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#75 Boy Wonder

2016-09-01

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!

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This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
This episode is brought to you by better for him a new podcast from eighty people. In each episode Francesca Ramsay talks to visionaries in business leaders about mistakes. They ve made how they work their way through them and came out better for it. Listen on Spotify wherever you get your pot Hades PDA with just a tiny bit of housekeeping before we start the show, so one we're trying some new on Friday, which is at lunch noon. Eastern time, shrewdly, is gonna, be doing a q and a fur gimlet members. If your member join us in the slack channel, you have questions about this episode, which has a story that you reported or other revile stray she's worked on like on inside. Come join us rang for like an hour, it'll be fun and weird, William
to it, if you're, not a member. Obviously you can sign up on gimlets webpage media dot com. It's fibre comment also our executive producer, TIM Howard, who, as has been mentioned, the show, is also a very talented musician place under the name so taro he just about to songs from his new album and there really really good. The albums called Yes, thirty. First, it's on his band camp, just sold harrowed up encamped at com I fares are now is I want to have a baby? Ok, they're Obi links, are those things in episode, description, no more points for anything the shop came out with reply off and he gave an email experiment and- and this phenomenon is in the house- you guys I'm back and this time another.
Not at all Miss Terry, oh for value, don't remember way back and episode. Forty two shrewdly brought us a great story called blind spot. It was about a person who is suffering from a problem. She couldn't quite pinpoint, no matter how many specialist she went to see the only person who could answer the question for her was the internet. Internet, the real blind spot with society yeah? So the thing that caught my attention about this particular story? It's about a guy who starts off having what's justice vary in, meaning health issue, but it then balloons into this. Other thing that is so Oh it's almost beyond medicine, and it's almost like someone as point a curse on it. So this patient, let's call him berry. Berry grew up in India and his story starts back and nineteen. Eighty six at this point he's living in Africa in low May, which is the capital Togo. He has a wife,
a one year old son, another baby on the way and he's a very successful business man, a group headquarters. What Europe is to fly in and out of Europe for five times a month at least a while. I was travelling all over the world to travel plus them. When I lived in LA me, my company used to chart a jets for me to travel because I was doing I was handling a mega big global trading portfolio, As was said, I mean that mean legislator would give me just phrase it as a battle. Whatever it touched, turn goal, everything is going well. For me, life bury was thirty years old, he said is healthy like to go on long walks and then one day he said, he'd just felt the psych fluttering it like this feeling of of an urge two p m
he will go to the bathroom, but the feeling it just wouldn't go away within a week. I realise that the kings and outright the plumbing is an outrage. My body and I was going to be very, very often an order, Peter of Diamond built up to forty forty five. Fifty times I just be beholding around about some. How did he do his job exactly so? He said that he would plan his entire day around the fact that he had to pay all the time you sell your basically just sort of mapping out the spaces. Is he arrives, say: ok, there's a bathroom, here's, my lady on the lives of so even if I was in a meeting with a banker I mean I had news that I have a problem: it listen, I might have to leave the median Gordon arrested. The move for I I sort of open up aboard my problem. There was no inhibition in my mind. There is nothing like that. People are gonna love. All that has never bothered me. I've
we'll be one for appearances, bury wasn't really freaking out just yet. He figured whatever has its small a doctor can help. So he starts with as local physician in Togo and the doctor says: oh, you haven't seedy, obviously bury says. No. I really I haven't had any affairs, I I I don't think I haven't lcd, but the doctors like Yale either way the doktor gives bury the antibiotics bury 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 symptom start showing up he's tired all time he starts getting this uneasy sinking feeling like the feeling you got right before you come down the flu and he'd get it at the same time every afternoon for Turkey a good, but we would have liked
point two degrees. I still remember that I'd start feeling feverish fever. Ninety nine point: two, exactly the exactly: do we ultimately a borderless exactly low grade fuel, so at this point, where and month, eighteen of these mysteries sometimes and bury 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 don't they no idea what's going on with him, so they put him through this battery of tests, everything from an HIV test to urological testers sisters, copies. And there's one has to bury remembers, especially clearly, it's a thing called, but you are dynamic study It was a huge room, maybe maybe thirty, if you'd better, if it filled with those in lieu in the middle of the room and is filled with all kinds of equipment and
He believes in blah blah blah blah, and I was surrounded by all this electronic gadgetry as sitting this reserve to say this is a new tested just come to design. My kind of problems and I was sitting- is pretty much data regarding studios. He gave advise and equipment. All around me exhibited a much worse and I remember, standard and being, in my view, didn't fluid. It was very, very poor, standing there being either just telling myself of God. Is this going to be my life back, sent and stuck me that is described to me. My life said they were trained experiment and try and find solutions in a sense he's describing like of weird hospital that Bruce Willis end up in the future and twelve monkeys like just sounds like such an
does not sound like any medical procedure have forbidden, yeah yeah, so let us playing its ninety. Ninety bury has been set for four years and has gotten so bad. That he's had to take time off work to figure out. What's going on, he moves backed India with his entire family and there he sees a doctor actually won, you'd happened to see way back when a symptoms first started, and he was surprised at all. For years ago, you met been used to living the problem, and he quickly than from history and her with a look at a few more problem. You have to be Certainly we live dubious daily tuberculosis. Did you guys know EMA, tuberculosis? now I know that it's like in olden Times disease, but then also people get in different parts of the world, and now, not only it's not our current yeah? It's.
One of the world's most deadly infectious disease. I know nothing about anything and its especially hominid India. So it's caused by a bug called Miko bacterium tuberculosis. I just remember the so clearly from like a bunch of bollywood movie. I would see as a kid the most here when you know she cough sent you a handkerchief and then she looks in there's blood like bright red blood and you're like oh, my god, she has teepee she's gonna die down, reserving yeah, I think of it. In the coffin to the handkerchief in its library, nosed e bay as tv 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 an berries case, the urinary system.
So on the spot we did a city scan and this hospital in Bombay and they found something on bulky. Seminal visit goes with this had indicated of tuberculosis and immediately start me on a for drug regimen and the core drug is something old refrain percent within forty eight hours with your stopped, so the teepees guy, that's great and went about the need to urinate. Is that also gone now? That's days, and for some reason, bury just gets worse. He has his whole avalanche of new symptoms. Bad ones like he starts getting kidney stones which are excruciatingly all the time and his thyroid goes haywire, and because of that, he starts gaining a bunch of weight. He's getting this really weird thing with his eyes and his mouth there dry all the time and as doctors are like what is going on, because this cannot be from two requests
small berries life turns into that of elaborate further. Next ten years he dressed starts to get every single test under the sun to try and fear. Out. What is this thing that he has just to give your taste in a single year? He goes to two urologist wonder frolic, just one tropical medicine specialist, a chest physician, psychiatrist, dermatologist, one gastroenteritis, suggest a hematology as at one point he even sees a faith healer while yeah Anne and all these doctors. They see that something's going on, but they dont know why, and one of the doctors recommends that he that bury have his paw state, essentially scooped out. You know because her saying like maybe this is
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! Well, you just ok boycotts, rearrange the furniture of your body, and maybe this old do something or maybe not yeah, and in this case it's a pretty major rearrangement and then as if this wasn't enough berry and his wife get divorced. He also makes a bad investment and loses all of his savings. The boy wonder: who is this? What everyone? I will people I was the council for people over help, people financially the boy wonder, was in amidst the boy wonder, became a middle aged men in amidst the very people who I would help piquant well groomed and people wouldn't dick my call and people today.
The bottom money or people. Don't I'm I'm dead and gone, I'm just a waste of time, but I never gave up, but there must have been mammoths. Are you are frustrated? I sit and talk to myself, it's a habit of developed or menu. I do that every day, even now,. What do you say? I will an full length mirror in my bedroom and very very, very tired as time very tired. I put a chair and dominate down and the old bad looking men in Berlin that what the hell do you think you're doing now bury isn't as late fifties. So he has spent half his life looking for a diagnosis and then last year he comes across a magazine article about crowd.
The website called mad. He was not advertising but which were doing. I guess our second story were crowded out is like a character in it right right and so that the website, where, if you have a plague, thing, a medical issue that you think has been incorrectly diagnosed, you go to the 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. You say I'll pay, five hundred dollars for the medical detective, who can solve this case and so bury submits his full medical history. I have your you're on your case in front of me. It's very large because I wondered unless he D did. Nobody would get the hang of it. So a bunch,
of medical detectives, take on berries case and there's one. He calls himself Apteryx and he's a hot shot like of all the medical detectives on this side, he has won the most bounties twenty three thousand dollars fur 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? I've? Well, I'm a doctor in internal medicine and partially retired, divided dividing my time between university house. It'll and of a 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 forty years about, while forty years or so Eric, starts to wade through all these different tasks. The berries had and right away. One detail stands out to him place. I began
with this aluminum or read to him: aluminium, toxicity with that. Explain any of the sometimes very low it wouldn't explain what he had to Turkey: the what the results is a progressive brain. Disease, which very clearly does not show signs of the next thing that really attracted attention? Was mass my stay because due to explain an awful lot, so the thing that apteryx talking about here is my senior Kravis. It's this autumn disorder and apteryx is thinking, you know it might cover some of berries symptoms like the weakness, the fatigue, the muscle issues, but then he starts wondering about This other disorder and neuro muscular one which could
Spain, those same symptoms and this one is sometimes accompanied by a kind of cancer oftener answer which may show itself first of all, by muscular weakness by Apteryx than realises that there's no way bury could have had this cancer for this, years, and so after its 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 a huge amount of thought that he put into each possible solution over the course of months, as he tried saw berries case you may want to take the side of your final vital part correspond to spoil are. As you know, we didn't ever really get to a specific final diagnosis for February a. Why would I take that out? Well, I knew my whom we want to keep it won't and hooks until later, in the end, Apteryx told bury listen, you might have this cluster of autonomy and disorders that are all
In our locking with each other, you possibly have four of them and if that's the case, we can treat the symptoms, but there is no cure and we can't give you this one simple solution. You ve been looking for. After the break, we refused to take its complicated
for an answer. This episode is brought to you by better for it a new podcast from HTTP hosted by Francesca Ramsay. We all make mistakes better, for it looks at how stakes- have shaped the lives and careers of visionaries and business leaders and helps them think differently about what their working for you'll hear from an entrepreneur who ventured out on his own, and so I went out. I took seven hundred dollars. I had in the bank, but my own pickup truck took some flyers business cards and later I had a business and, in each hour, rule breaker Tuzla While we all care about work in the first place, you are proud of the work the
Do you want to be able to tell your friends about it? You want to be able to feel like you're, making a different you'll hear how they work their way through their mistakes and came out better for listen on Spotify or wherever you get your podcasts. And now back to the shop, so very just been given this diagnosis by a crowd me doctor Apteryx, who basically says this lifetime suffering, we're not sure what caused it at all best we can say is its cluster auto immune diseases that can be cured and we're not even a hundred percent sure that by it, of course, it still possible that crowd met is wrong like what, if there is one diagnosis we just haven't, found it yet great 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 Doktor LISA Sandy. Super here she like The chevalier never lie so doktor releases enters. Of course she she's. Reality tv out. She has near times, column called diagnosis. She was the inspiration for house she's, Ojo, she's, Sherlock Holmes people come to her and her like I've been a million doctors. I can't figure out
Why there's like weird hair growing Oliver, my body like? Can you leases Anders solve this yet again, you're a yeti right. So I emailed me some about berry and I'm thinking you know hears what could be the most studied man. Medicine has ever known, and I sent her his crowd mad report and I felt like I was basically handing her like a medical detectives like a gift to a medical detective like hears 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 as you into the symptoms. You exam
the person and the new sank, what's likely and the new 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, I shot gun he has in the general direction and Buckshot gonna hit something and years as LISA is a problem with this whole pile of tests. Number wine, if you get this, made her son you're, going to get false positives and never to their very well might be this single clear answer that explain
everything, but it's just buried in all this trouble, 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 in a perfect world. She would start with a physical exam of Barry, but she counts and she's a good for it. So she said you know what I've looked through his information and here's. My guess so way back in nineteen. Eighty six, when Barry had that first fluttering sensation that constant urge to pee Wee's thinks that he already had TB and died
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 her and I think that was probably from the tv that was in his urethra yeah, which can cause scarring. So even after the tv was diagnosed and treated a couple years later, the scarring was still there and so bury continued to have these urinary issues and after that, a couple years later, he starts to develop these other symptoms. Like fatigue, try mouth dry eyes and we set things that could be the big clue that would be For me, the first signs of children's, but you don't there's some people have showed herself who am? I gotta, have a dozen questions all at once, a I don't know
anything about sugar is, am I saying right sure, grunts Sharon's, so this part got pretty technical, but basically all you need to know is show grins. Is auto immune disorder. It affects the cells of terror, glance, savary glands, and it has all the side effects that LISA sees in bury. It seems clear that his diagnosis of children's could cover everything they could cover his stone. Forming tendencies 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 children's, so that's great weight YAP. That also mean the various another test. So I call him and also very like I got Doktor LISA Sanders, she's amazing Unlikeness bridge for house. Yes, he I don't think he knows house, but anyway I tell him everything.
He said he's very his great follies, a gala. This makes sense, but I've had the test for children's I've. Had it twice already one time in the late to thousands and then just recently Apteryx, the detective crowd mad had him take a more precise test and that tests to was negative bury does not have shown. 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 hair looked into it, it's not show and she said: listen there may be
some one solution that she and everyone else's overlooking, but what, if there isn't what? If no clear satisfying diagnosis for, bury, really access and releases? As I know the that feels like a cop out question, but there's a good reason to ask it eyes divide symptoms into system wide and localised right, and I would say that you know, is localised fatigue is system wide and trying to put them all into a pattern. It doesn't always work. That way. You know patients really long for this. This man for we use in medicine outcomes razor yeah. You know why I'm of outcome that simplest most
get single solution is often correct. That might be true in a system, that doesn't have a lot of moving parts that are acting independently and in Edison. We liked her. We like to come up with a single solution, but I think people actually have adhere to a different precept called Hicks. Dictum which is enough from this guy John here, come way it s name is actually hiccup, as it's called here comes Dicta
we ass. He named after him. Size does blew my mind. I've never heard of this person. Okay, so I looked him up. He says doktor in the nineteen fifties, Duke University and and was is like in response to overcome. Yes, Aachen was like I've a razor, and Heaven was likewise dictum. Well, can I tell you what is dictum as yes, it is. Patients can have as many diseases as they damn. Well, please. It's amazing people have more than one thing outcomes razors this fake thing that we impose on patient to try to identify the cause of their chief concern right, but I do think that the law
can we spoke. That's why you were trying to do right like it's, not just the patient, who wants this? It's also you of course, and I I think it feels like a non answer to say it's hiccups dictum, you know up a part of me feels like oh medicine, has given this promise of a single answer in and we should keep looking for it listen has not given this promise of a single answer. The stories that are presented in the media, and on television Hell a single story. There carefully constructed and chosen yeah. You know one of the things I wanted to do. My column is TAT is to do an unsolved case. The problem is An unsolved case is a failure as a story. These are mystery stories. If you just said well I'll, never know who killed the guy. It will be like what
Yeah. You could do that once 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. Tom, you know up a part of me feels like oh medicine has given this promise of a single answer in and we should keep looking for it. Matters 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, ha. I don't see any swelling today and the patient said she says. Well, this is a good day. S awoke come back on a bad day. Let's measure, then I dont know
But you know I did come in and talk to a colleague and I stopped and said you know what do you think he says? Well, I've actually taken care of several patients like that I've never been able to find anything. So I dont know I don't know what that is but maybe there is something they are something that task just can't pick up and its. One more mass for outcomes, razor it. Oh people, think of medicine as ancient the desire to find a solution to make people better. Vat is ancient the ability to actually do that is brand new, And we're just at the beginning, I wouldn't even have penicillin until after world war, two
but my dsl, even though its it sounds terrible to say now, let's see if it gets better. That actually is probably the truest answer. We can make many times its money because you're so pause. What were you saying? It's kind of depressing for me, 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 at you depressed that we haven't gotten to Mars. Yet little that is hi by clay, I've gone to sell out. I wasn't exactly looking for a tear calling bury back, because you know I'd want to come back to him. What something that all when, like outcomes, razor, not heck, Comstock them. But when I called him he wasn't,
if, as in pony- and he said he wasn't disappointed at all, get the hopes of it all. I knew that something else comes up, it'll be the sill silver lining the cake, but I'm enjoying the cake eyes. It is it's very, very easy to get demotivated depressed and be angry at the world, an angry I gotta movements of it so easy, but I refuse to fall in that basket, and this was the surprising thing for me, like the way bury sees that he spent a huge chunk of his life. With one question: why 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 saved gets tired in the middle of the day he just put about in his office, which is very unusual
Sunday's is about a meeting later closer though they switch off. All the points put my mobile fallen silent then, taken up. This is by reality. And I'm not the unhappy with millions and when it's hard, like when berries confronted with the limits of what is body can do it turns out that he isn't turning to outcomes. Razor Higgins. Exam in sad he's got berries boards. Yes, I have been fully all you. Ve got your written by me to massive wipe words of inspirational quotes that he coined? Oh, oh, can you read them to re just while degree, I heard him say: ok, ok, that's gonna, be a creator or destroy yesterday was passed. Today is the opportunity tomorrow, as a future
keep reinventing yourself. You no wait, a parish benchmark a treat you wished to emulate. Ah, how do you been a crane benchmarking to do is to emulate the date? I always wished to benchmark his positivity. Ok, yes, the algae face it alerted shake you enjoy today and attitude determines altitude. Disobey downturn is an excellent, surely Penman any she's a producer for a pile, Doktor, LISA Sanders wrote a book called every patient tells a story. It's a call.
Action of medical mysteries go find. It reveals ass. It by me. He gave out announced the priest by treating human, any the abandoned, Clavering S, Damietta, Marconi, our executive users, ten howard you're, edited by Peter Honey production assistance from Saint Valentine Cutty, This is Tom last week with us, and we are very, very sad to see him go and very exciting to see what he does. Knacks we'll miss Yolanda you're makes pirate Kwan the Doktor Bobby majority it, and why you school of medicine and doktor. Bear from the Trojan syndrome clinic at Johns Hopkins thanks also to Kennedy, Jackie Halbert, I am proud that we have, a three day. We can you completely forgot about our theme. Music is by the mysterious
adviser cylinder. Add music by build buildings are website, is reply all got when you invite more. The show it itunes that conflict reply on Google play wherever you personally decide to get your party ass. Thanks for listening, will see you next Wednesday.
Transcript generated on 2020-02-13.