The Tick(ing) Time Bomb: Temporality and Morality in the Care of Late-Stage Lyme Disease Patients

Abstract

Lyme disease is the fastest growing infectious disease in the United States, with an estimated 300,000 new cases each year. It is medically known as the “great imitator” because its symptoms can affect any organ or system of the body, mimicking many other immune and neurological disorders. Discrepancies between early-stage and late-stage Lyme disease symptoms and diagnostics further complicate its diagnosis. While the disease has been traced back thousands of years, its formal medical discovery occurred just over forty years ago. This thesis charts the biomedical identification of Lyme disease and the explicit role of vernacular science in its discovery. It also shows how, amidst diagnostic and treatment uncertainties, the medicalization of Lyme disease has been accompanied by a narrowing in the forms of care that are considered most appropriate for late-stage Lyme disease patients.

Ethnographic data from patients, physicians, caregivers and advocates of Lyme disease reveal that this condition can be best understood as primarily relational in nature. While late-stage Lyme disease is characterized by a host of challenging physical symptoms, patients are often more concerned about the altered relationships with their senses of self, friends and family and medical practitioners, as well as their work, hobbies, and places of residence. Shared vernacular among the actors contending with the disease offer rich meditations on the temporality and morality of care. With this understanding in mind, more effective and appropriate forms of treatment can be imagined for late-stage Lyme patients. Functional, or integrative, medicine with its emphasis on patient-centered and whole-system approaches, have been shown to be a favorable form of chronic disease care, and this thesis advocates for its application on the treatment of late-stage Lyme disease.