By Mary Beth Pfeiffer
In 2012, after years as an investigative reporter, I decided to look into Lyme disease. The project would be short-term and straightforward – or so I thought.
The project, involving an illness delivered by the bite of an increasingly common tick bite, instead took up much of my time over the following five years. It proved to be an investigative story far beyond the parameters I had envisioned.
When I embarked on my research, I had lived for three decades in New York State’s Hudson Valley, which has one of the world’s highest rates of Lyme disease. Yet the scope and human toll of the illness, not to mention a raging controversy over its potential to be chronic, had barely grazed my consciousness before. This was the real story of Lyme, which I found has long been misunderstood by the public, minimized by health officials, and simplistically framed by medicine as easily diagnosed and highly treatable.
Lyme disease officially is considered an endemic, an illness that emerges in a geographical area, takes root, and stays. It does not infect suddenly and then retreat like Zika, for example. Though fraught with long-term implications, the word endemic carries less urgency than the word epidemic. That term is among many reasons for the marginalization of Lyme disease.
With the publication of my series on Lyme disease, I found myself, as investigative reporters often do, in an adversarial position with the government, specifically the federal Centers for Disease Control and Prevention. But I also found myself on the fringes of mainstream American journalism, which had, time and again, repeated a set of Lyme disease tenets raised to the level of dogma.
The oft-reported depiction of Lyme by American medicine and in the press goes like this:
- Lyme disease can be readily diagnosed.
- The illness is cured with a single round of antibiotics.
- People who believed they had longstanding infections suffered from other maladies, were perhaps disturbed and certainly misled.
- Physicians, sometimes called “quacks,” were cashing in on the delusions of patients, including some who had faced the loss of their licenses because they had prescribed longer-term antibiotics. These doctors, I would note, were often treating people no one else would, for a disease others refused to recognize: late-stage Lyme disease.
This understanding of the disease was understandable, at least at the outset. It grew from research on testing and treatment that major medical journals had published. A prestigious physicians’ society had issued treatment guidelines that the CDC had embraced. Countries around the world had adopted these protocols as their standard of care. For busy reporters, this view was easy to accept.
At one time, the common truisms about Lyme disease, formed in the mid-1990s and early 2000s, may have had credibility. But science evolves. Over the last decade, new research from major universities now paints a different, more nuanced picture.
The Lyme bacterium sometimes survives an antibiotic onslaught during test tube, animal and human studies, the research indicated. The pathogen has been shown to hide, change shape, and lay dormant beneath matrices not penetrated by the drugs commonly used to fight it. Also, the clinical trials supporting these antibiotic regimes are being challenged on design and statistical grounds. Additional pathogens that ticks can carry never were considered in the studies, and now have been shown to worsen Lyme and lead to serious illness.
Authors of this new research have struggled to find outlets in which to publish, mainly because the science challenges a prevailing status quo. But it now is breaking through.
These recent findings aside, there has long been reason to question the Lyme paradigm. Multiple studies in the United States and Europe have shown that blood tests often fail to diagnose the illness. Instead of a positive test, a tick-associated rash can be accepted as proving infection, but even the CDC acknowledges that a rash may not be present in 20 to 30 percent of cases – a considerable share of the 380,000 Americans infected in 2015 alone (and tenfold the officially reported 38,000). Other research shows the rash goes unseen or is mistaken for another condition, leading to belated diagnosis and a harder-to-treat case. Even early-treated cases are known to linger, with unexplained symptoms known as Post-treatment Lyme Disease Syndrome (PTLDS).
Typical of how the disease has been minimized, the CDC declared in 2015 that only a small percentage – about 5 percent – of treated patients suffer such continuing problems. But that statistic was based on a group of patients examined on average 15 years post-infection. PTLDS is diagnosed if symptoms linger for six months. Nonetheless, even 5 percent means that 17,000 patients diagnosed in 2015 would have symptoms 15 years later, and many thousands more would have symptoms in each of those years. Is that small?
I would urge health reporters to take a new and harder look at Lyme disease. Do not discount the voices of patients, their physicians and informed advocacy groups. Go beyond the horror stories. Question the prevailing wisdom. Read the science.
Lyme disease is being recognized as a global menace, as climate change enables infected ticks to migrate to places formerly too cold for them to thrive. Canada, Scandinavia, Russia, China and Western Europe all have significant or spreading epidemics of Lyme disease. Since U.S. protocols for Lyme disease treatment are adopted in many of those countries, it’s time to rethink the American view of Lyme disease.
For additional information on the science, here are some articles to check out. These pieces include links to some of the emerging science and outline how to interpret that science as well.
- Go-to Lyme drugs don’t always kill the bug, at least for some
- CDC says fewer suffer after Lyme disease. Doesn’t say, if treated early
- Lyme bug stronger than antibiotics in animals and test tubes. Now study people.
- Lyme disease insurance claims show disease rise, rural-urban divide
Mary Beth Pfeiffer (@marybethpf) is an investigative journalist and author of the forthcoming book, “Lyme: The First Epidemic of Climate Change” (2018, Island Press). She was bestowed the Sigma Delta Chi Award for investigative reporting from the Society of Professional Journalists for her Lyme disease reporting for the Poughkeepsie (N.Y.) Journal. She is also the author of “Crazy in America: The Tragedy of Our Criminalized Mentally Ill” (Carroll & Graf Publishers, 2007).
