Lyme Disease — The Quiet Epidemic

For decades, Lyme disease has been a source of suffering, confusion and heated debate in the medical community. A documentary — The Quiet Epidemic1 — sheds light on this complex and often misunderstood illness, following the stories of patients fighting for proper diagnosis and treatment in the face of skepticism and conflicting medical opinions.

Lyme disease, transmitted by the bite of infected ticks, has become increasingly prevalent in the U.S. As investigative reporter Mary Beth Pfeiffer explains in the documentary:2

“We’re now up to almost 500,000 cases of Lyme disease in America every year. There are more cases of Lyme disease than HIV and breast cancer combined. Of those 500,000, about 10% to 20% will stay sick for some period of time. We now believe that something on the order of 2 million people suffer the aftereffects of Lyme disease in the United States.”

Despite its prevalence, Lyme disease remains a controversial topic in medicine. The documentary explores why this “quiet epidemic” has been so divisive and why many patients struggle to receive proper care. You can view the official trailer in the video above.

A Disease of Many Faces

One of the key challenges in diagnosing and treating Lyme disease is its ability to mimic other conditions. Dr. Richard Horowitz, a Lyme disease specialist featured in the film, explains:3

“Lyme disease may be the great masquerader of the 1980s and 90s, in that it can do almost anything … The most common misdiagnoses that I see in my practice are people who’ve been diagnosed with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, lupus, multiple sclerosis is a big one, patients who have dementia, Alzheimer’s. Lyme can imitate all of these different diseases.”

This chameleon-like nature of Lyme disease often leads to misdiagnosis and delayed treatment, allowing the infection to progress and potentially causing long-term damage.

The documentary follows the story of Julia Bruzzese, a once-vibrant young girl from Brooklyn, New York, whose life was suddenly upended by mysterious and debilitating symptoms. Julia’s father recounts the harrowing experience:4

“The school called me, and they said something is seriously wrong with Julia, you need to get here right away. And when I got there, I found Julia in the nurse’s office, and she was just lifeless across two chairs. I went to go nudge Julia, and I’m, ‘Julia, Julia, what’s the matter? What happened?’ She’s like, ‘Dad, I can’t see.’ She said, ‘I can’t feel my arms and I can’t feel my legs.'”

Despite extensive testing, doctors were initially unable to determine the cause of Julia’s symptoms. It wasn’t until her father’s relentless research that Lyme disease emerged as a possible explanation.

The Battle for Diagnosis and Understanding

Julia’s case highlights a common experience for many Lyme disease patients — the struggle to obtain an accurate diagnosis. Conventional tests for Lyme disease are unreliable, particularly in later stages of the illness. As the documentary reveals, this has led to a contentious debate within the medical community about how to properly diagnose and treat the disease.

The late Dr. Neil Spector, a Duke University cancer researcher and Lyme disease patient himself, emphasized the need for better diagnostic tools:5

“With all these unknowns, there is one known and that’s that people are falling through the cracks of the medical system. The burden should not be on people who are sick to prove that they’re sick. It should be on us, as medical professionals, to better understand what’s going on and to help them.”

At the heart of the Lyme disease debate is the question of whether the infection can persist after standard antibiotic treatment. The documentary explores the divide between two camps in the medical community:

Those who believe Lyme disease is easily treatable with short courses of antibiotics and rarely, if ever, becomes chronic.
Those who argue that Lyme can persist and cause ongoing symptoms even after initial treatment, requiring longer-term or alternative therapies.

This disagreement has led to fierce battles over treatment guidelines, insurance coverage and the very legitimacy of patients’ ongoing symptoms. The film highlights research that challenges the notion that Lyme disease is always easily curable.6 Dr. Ying Zhang, a microbiologist with Johns Hopkins University, describes a phenomenon observed in Borrelia burgdorferi, the bacteria that causes Lyme disease:7

“We’re dealing with a very unique situation here. The current Lyme antibiotic does not completely eradicate Borrelia bacteria. We found this dandelion phenomenon. The mower is equivalent to the antibiotics, that chopped off the top part. But because the root, the possessor, is still there, they can grow back. You need drugs targeting both parts in order to more effectively cure this persistent form of the disease.”

This research suggests that standard antibiotic treatments do not always eradicate the infection, explaining why some patients continue to experience symptoms long after initial treatment.

The Human Cost of Controversy

The documentary powerfully illustrates the devastating impact that medical skepticism can have on patients’ lives. Julia’s father had to quit his job to care for his daughter full-time, while the family faced financial strain and emotional turmoil.

Spector’s story serves as another stark example. Despite being a prominent cancer researcher, he struggled for years to receive a proper diagnosis and nearly died from Lyme-induced heart failure before finally receiving a heart transplant. These stories underscore the urgent need for better understanding and recognition of Lyme disease’s diverse manifestations and long-term effects.

The film also showcases promising developments in Lyme disease research, including revolutionary imaging techniques that could definitively show the presence of Borrelia bacteria in patients’ bodies. Upon seeing early results of this research, Spector exclaimed, “This is it. This is like proof of concept. We can actually do this.”8 He goes on to explain the impact:9

“If you could image this in the body, I think that removes all doubt. I’m not sure there’s a controversy anymore. That, to me, is pretty definitive evidence that you’ve got the bacteria, and you need to be treated for an active infection.”

Such advancements could dramatically change the landscape of Lyme disease diagnosis and treatment, potentially ending years of debate and bringing relief to countless suffering patients.

The Role of Patients in Advancing Understanding

The documentary highlights how patients and their advocates have played a crucial role in pushing for more research and recognition of Lyme disease’s complexities. Julia’s story, which gained widespread media attention after a chance encounter with Pope Francis, helped bring national attention to the issue. Horowitz emphasizes the importance of listening to patients:10

“When I was looking for answers for Lyme patients, I discovered that there were multiple reasons why people stayed ill. It was like going to a doctor’s office with 16 nails in your foot, saying you have foot pain, and the doctor pulls out one nail and says come back in a month. You still have 15 nails in your foot, you’re going to have pain.”

This patient-centered approach has led to a more nuanced understanding of Lyme disease and its co-infections, challenging the one-size-fits-all treatment model. The film also makes a compelling case for a fundamental shift in how the medical community approaches Lyme disease. Spector argued:11

“Good science will trump bad behavior. And when that change happens, hopefully, it won’t just be at the level of clinical practice, but it’ll be public policy, it’ll be insurance coverage, and all the other injustices that have really been perpetuated will sort of fall by the wayside.”

This call for change extends beyond just Lyme disease, touching on broader issues of how the medical establishment deals with complex, chronic illnesses that don’t fit neatly into existing paradigms.

Looking to the Future

As the documentary concludes, it leaves viewers with a sense of cautious optimism. While significant challenges remain in the diagnosis and treatment of Lyme disease, the tide appears to be turning. Increased awareness, new research and the tireless efforts of patients and advocates are slowly but surely changing the conversation around this devastating illness.

Julia, now a passionate advocate for Lyme disease awareness, encapsulates this spirit of determination: “For the people suffering right now, let us be their voice. You can’t give up. Because if it was you, your family, you can’t just turn people away and say there’s no hope.”12

The film serves as a powerful reminder of the human cost of medical controversies and the vital importance of continued research and open-minded inquiry. As Lyme disease continues to affect more people each year, the need for consensus, improved diagnostic tools and effective treatments becomes ever more urgent.

In the end, the documentary paints a picture of Lyme disease not just as a medical issue, but as a human one — a story of suffering, resilience and the ongoing struggle for understanding and recognition in the face of a complex and often misunderstood illness.

Tips for Lyme Disease Prevention and Treatment

Given the challenges in diagnosing and treating Lyme disease, prioritizing prevention is important. Here are some key strategies to reduce your risk of tick exposure:

Steer clear of areas where ticks thrive, such as piles of leaves near trees. When hiking, stick to the center of trails and avoid contact with tall grass or vegetation along path edges. Refrain from sitting on fallen logs or tree stumps, and be especially cautious in areas with known rat populations.
Opt for light-colored clothing that covers your arms and legs fully. This makes it easier to spot ticks on your clothes.
For added protection, especially in wooded areas, tuck your pants into your socks and your shirt into your pants. Wear closed-toe shoes and a hat.
Remember that ticks are extremely small. To prevent bites, conduct a thorough tick check immediately upon returning indoors. Continue these checks for several days after potential exposure. Don’t forget to inspect your bedding during this period as well. The goal is to locate and remove ticks before they have a chance to bite, so be diligent in your post-exposure checks.

If you discover a tick has latched onto you, it’s very important to remove it properly and, if possible, to keep it alive. Use tweezers or a tick removal tool to grasp the tick as close to your skin as you can. Then, pull it straight out — do not squeeze it or twist it.13

Once removed, make sure you save the tick so it can be tested for the presence of pathogenic organisms. Put the tick into a container and label it with your name, date, site of bite and how long the tick was attached to your skin. Share this information with your local extension office or other authority.

Dr. Dietrich Klinghardt, who has practiced medicine in the U.S. for over 35 years and also sees patients in England and Switzerland, is one of the leading authorities on the treatment of Lyme disease. His Lyme disease treatment protocol14 has been used to successfully restore health to hundreds of patients and is definitely something you should check out if you have Lyme disease or Lyme disease symptoms.

In the video above, Klinghardt explains his biological approach to chronic Lyme disease.15 Below is a high-level overview of Klinghardt’s major recommendations: