughs) You know, 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.
SRUTHI: It's funny ‘cause you’re so positive but what you are saying is kind of depressing (laughs) for me.
LISA: It's not depressing. We just got started. You can't think that we have been doing this forever. We just got started.
SRUTHI. Yeah.
LISA: Look, are you depressed that we haven't gotten to Mars yet?
SRUTHI: (laughs) A little bit. (pauses) Yeah.
LISA: (laughs)
[SKYPE DIALING SOUND]
SRUTHI: Hi Barry.
BARRY: Hi, I can’t see you.
SRUTHI 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 Hickam's dictum. But when I called him, he was in his office in Pune … and he said he wasn’t disappointed at all.
BARRY: No. No. No. I didn’t get my hopes up at all--I knew that if something else comes up it’ll 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 [indistinct] …
SRUTHI: Uh-huh.
BARRY: It’s so easy. But I refuse to fall in that basket.
SRUTHI: 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 the precise reason that he, say, gets tired in the middle of the day--he just put a bed in his office.
BARRY: Which is very unusual. Some days, if I have a meeting later, I close the door, take, 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 uh, 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 Hickam’s dictum. Instead, he’s got Barry’s Boards.
BARRY: Yes, I’ve got two full board of quotes written by me.
SRUTHI: Two massive whiteboards of inspirational quotes that he coined.
SRUTHI: Oh! Oh--can you read them to me?
BARRY: Just one--I’ll take the iPad inside. One second, okay? (reading) “Thoughts can be your creator or destroyer.”
SRUTHI: Uh-huh.
BARRY: “Yesterday was the past, today ... is the opportunity, tomorrow is the future.” (takes a breath) “Keep reinventing yourself.”
SRUTHI: Mhm.
BARRY: “Innovate or perish.” Uh, “Benchmark a trait you wish to emulate.”
SRUTHI: Uh huh. How do you benchmark a trait?
BARRY: “Benchmark a trait that you wish to emulate.” The trait I always wish to benchmark is positivity.
SRUTHI: OK, yes.
BARRY: “Reality--face it or let it shake you.”
SRUTHI: Mhmm.
BARRY: “Enjoy your today.” And, “Attitude determines altitude.” This is my favorite. “Every downturn is an excellent opportunity.” “Quality is a function of through-put, not output …” [fades out]
PJ: Sruthi Pinnamaneni--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.
CREDITS
Reply All is hosted by me, PJ Vogt and Alex Goldman. We’re produced by Sruthi Pinnamaneni, Phia Benin, Chloe Prasinos and Damiano Marchetti. Our executive producer is Tim Howard. We were edited by Peter Clowney. Production assistance from Thane Fay and Thom Cote. This is Thom's last week with us … We are very sad to see him go and very excited to see what he does next. We will miss you a lot Thom.
We were mixed by Rick Kwan. Huge thanks to Dr. Bobby Najari at the NYU School of Medicine and Dr. Alan Baer from the Sjögren's Syndrome Clinic at Johns Hopkins. Thanks also to Emily Kennedy, Jacqui 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 Buildings. Our website is replyall.limo. You can find more episodes at itunes.com/replyall, and Google Play, or wherever you personally decide to get podcasts.
Thanks for listening, we’ll see you next Wednesday.
ALEX GOLDMAN: And I’m Alex Goldman.
SRUTHI PINNAMANENI: And …
PJ: And?
SRUTHI: And--
ALEX: Sruthi Pinnamaneni is in the house.
SRUTHI: Yes. I’m back. And this time, another medical mystery!
PJ: Oh!
ALEX: For those of you who don’t remember, way back in episode 42, Sruthi brought us a great story, uh, called “Blind Spot.” Which was about a person who was 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.
PJ: And it turned out the real “blind spot” was society.
SRUTHI AND ALEX: (laugh)
SRUTHI: Um yeah. So the thing that caught my attention about this story--it’s about a guy who has this very inconvenient health issue … but it then balloons into this other thing that is so--it’s almost beyond medicine, and--it’s almost like someone 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.
BARRY: Our group headquarters were in Europe. I used to fly in and out of Europe four, five times a- a month, at least.
SRUTHI: Oh, wow.
BARRY: I was travelling all over the world, I used to travel first class.
SRUTHI: A-huh.
BARRY: And, um … when I lived in Lome, my company used to charter jets for me to travel, because I was doing--I was handling a mega, big global trading portfolio. Uh.
SRUTHI: Uh--
BARRY: It was said, I mean - I mean, I’d just like to--if I may just phrase it as a parable, whatever I touched turned gold.
SRUTHI: (laugh)
BARRY: Everything was going well for me in life.
SRUTHI: Barry was 30 years old. He said he was healthy, liked to go on long walks … And then one day, he said he just felt this, like ... fluttering? Like, this feeling of - of an urge to pee.
And he would go to the bathroom, but the feeling, it just wouldn’t go away.
BARRY: Within a week, I - I realized that, uh, things are not right. The plumbing is not right in my body.
SRUTHI: Uh-huh.
BARRY: And I was going to pee very, very often.
SRUTHI: Uh-huh.
BARRY: And over a period of time, it had built up to 40-45-50 times--I’d just be … I’d be hovering around the bathroom.
PJ: How did he do his job?
SRUTHI: Exactly! So he said he would plan his entire day around the fact that he had to pee all the time.
SRUTHI: So you’re basically just, sort of, mapping out the space as soon as you arrive, saying, “OK. There’s the bathroom, here’s my meeting. …”
BARRY: Yeah, yeah. Yeah.
SRUTHI: “I’m gonna--”
BARRY: Literally, literally, so even if I was in a meeting with a banker. I mean, I had to--he knew that I have a problem. “Hey listen, I might have to leave the meeting, go out and rush to the loo. So.”
SRUTHI: Mmhmm.
BARRY: I - I sort-of opened up about my problem. There was no inhibition in my mind.
SRUTHI: Mmhmm.
BARRY: There was nothing like, “The people are gonna laugh.” All that has never bothered me. I’ve never been one for appearances.
SRUTHI: 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 STD, obviously.” Barry says, “No, I - I really, I haven’t had any affairs, I - I - I don’t think I have an STD.” 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 with the flu, and he’d get it at the same time, every afternoon.
BARRY: By 4:30, I’d get a fever of 99.2 degrees, I still remember that. I’d start feeling feverish, febrile--
SRUTHI: 99.2 exactly?
BARRY: Yeah. Exactly, it used to be.
SRUTHI: That’s so weird.
BARRY: I mean approximately, more or less exactly. Low-grade fever.
SRUTHI: 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 “STD.”
But the doctors there 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 tests to cystoscopies, and there’s one test that Barry remembers especially clearly. It's a thing called a urodynamics study.
BARRY: It was a huge room, maybe - maybe 30 feet by 30 feet?
SRUTHI: Uh-huh.
BARRY: Filled with--there was a loo in the middle of the room. And--
SRUTHI: Uh-huh.
BARRY: --it was filled with all kinds of equipment and cables and blah blah blah blah. And I was surrounded by all this electronic gadgetry.
BARRY: I was sitting with this wizard who said, “This is a new test which has come to design my kind of problems.”
SRUTHI: Uh-huh, ok.
BARRY: And, uh, I was sitting ... it was pretty much like a recording studio, I see cables and wires and equipment all around me, except it was much worse. And I remember I had to stand there and pee. And my urine flow, it 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 my life?”
That sentence stuck me then … that “Is this going to be my life? Are they going to try and experiment and try to find solutions?”
ALEX: It sounds like he’s describing, like, the weird hospital that Bruce Willis ends up in in the future in Twelve Monkeys. Like, it just sounds like--
SRUTHI: Right?
ALEX: --such an … it does not sound like any medical procedure (laughing) I’ve ever been through.
PJ: Yeah.
SRUTHI: Yeah.
SRUTHI: 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.
BARRY: And he was surprised that, “Oh! Four years ago you met me and you still having the problem?”
SRUTHI: Mm.
BARRY: 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--
SRUTHI: TB.
BARRY: “What do you mean I have TB?” I said, “They’ve che-” Yeah--
SRUTHI: TB.
BARRY: TB. Tuberculosis.
SRUTHI: Do you guys know anything about tuberculosis?
PJ: No.
SRUTHI: Yeah, it’s--
PJ: I know that it's like, an olden-times disease, but that also people get it in different parts of the world. And it's bad.
SRUTHI: It's so not olden times.
PJ: It's not?
SRUTHI: It's so current. Yeah. It's actually one of the world’s most deadly infectious diseases.
PJ: I know nothing about anything.
SRUTHI: 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 gonna die!"
PJ: That's was that--
ALEX: That was a thing?
SRUTHI: Yeah. This is common.
PJ: I think I've seen the cough-into-the-handkerchief-and-it's-blood, but I didn't know that was TB.
SRUTHI: It is TB. Yeah. And it turns out it can attack totally different parts of the body--like not just the lungs. It can also attack the kidneys, or, as in Barry’s case, the urinary system.
BARRY: 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 is indicative of tuberculosis. And immediately, he started me on a- a four-drug regimen. And the core drug is something called rifampicin.
SRUTHI: Mmhm.
BARRY: Within 48 hours, my fever stopped.
SRUTHI: So, the TB's gone.
PJ: That's great!
ALEX: And what about the need to urinate, is that also gone?
SRUTHI: No, that stays. And for some reason, Barry just gets worse.
He has this whole new avalanche of new symptoms. Bad ones. Like, he starts getting kidney stones, which are excruciating--all the time. Um, and his thyroid goes haywire, and, you know, because of that, he starts gaining a bunch of weight.
Uh, he’s getting this really weird thing with his eyes and his mouth--they're dry all the time. And his 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 ten 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, uh, two urologists, one nephrologist, one tropical medicine specialist, a chest physician, a psychiatrist, a dermatologist, one gastroenterologist, a hemotologist--at one point, he even sees a faith healer …
ALEX: Wow.
SRUTHI: Yeah, and all these doctors, they see that something is 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.
PJ: It’s crazy how much it’s just like guessing. Like, it’s just, “OK, like, let’s rearrange the furniture of your body and maybe this’ll do something. Or maybe not.”
SRUTHI: 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.
BARRY: The boy wonder who was there for everyone--I’ve always helped people. I was the counsel 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 I had groomed and--people wouldn’t take my call, and … people thought I want to borrow money or people thought I’m- I’m dead and gone. I’m just a waste of time. (pause) But I never gave up on life.
SRUTHI: But there must have been moments where you were frustrated?
BARRY: Uh, I sit and talk to myself--it’s a habit I’ve developed over many years. I do that every day, even now.
SRUTHI: (smile-sighs) What do you say?
BARRY: I have a near full-length mirror in my bedroom, and when I’m very very tired--
SRUTHI: Uh-huh.
BARRY: --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?”
SRUTHI: Now, Barry is in his late fifties. So he has spent half his life looking for a diagnosis. And then last year, he comes across, uh, a magazine article about CrowdMed, the website, CrowdMed. (laughs)
PJ: Which we are not advertising. But which we’re doing, I guess, our second story where CrowdMed is, like, a character in it, right?
SRUTHI: Right, and that's the website where if you have uh, uh ... a ... like a thing, a medical issue that you think has been incorrectly diagnosed, you go this website, you create a profile for yourself, um, you put in all your medical history, and then you essentially sign a bounty, uh, 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.
SRUTHI: I have your - your, um--your case in front of me. [page ruffling] It’s very large.
BARRY: Yeah. Because I wanted--unless it’s detailed, nobody would get the hang of it.
SRUTHI: So, a bunch of medical detectives take on Barry’s case. And there’s one … he calls himself Apteryx--and he’s a hotshot.
Like of all the medical detectives on the site, he has won the most bounties. $23,000 for just solving cases.
SRUTHI: Can you tell me a little bit about what you do, just, in your regular life? Uh, so, what are you a doctor of?
APTERYX: Well, I’m a - a … a doctor in internal medicine. And I’m partially retired--
SRUTHI: Mmhm.
APTERYX: --divid- dividing my time between a university hospital and a VA hospital.
SRUTHI: And I’m just curious, like, as doctor, it sounds as if you’ve been working in internal medicine for a long time.
APTERYX: Yes, I guess, uh, 40 years, about.
SRUTHI: Woah! (laugh) 40 years, OK. And um--
So Apteryx starts to wade through all these different tests Barry’s had, and right away one detail stands out to him.
APTERYX: The place I began was with this aluminum, or to him, alu-min-ium toxicity…
SRUTHI: Would that explain any of the symptoms that he had?
APTERYX: No, it wouldn’t explain what he had. What that results in is a progressive brain disease.
SRUTHI: Which Barry clearly does not show signs of.
APTERYX: The next thing that really attracted my attention was myasthenia because it did
explain an awful lot.
SRUTHI: So the thing that Apteryx is talking about here is myasthenia gravis. It’s this autoimmune disorder. And Apteryx 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.
APTERYX: Often a hidden cancer which may show itself, first of all, by muscular weakness.
SRUTHI: But...Apteryx then realizes that there’s no way Barry could have had that cancer for this many years.
And so Apteryx and I talked for an hour and a half … and the man is 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 months … as he tried to solve Barry’s case.
APTERYX: And 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.
SRUTHI: Why would I take that out?
APTERYX: Well, I--you might want to keep people on tenterhooks, until later.
SRUTHI: In the end, Apteryx told Barry, “Listen, you might have this cluster of autoimmune disorders 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.”
ALEX: After the break … We refuse to take “it’s complicated” for an answer.
BREAK
ALEX: So, Barry had just been given this diagnosis by a CrowdMed doctor, Apteryx, 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 cannot be cured. And we're not even 100-percent sure of that.”
SRUTHI: But, of course, it’s still possible CrowdMed is wrong. Like, what if there is one diagnosis, we just haven’t found it yet.
ALEX: Right.
SRUTHI: So, I reached out to the one person in the world who I think can crack this. Um, it's someone we've had on the show before, Dr. Lisa Sanders (laughs).
PJ: (laughs) Superhero! Was she like, “Ugh.”
SRUTHI: (laughs)
PJ: Did she have your number blocked?
ALEX: “Again?!”
SRUTHI: (laughs)
PJ: Um, so Dr. Lisa Sanders, of course, uh, she - she's a doctor at Yale. She teaches at Yale. She has a New York Times column called "Diagnosis." She was the inspiration for House. She's a 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 like weird hair growing all over my body, like--can you, Lisa Sanders, solve this?”
SRUTHI: Yeah.
PJ: She's like, "Yeah, you're a Yeti."
SRUTHI: (laughs).
SRUTHI: So I e-mailed 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 CrowdMed 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."
LISA: Having the wrong information turns out to be a really important problem in diagnosis.
SRUTHI: Mhmmm.
LISA: 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 the difference between a rifle and a shotgun. A rifle, you must aim it very precisely to get where you want to go. A shotgun, you just point it in the general direction and buckshot’s going to hit something.
SRUTHI: And 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.
LISA: 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. (Physical exam--)
SRUTHI: 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’ve caused permanent damage.
LISA: So you’ll remember that he had difficulty passing his urine.
SRUTHI: Mhmmm.
LISA: And I think that was probably from the TB that was in his urethra--
SRUTHI: Yeah.
LISA: --which can cause scarring.
SRUTHI: 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.
LISA: That would be--for me--the first signs of Sjögren's. But you don’t, there are some people who have Sjögren's who--
SRUTHI: So--my gosh, I have a dozen questions all at once. Uh--A, I don’t know anything about Sjögren's, am I saying it, Sjögren's?
LISA: Mhmmm.
SRUTHI: This part got pretty technical, but basically Sjögren's is an autoimmune disorder, affects the cells of tear glands, salivary glands, and has all these side effects that Lisa sees in Barry.
LISA: It seems clear that his diagnosis of Sjögren's could cover everything.
SRUTHI: Mhmmm.
LISA: It could cover his, uh, stone-forming tendencies. Um, 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 Sjögren's.
PJ: That’s great! Wait, does that also mean that Barry has to do another test?
SRUTHI: So I call him, and I was like, “Barry, I got Lisa Sanders, she's amazing.”
PJ: She was the inspiration for House.
SRUTHI: 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, all of this makes sense, but: I've had the test for Sjögren's.”
PJ: Oh.
SRUTHI: I’ve had it twice already.
PJ: Oh.
SRUTHI: One time in the late 2000s … and then just recently Apteryx, the detective at CrowdMed, had him take a more precise test.
And that test, too, was negative. Barry does not have Sjögren's.
PJ: Ahhh.
SRUTHI: 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 Sjögren'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."
LISA: I divide symptoms into … system-wide and localized.
SRUTHI: Right.
LISA: And I would say, you know, that peeing is localized, fatigue is system-wide.
SRUTHI: Mhmm.
LISA: And I am trying - trying to put them all into a pattern, it doesn't always work that way. You know, patients really long for this - this metaphor we use in medicine, Occam's razor.
SRUTHI: Yeah!
LISA: You know? William of Occam, the simplest, most elegant, single solution is often correct.
SRUTHI: Yeah.
LISA: That might be true in a system, that doesn’t have a lot of moving parts that are acting in independently.
SRUTHI: Yeah.
LISA: And in medicine we like to--we like to come up with a single solution. But ... I think people actually have--adhere to a different precept called Hickam's dictum. Which is, you know, from this guy John Hickam--
SRUTHI: Wait, is his name actually Hickam? It’s called Hickam’s dictum?
LISA: Well yes, it’s named after him.
SRUTHI: 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--
PJ: And was this like, in response to Occam?
SRUTHI: Yes.
PJ: Occam was like, “I have a razor,” and Hickam was like, “Well I have a dictum”?
SRUTHI: Well, can I tell you what his dictum is?
PJ: Yes.
SRUTHI: It is, "Patients can have as many diseases as they damn well please.”
ALEX: (laughs) That's amazing!
LISA: 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.
SRUTHI: Right, but I do think that the last time that we spoke that is what you were trying to do, right? Like it's not just the patient who wants this, it's also you.
LISA: Of course.
SRUTHI: And I … I think it just feels like a non-answer to say it’s Hickam’s dictum. You know, a part of me feels like, "Oh, medicine has given this promise of a single answer, and - and we should keep looking for it."
LISA: 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 are carefully constructed and chosen.
SRUTHI: Yeah.
LISA: You know, one of the things I have wanted to do in my column is to do an unsolved case.
SRUTHI: Really?
LISA: But the problem is 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?!" (laughs)
SRUTHI: Yeah.
LISA: 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.
SRUTHI: 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--
LISA: 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 say, "What do you think? And he says, “Well, I have actually taken care of several patients like that and I have never been able to find anything. So I don't know. I don't know what that is.”
SRUTHI: But maybe there is something there. Something that tests just can’t pick up. And it’s just one more miss for Occam’s razor.
LISA: 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. (laughs) You know, 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.
SRUTHI: It's funny ‘cause you’re so positive but what you are saying is kind of depressing (laughs) for me.
LISA: It's not depressing. We just got started. You can't think that we have been doing this forever. We just got started.
SRUTHI. Yeah.
LISA: Look, are you depressed that we haven't gotten to Mars yet?
SRUTHI: (laughs) A little bit. (pauses) Yeah.
LISA: (laughs)
[SKYPE DIALING SOUND]
SRUTHI: Hi Barry.
BARRY: Hi, I can’t see you.
SRUTHI 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 Hickam's dictum. But when I called him, he was in his office in Pune … and he said he wasn’t disappointed at all.
BARRY: No. No. No. I didn’t get my hopes up at all--I knew that if something else comes up it’ll 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 [indistinct] …
SRUTHI: Uh-huh.
BARRY: It’s so easy. But I refuse to fall in that basket.
SRUTHI: 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 the precise reason that he, say, gets tired in the middle of the day--he just put a bed in his office.
BARRY: Which is very unusual. Some days, if I have a meeting later, I close the door, take, 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 uh, 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 Hickam’s dictum. Instead, he’s got Barry’s Boards.
BARRY: Yes, I’ve got two full board of quotes written by me.
SRUTHI: Two massive whiteboards of inspirational quotes that he coined.
SRUTHI: Oh! Oh--can you read them to me?
BARRY: Just one--I’ll take the iPad inside. One second, okay? (reading) “Thoughts can be your creator or destroyer.”
SRUTHI: Uh-huh.
BARRY: “Yesterday was the past, today ... is the opportunity, tomorrow is the future.” (takes a breath) “Keep reinventing yourself.”
SRUTHI: Mhm.
BARRY: “Innovate or perish.” Uh, “Benchmark a trait you wish to emulate.”
SRUTHI: Uh huh. How do you benchmark a trait?
BARRY: “Benchmark a trait that you wish to emulate.” The trait I always wish to benchmark is positivity.
SRUTHI: OK, yes.
BARRY: “Reality--face it or let it shake you.”
SRUTHI: Mhmm.
BARRY: “Enjoy your today.” And, “Attitude determines altitude.” This is my favorite. “Every downturn is an excellent opportunity.” “Quality is a function of through-put, not output …” [fades out]
PJ: Sruthi Pinnamaneni--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.
CREDITS
Reply All is hosted by me, PJ Vogt and Alex Goldman. We’re produced by Sruthi Pinnamaneni, Phia Benin, Chloe Prasinos and Damiano Marchetti. Our executive producer is Tim Howard. We were edited by Peter Clowney. Production assistance from Thane Fay and Thom Cote. This is Thom's last week with us … We are very sad to see him go and very excited to see what he does next. We will miss you a lot Thom.
We were mixed by Rick Kwan. Huge thanks to Dr. Bobby Najari at the NYU School of Medicine and Dr. Alan Baer from the Sjögren's Syndrome Clinic at Johns Hopkins. Thanks also to Emily Kennedy, Jacqui 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 Buildings. Our website is replyall.limo. You can find more episodes at itunes.com/replyall, and Google Play, or wherever you personally decide to get podcasts.
Thanks for listening, we’ll see you next Wednesday.