Lyme+ through the lens: Q&A with Lindsay Keys
A conversation between Lindsay Keys, director & producer of The Quiet Epidemic, & Eva, founder of LymeLnk
Lindsay Keys, director and producer of the award-winning The Quiet Epidemic, is, above all, a storyteller. I sat next to her at the Global Lyme Alliance gala in 2023 at the beginning of my Lyme advocacy journey. We were fast friends. I credit my immediate connection with Lindsay and the inspiration and mentorship to follow for the reason I decided to commit to Lyme+ community work full-time. I saw parts of myself in Lindsay, so much of what I hoped to become, and the type of legacy one dreams of leaving.
If you do one thing to understand Lyme & tick-borne disease, just watch The Quiet Epidemic. It perfectly distills this complex, wicked problem into a digestible story in just 2 hours. Saving you years of complicated research, I can promise this documentary is the most effective medium to learn. Take it from my first-hand experience: after 6 years of living with chronic Lyme+ and not getting through to my loved ones, I watched unanimous “aha!” moments as they watched this film. My loved ones had routinely asked, “How can we support you? What can we do to help?” Constantly trying to explain my invisible symptoms without answers or solutions was challenging enough. But it actually wasn’t the hardest part. The hardest part was the burden of systemic disbelief and lack of resources, compounding on top of daily pain, crushing any hope of getting better. How could I be hopeful when “world-class” health systems and doctors told me chronic Lyme+ wasn’t real? When there was no accurate diagnosis or cure, and limited treatment and insurance coverage? When the CDC website read: If you think it might be Lyme disease, it’s probably not. (Thankfully, the website has since been updated, but I’m not exaggerating…) No matter how hard my loved ones tried to empathize, they didn’t understand the weight of this systemic burden, that is, until they watched The Quiet Epidemic. It took me a year to get a majority of my closest friends and family to watch, which was frustrating after so many offers to help, but when they did, I saw lightbulbs go off one by one. I got long text messages, handwritten cards, and heartfelt phone calls apologizing for the lost time and lack of understanding, promising to be different and to be better. My community's acceptance and acknowledgment of Lyme+ is directly correlated to watching The Quiet Epidemic. That turning point was also at my rock bottom, and the beginning of founding LymeLnk. I can’t tell you what it was like to witness the power of one film — you’ll just have to watch it.
I teared up as I wrote the first paragraph on the impact of Lindsay’s friendship. And I teared up as I wrote the last about the impact of her film. This tells you everything you need to know about her.
Eva: I can vividly picture the scene of you telling me your Lyme story at the Global Lyme Alliance gala. Sudden-onset schizophrenia and not being able to get yourself home from work. At 26. What was that like?
Lindsay: After having been treated for acute Lyme disease in 2013, I was feeling okay for a little while and then all of the same symptoms slowly returned over the next two years—tingling and numbness in my hands, feet, and face, a stiff neck, and pain in my arms and hands. What I wasn’t prepared for was sudden-onset neuropsychiatric symptoms, which appeared in the summer of 2015. I could no longer read, was becoming lost on my way home from work in New York City, and experienced the presence of a constant force in my mind that was urging me to end my life. I had no history of mental illness and had no reference point for any of this. I remember after the first day of experiencing the neuropsych symptoms, thinking I couldn’t survive one more day living with those symptoms. On top of this, it felt like I was being electrocuted throughout my body and brain 24 hours a day. I had no idea what the path out was, or if I would ever come out of it. I didn’t know Lyme and tick-borne disease (Lyme+) could do this to a person, and because of faulty testing, I still didn’t know that’s what I had. I lived every day like that—navigating multiple sclerosis, dementia, and schizophrenia symptoms—for six months until I got on proper treatment for Lyme+. Within a few weeks, the neurospych started to subside, and within a few months, they had disappeared. It’s a miracle I survived that time, and sadly, many people with Lyme+ don’t. One of the main causes of death of Lyme+ patients is suicide. On top of the physical and mental torment, there’s the anguish of being disbelieved and abandoned by the medical system, and sometimes friends and family members.
Eva: Like many others in the community, you actually got your Lyme+ diagnosis from your mom. How did she help you find answers?
Lindsay: By the time I was acutely infected with Lyme+ in 2013, my mom’s health had been declining for years. Her doctors were exploring diagnoses like multiple sclerosis, lupus, carpal tunnel syndrome, rheumatoid arthritis, and a rare genetic disease for which there was no name. She suspected it was Lyme+, but her tests all came back negative, which is a common experience amongst those who are infected with tick-borne pathogens. She eventually was properly diagnosed with Lyme, babesia, bartonella, and other co-infections, and at this point, all of my symptoms had started to return post-treatment. She was insisting that I wasn’t cured, and was telling me about the IgeneX test, which was a more sensitive version of the standard two-tier test for Lyme disease that I had tested negative on for years. She told me about the ignorance around Lyme+ in mainstream medicine, and the inaccuracy of the test, but I didn’t know how to wrap my head around it—or perhaps it was more that I didn’t want to. I didn’t want to accept that I would have to chart a path that was similar to hers. I had witnessed the hell she went through to try to reclaim her health—the out-of-pocket medical bills that were burying her in medical debt, the harsh, unproven and open-ended treatments that wreaked havoc on her body, on top of what she was already going through from the illnesses themselves. And of course, I didn’t want to navigate the stigma and the disbelief from everyone around me. There was a time when I myself didn’t take my mom seriously—I thought she had been duped by a pseudoscientific community. I learned the hard way that she was right all along. If I had listened to her sooner and gotten tested when she initially suggested it, my life would have taken a different path. The sooner you receive proper treatment for Lyme and tick-borne diseases, the better your chances of healing.
Eva: Again, a common theme in the Lyme+ community, you serendipitously met your co-director, Winslow, at the doctor's office. Tell us about your creative partnership that led to The Quiet Epidemic.
Lindsay: At my first appointment with a Lyme-literate doctor, the nurse practitioner took an extensive medical history dating back to my childhood. During that intake, it became clear that I had been dealing with mysterious illnesses long before the acute Lyme+ infection in 2013. Although I had developed only one bullseye rash, when I was in high school, I had likely been infected multiple times throughout my life—as early as third grade, when doctors reluctantly diagnosed me with mono following months of unexplained illness. It was a lot to take in, in addition to the extreme physical and neuropsychological symptoms I was experiencing at the time. “How are you going to get through this?” she asked me. “Do you have a passion?” She said patients at their practice who had a purpose, tended to have better outcomes. I had long considered making a documentary about Lyme disease, on behalf of my mom’s illness, while in denial of my own. Suddenly, it was clear there was nowhere left for me to hide—I had to look into Lyme and tick-borne disease more deeply. I told her I was going to make a documentary about Lyme disease, and her face lit up—she told me they treated another person, who was recently diagnosed with Lyme disease, who was also a filmmaker. She asked if I wanted her to connect us, and I said yes—so I wrote a note and she handed it to my future co-director, Winslow, the very next day during an appointment. Shortly after that, Winslow ran into the Bruzzese family at the same clinic and started filming with Julia and Enrico, who became the main subjects of The Quiet Epidemic. The rest is history, as they say. Shortly after that, we met up and basically took over my mom’s house, researching, taking meetings and phone calls with journalists, doctors, researchers, and lawyers, and ultimately traveling around the northeast filming whatever we could with no resources. We were both living at home with our parents and unable to work. We made the most of the situation and eventually met more and more people in the Lyme+ community who believed in us enough to give us funding, which expanded the project beyond the northeast. We would take each round of funding as far as we could, ultimately needing to raise more, on repeat, until the film was finished and had toured the film festival circuit from 2022 to 2023. Our film team then spun out into a social impact team, and we launched a campaign that ran for three years and culminated in events on Capitol Hill, which we were thrilled to partner on with LymeLnk and other organizations like LymeLight Foundation, Global Lyme Alliance, Project Lyme, NatCapLyme, and others. The Quiet Epidemic was ultimately a 10-year journey—it’s been a lot to process, coming out on the other side.
Eva: Perhaps an impossible question… but what is the most important thing you want the audience to take away from the film?
Lindsay: Hard question, I’ll try to keep it brief. To pick three I’d say:
The inaccuracy of the diagnostic tests
The importance of family and friends as your support network, and the power of being believed
Don’t wait for perfect health to start living, or helping others
Eva: You committed 10 years to The Quiet Epidemic and undoubtedly learned a lot from. What were your biggest learnings? And, how are you taking that into your next chapter, continuing to serve the chronically ill community?
Lindsay: I met so many people and heard so many stories. Between my own experience and those I met along the way, I realized how much trauma is at the root of many chronic illnesses. The central nervous system plays a crucial role in the body. Trauma impacts the central nervous system physically, triggering inflammation and cell death, which of course, is related to your immune system. Trauma can also deregulate your nervous system. So there’s quite a powerful connection between trauma, your central nervous system, and your immune system.
One of my greatest passions is psychedelic medicine and shifting the stigma surrounding these healing compounds. More broadly, I am passionate about reimagining “mental” healthcare as a mind, body, and spirit approach—and one that addresses generational trauma. There’s research being done at Johns Hopkins with psilocybin and chronic Lyme. I look forward to more investment in other medicine, like Ketamine, to support Lyme and chronically ill patients. As of March 2025, I have begun working with InnerMost—a psychedelic therapy innovation center based in New York City. It's an honor to be working with a world-class team of clinicians and researchers that are not only dedicated to this mission, but also uniquely qualified to pave the way for future generations of therapists and redefine the field at large. Psychedelic therapy has helped me so much on my journey – I hope my work with InnerMost can help pave the way for other chronically ill and Lyme+ patients to explore this path as well.
