Exploring the Possibility of Chronic Lyme Disease in a New Documentary
Alison Stewart: You are listening to All Of It on WNYC. I'm Alison Stewart. We all know about Lyme disease, but how many people are infected with it at any given year is hard to nail down. According to the CDC, somewhere between 30,000 to 500,000 Americans are infected every year with Lyme disease. A tick-borne illness that can affect bone joints and the brain, if left untreated. Yes, that is a wide range for several reasons, including passive reporting systems.
Once diagnosed, a patient is given antibiotics, and hopefully, that's the end of the story. Some infected with Lyme, struggle to recover and describe having chronic Lyme disease. If you search chronic Lyme disease online, you can easily find yourself on a Reddit thread with headlines like, "Why is Chronic Lyme a controversial diagnosis?" That story is covered in a new documentary called The Quiet Epidemic. In the film, we learned the CDC does not acknowledge the existence of chronic Lyme disease. Many experts agree, including the doctor, credited with discovering Lyme in the '70s.
Yet there was a community of doctors, scientists, and ordinary folks who say Lyme, chronic Lyme is very real. People like New York Times columnist, Ross Douthat, WNBA player, Elena Delle Donne, and Pulitzer Prize-nominated playwright, Sarah Ruhl, who is diagnosed with Lyme only after writing a memoir about her struggle with facial paralysis. That group includes our next guests as well.
Co-Directors, Winslow Crane-Murdoch, and Lindsay Keys have spent years working on their documentary, The Quiet Epidemic, which was a 2022 DOC NYC selection. There will be a special screening of the film tonight at the Jacob Burns Film Center in Pleasantville. I'm joined now by Winslow Crane-Murdoch. Hi, Winslow.
Winslow Crane-Murdoch: Hi, there. Thanks for having us.
Alison Stewart: Lindsay Keys. Hi, Lindsay.
Lindsay Keys: Hey there.
Alison Stewart: Listeners, we want you to join this conversation. Have you or any of your family members struggled with Lyme disease? What was your experience like with the medical community? How has Lyme affected your life? Our phone lines are open. 212-433-9692, 212-433-WNYC. Social media is @AllOfItWNYC. For people who have known anything about you and your film, know that you were diagnosed with Lyme disease in 2015. Lindsay, how did that diagnosis change your life? I know it's a broad question. [laughs]
Lindsay Keys: Well, the diagnosis changed my life in the sense that I finally found out what was happening to me after years of not knowing. That was bittersweet because it meant a really long road of expensive and painful therapies. It also meant that I was finally on the road to feeling better and not just living with these mysterious symptoms that had become extremely debilitating. It also meant that it led me to Winslow because at my first appointment, the nurse practitioner asked me, if I had a passion because they found that patients who had a purpose had better outcomes.
I thought that was curious and it ended up being true for me, for sure. In that moment, I had been dancing around this idea of making a documentary for years, but I couldn't find anybody who was willing to tackle this subject with me. I didn't see any other option at that point. I was back into a corner. It had become my whole life. I said, "I'm going to make a film about Lyme disease."
The nurse said, "Wow, we have another patient here who's your age, and he's a filmmaker with Lyme Disease. Do you want me to connect the two of you?" I wrote a note and she handed it to Winslow the next day.
Alison Stewart: Winslow, why did you know this was a project that you wanted to work on? When you really started to put your filmmaker hat, aside from doing your personal story and you put your filmmaker hat on, what did you see as your touchstone, the story you were going to tell?
Winslow Crane-Murdoch: Sure. I think that being diagnosed with Lyme disease is an incredibly disorienting experience. Certainly not with acute Lyme disease. If you just get antibiotics and you recover, which a lot of people do. This story is about the 10 to 20% of people that don't. I think for both Lindsay and I, we were very young. We were starting our careers and we ended up having to move home because we were so sick. We ended up in this doctor's office where they literally, I remember on my first appointment they gave me a handout that said, "Here's why Lyme disease is so controversial."
Having never gone through anything like this, having never been sick before, to end up, it's like the Twilight Zone music starts playing and you're like, what is happening? You're left having to choose who to trust and how to recover. At that point for both of us, but for me at that point, I had been to going to doctors for six, seven months. Getting passed around, not getting a diagnosis. I knew that it was really the only option I had at that point.
From a filmmaking perspective, we met the main characters in the film. Julia Bruzzese and her father and Enrico are just incredible people. They were both blessed by Pope Francis when he came to New York in 2015. They said on live television, "We have a clinical diagnosis of Lyme disease, but we're not sure yet." The doctors that we were seeing reached out to them and offered them free treatment in Albany, New York.
That's where Lindsay and I met Julia and Enrico, when we had first started thinking about the film. Their story was just so incredible. Their family's incredible. I think that was the first touchstone where we said, "Okay, this is a story that we can follow." They welcomed us in. They understood the power of media to change narratives right away, which is credit to them. They invited us in and we're all very close now and it's been an incredible experience, so that's how it all began.
Alison Stewart: People in this area might remember this story because Julia is from Brooklyn, who, she became ill and she was 11. We see through her story and her family's stories, you follow them, how she has been received by the medical community, how her family has been received by some of the medical community. I don't want to paint in a broad brush. Lindsay, when you think about Julia's journey, what does it reveal about the way people who have chronic Lyme disease have to navigate the medical system?
Lindsay Keys: Yes, it's just devastating that some of the sickest people alive today are afraid to go to the doctor's office. They're afraid to have to go defend themselves. Doctors often become combative when you mention Lyme disease because they've been taught that it doesn't exist. That patients who believe they have Lyme disease are hypochondriacs. To see Julia go through what she went through, she suffered actual abuse at the hands of some doctors. It's just so sad that people have to see something to believe it.
Lyme disease is an invisible illness in many cases. For Julia, she's lost her ability to walk, but even still Enrico's fighting with insurance companies because they're saying her wheelchair is medically unnecessary. There are just so many loopholes and hurdles that people have to navigate. Even a healthy person would struggle with that, let alone someone who's struggling physically, emotionally, financially. Eventually, this disease hits you on so many levels and the struggle to be believed is just one of the main issues that people with Lyme face.
Alison Stewart: Winslow, let me ask you that question. As I was researching and I went down a couple of Reddit thread rabbit holes. Why is the phrase chronic Lyme disease so controversial?
Winslow Crane-Murdoch: Yes. Well, I think there's a 45-year history there, which is what the film gets into [laughs] which is really complicated. It's why it took us so long to make the film, I think on the level of what Lindsay was just talking about as well. Our system really isn't set up for complexity and for things that we don't already have the answer to. When you have 15 minutes in a medical office, you're looking at one or two complaints, not there's doctors in the film that talk about patients with chronic Lyme disease having 30-something complaints.
This whole array of symptoms that's affecting all these various systems that is very hard to pin down and can look like so many other things. I think from a doctor perspective, that's one of the main reasons why it's dismissed is just because it is very, very complicated. I think we've seen something similar with long COVID, although long COVID, so many people got it at once, that now people are starting to recognize that this could be a problem.
Beyond that, I think that there was a push early on, when Lyme disease was discovered to really simplify the definition of what this disease could be. There was all sorts of reasons for that. There was the desire to create a test that was standardized. There was a desire to create a vaccine which had it been effective would've been great, but it was not and it was pulled off the market. There's a lot of forces that have led us to simplifying the nature and the definition of Lyme disease.
I think from the very beginning it's just been much broader than that. The definition has not allowed for that. Certainly, the insurance companies who then enforce that definition have not allowed for a broader range of treatment, which is one of the reasons why the disease became so controversial. From the very beginning, you had these doctors that were treating outside of these guidelines, who started being attacked by insurance companies for the ways in which they were treating.
I think that the reality is that this is a really complicated situation. It's, there's a lot of nuance to it. There's no black-and-white answers and there's no real good answers right now for patients. I think what we are asking with the film is, "How do we ask better questions in the science that we do? How do we actually have compassion for the people who are suffering?" The questions that we ask when we go to do the science are actually aimed at how do we better their outcomes.
I think for too long the fight has been how do we prove each other wrong instead of how do we make this better for patients? That is our hope, and we featured some scientists in the film who I think are really taking that on and moving in a direction that can actually be really beneficial for patients.
Alison Stewart: We'll talk about them in just a little bit, I'd love to take some calls. Let's talk to Carlena calling in from Red Hook. Hi, Carlena, thank you for calling in.
Carlena: Yes, and thank you for this program. I have chronic Lyme, and it probably started in 2014, but it wasn't diagnosed until around April, 2019. Now I'm struggling to get treatment. My message for New York City is that Medicaid doctors need a Lyme education. I've been to four separate clinics, it was finally diagnosed by a Medicaid doctor because he lives in Long Island, and he's had it and his family's had it making him Lyme-literate.
What I've experienced I have dubbed doctorsplaining, it's the gender neutral version of mansplaining or someone who just talks at me. I've done extensive research online, I've got family who've had Lyme, yada, yada, yada, and these doctors just like they do one blood test came back negative, "You don't have Lyme." There's a list of something [unintelligible 00:10:59] I read a study and posted in your Twitter feed. I don't know what, it was like 80 symptoms [unintelligible 00:11:04] except about seven. There's no pattern recognition, but they're not listening, and they don't admit their own ignorance and it's a problem.
Alison Stewart: Carlena, thank you for calling in. Let's talk to Brad from the Bronx. Hi, Brad. Thanks for calling All Of It.
Brad: Hi, thank you. First of all, guys, I saw your movie in the City a few weeks ago, and it's fantastic, and thank you, thank you, thank you. Excellent piece of work to get out there. I just can't thank you enough. My story is that I have a daughter who suffers from chronic Lyme, and watching Julia's struggle, Julia, the subject of the film, where there's so many parallels with my daughter in terms of finding the right doctor, finding the right treatment.
When her father pulled out that huge box of medications that don't work anymore, I so related with that, because what we've been through with my daughter and that affects her neurologically. We didn't know what was wrong, and you could imagine with a teenage daughter, what that's like. You don't know what's going on, and how it [unintelligible 00:12:07] her life in almost every aspect. What we do know is the pills that were supposed to be psychiatric had no effect or made them worse.
Finally, her mother was smart [unintelligible 00:12:19] to say, "Test her blood and give it a good test." Boom, there it was. A good test, not just your simple Quest or lab course, something that was really done by various labs, in the country. What I've learned about that is not only do insurance don't really cover that, but there's so few experts, and they all happen to live in the Northeast.
I mean, if you have Lyme in Florida, I don't know what you do. I think you just suffer, because the doctors that unfortunately that my daughter's seeing, none of them take insurance. None of them are on any kind of network, and the costs are exorbitant, but she's getting the help she needs. She's getting there, but it's just very, very slow. I guess, it's like the previous caller's question about Lyme literacy. What do you think it'll take for the rest of the country to get up to speed to say, "This is a problem, and this is something that ruins lives?"
Alison Stewart: Brad, thank you for calling in. Yes, you address that in the film. Let me reintroduce you folks, this is Winslow Crane-Murdoch and Lindsay Keys, Co-Director of the film The quiet epidemic, about Chronic Lyme disease. You address that in terms of the amount of the lack of funding for Chronic Lyme research. Lindsay, what about Brad's question, what do you think it is going to take for people to become doctors, scientists, average citizens become more Lyme literate?
Lindsay Keys: Yes, I think that it's very hard for doctors. In many cases, their hands are just tied. As we said, the insurance companies are very involved, and doctors do not want to risk their medical licenses by practicing "experimental unproven therapies." Doctors are in a very hard position here, and I understood the previous caller as well, the doctorsplaining, that's very real. Yet, I just don't know as a doctor how much they can step out without being penalized.
Something that we're doing with the film and with our impact campaign, as we're launching a letter writing campaign to Congress, because we actually think that there needs to be an intervention that's outside of the medical community. This debate has been going on for almost 50 years, and it doesn't seem like it's about to end anytime soon, sadly. Even with new research coming out, and new research funding, which is largely due to the work of of Lyme disease activists, by the way, that's relevant.
We really want to call on Congress for the oversight of our public health agencies. There have been no improvements in therapeutics or diagnostics in decades. What has the Lyme disease research funding been used for, if not to benefit patients? Now that this new research funding is coming in, we really need Congress to ensure that these dollars benefit patients and funds new scientists are at who are asking all the questions that we're asking.
How do we get better? How do we prevent other people from going through what we've gone through. Up until now, nearly all of the research funding has gone to the same small group of individuals who have just sustained this debate over whether or not chronic Lyme disease even exists. We should be way beyond that at this point, and so we really need a political intervention.
Alison Stewart: Winslow, Lindsay just meant the impact campaign and activist, so I feel like I do need to ask you this. You've both been diagnosed with Lyme disease, and you've been in this so long. How did you take into account your own perspective? How did you think about or talk to each other about, "Are we doing [unintelligible 00:15:53] bias here [crosstalk] in the way we're structuring certain parts of the story or are we engaging in confirmation bias at any point?
Winslow Crane-Murdoch: Yes, totally. Yes I think that we talked about that a lot. I think that we ultimately decided that the people with power, they have powerful voices. They've been able to tell their story and that side of the story is easily-- As you said, you go online, and you google this. All of that information is there, we felt like this was a story that hadn't been told, and so we of course, we're very careful about saying things that we believe to be true that have been verified by other journalists.
There's so much incredible work that's been done in this field that we were standing on the shoulders of many, many people who have already done this work. We wanted to be fair, but we wanted to be real about what we've seen and what our experiences were. We felt that given the power dynamic that exists right now, between those who have the power and those who don't, that it was okay for us to tell the story in the way that we did.
To give all of the voice to the people who are suffering right now. Certainly, I think people can question whether that was the right choice or not, but I think that, as I said that that information exists online. That's exactly what the whole debate is about. It was important to us to go through the history and to explain why it's so controversial, but to also show what the future might may be.
I think the future is doctors like Dr. Neil Spector at Duke University, who's in our film, who was such an incredible open minded doctor, who approached this in a way of, "How do we help people and how do we ask better questions." That, to me is what a true scientist does and he came in and he said, "I don't care what the answer is, I just want to find out what's going on." In a very short period of time, by taking that more open approach, he was able to make huge strides, and so my hope is that he inspires others to attack this in a similar way.
Alison Stewart: In the film, the CDC does not recognize chronic Lyme disease as a real illness. On one occasion, a CDC Doctor contacted Julia's family asked him to stop speaking on the issue. We reached out to the CDC for comment, we didn't get one back yet. If we get one back, we'll put it on our website with this segment. Have either of you heard from the CDC, since the film released?
Lindsay Keys: We have not heard from the CDC now. In fact, it's quite frustrated, because we as filmmakers, also as patients, and then many of the doctors and scientists who we've met, they want to have a dialogue with the CDC. They want to have a dialogue with the people who deny chronic Lyme disease, they have invited these people to public forums. They've invited them to debates, they've invited them to come to the table, and to review the science.
Oddly enough, it's the Lyme specialists who are called quacks, who are very open to debating the science and the people who are our public health officials who are responsible for keeping us safe, they're not interested in engaging on the matter. That's very frustrating.
Alison Stewart: Let's talk to Elle from Westchester. Hi, Elle. Thanks for calling All Of It.
Elle: Hi. I was diagnosed in the early '90s, but it took over a year because I was living in Manhattan. I went to Lenox Hill Hospital, I was on IV for like six months, I did home IV as well. [clears throat] That was over 30 years ago. I'm always tired and achy, and one of the things before I go, I just want to say that I never got the bullseye. A lot of people don't get that, so if they don't get that, they just totally write it off as not being Lyme.
Alison Stewart: Oh, thank you for calling in. She talked about the bullseye rash that happens sometimes after a tick bite. I don't want to sum up all of the phones in this way but the conversations like what we're getting from people, the reaction we're getting from people is that people are symptomatic after years after getting Lyme disease and they're frustrated with the medical establishment. That's what almost all of the calls are saying. Winslow, when you think about what you'd like this film to accomplish in the micro, what would you like it to accomplish and then the macro?
Winslow Crane-Murdoch: Sure. I think in the micro there was I mean, we cared a lot about our characters and the folks who were in it and we wanted them to see themselves represented and to feel good about about the ways in which they put themselves out there and what they're fighting for. I think that's been a really beautiful part of this process. Julia and Enrico have gotten to accompany us at many screenings and to see the way in which their story's inspiring people and so that's been a really beautiful part of it.
I think on the macro of course, we have hopes for big change and we would like to see the medical community reevaluate what's going on. As Lindsay said, there's also the push to have Congress perhaps step in and be part of that force. I think that we really need to just reapproach this and recognize that it's a more complicated conversation that we can get over the past history of trying to prove each other wrong about whether this is chronic or not. We know that something has happening to patients. Let's try to figure out what it is.
I'm hopeful that long COVID is a new model for the way in which we look at infectious disease and the way in which we look at the ways in which all of these different infectious diseases can cause these long-lasting multi-system problems that can look very strange and hard to diagnose. Maybe that will unlock some things for a lot of these chronic illnesses and chronic illness in general, is on the rise right now in the United States and so it's about time that we take this on, head-on.
Alison Stewart: The name of the film is The Quiet Epidemic. There's a screening tonight at the Jacob Burns Film Center at 7:00 PM. I've been speaking with its Co-Directors, Winslow Crane-Murdoch and Lindsay Keys. Thank you so much for sharing your film with us today.
Lindsay Keys: Thank you for having us.
Winslow Crane-Murdoch: Thanks so much.
Alison Stewart: There's more All of It on the way.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.