Lyme long-haulers have been neglected for decades. Will COVID lead the way to acceptance?

Written by Steven Phillips, MD and Dana Parish
Authors, Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again

With the COVID-19 pandemic taking center stage, it’s easy to forget that Lyme disease has been wreaking its special brand of havoc for more than thirty years. Similarly, they can both be difficult to diagnose and treat, and can cause a staggering array of autoimmune, psychiatric, neurologic, cardiac, and in utero issues. If this is the first time you’re hearing this, it’s not your fault. Lyme has become a medical-political lightning rod, whose mishandling has given rise to a pandemic of dangerous misinformation. Nowhere is that more evident than in a spate of recent articles that include these recent pieces from Bloomberg Businessweek and The New York Times. They have stirred up controversy and misled unwitting readers.

Countless chronic Lyme patients, like COVID “long-haulers,” suffer ongoing, often life-altering symptoms. The difference is that those with chronic Lyme are a marginalized group, with limited access to care by mainstream medical providers.

Although tragic, the unfortunate outcomes described in the Bloomberg article are undoubtedly rare events, and its unilateral viewpoint only serves to amplify a few negative stories within the confines of its echochamber. It is important to recognize that those outcomes may not have occurred if patients had ready access to a broad range of healthcare options instead of being disenfranchised by the medical care system.

In journalism, serious harm can result by the cherry picking of data and selling this narrative as if it represents the norm. The late Dr. Neil Spector, a Duke University oncologist whose death stemmed from Lyme-induced heart damage requiring heart transplant, aptly observed, “I could find five cases of bad outcomes from a stem cell transplant for leukemia or checkpoint inhibitor therapy for melanoma and reach the conclusion that no leukemic should receive a curative stem cell transplant, or we shouldn’t give checkpoint inhibitors for cancer patients.” By explicitly excluding the countless recoveries of those who could finally reclaim their lives after successful treatment by Lyme doctors, these journalists not only failed to provide a balanced perspective, but have also brought significant harm to an already struggling patient community.

If one was fairly investigating the treatment of Lyme and its confections, one might have happened upon Dr. Preston Wiles, a Yale-trained child and adolescent psychiatrist who served on the clinical faculty of Yale for 18 years. Says Dr, Wiles: “I was referred to a number of young people with ‘medically unexplained symptoms.’ They were passed off as ‘it’s-all-in-their-heads’ yet often looked quite sick to me. But pediatricians didn’t take Lyme seriously and strongly discredited Lyme doctors, so kids had to secretly see them. And you know what? They all got better! Dozens of them. It’s tragic that their pediatricians never got the benefit of learning how to treat Lyme since parents were too scared to tell them who got their kids well.”

Yearly Lyme cases are estimated to exceed 400,000 , which makes it more common in the US than new cases of breast cancer, HIV, and hepatitis C — combined. Chronic Lyme patients add up to approximately 2 million in the US alone, and can become disabled to a degree which exceeds many other chronic diseases. This illness takes an enormous financial and humanitarian toll.

Although some feel fine after only a few weeks of antibiotics, many remain ill despite long-term therapy. In a large study of 165 Lyme patients treated with four months of antibiotics, 19% relapsed after treatment. Of them, 41% were proven to still harbor Lyme infection. Johns Hopkins found that 39% of early-stage Lyme patients were still unwell six months after treatment. Researchers at Western Connecticut Health Network showed that 61% of early-stage Lyme patients were still sick with the same symptoms six months after treatment. And a study of late-stage Lyme found about 30% treated with a few weeks of antibiotics didn’t improve at all, and none were cured. Yet the Bloomberg article leads us to believe that this is all in the patients’ heads, that opportunistic doctors are praying upon vulnerable and gullible patients. It disrespects those very same patients to omit the overwhelmingly persuasive data where Lyme bacteria have been isolated from patients, even after months to years of antibiotics.

The Bloomberg article warns “desperation doesn’t make for a rational choice” without providing any solutions to diminish such desperation. With neither a reliable diagnostic test nor an effective treatment for long-term infection, research should be a priority for this national health crisis. Unfortunately, this is not the case. Non-profit organizations such as Project Lyme and Bay Area Lyme Foundation are trying to bridge the gap by funding groundbreaking research and providing much needed support to a seriously, chronically ill population.

In a culture where truth is hard-won, we hoped to find some journalistic integrity. We have been sorely disappointed. It’s time for an article that gets the facts right, even if we don’t have all the answers. Chronic Lyme is as much a human rights issue as a scientific one. Right now, as you read this, patients are being denied their basic human rights to the pursuit of good health because of misrepresentations and omissions of fact.

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