In the U.S., approximately 476,000 people are treated for Lyme disease each year, but of those, the number who develop chronic Lyme disease is unclear. And that’s because the public health system doesn’t recognize it as a medical condition.
It might sound silly to say that a condition that isn’t recognized isn’t counted, but it’s actually the subject of a decades-long fight captured in a new documentary. The Quiet Epidemic details the history of the debate between advocates searching for treatment for chronic Lyme disease, or CLD for short, and doctors denying that the condition exists.
With the use of anecdotes, government reports, medical research, and expert interviews, the film methodically makes the case that the decision to ignore CLD is actually baked into the healthcare system.
“In the 70s, 80s, and even the 90s, the doctors who discovered Lyme disease were writing about it in a way that was much more open-minded and acknowledging of the fact that it could be chronic,” said Winslow Crane-Murdoch, one of the directors of the film, in an interview with Outdoors.com.
Crane-Murdoch added that as time went on, those same doctors began “whittling down the definition of what (Lyme) disease is”, which makes it “very, very difficult to exist within the model of healthcare that we have right now, which is all about easy definitions and easy solutions.”
Today, public health officials at the National Institute of Health and Centers for Disease Control say there’s little scientific evidence linking Lyme disease to long-term problems, because the bacterial infection can be treated and cured with antibiotics. However, they also say Lyme can trigger an auto-immune response, causing symptoms that last after the infection is gone.
According to the film, though, some patients who report persistent issues exhaust all diagnostic possibilities and treatment options, which leads them to believe that Lyme disease is still in their system. In the end, they’re left to rely on experimental or sham treatments rarely covered by health insurance policies.
“As a patient, you’re left choosing who to trust,” Crane-Murdoch said. “In this field, because it’s all outside of the system, you have doctors who are on the cutting edge of medicine, and you have doctors who are taking advantage of patients.”
Crane-Murdoch and his co-director Lindsay Keys were both diagnosed with Lyme disease in 2015 and continued to experience symptoms, even after receiving treatment. While their ultimate goal is to correct the systemic issues, they created the film to raise awareness of CLD, as well as to inspire others to invest in and research the issue.
Keys explained that important questions still need answers, including the question of how to diagnose and treat CLD. “Those seem like obvious questions to ask, but for many years, they weren’t being asked by the researchers who were tasked with this epidemic,” she said. “So on the research side of things, it’s really important that we bring fresh perspectives and minds into this field.”