Lyme Disease and the Epistemic Tensions of “Medically Unexplained Illnesses”

Abstract

In the US, disagreement over the biological basis of "chronic Lyme disease" has resulted in the institutionalization of two standards of care: "mainstream" and "Lyme-literate." For mainstream physicians, chronic Lyme disease is a "medically unexplained illness" that presents with an abundance of "symptoms" in the absence of diagnostic "signs." For Lyme-literate physicians, and complementary and alternative medicine practitioners more generally, symptoms alone provide sufficient evidence for medical explanation. Drawing upon ethnographic research among mainstream and Lymeliterate physicians, I suggest that medically unexplained illness is not a biomedical anomaly but an intrinsic feature of biomedicine.

Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease

“…In 2007, Feder et al introduced the concept of multiple sub-categories of patients under the umbrella term "chronic Lyme disease" (CLD) to characterize these patients (174). CLD is a polarizing diagnosis in clinical medicine, with widely divergent definitions and understandings of disease mechanism and effective treatments (175). One key component of the controversy relates to whether CLD is a real disease which is associated pathophysiologically to past or present B. burgdorferi infection.…”

Personal Agency and Community Resilience: Narratives of Women Navigating Health Care With Chronic Lyme Disease

“…In addition to suffering a confusing array of symptoms, which can include pain to the level of postsurgical pain and fatigue that is comparable with multiple sclerosis (Fallon et al, 2008), Lyme patients experience a double burden of having their illness experience judged and doubted (Dumes, 2020). The medical literature is laden with public statements from medical providers who support (Greenberg, 2017;Halperin, 2015;Hirsch et al, 2018;van Hout, 2018) and condemn CLD (Auwaerter et al, 2011;Gentilini & Bricaire, 2019;Melenotte et al, 2019).…”

“…They deal with stress from high expenses for treatment that is not always covered by insurance, especially for alternative medical care (Ali et al, 2014;Drew & Hewitt, 2006). The dismissal and discrimination they receive from physicians leads to the distrust of conventional health care systems (Ali et al, 2014;Dumes, 2020;Gaudet et al, 2019). Through their dismissal by providers, they learn to advocate for themselves as individuals and collectively (Drew & Hewitt, 2006).…”

“…Researchers have described the "push" (e.g., stigma) and "pull" (e.g., effectiveness) forces that CLD patients experience as they navigate modern medical services and seek alternative care (Ali et al, 2014;Boudreau et al, 2018). The anthropological studies of CLD patients and providers have suggested that one reason why people feel pushed away from biomedicine is that it focuses on physical pathophysiologic signs over a patient's symptoms, whereas alternative and integrative medicine have a greater focus on symptoms (Dumes, 2020). Other researchers add that physicians are trained to recognize heuristics, so when they see a patient with a contested illness, the heuristic they recognize is that the patient has multiple medically unexplained symptoms (Wessely & White, 2004).…”

Design theory to better target public health priorities: An application to Lyme disease in France

“…With regards to the plan of care, bringing to the patient a better comprehension of their health status would help them to present quicker to the doctor and to better understand the course of the plan of care. Indeed, there is a disruption between the medical and the patient's point of view regarding their health status, especially with chronic symptoms ( 74 ). Tools focusing on the knowledge of the patient's own health status are already developed with diseases that require self-care on the part of the patient (e.g., patient decision cards, biofeedback, smartphone apps…) ( 75 , 76 ).…”