Summer means more fun outside. But it also means more ticks, and with them greater – and growing – risk of Lyme disease.

Ticks Lyme Disease

Lyme disease is transmitted via bites by infected blacklegged ticks, also known as deer ticks. Over the last decade, Maine has had higher rates of Lyme disease than any other state: more than 100 cases per 100,000 people on average each year. CDC via AP, File

Between 2007 and 2021, insurance claims involving Lyme have increased by 65% in urban areas and by more than 350% in rural areas, according to FAIR Health. And the federal Centers for Disease Control and Prevention now estimates that nearly half a million people in the U.S. contract Lyme disease every year. Over the last decade, Maine has had higher rates of Lyme disease than any other state, more than 100 cases per 100,000 people on average each year. Of these, 10% to 15% may develop post-treatment Lyme disease syndrome, which can be thought of the way we think about long COVID. “Long Lyme” causes persistent symptoms even after appropriate antibiotic treatment for Lyme disease.

But lack of alignment and agreement among physicians and public health authorities about Lyme diagnosis and treatment and what constitutes post-Lyme – as well as limited clinical understanding and diagnostic availability – has left a growing number of patients without the support and help they need.

Making matters worse, post-Lyme (and, for that matter, long COVID) may not be caused by persistent infection, but instead by overactive immune response to proteins left in the body after infection. And symptoms of these diseases, including fatigue, brain fog and exhaustion after exercise or exertion, are very similar if not identical to one another, and to chronic fatigue syndrome. Another confounding factor in chronic inflammatory conditions such as post-Lyme and long COVID is mental health symptoms most likely caused by neuroinflammation, an inflammatory response within the brain or spinal cord. Standardized and objective definitions that separate distinctly different physiological causes can help.

Unfortunately, researchers too often don’t take these similarities into account. One paper recently published in the Journal of the American Medical Association, widely reported in the news media, proposes a preliminary rule for identifying long COVID based on a composite symptom score. Three of the core symptoms used in the study were fatigue, brain fog and post-exertion malaise. Though these symptoms are also core symptoms of post-Lyme, testing for post-Lyme syndrome was not a part of the selection methodology for the study.

The ambiguity complicates research into both Lyme and long COVID, which is my primary field of research and clinical practice. Currently, a much-needed effort is underway to define long COVID, which will serve as the foundation for establishing standards of care. But more effort is needed to define Lyme and myalgic encephalomyelitis/chronic fatigue syndrome and to differentiate these syndromes and their underlying clinical signals from long COVID.

To support our own research, my colleagues and I developed a blood test that measures 14 critical immune biomarkers and then uses AI to compare them to Lyme-specific and long COVID-specific biosignatures we identified. In testing this assay via clinical research in conjunction with hospitals and medical centers, we were surprised to find that between one in five and one in three people who came to us thinking they might have long COVID actually had results that indicate post-Lyme syndrome, as determined by subsequent Lyme-specific testing. We now estimate that for every known case of post-Lyme syndrome, there is another undiagnosed and uncounted case.

A newly released documentary, “I’m Not Crazy, I’m Sick,” from documentary filmmaker Elle Brooks-Tao, portrays the human impact of post-Lyme, in particular the difficulties of being taken seriously by medical professionals and getting a diagnosis and path for treatment. According to Brooks-Tao in a recent discussion with me, “Patients are being diagnosed and treated for diseases they don’t have, based on symptoms, rather than a verified root cause. The tenacity of Lyme and related co-infections is underestimated, underfunded and underpublished, leaving well-meaning doctors in all corners of the nation without the tools to diagnose and therefore treat these extremely complicated cases of persistent Lyme disease. In my work on the documentary and through the networks that has opened up, almost every day I hear a new story of a patient going bankrupt, becoming suicidal or being misdiagnosed.”

The uphill battle to “present credibly” to medical professionals, a conscious effort that patients have described, is a common thread throughout these chronic diseases. Because the medical establishment lacks alignment, objective criteria for diagnosis and standardized therapeutic protocols, the burden of proof – and even treatment – is on the patient. Ultimately, greater urgency to better understand and develop both diagnosis and treatment of these and other inflammatory diseases, which together affect as many as 2 billion people worldwide, is critically needed. So are better agreement among clinicians and public health authorities, and the compassion to simply recognize when a person is suffering and accepting their description as legitimate.

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