May 11, 2023
When Sarena Snider met Lindsay Keys at a Los Angeles event in 2015, she found a kindred spirit.
Snider, a documentary executive producer and director who's also the daughter of the late Philadelphia Flyers founder Ed Snider, was trying to figure out the source of a range of long-term health problems she'd been experiencing. Doctors thought her symptoms might be related to celiac disease, but treatment wasn't helping. "I was just exhausted," she said. She thought Lyme disease might be the culprit, but test results weren't definitive.
Keys, also a film director, was suffering from pain and exhaustion as well. She had gotten a definitive Lyme disease diagnosis, but her symptoms had gone on for years. And she was making a documentary about her experience.
Snider was intrigued, and became one of the project's earliest funders. The film, "The Quiet Epidemic," looks at Lyme disease "through an investigative lens," said Snider, who has a master's degree in investigative journalism from Columbia University. "I want to base whatever I do in facts and data," she said in an interview. "That's one of the reasons I was drawn to this film."
"The Quiet Epidemic," which starts streaming Tuesday, makes the case that Lyme disease can cause a wide range of symptoms that last long after initial treatment, and that the current test for Lyme is often inaccurate. Snider and Keys hope their documentary will spur calls for action and lead to more resources for scientists to study and understand the disease.
Chronic, persistent Lyme disease is a controversial topic, and it's one that the filmmakers say hasn't gotten a lot of attention. "The Quiet Epidemic" follows the journeys of two people trying to find answers: A teenager the filmmakers met at their Lyme clinic, and a cancer researcher who blames Lyme disease for his heart problems. The researcher, Neil Spector, died in 2020.
Data suggest that 476,000 people each year contract Lyme disease, according to the U.S. Centers for Disease Control and prevention. The CDC says most cases can be resolved with antibiotics within a few weeks. But the film says many people suffer debilitating effects for years.
Snider and Keys said they hope publicity around the "long COVID" phenomenon will help jump-start the conversation around long-term Lyme symptoms, which can be similar to those caused by chronic fatigue syndrome, fibromyalgia, multiple sclerosis and other disorders. It's sometimes called "the great imitator."
"We're seeing that the same illness can present itself very differently in different people," Keys said. "It's not one cause and one illness. There's a spectrum of manifestations that can stem from one infection."
"I think people understand that it's not always black and white, and there is a lot we don't know about how infectious disease works," Snider said.
Keys met her co-director on the film, Winslow Crane-Murdoch, almost eight years ago at a Lyme disease clinic in upstate New York. She had sought help after her mother, who recently had been diagnosed with Lyme disease herself, suggested Lyme disease might be responsible for her illness, which was so bad she had to leave New York City and move in with her mother. "I had had tick bites on Martha's Vineyard in 2013 and was treated," Keys said. "I thought I was cured, but it turns out I wasn't."
Keys said that when a nurse practitioner at the clinic told her that patients tended to do better if they had a purpose or a passion, "I knew that I needed to make a documentary about this."
As luck would have it, there was another documentary filmmaker getting treatment at the clinic. When she met Crane-Murdoch, "it wasn't even a question of, are we doing this? It was, when do we start?" she said. "We started immediately."
The film features researchers who are trying to understand how Lyme disease works and why it may persist in the body long after treatment. There are also interviews with investigative journalist Mary Beth Pfeiffer, who has suggested government officials ignored important data when setting policy and deciding budgets for Lyme disease research and treatment.
Scientists who spoke to the filmmakers say the "Western blot" test used to diagnose Lyme disease is outdated and inadequate. But because the test is the standard for the CDC, it's the one insurance companies use when determining whether to cover treatment.
Snider said her own experience shows the test is flawed. While bloodwork showed she was positive for some markers of Lyme disease, she said, the test wasn't definitive enough to meet CDC guidelines for diagnosis. "It was equivocal," she said. "They didn't have me as straight-up positive, but I still had some positive bands."
The film contends that some of the markers for Lyme disease were removed from the test because they interfered with a vaccine that was being developed. The vaccine was subsequently pulled from the market, and "for 20 years now, people have been misdiagnosed," Keys said. "It's a hard history, but it needs to be confronted," she added.
Snider said she wants people to know that researchers at "some of the top institutions in the world" — she cited Johns Hopkins University, Tulane University, and Columbia as examples — are working to figure out how the disease works. "There's research being poured into this," she said.
"Lyme disease is an epidemic," yet it's not always diagnosed, and even those with a Lyme disease diagnosis often don't know what to do, Snider said.
Snider's advice for anyone who thinks they might have Lyme disease is to find a "Lyme-literate" doctor — she suggested checking Lymedisease.org for resources — who can administer an alternative test that might give a clearer diagnosis. That might be a problem for some: Insurance companies generally don't cover alternative tests or treatment.
Pennsylvania is a "hot spot" for Lyme, said Snider, who grew up in Bryn Mawr. Yet it's a widespread problem spanning much of the country, according to CDC data.
"The Quiet Epidemic" starts streaming Tuesday on Apple TV and Amazon Prime Video. Screenings across the country also are planned, including one in Philadelphia, Snider said.