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.
