Are Lyme Disease Controversies Harming Patients?: A Social History of the Roles of Research, Education, and Treatment in the Patient Experience

Lyme disease is a tick-borne infectious illness causing symptoms that can range in severity from mild to debilitating. It is important for a diagnosis to be made quickly after infection in order to prevent the development of more severe symptoms. However, challenges related to healthcare issues can delay diagnosis. In this thesis, three such challenges are identified: (1) testing and the need for improved diagnostic procedures, (2) a culture of uncertainty and the need for more education, and (3) chronic symptoms and the need for more treatment. These issues are further explored from what are termed the personal, relational, and population perspectives in order to demonstrate their effects on the patient experience. To contextualize these effects, direct quotations from interviews with Lyme disease patients and a caregiver are incorporated. Changes are proposed with respect to research, education, and treatment in order to encourage action that will improve patient experience.