'The Quiet Epidemic' Shines a Light on Chronic Lyme Disease

There was a time when Lindsay Keys regularly got lost on her way home from work. Sitting on the subway in New York City, she couldn’t remember where she was coming from, where she was going, or even where she lived.

The explanation was simple, she said, but it took countless doctors ordering endless tests to figure it out.

Some of them, she would later learn, didn’t want her to.

When Keys was eventually diagnosed with Lyme disease — a bacterial infection spread to humans by infected black-legged ticks — she found herself in the middle of a dizzying and vicious debate over the illness. The medical community still stands divided, Keys said, from disagreeing on what Lyme disease is and how to treat it to whether to even test for it, which her primary care doctor refused to do.

“It was those moments, when there's this real confusion that you find yourself in, where you're like, ‘I don't feel well. Why, as a doctor, are you not interested in helping me figure this out? Why is Lyme this untouchable word and disease?’” Keys said. “So I think, for me, that was when I really wanted to understand why are there two sides of this? Why is there a debate over a disease?”

Of the nearly half a million annual cases of Lyme disease in the United States — which is more than HIV and breast cancer combined — about 10 to 20 percent of patients will stay sick after treatment. It is estimated that 2 million people suffer the after effects of Lyme disease and, yet, “chronic Lyme disease” is a rejected term in American medicine.

The question is, why?

Keys, in partnership with fellow filmmaker Winslow Crane-Murdoch, seek to answer that question in their new documentary, “The Quiet Epidemic,” which will screen on Sunday, October 16, at Regal UA East Hampton during the Hamptons International Film Festival, as part of the “Views from Long Island” program.

“I have lived in Sag Harbor for over 40 years and for half of that time I was not aware of ticks or Lyme disease,” producer Chris Hegedus said. “The village was less populated, so I rarely saw deer. Now, deer are roaming the streets and ticks are in our backyards carried by mice and even birds.”

While the first case cluster of Lyme disease patients was identified in Lyme, Connecticut, in 1975, there has been little progress for patients who have struggled with the chronic condition in the years since — an illness dismissed by factions of the medical community and insurance companies at large. And in the film, Keys and Crane-Murdoch dig into a paper trail of suppressed scientific research and buried documents that reveal why.

Of the new medical data and scientific discoveries that they share, most are still being denied or misinterpreted by the Infectious Diseases Society of America and, by extension, the Centers for Disease Control and Prevention, National Institutes of Health, and the U.S. Food and Drug Administration.

“There were surprises for sure around every turn, just around how a disease can become so political and so controversial,” Crane-Murdoch said, “and then a real sadness, too, at what that meant for patients who are stuck in the middle of that divide.”

For years, the filmmakers were caught there themselves — too ill to sustain their careers and navigate city life, and forced to move back home to upstate New York. There, by happenstance, they began seeing the same doctor for treatment.

At Keys’ first appointment, the nurse practitioner asked her if she had a passion, noting that patients who feel they have a purpose have better outcomes.

“I told her that I wanted to make a film about Lyme and she said, ‘Oh, we have another patient here who’s your age and he's a filmmaker and he also has Lyme, do you want me to connect the two of you?’” Keys recalled. “So I wrote a note and, because of HIPPA, I didn’t know who Winslow was, but I just said, ‘Hi, let’s make a documentary.’ It wasn’t even a question.”

The next day, the nurse handed it to Crane-Murdoch and he immediately called Keys.

“You know, seven years happened and here we are. I don’t think there was ever a moment where I was like, ‘Hey are we doing this?’” he said with a laugh. “It just kind of happened and it felt like it was meant to be in that way.”

About a month later, they met for the first time at a café to talk about making the ambitious film. They were both so sick that they were struggling to sit upright, Keys recalled, and she wondered how they would pull this off. But, somehow, she knew they would, she said.

This was not only a global issue, they agreed. It was personal.

“It was just such a strange experience to go from being healthy and young and thinking about your future and then to end up in this place where all of that came crashing down,” Crane-Murdoch said. “We found our way into the film because we were filmmakers and because it just seemed like the thing to do. We also weren’t working at the time, so it was just there for us. It was a moment for us to seize and we just ran with it.”

The team spent hundreds of hours reading scientific papers and every book they could find about Lyme disease, immersing themselves in local and national articles on the subject that hadn’t broken out into the world, Crane-Murdoch said. They met with advocates and experts, who walked them through the decades of history and controversy surrounding the illness, and identified characters who would be central to the storytelling.

“I think for us, as patients, we have seen other Lyme documentaries and it's really hard when you're sick to watch people suffer, especially in a film that's about your disease,” Keys said. “So, early on, we decided that we really wanted to feature people who felt empowered by their struggle, so they weren't just sick with Lyme, but they were finding ways to fight back for themselves and also advocate for others.”

At the heart of the film is 12-year-old Julia Bruzzese, a once active girl living in Brooklyn, who became sick with a mysterious illness that put her in a wheelchair. Desperate for answers, her father, Enrico, fought to get his daughter treatment from a medical community that didn’t believe she had Lyme — and even against public health officials who warned him against it.

“It was scary. When we first started filming with her, we didn't know what was going to happen with her. She was in very rough shape,” Keys said. “It was really hard to watch her struggle and the way that she was, and just be there with cameras, and yet, we also knew that the world needed to see this.”

The bulk of filming unfolded between 2016 and 2020, and the filmmakers followed the Bruzzeses the entire time, they explained. And, through that process, the family also watched as they struggled with Lyme disease on set. It built an inherent trust and mutual understanding, Keys said, and allowed them to break down some walls.

“A lot of Lyme patients have been told that they’re faking their illness and some of them have been dismissed not just by doctors, but by their own communities, even their families and friends,” Keys said. “So there’s a lot of broken trust with people who have gone through Lyme disease, and understandably so, and I think people who have gone through this are afraid of being seen as crazy, or as hypochondriacs.”

The film has validated countless audience members during its festival circuit, premiering in May in the “Special Presentations” category at the Hot Docs Festival in Toronto, where it was voted into the Audience Top 20, Hegedus said.

“The very first question, somebody put their hand up and said, ‘I finally feel recognized,’ and then they burst into tears and couldn’t really talk anymore. That has happened in all the screenings,” she said, adding, “People are yearning for knowledge about what they can do and how they can protect themselves.”

Along with the film’s release — it will screen in select theaters nationwide next year — the team is kick-starting a social impact campaign, including grassroots screenings, social media engagement and political advocacy, calling on the global medical, scientific and political communities to join forces.

“We're really hoping the film starts a movement, and there are a lot of people out there who care about this issue,” Keys said, noting that it will have an Oscar-qualifying run at IFC Center in New York starting December 1. “And I think if we can bring everyone together, then we'll finally be heard.”

Today, the filmmakers are still on their respective roads to recovery. “I’m not feeling great right now, to be completely honest,” Keys said, adding, “We are definitely a lot better than when we first met. There were times when I wasn't sure if we were going to survive the making of this film. Honestly, that's how sick we were.”

Their compulsion to make the film didn’t feel like a choice, they agreed. It felt like a calling, a responsibility to spread the word when no one else would — whether they were sick or not.

“I couldn't find anybody who was willing to make this film with me,” Keys said. “I definitely couldn't have made it without Winslow and I think it took both of us having it. We pushed each other and motivated each other just to keep going because there were so many times along the way where we would just feel tired and overwhelmed, and it was a hard process.

“We made a deal. We didn't speak it. We never even signed a contract,” she continued. “But there is an unspoken agreement of, like, ‘We're gonna do this.’ I can’t imagine it having happened any other way.”

“The Quiet Epidemic,” directed by Lindsay Keys and Winslow Crane-Murdoch, will screen on Sunday, October 16, at 11 a.m. at Regal UA East Hampton, as part of the 30th annual Hamptons International Film Festival, which runs from October 7 through October 16. For more information about the film and the full schedule, visit hamptonsfilmfest.org.