'The Quiet Epidemic': Harsh truths about ineffective Lyme disease testing, treatment revealed
To mark Lyme Disease Awareness Month, a new documentary The Quiet Epidemic (part of the Hot Docs 2022 festival) exposes harsh truths about the misrepresentation of the illness and barriers to treatment for Lyme disease, 47 years after it was discovered.
“In our healthcare system there's such a focus on mortality, [it] either kills you or it doesn't kill you, but what about the people who are just slowly unraveling in between?” filmmaker Lindsay Keys told Yahoo Canada. “There's the saying in the Lyme community, Lyme doesn't kill you it just makes you wish you were dead.”
“In some cases it does [kill people], but it's a very slow process, and just because people are dying slowly, it doesn't mean that they don't need help, too… People are looking perfectly healthy on the outside, but they're really suffering and this is what Lyme patients have been experiencing for decades. At what point do you just believe the person's experience rather than saying, ‘prove that you're ill.’”
The two filmmakers, Keys and Winslow Crane-Murdoch, first met through the clinic where they were both receiving medical attention for their respective Lyme diagnosis.
“I basically mentally, physically unraveled over the course of a couple of years…and the nurse practitioner asked if I had a passion and how I was going to get through this, because the treatment is so long and hard and uncertain, and in that moment I just surrendered to making a film about Lyme disease,” Keys said.
“She said, ‘wow we have another patient here who is your age and he's a filmmaker with Lyme. Do you want me to connect the two of you?’ And so I wrote a note to Winslow and she handed it to him the next day at his appointment.”
Crane-Murdoch, remembers being “passed through a long carousel of doctors” to try to figure out why he was sick in his early 20s.
“I just didn't think that Lyme could be that serious," he said. “So I was pretty surprised when they told me and then it was sort of this slow emergence into the strange world that is Lyme disease where, as a patient, you're sort of left choosing who to trust and what to do.”
“When Lindsay and I met, we were starting to come to terms with how strange the Lyme disease world was and this film was an effort on our part to try to understand it better, and to try to figure out answers for ourselves, and answers for the community.”
'Like Lyme disease was a bad word'
A core aspect of the story told in The Quiet Epidemic is through Julia Bruzzese and her father Enrico’s experience with Lyme disease. The filmmakers first saw Julia when she was blessed by Pope Francis on live television, unable to walk due to her illness at age 12.
Initial signs of Julia’s illness began when it started to take her an hour to get out of bed and get ready in the morning, then it transitioned to her legs going numb and being unable to see.
While her doctor was conducting tests to determine what was happening to Julia, Enrico started researching his daughter’s symptoms and Lyme disease continued to come up (Julia had been bitten by a tick when she was nine). When Enrico asked Julia’s doctor about it, she was very much against the notion that Lyme was a possibility.
“She went from being this wonderful supporting doctor, willing to try anything, to adamant no, impossible, this is not it,” Enrico says in the film. “It was almost like, as if we were using profanity, like Lyme disease was a bad word.”
That pushback transitioned to Julia’s doctor determining that the young girl had “conversion disorder,” defined as, “a mental condition in which a person has symptoms that cannot be explained by medical evaluation.” It was at that point that Enrico started recording conversations about Julia’s health.
“There's a line in the film where Enrico says, ‘how many people go through this and then go home and suffer in silence,’ and I think that's just a really important concept,” Lindsay Keys said. “When you're a patient and you go through something this traumatic, and then you're told that you're making it up, even if you know that you're not making it up, those little seeds take root.”
“Part of why this disease has been able to so quietly spread is the stigma and the shame keeps people in this place of questioning themselves and wondering, am I actually sick? Do I actually have chronic Lyme disease?”
After Julia was on TV with the Pope, resulting in significant media attention, the Bruzzese family realized they were in the middle of a massive controversy related to chronic Lyme disease.
In a recording played in The Quiet Epidemic we hear a phone call Enrico received from someone with the U.S. Centers for Disease Control and Prevention (CDC), warning him about spreading misinformation.
“I really am sorry about what’s going on with your family but I will say that there’s a lot of misinformation out there on the internet that’s very misleading and we base the treatment guideline on the scientific facts,” the individual from the CDC told Enrico. “Patients who have been truly infected for seven months would have a robust immune response.”
“Julia’s been sick for the past seven months, ignored by our medical society because of outdated guidelines that the CDC sets as requirements,” Enrico responded.
Lack of accurate testing
The test to determine if someone has Lyme disease is one of the core systemic issues that truly makes this “the quiet epidemic,” as outlined in the documentary.
In the 1990s, two companies were creating competing vaccines, but they were almost identical. One got stuck in lawsuits because of its side effects and was pulled from the market, leaving only the LYMErix vaccine. That vaccine was taken off the market in 2002 following a series of questions related to the number of “unknowns” about its side effects.
In the process of vaccine development, two key markers for the test were removed to spur an antibody response with the vaccine, so if someone was vaccinated, they would not test positive for Lyme disease. But those two markers were never restored on the test.
“When you take away the 31 and 34 bands, which are highlighted specific for Lyme, you’re taking away the possibility, for the people who have not had the vaccine, to help diagnose this disease,” Dr. Richard Horowitz, one of the world's top Lyme-treating specialists says in the documentary.
“We’ve had now a few decades worth of people who have been testing negative for Lyme disease as a result and until that test is changed, we're not going to have data that is accurate about how many people actually have Lyme,” the film's producer Daria Lombroso told Yahoo Canada.
In terms of the research on Lyme disease, as Mary Beth Pfeiffer, investigative journalist and author of “Lyme: The First Epidemic of Climate change” states, “the main question is whether Lyme disease is chronic, does it respond to the short courses of antibiotics that are recommended?”
The Infectious Diseases Society of America wrote the first guidelines for Lyme, claiming that it is not chronic, but then cracks started to emerge.
“Chronic Lyme disease is a rejected term in American medicine. The question is, why?” Pfeiffer says in The Quiet Epidemic.
“A core group of people who have essentially monopolized the field and people have all sorts of suspicions as to why that is," filmmaker Lindsay Keys said. "It could be that they're protecting their technologies that could be enormously profitable, it could also be their ego, how do you admit that you've been misleading the world for 40-plus years?”
“They're also protecting their grant funding as well… Funding needs to go to the right people and it needs to go to new thinking, and used to support new ways of thinking. We need outsiders to mediate this situation because right now, it's just stuck and it's been stuck for decades.”
COVID-19 bringing more attention to chronic illnesses
Now, amid the COVID-19 pandemic, there have been more conversations about chronic illness, including what’s been dubbed “long COVID” and possible lasting effects of the infection, in addition to the public being able to more easily see just how varied each person’s response to an infection can be.
“It's really hard to understand how these viruses and bacteria are influencing individuals, everyone's immune system’s different…and there's so much that we don't know about what causes long COVID, in the same way that there's so much we still don't know about what causes chronic Lyme disease,” Daria Lombroso said.
“I do think that this is sort of ushering in some ways, a new model, of how we think about disease and how we think about chronic illness,” Winslow Crane-Murdoch added. “I think that Lyme disease has suffered from the fact that…people get dismissed and then they go home and suffer in silence.”
“Because there has been such a large amount of people getting sick with long COVID at once, I think it's going to unlock the potential of making great strides in a number of chronic illnesses, which is hugely important.”
The Quiet Epidemic is screening as part of the Hot Docs 2022 festival on May 6, and available for online streaming for five days starting on May 3.