In an arc that parallels long COVID in many ways, chronic Lyme – or the persistence of debilitating symptoms following Lyme disease – is receiving fresh attention in a recent documentary.
“I’m Not Crazy, I’m Sick” follows the lives of three people suffering from chronic Lyme, their long-term struggles with the healthcare system to be diagnosed and treated, as well as the impacts on their families.
As the title suggests, the documentary elevates these patient stories in an attempt to patch together a compelling case that chronic Lyme – which is misunderstood, underdiagnosed and not easily treatable – is far more ubiquitous in the population than people might assume.
The documentary starts out by underscoring that Lyme disease – which was discovered due to an outbreak of arthritis in children and young adults in Lyme, Connecticut – is “one of the most complicated infectious diseases.”
The film then argues that Lyme disease has “reached epidemic levels,” citing a statistic from the Centers for Disease Control and Prevention that there are about 476,000 new cases per year just in the U.S.
However, only about 30,000 of those are reported to the CDC by state health departments.
Lyme disease results from an infection caused by the Borrelia burgdorferi bacteria, which is transmitted through tick bites. While the initial infection is curable through oral antibiotics – which typically takes about two to four weeks – there is no treatment for chronic Lyme, or what the CDC calls post-treatment Lyme disease syndrome (PTLDS).
Symptoms of PTLDS may include fatigue, depression, lower back pain, muscle aches, neck pain, joint pain and sleep issues – as well as neurological problems and psychiatric disorders.
The documentary delves into some of the biggest challenges PTLDS patients face – the first being diagnosis.
Because the bacteria is only in the bloodstream for a short period of time and at low levels, it’s difficult to accurately identify and diagnose PTLDS.
“Unfortunately, universal guidelines for diagnosing and treating PTLDS do not currently exist,” one 2021 paper published in Cureus said. “Consequently, physicians cannot adequately address concerns of possible PTLDS patients. Patients are left suffering and searching for answers, and their activities of daily living and quality of life are adversely impacted.”
“I’m Not Crazy, I’m Sick” intentionally aimed to show that an “adversely impacted” life is an understatement.
The PTLDS patients in the film have to grapple with their entire lives being upended, on top of having to fight to be recognized by a medical system that has little understanding of PTLDS.
Cue Ash Baker, a chronic Lyme patient in Baltimore, said she was first diagnosed with chronic fatigue syndrome, then fibromyalgia, rheumatoid arthritis, depression and anxiety.
“Nothing felt right. I was just out of it,” she said in the documentary.
The waters around understanding chronic Lyme are so muddled partially due to the nature of tick bites, which can cause co-infections that are also non-diagnosable.
Patients who are the most severely chronic often have multiple layers of infections beyond Lyme disease.
Those infections can trigger negative impacts on the brain, resulting in mental symptoms like depression, obsessiveness, depersonalization, suicide ideation, paranoia and even hallucinations.
The underlying theme was around how a lack of a diagnosis – and a lack of understanding around the symptoms – has left Lyme disease patients feeling “it’s in their head.”
“If I changed the way I thought, I wouldn’t be sick,” one patient in the film noted, referring to previous advice from doctors.
Another added that her prescribed therapy was “meditation and yoga,” rather than any real medical treatment to address the physical cause.
Currently, there are no FDA-approved drugs for chronic Lyme/PTLDS. In perhaps one of the most illuminating statements in the documentary, Dr. John Aucott, director of the Lyme Disease Clinical Research Center at Johns Hopkins, compared the different trajectories between HIV and Lyme disease, which both appeared in the late 70s and early 80s.
“My HIV patients were healthier than my Lyme patients, because there’s never been this formation of large collaborative academic-based networks,” Aucott said. “There’s never been big treatment-trial networks. There haven’t been treatment trials for years for Lyme disease. So while HIV took off and my patients with HIV got better and better, Lyme disease has kind of stagnated.”
The documentary’s website notes it hopes the film will serve as a “call to action to understand and support the millions worldwide” living with the disease.