Note: the following transcript is a radio script and contains audio cues and other quirks (including imperfect grammar) of the medium. It may contain typos.
Taylor Quimby: Let's start with symptoms, OK? What were they?
Hannah McCarthy: I was completely exhausted. I could barely keep my eyes open. My legs felt like lead weights. Walking up the stairs was really hard. And I had a rash oval ish, circular ish rash. Just just reddish, reddish. Yeah.
Taylor Quimby: Sleep okay?
Hannah McCarthy: I wanted to sleep all the time. Yeah.
Taylor Quimby: How long?
Hannah McCarthy: Two weeks of that before I finally went to a clinic.
Taylor Quimby: What kind of clinic was it?
Hannah McCarthy: Convenient M.D., I want to say.
Taylor Quimby: So…
Hannah McCarthy: One of those minute clinic.
Taylor Quimby: What was their first guess?
Hannah McCarthy: Lyme disease.
[music starts]
Taylor Quimby: Right off the bat.
Hannah McCarthy: Yeah. Mm hmm. Got tested. Went to work. Few days later, I got a call. And I was told that I had Lyme disease. I was told that I had Lyme disease and that they were gonna put me on doctor cycling.
Taylor Quimby: So. So you go back in.
Hannah McCarthy: Yeah.
Taylor Quimby: And what did they tell you?
Hannah McCarthy: They I have a different doctor this time. I go back into the clinic. This is not me going to my primary care person. And I'm told that I might never have had Lyme to begin with.
Taylor Quimby: At the same clinic?
Hannah McCarthy: The same clinic. And I was told that the doctor who saw me before was a, quote, Lyme doctor.
Taylor Quimby: You're your air quoting. Like that's a bad thing to be a Lyme doctor.
Hannah McCarthy: Yeah. It wasn't explicitly stated to me that way, but it was a it was a younger, very fresh for his doctor, who is seeing the next time. And she kind of just short of rolled her eyes.
Taylor Quimby: What do they feel like?
Hannah McCarthy: I felt... I felt I don't have unsafe is the word. Just sort of upended. I was frustrated. I'd never seen a doctor imply mistrust in another doctor before. This whole experience made me feel crazy and like I'm a hypochondriac. Sure made me question myself a lot.
My name is Taylor Quimby. Hi. For those of us lucky enough to grow up healthy, the procedures of Western medicine can be oddly reassuring. Lab coats, clipboards that roll of crinkly paper on the exam room table, all part of a system that seems tidy and well understood. That, to some extent is an illusion.
Taylor Quimby: Would you be more or less likely to trust a doctor in the future?
Hannah McCarthy: I'm already less likely to tell you that much.
There are lots of diseases that leave us with more questions than answers. But when it comes to Lyme disease, the illusion seems especially thin, like the guts of the system are exposed.
[Montage]
Yvette Cozier: We don't know everything.
Chuck Raison: We don't know how it works.
Kevin Esvelt: There is no silver bullet.
Monica Embers: I don't think we have enough data to determine that.
John Auccot: It's okay to tell patients you don't know how.
Monica Gulia Nuss?: We have a question for every answer.
I call this place Lymeworld. That's where my colleague Hannah wound up when she was diagnosed with Lyme a couple of years ago. Scientists have spent whole careers in this void trying to fill the gaps.
Allen Steere: Lyme disease is a microcosm of what we see in the country.
Patients have stumbled in, unsure of who to trust or what to believe.
Wendy Murray: She literally had doctors saying, oh, just go play tennis. You're just bored or you're depressed because you're just a housewife.
And charlatans have stepped into the vacuum to to prey on the patients who are desperate for answers.
Chuck Raison: Anything that's too good to be true in medicine is too good to be true.
This is not a show about Lyme disease. This is a show about uncertainty. This is a show about the line that divides medicine and culture, about the spaces where people and pathogens collide. This is patient zero.
[theme swells and fades]
[Phin Singing “Tick Season”]
...
There’s something you should know about the name of this podcast. Patient Zero, which may be the only term from the science of epidemiology to have breached the pop culture divide, is a misnomer. It was lifted from a CDC document during the AIDS crisis. The zero was actually an “O”... meaning, the patient who lived “Outside of California”.
After the error was printed, the media glommed on, and the incident turned into a homophobic, complicated mess. A strange story, for another time.
The real phrase, used by scientists when identifying the first documented patient in an epidemiological investigation is “Index case”.
The term isn’t as sexy… but it’s important nonetheless. An index case can tell you all sorts of things about an epidemic. For this show, I hoped it might shed some light why Lyme Disease is so confusing.
So this Spring, I drove to a town in Connecticut, in search of a woman… A woman who was, in her own fashion, the index case that started it all. The Patient Zero of Lymeworld.
[SFX: The destination is on your left]
This is where she lived - in a blocky white Colonial home at the top of a long hill, less than a mile from the banks of the Connecticut River. Surrounded by sun-dappled forest. Messy yard. Dog out front.
Taylor: Let’s see if anybody’s home. [door closes] Hey! Sorry to bug you on a Sunday.
The owner, Glen Steinmacher, bought the house three or four years back. Didn’t really know her.
Glen: She, uh, yeah, so she had that one room right here was like her — it doesn’t look that anymore but — she had like cabinets of stuff… I guess that was her office. I don’t know what she did...
But she left a couple boxes he said, in the attic. Dropped them off at town hall. He tells me they’re probably still there.
Taylor in the Field: Says he dropped off a box, like a big bin of her stuff.
At town hall, the first selectman Steve Mattson tells me to go next door - to the library.
Steve Mattson: The archives are in the library...
It’s closed on Mondays, but if I go around and knock on the back window, the archivist there might let me in.
Taylor: I was just speaking with the first selectmen next door.
Librarian: I’m not really open today, but uh come on.
Taylor: I won’t be a bother.
Librarian: Well first of all, if you want to lean down and get that box.
Taylor: This one?
Libarian: Yeah, it’s stuff that came from her house...
And sure enough, there on the floor, wedged under a filing cabinet are two cardboard boxes.
One of them is filled with old papers… letters, journals, and photocopied articles.
Like it belonged to a spy… or a hoarder… or a conspiracy theorist.
And the other is filled with tapes. Cassette tapes. Maybe a hundred of them.
The library where I found this box - it’s in Lyme, Connecticut. The town where the disease found it s name.
And this is where I first heard her voice. Polly Murray. Patient Zero.
[Clips from recordings in the box]
Polly Murray: I’m testing this and seeing whether it works or not and I can see that the buzzer is sort of flickering so I may need to get another battery.
These tapes and papers. This is her collection. This is her legacy.
Lyme Radio: Fortunately it came back that I didn’t have it.
Lyme Radio: Well that’s one of the problems is that doctors don’t check for Lyme disease.
Lyme Radio: To make matters worse the disease is carried by a tick. How do you know that the tick is feeding on you? Look for a comma that moves.
Polly Murray: I felt that there was some… something there. But the medical profession said there was no such disease that exists that has the number of symptoms that you’re exhibiting.
[tape sfx cuts out music ends]
But we’re not ready to hear this story. Not just yet. First, we need a little training. First, we need to learn a little bit about epidemiology. And then we can learn about Polly.
[war clip]
In 1951, the US was fighting in the Korean War, and an imposing man named Dr. Alexander Langmuir was head of the epidemiology branch of what would later become the CDC… The Centers for Disease Control and Prevention
Langmuir clip: Biological warfare defense was a very hot issue… I was thoroughly was versed… and I argued if there was anything to do this… there was need for epidemiologists.
Epidemiology is a study of patterns and pathogens…how does disease move through society? Who gets infected? And how to stop an epidemic?
Eric Pevzner [33] - He made the argument that we need the cadre of physicians that were trained, that had the clinical knowledge, and had that additional epidemiological training, if we were attacked by a biological agent.
TQ: I love that word cadres. Something really serious about it.
Eric Pevzner: Well, we deal with serious things.
This is Captain Eric Pevzner. Today, he heads the Epidemic Intelligence Service - the cadre of scientists that was created in 1951 by Alexander Langmuir. The CDC's nickname for them? The disease detectives.
Eric Pevzner [32] - The bugs are the killers. And they’re trying to determine and find, just as a detective would try and find the person that’s committing the crime. We’re trying to find the cause.
[add space here]
Epidemiologists are first and foremost, investigators… Which is one reason why hospital dramas and police procedurals share a TV formula. Shows like a House MD - a character created to be a medical model of Sherlock Holmes.
[Clip from House MD]
Taylor Quimby [30] - Do you watch Bones or House MD or any of those shows? So as a kid one of m
y favorite shows was this show called Emergency… and I used to sneak in and watch shows that my parents would watch like St. Elsewhere and Hill Street Blues.
[Clip from St. Elsewhere: You know it’s funny. It seems to me the biggest danger you face isn’t disease or malpractice... it’s complacency.]
But one of the big things that differentiates epidemiology from detective work is the scale.
If identifying a disease is akin to catching a criminal - then epidemiologists are studying crime as a whole - or perhaps a better word would be terrorism…
Because disease is a matter of national security. An outbreak - or just the threat of an outbreak - can bring a city to its knees.
Before we dive into Lymeworld… Before we hear the story of Polly Murray, we’re going to hear about another epidemic. About what it’s like on the ground.
Lawrence Altman [52] - You have to bear in mind that health officials are notorious for downplaying the risks of an outbreak.
This is Dr. Lawrence Altman, an internist ...former Disease detective, and a longtime veteran of The New York Times, where he covered medicine and disease for decades. He’s such a legend, he was even referenced in an episode of The West Wing.
West Wing clip: You’ll want to take the first question from Lawrence Altman, the Times’ chief medical correspondent.
Why?
Because if you call on anyone else, the first question will be about reelection. Call on Altman, it’ll be a medical question and there’ll be two or three follow ups...]
As both a doctor, and a journalist, Dr. Altman has covered AIDS, Ebola, polio. He’s been through some of the most controversial, and most complicated outbreaks of disease in modern history. He knows the drill.
Lawrence Altman [58] - Well I think it was Midsummer. I was pretty hot. And when the first cases came were announced I had an element of healthy skepticism.
Philadelphia, July 1976. The country is celebrating 200 years since the signing of the Declaration of Independence. Dr. Altman is working for the New York Times, when he hears news about a group of veterans… hospitalized with high fevers and a pneumonia-like illness.
What do they all have in common?
They all attended a conference in a stately building called the Bellevue-Stratford Hotel.
On August 2nd, Dr. Altman got in a car in the middle of the night, and drove to a hotel in Harrisburg, Pennsylvania.
Lawrence Altman [62] - And all the time I was listening to the radio to keep me awake but it was impossible to escape the repetitious news accounts.
[news clips: There are more deaths in Pennsylvania from a disease still not identified…]
The conference at the Bellevue Stratford was massive. There had been 2,000 attendees. The CDC had recently warned of a new variety of swine flu that was spreading that summer. If these were the first cases of an especially virulent infectious disease, the implications could be enormous.
Imagine the millions of breaths that had been taken inside that hotel over two days… inhales, exhales, coughs, sneezes…
Hundreds of shared meals, thousands of business cards passed from person to person a
Tens of thousands of handshakes … and then two thousand people all returning home, scattering to different corners of the country.
If you’re a disease detective trying to figure out what’s going on, what happens next?
Lawrence Altman [29] - What happens next in a typical response. Health workers and epidemiologists and other scientists will launch a drill and they'll follow a mental if not a written checklist.
It’s the checklist of a disease detective: Who what where when why.
Lawrence Altman [30 montage] What are the patient's symptoms and what are the signs that the doctors can observe. And little things?
Lawrence Altman [31] - Did the patient have a rash.
Lawrence Altman [32] - And over the course of the illness have the symptoms and signs changed.
Lawrence Altman [33] - You're looking for. When did the health department learn about the first case and the subsequent case.
Lawrence Altman [34] - And who told the health officials so how did this come about.
Lawrence Altman [35] - And you'd be looking into how many other hospitals are involved in caring for such patients. And what's their geographical location.
Lawrence Altman [36] - Health workers may review the medical charts of each patient in the hospital and interview each patient.
Each interview, they ask every possible relevant question: Who did you meet? Where did you go? What did you eat? Who did you sleep with?
Epidemiologists are trying to outline the course of the illness from start to finish - and they’re tracing the contacts of every suspected case.
Each contact leads to another set of interviews, which leads to more contacts, which leads to more interviews.
Lawrence Altman [67] - l I remember going out and interviewing a patient.and his temperature had risen to one hundred seven point four degrees before he was put in a cooling blanket. So he was really sick.
[TV Clip: this effort or investigation will continue for a year or two years if… [fades down]]
Lawrence Altman [66] - Preliminary tests at that point is nobody knew what the cause was.
Remember all those of those places where something could’ve happened… the pool, the elevator, the banquet hall… or maybe there’s a clue somewhere else, at an afterparty or local restaurant….
Lawrence Altman [the hotel could be a red herring] - an epidemiologist will not overlook the possibility that meeting participants may not have stayed at the hotel. The hotel may be a red herring.
You may think about disease from a linear perspective. A person gets sick - is tested, diagnosed, and treated. That’s what so many of us experience in the doctor’s office. But the way disease spreads… the way it moves through and between networks of human beings… touches literally every aspect of our shared lives.
And that’s where epidemiologists exist. They’re not simply investigating pathogens - they’re investigating the connections between pathogens and people.
To illustrate my point, let me tell you about a basic tool that scientists use for this very purpose.
It’s called the epidemiological triangle.
[science motif?]
One point of the triangle is the Agent. This is the disease. This could be a bacteria, a fungus, or a virus.
The 2nd point on the triangle is the host. That’s us.
But it’s the third point of the triangle that I think makes everything so much more complicated.
[mux transition or fade]
That point of the triangle includes our landscapes...
...our proximity to animals...
...to insects.
It includes what we eat...
...what we drink...
...handshakes, kisses, hugs...
...Sex.
It can be our urban design...
...sewers...
...our wars...
...religion, race, and income inequality…
All of them play a role in deciding which pathogens connect with which people.
Which is why there is no single expert, no single discipline, when it comes to understanding an epidemic. Epidemiology is not simply a branch of science. It is a scientific process.
[MUSIC]
Back to Philadelphia in 1976…Where a mysterious illness had the city in a panic. The CDC sent 20 epidemiologists to help with the investigation - the biggest team of disease detectives in the agency’s history - and following behind, was Dr. Altman… A former epidemiologist, currently working for The New York Times.
Altman: It was a big story but I didn’t see it in those terms, I just saw it as here’s an outbreak that needs to be solved.
All in all, 221 veterans had gotten sick. 34 died.
Investigators had ruled out a bacterial infection, a virus… and had landed on an unlikely culprit: Nickel carbonyl poisoning.
[TV Clip about Nickel Carbonyl]
But it was another red herring. A screw-up. When testing the sick veterans for nickel poisoning, scientists had been collected samples using nickel scalpels. The nickel rubbed off, contaminating the samples and the positive tests were bogus. And the theory, like all the ones that came before, collapsed.
Lawrence Altman [83] - And that was an embarrassment to a lot of the CDC scientists and one of them went back into the lab in that period of time and took a second look at the specimens that he had looked at during the outbreak. And lo and behold this time he saw the infectious agent.
It was a bacteria - a type of pathogen that investigators had entirely ruled out as the possible cause.
It had formed in the air conditioning system of the Bellevue Stratford Hotel and it’s the pathogen that causes what we now call Legionairre’s Disease.
Lawrence Altman [84] - That's how the identification was made. It was a second look and believe it or not such second looks were not commonly and thoroughly done in outbreaks of undetermined origin or cause.
Lawrence Altman [71] - And what's important is this is the type of information scientific journals rarely publish. and the net effect of that is to create a false impression that investigations and discoveries are simpler than they really are.
What Dr. Altman is saying, is that history papers over just how hard this work really is. False starts don’t make it into scientific journals. Epidemiologists are trying to put a puzzle together in the dark, without ever having seen the picture on the box.
And when you go to the doctor for something that’s been figured out, you see the puzzle without any idea of what went into it.
So let’s turn on the light - and appreciate just how complex this really was. Consider our epidemiological triangle.
You’ve got the hosts - the legionnaires. The pathogen, a bacteria that causes respiratory and gastrointestinal problems … and the environment...
A hot spell in July… when air conditioning is on non-stop. A bacteria that likes hot, damp places - not unlike the confined cooling towers in the hotel’s AC units.
A city celebrating a pivotal moment in its history - a hotel, a busy place where lots of people were exposed to the bacteria in a short period of time.
And a time of intense scrutiny - where public fears put the largest ever group of epidemiologists under pressure to figure out what was making people sick.
Lawrence Altman [70] - And it's a reminder that scientists have to be humble. Health officials may not be able to solve all aspects of an outbreak or to answer all the questions that are raised.
[TV Clip: Are you coming to the conclusion now that perhaps there will never be an answer to Legionnaires disease?
That’s a possibility.]
Dr. Sensor : I think it humbles us and makes us realize there are things we just don’t know.
[music fades]
Humility. As we move forward, as we step into Lymeworld, we’ll be tempted to jump to conclusions. To play favorites. To identify the heroes and villains of this story. But the story of Legionnaires should teach us: it’s never that simple.
Sometimes, we have to stay humble.
When we come back, we’re going back in time… to 1975. To the beginning of Lymeworld as we know it, and an outbreak that’s still raising questions forty years later.
<<<<<>>>>>>
I’m standing here in Lyme Connecticut. At the top of Joshuatown Rd, where Polly Murray — who was, for our purposes, the patient zero of Lyme Disease — lived until just a few years ago, private, shy, and surrounded by forest.
For a time, Polly was celebrated, as a sort of canary in the coalmine. A woman who fought the inertia of status quo medicine, and sounded the alarm about Lyme Disease. as the years pass, I can see that her story is being forgotten. in a lot of online stories and retellings, she’s simply described as a concerned mother.
But to those that know her story, it’s fair to say that “concerned” would be an understatement. Polly was tenacious.
Alex Murray [2] - She’s a very serious person.
Wendy Murray - Boom the minute she’s up she is highly industrious...
Toddy Murray [17] - Kind of a perfectionist and I think that kind of rubbed off on all of us too…
Wendy Murray - ...and these are all good qualities and yet she couldn’t relax.
Joshuatown Rd… this is where Polly and and her ex-husband Gil raised four children.
They’ve scattered now - but I was able to speak with three of them. Alex, nicknamed Sandy, high school soccer star, and the eldest of the four:
Alex Murray: [Nickname Sandy] - Sandy is a proper nickname or diminutive for Alexander.
Todd, the baby and today the most soft-spoken of the Murray family.
Todd Murray [12] - He had a bad temper as a kid, as did I.
And finally, Wendy.
Wendy Murray [Named after Peter Pan] - I by the way was named Wendy after Peter Pan, and the dog was Nanny.
It was the early ‘70s. Lyme Connecticut was small town New England paradise… a mix of farms and barns and upper crust homes. And back then, Polly especially looked like a member of Connecticut nobility…
Wendy Murray - Polly looks - silver jewelry and that beautiful white hair, It looked fabulous.
She was an artist, trained at Yale... as straightforward and deliberate as the subjects she captured... Still life paintings, portraits, landscapes.
Sometimes, when her kids were playing, she would shout freeze! And then she would sketch them where they stood… But outside the bounds of her meticulously gardened backyard, her children were anything but still.
Wendy Murray - Joshuatown rd - We happened to live like a mile from the CT river.
Todd Murray [7] - ...across a brook, and through a patch of cedar trees with moss.
Alex Murray [Constant injuries] - My brother would skin his knuckles. One time I got a bad cut on my rear end.
Todd Murray [10] - We could actually play cowboys and indians with real cows.
Wendy Murray - So it was just a wonderful childhood of playing outdoors.
Sandy: You know… there was only so much trouble you could get in playing in the woods.
[music]
Taylor Quimby: Do you remember becoming aware of the fact that your family had health issues that might seem above and beyond what might seem normal?
Sandy: The normal part was what, at the time, was beyond my comprehension.
…
As early as 1964, Polly Murray was chronicling her family’s health.
Wendy Murray [The calendar] - Because she’s such an organized tenacious personality she would write everything down.
Rashes and colds, itchy eyes, sore throats, diarrhea. Every symptom, no matter how commonplace, and every doctor’s visit, no matter how perfunctory, wound up on Polly’s calendar.
That’s how I know that on May 20th of 1964, baby Todd was prescribed penicillin for an ear infection - that’s how I know that a few days later, he stopped eating - was hospitalized for dehydration, and that the whole family was hit with a gastrointestinal bug not too much later.
But most of the time, Polly was documenting her own health problems.
Todd Murray [22] - You know she had joint aches and muscle aches…
Wendy Murray - Bruising easily… pin-prick rashes… sun sensitivity…
Toddy Murray - … and kind of arthritis in her fingers…
Wendy Murray - Trouble sleeping. Coping… you know the word coping was used as frequently as “the” or “and” it seemed. My mom was so beset by so much.
Polly was convinced that her various symptoms… which came and went on an almost daily basis… were part of some larger pattern. That they were all connected somehow.
Todd Murray [50] - I mean she was a layperson, but she had a good aptitude for science.
Before art school she spent a summer in Copenhagen, working as an assistant for the World Health Organization Tuberculosis Research Office. She wasn’t a medical professional, but she was medically minded - driven to read research journals, and medical literature.
But for doctors who are used to being the authority in the examination room... that aptitude can come off as meddling.
Wendy Murray [Mom asked too many questions] - Reading the dynamic between my mom and Dr. Irving and… he was so personable, and respectful, but at the same time I remember that little girl feeling of like, my mom is being a pain in the butt here. She’s too serious. She’s asking too many questions. And so kind of being embarrassed by it.
Over several years, she saw a grab-bag of experts, who examined her for lupus, they tested her for psoriasis, and for rheumatoid arthritis, thyroid problems and hypoglycemia.
Some doctors were supportive, some were dismissive… but nobody had any answers.
Wendy Murray [Doctors didn’t believe Polly] - She literally had doctors saying just go play tennis. You’re just bored or your depressed because you’re just a housewife. And she didn’t make this stuff up.
One doctor told her her symptoms were psychosomatic and she needed a psychotherapist. So Polly saw one - and the psychotherapist told her that she was depressed… because she had a chronic illness that nobody could identify.
Wendy Murray [No support changes you] - Something happens to the personality when you’re chronically ill and not getting support from the medical community. You know it changes your whole demeanor. And it was just very striking it brought back memories of my mom, kind of embattled.
If things had ended here, Polly Murray may have been forever labeled as an overly anxious, neurotic worrier. As the H-word. A hypochondriac. And despite her convictions, she would later write that she had doubts. Maybe she was crazy.
But then, in the mid-1970s, new symptoms appeared - ones that couldn’t be dismissed as a figment of her imagination… Because she was not the one experiencing them.
Wendy Murray [Sickies vs wellies] - You know the first thing I remember, it was the night of my 8th grade graduation and as I said it was kind of like long white dresses and the boys were in suits, and just very charming… but it was a big deal graduation. And Todd that day got an excruciating headache. I mean… like out of the blue.
Todd Murray [25] - We were in the sunshine having class… and I noticed this bullseye rash appear.
[26] - We went to the doctor who… didn’t really know what it was. I think he described it as Erythema Circinatum, which really just means red ring.
[27] - Couple days later or maybe a week later, I got severe muscle aches and fever and developed severe crushing, throbbing headaches
[28 ]- I developed a swollen knee. And I remember at that time, Alex also had swollen knees.
Alex Murray [Symptoms 3] - I all of a sudden developed Very bad water on the knee.
[29] - We were at a river swimming, my Dad and I, and he turned around and he had a giant bullseye rash on his upper back. That following winter he also developed swollen knees.
Alex Murray - The Primary treatment was to drain the fluid out of the knee.
Todd Murray [30] - He went to a doctor and was told it was a spider bite.
Four out of the six members of the Murray family had symptoms… Only Wendy, and their other son David seemed to be fine.
Wendy Murray [Impact 3] - One of us said, yeah we’re the wellies. David and I we’re escaping most of it, and they’re the sickies. And so you know I remember when that happened I remember thinking this kid just can’t catch a break.
Taylor Quimby: So how old were you at this point?
Todd Murray: I was about 11 or 12. Taking up 16 aspirin a day. And I remember I actually got toxic from it and had ringing in my ears at one point and had to have the dose decreased.
Throughout all of it, Polly Murray was doing what she had always done… documenting doctor’s visits, scribbling symptoms in journals, squeezing notes onto her calendars.
Polly included a lot of this information in a book, called The Widening Circle, that she wrote years later. I asked her daughter Wendy to read some of the entries.
[Wendy reading from The Widening Circle]
It’s not a pleasant read - obscene almost, in that anonymous way that medical descriptions can be. Where we’re forced to think explicitly about the human body and to objectify human beings in the context of their frailty.
[More Wendy]
And frankly, the sheer amount of it all is somewhat incredible — as in not credible… they sound like the words of an obsessive hypochondriac.
But then, Todd got something that had eluded Polly for years: a diagnosis.
Wendy Murray [reading] - Tuesday September 30th, Todd Saw Dr. Espensen who concluded that Todd had Juvenile Rheumatoid arthritis and should be seen by a rheumatologist.
Juvenile Rheumatoid Arthritis. Or JRA.
Todd Murray [37 JRA] - I’m not sure to what extent they know what causes it, but it’s an autoimmune disease where your body attacks the lining of your joints and causes pain and swelling.
Taylor Quimby [38] - Did that diagnosis mean anything to you at that point?
Todd Murray: Well… I think I actually didn’t believe the diagnosis.
[music]
Polly was skeptical too. In between the doctor’s visits and trips to the library, Polly had been speaking to neighbors and friends. And she was hearing stories about other kids with swollen joints, fevers and rashes. There was Frank Roche’s daughter, who lived just one street away from Joshuatown Rd.
Frank Roche: The first time it was swelling in the knees, the size of soccer balls. And they treated her for a while for JRA cause they didn’t know what they were doing.
And then in Old Lyme, just a few miles south, there was a little girl in a wheelchair. Same diagnosis: Juvenile Rheumatoid Arthritis. A 14-year old soccer player: JRA. Captain Richard Wright’s daughter, Christian, in East Haddam: JRA. His neighbor’s child: JRA.
Frank Roche: There were several kids I dunno how many exactly, on the local school bus for the elementary school bus, and they all came down with mysterious illnesses of some swelling and rashes... [fades down]
JRA affects about 1 in 10,000 children. Two cases in Lyme would have been unusual - and Polly was seeing three or four cases on the same street.
On October 6th, 1975, Polly wrote a letter to her family doctor. She outlines all of the issues her family has been having, the tests and specialists… and in a patrician manner, that almost masks the frustration, she asks: doesn't it seem likely that these problems are connected?
Polly had always asked a lot of questions, and she came to appointments with ideas that doctors didn’t always like. But she generally took what they said seriously.
She took what was prescribed, she went to whichever specialist they sent her to.
But a week after writing the letter, she had had enough. Something was happening… and nobody was paying it any attention. Here’s Wendy again, reading from Polly’s book, The Widening Circle.
Wendy Murray [reading from The Widening Circle]: Wednesday, October 15th. Now Todd’s other knee was swollen. I had to call the State Health Department. I couldn’t wait any longer. I knew that I was dealing with something that was on the one hand very real in terms of symptoms, but on the other hand didn’t exist in the medical literature. And that I would therefore would have to be very collected and convincing to whoever was on the other end of the phone at the health department. I told Gil that the call that I was about to make might be an important one in the long run. And then I spread out my notes before me on the desk and dialed the number.
[phone ringing]
Polly doesn’t remember who she spoke with. She was too nervous. But she explained what she could. And then she hung up the phone, and drove Todd to yet another doctor’s appointment.
While she was there… while the doctor stuck a syringe and extracted fluid from Todd’s swollen knee, she told him what she had done... that she had called the State Health Department.
Todd Murray [33] - He pretty much belittled her, and told her she needed to stop persisting with these ridiculous ideas. And thinking that their might be some new disease. He had taken a sample of fluid from my knee and he gave us to to bring to the local lab. And I remember we drove to the lab and she was in tears because of how she had been treated by him.
[music fades]
In October of 1975, Epidemic Intelligence Officer David Snydman was working at the Connecticut State Health Department. He had only been assigned there a few months earlier. He was 29 years old.
David Snydman: My wife and I were actually on a two or three week vacation in Europe… and it was around the time of the world series.
David Snydman [06] - And there were two notes on the desk from two different mothers… essentially asking whether arthritis could be infectious.
[theme music]
David Snydman [07] - I don’t know how long they had sat there… but no-one else had sort of picked up on it in the office so they sort of left it to me.
On the next episode of Patient Zero… the investigation begins.
Steere: You publish it. You put it out there. And people react. Some of it holds up and some of it does not. That is how progress is made.
<<<<<<>>>>>>>
Patient Zero is produced, and reported by me, Taylor Quimby.
Projects like this one take time, and resources. If you like what you hear, consider making a $20 donation at patientzeropodcast dot org. You’ll get early access to future episodes, ad-free, and some bonus episodes as well.
Editing help for this episode came from Annie Ropeik, Jason Moon, Cori Princell, Justine Paradis, Jimmy Gutierrez, Nick Capodice, Jacqui Helbert, Todd Bookman.
Sam Evans-Brown is Patient Zero’s senior Producer.
Erika Janik is Executive Producer.
Fact-checking for this episode by Amy Tardiff.
Graphics by Sara Plourde.
Maureen McMurray is Director of Content.
Special Thanks to Carolyn Bacdayan, at the Lyme public library… and to Dr. Jonathan Edlow. If you want to read a very thorough retelling of the early investigation into Lyme Disease, check out his book Bullseye: Unraveling the Medical Mystery of Lyme Disease. We’ve learned a lot since then in terms of the science, but the play by play account is the best one I’ve read thus far.
If you’ve got questions, concerns, or comments about Patient Zero - we want to hear from you. Email us at patientzero@nhpr.org.
Patient Zero’s Theme was composed and performed by Ty Gibbons.
Additional music from Blue Dot Sessions, and Disasterpiece.
Credit music by Deerhoof.
Patient Zero is a production of New Hampshire Public Radio.