The Elusive Understanding of Lyme Disease in Non-Endemic Geographic Areas: An Exploratory Survey of Patients With Chronic Symptoms in Texas

Abstract

This study was designed to determine the quality of life, diagnostic, and illness-related experiences of patients who self-report a diagnosis with Lyme disease (LD) and/or who are experiencing chronic illness in Texas, a state considered non-endemic for tick-borne illness. This exploratory study found that self-reported LD respondents have multisystem health problems that result in very poor quality of life. Lyme disease respondents experience multiple and severe symptoms, particularly flu-like illness, extreme fatigue, back and neck pain, and anxiety and depression. These symptoms were present at similar levels among all LD respondents, whether their diagnosis was clinical or serological. For all LD respondents, this study points to quality of life experiences that are powerfully negative. Practitioners and disease surveillance experts may consider LD when multisystem symptoms are severe, other etiologies are ruled out, and quality of life is threatened.