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A Young Filmmaker Chronicles Her Struggle with Lyme Disease in The Quiet Epidemic

Writer's picture: hadleyhenriettehadleyhenriette

Updated: Jan 29

By Lindsay Keys


Be careful of ticks in the forest
Beware Ticks in the forest

Once seen as a seasonal threat hidden deep in New England’s woods, disease-carrying ticks are now active year-round, present in all 50 states, and even recently spotted in New York City parks. Yet beyond offering tick-prevention tips, our health agencies have failed to warn the public about what happens after a bite. The standard Lyme test is inaccurate, treatment isn’t always curative, and for those who remain sick, insurers refuse to cover long-term care. Most people remain uninformed about the realities of Lyme disease—until they’re directly impacted. 


As a young artist and filmmaker, I never expected to spend a decade on the frontlines of a controversial epidemic—but I wasn’t given a choice. Throughout my college years, my mom’s health steadily declined, and because doctors couldn’t explain why, she kept it hidden. They explored diagnoses like lupus and rheumatoid arthritis. Then, in the summer of 2013, she called me in tears: “I have Lyme disease,” she said. I couldn’t understand why she was so upset—I had recently been treated for a Lyme infection and felt better. I thought it could be cured with a simple antibiotic fix, but I would soon learn otherwise.



Filmmaker Lindsay keyes tells her Lyme story
Lindsay Keys

Within two years, at the age of 26, I developed symptoms resembling dementia, schizophrenia, and multiple sclerosis. My doctors had no answers. It was my mom, still fighting her own battle, who urged me to see a “Lyme-literate” specialist. These specialists often operate outside the system, with treatments not recognized by health agencies. Insurance doesn’t cover their care, and my mom exhausted her finances to survive. When my health plummeted, I resisted seeing a specialist—until it became my only lifeline. That decision ultimately saved me.


The Centers for Disease Control estimates nearly half a million Americans are infected with Lyme disease annually, with about 20% of those promptly treated remaining symptomatic. The actual number may be higher, as the standard Lyme test, now 30 years old, is as accurate as a coin toss. Research shows Lyme bacteria can survive antibiotics, yet there have been no treatment trials for co-infections transmitted by ticks. Insurance companies dismiss long-term care as “unproven,” leaving patients to fend for themselves.


Despite impacting more people annually than HIV and breast cancer combined, Lyme research receives a fraction of the funding. In this information vacuum, nonprofits fund groundbreaking Lyme studies that never reach clinics or medical schools. Meanwhile, the few doctors who dare treat chronically ill patients are targeted by medical boards and forbidden from accepting insurance. Instead of addressing the gaps in testing and treatment, doctors often tell severely ill patients—including children—that their illness is imaginary. Chronic Lyme remains one of the most controversial and misunderstood diagnoses in modern medicine, yet almost everyone knows someone who suffers from it.


Since releasing The Quiet Epidemic, the documentary I co-directed about Lyme disease, I’ve heard from countless people across the globe: parents grappling with their children’s suffering, families bankrupted by medical bills, and patients contemplating suicide after years of suffering. One family founded the LymeLight Foundation to step in where the system fails, granting $10 million in financial assistance to children and young adults who otherwise couldn’t afford care. “It’s one of the hardest things to comprehend—knowing your child’s life can be saved but [you] just don’t have the means to do it,” wrote one grant applicant. Meanwhile, in 2023, the seven largest insurers reported $70.7 billion in profits, up from $48 billion in 2013.


Even those with access to resources face barriers to diagnosis and treatment—celebrities included. Actor Christopher Meloni and artist Ally Hilfiger have publicly shared their struggles, helping bring attention to the crisis. Last year, they joined me and other Lyme advocates on Capitol Hill to share the devastating realities of tick bites and congenital Lyme, urging legislators to act. Senator Richard Blumenthal (D-CT) hosted an expert roundtable and a screening of The Quiet Epidemic, drawing bipartisan support from lawmakers like Representatives Jim McGovern (D-MA) and Chris Smith (R-NJ). Lyme disease doesn’t discriminate, yet our healthcare system remains unprepared to meet the challenge, forcing patients—regardless of status—to navigate systemic failures in diagnosis, treatment, and research funding.


As we enter 2025, the 50th anniversary of Lyme disease being named after a small town in Connecticut, the status quo remains unacceptable. For decades, health agencies and pharmaceutical companies have focused narrowly on a Lyme vaccine while neglecting diagnostics, treatment, and education. This failure has led to widespread misdiagnosis, suffering, and death. To heal from this crisis, we need a holistic approach and innovative solutions. 


The path forward starts with awareness and accountability. Legislators from both parties must hold a congressional hearing on Lyme and tick-borne disease—before we lose another 50 years and countless lives to this invisible epidemic.




About Lindsay Keys is an award-winning filmmaker, impact producer, and photographer who co-directed The Quiet Epidemic, a groundbreaking documentary that has become a catalyst in the global movement for Lyme disease advocacy. Lindsay’s struggle with Lyme disease began during her time at Wesleyan University, where years of misdiagnosis delayed her treatment and ultimately inspired her to shine a light on the systemic barriers facing Lyme patients. Her work has not only raised critical awareness but also influenced policy discussions in Congress, bringing attention to the rising prevalence of tick-borne illnesses amid climate change. Lindsay’s debut film has garnered acclaim at top festivals, including Hot Docs, DOCNYC, and the Hamptons International Film Festival. Through storytelling and advocacy, Lindsay is telling her lyme disease story and leading efforts to confront the failures of for-profit healthcare and secure recognition, funding, and better outcomes for Lyme patients worldwide.


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