Pictured Above: In an effort to heal damage caused by Lyme disease, 15-year-old Julia Bruzzese receives an injection of experimental stem cells at a clinic in New Delhi, India.
East Enders have become accustomed to seeing Lyme disease as a distinctly local issue, due to the area’s high concentration of Lyme patients and its proximity to the place the disease was first documented in the mid-1970s.
But the U.S. Centers of Disease Control has recently acknowledged estimates that as many as 476,000 people in this country may get Lyme disease each year, across a broad swath of states in the Northeast, mid-Atlantic and upper Midwest.
Between 10 and 20 percent of people who have an acute case of Lyme disease remain sick after the standard post-tick-bite treatment of oral antibiotics, and while chronic Lyme disease has faced an uphill battle in getting attention from health regulators, many advocates for these patients are hoping the battle to document the legitimacy of long Covid will help draw more attention to the necessity of treating other chronic diseases.
Filmmakers Lindsay Keys and Winslow Crane-Murdoch know full well the debilitating multi-body-system consequences of chronic Lyme — they were introduced to each other seven years ago through a nurse practitioner at a clinic in upstate New York, where they were both at low points in their lives and had recently moved back in with their parents in the midst of long-term treatments for Lyme.
Their new film, “The Quiet Epidemic,” about the struggles with treating chronic Lyme disease, will be screened this Saturday, Dec. 3 at 11 a.m. at the Sag Harbor Cinema as part of the Hamptons Doc Fest’s six-day-long festival of the best in new documentary films.
The film follows two patients — a young girl from Brooklyn and her father and a Duke University researcher who needed a heart transplant after living with undiagnosed Lyme disease for years, as they search for years for answers to their long-term suffering, and the medical establishment’s unwillingness to take them seriously.
It also follows the work of an investigative journalist, Mary Beth Pfeiffer, who ended up at the center of the debate over treatment of Lyme at the Centers for Disease Control and the National Institutes of Health.
While a patient’s journey through Lyme can be an incredibly technical series of doctor’s appointments and medical advice, the filmmakers believe the rapport they developed with their subjects helps give the film a human touch.
They met Julia and her father, Enrico, at the same doctor’s office where they were being treated, after the clinic offered her treatment free of charge after hearing her story on the news.
“They went from a place where they were so alone and financially deeply vulnerable and thinking about having to sell their house, to their community raising enough money for them to survive,” said Ms. Keys. “In going through that process, they realized the power of media to change things for people. They realized what we were trying to do, and let us in in such a huge way and were vulnerable in such dark moments that enable the audience to really identify with them.”
They called Dr. Neil Spector, the researcher who had Lyme disease, in 2016, and were able to follow his work over the course of years.
“He was so brilliant, so passionate, and he had faith things could change for patients if better questions were asked,” said Ms. Keys. “He could see the scientists were not asking the right questions…. We were there for some big moments in his lab — he had some very big ideas that some people thought were a bit lofty. They were, but he ended up making real discoveries by daring to think outside the box.”
Even testing for Lyme disease is inadequate — while a test may be effective at diagnosing the disease just after a tick bite, the Lyme bacterium mutates after infection and after treatment, causing negative test results, while long-term symptoms can mimic a whole host of chronic diseases ranging from multiple sclerosis to ALS to fibromyalgia and Alzheimer’s disease.
“This subject is so dense, and there’s so much science… We really wanted to balance that with two stories that are really powerful and emotional,” said Mr. Crane-Murdoch. “You get to watch Julia grow up over the course of the film, and you wouldn’t get to do that unless you spent the time.”
Funding this project has been an uphill battle from the beginning, but the filmmakers said they were lucky to be introduced to people who had the means to help the film get off the ground, and who had first-hand experience with the ravages of chronic Lyme disease, including Phyllis and Scott Bedford, founders of the LymeLight Foundation, the Steven & Alexandra Cohen Foundation and Bay Area Lyme Foundation.
Mr. Crane-Murdoch said the CDC had recently given a name to chronic Lyme — “Post-Treatment Lyme Disease Syndrome,” but the agency has not yet begun to researched this condition.
“In many ways, it’s just lip service,” he said. “Even the name ‘post-treatment’ implies people no longer need treatment.”
“But there has been some positive change,” he added. “Research into long Covid is a really important paradigm shift in medicine, and brings us further into understanding of chronic diseases in general.”
Ms. Keys thanks the nurse practitioner who first put the two filmmakers in touch with one another, and who had asked her to find something she was passionate about while she was recovering.
“She said she found that patients who had a purpose had better outcomes and asked if I had a passion,” she said. “At that point I had been thinking about making a documentary about Lyme disease, but couldn’t find anyone willing to do it.”
“The film is reaching people who were previously skeptical,” said Ms. Keys. “Some referenced long Covid as opening their minds to receiving this story. I think this is being released at the perfect time because of what we’ve all gone through over the last two years. There’s more openness in the medical community and the general public.”
“The treatment definitely helped for me, but it wasn’t the end of the road. It was a necessary intervention, but it didn’t lead to a cure,” she added. “Every treatment is different for every person.”
“Antibiotics are really a blunt tool,” said Mr. Crane-Murdoch. “They’re the best thing we have now, but we need better options. That’s why research is so important. There are so many scientific questions that still need to be answered.
The film premiered this May at the Hot Docs Festival in Toronto, and has been on the schedules of 14 film festivals this fall, winning the Best Documentary Film award at the Macon Film Festival in Georgia.
First Run Features has acquired U.S. distribution rights to The Quiet Epidemic, which will also run at the IFC Center in New York City the week of December 3, qualifying it to be in the running for the Oscars. A nationwide release is being planned for 2023.
The filmmakers also have an active community engagement component to their work, encouraging people who see the film to contact lawmakers asking for funding for Lyme research, and they’re planning a worldwide series of community-based screenings of the film. More information on hosting a screening is at thequietepidemic.com.
Ms. Keys and Mr. Crane-Murdoch, along with the film’s producer, Chris Hegedus, will be on hand at the Hamptons Doc Fest for a Q&A in conjunction with the film screening.
The Hamptons Doc Fest, now in its 15th year, prides itself on offering films from across a wide spectrum of topics, from the arts to environmental issues, investigative reporting to biography and history.
“2022 celebrates our 15th year bringing you the best documentaries with the best story power you’ve come to expect from Hamptons Doc Fest,” says Jacqui Lofaro, founder and executive director of the festival. “Our December program is a rich trove of compelling films, and we know that our documentary devotees will love the 2022 anniversary line-up.”
This year’s festival will honor filmmaker Sam Pollard, whose work documenting the lives of Black icons and digging into stories that portray the hard-fought struggles of the Civil Rights Movement, with the Pennebaker Career Achievement Award on Saturday, Dec. 3 at 7 p.m. at Bay Street Theater in Sag Harbor.
Mr. Pollard’s newest film, “Lowndes County and the Road to Black Power,” which will be screened after the awards ceremony, is about the men and women who fought for the right to vote for Black residents of Lowndes County, Alabama in the 1960s, where 80 percent of the residents were Black and unregistered to vote. The film is co-directed by Geeta Gandbhir.
The festival also pays tribute to National Geographic Documentary Films, which has a long history of producing stunning films about the interaction of humans and nature all over the world.
The National Geographic tribute, on Friday, Dec. 2 at 7 p.m. at the Sag Harbor Cinema, includes a screening of “The Territory,” a look into the fight of the Indigenous Uru-eu-wau-wau people of the Brazilian Amazon over three years, as they risk their lives to battle against the encroaching deforestation caused by farmers and illegal settlers who burn and clear their protected native lands. The festival will also screen National Geographic’s “The Flag Makers” as part of its Shorts Program on Monday, Dec. 5 at Bay Street Theater at 3 p.m.
The week of programing includes a total of 25 films that organizers promise will be engaging and impactful, screening at both Bay Street Theater and the Sag Harbor Cinema.
Tickets and passes will be sold in advance online and by credit card only at festival tables in the lobbies of the venues — not at the venues’ box offices.
An all-access pass is $250, while tickets to the Opening Night Film, “Still Working 9 to 5” and the National Geographic Tribute are $25. Tickets to just the Pennebaker Career Achievement Award ceremony are $50. All other tickets are $15. Tickets and more information about all the films are available online at hamptonsdocfest.com. Masks are strongly recommended at both venues. —BHY