Research

Research library

Studies on persistent infection, persister cells, herbal medicines and treatment trials, from both sides of the debate. Each one is summarized and linked to the original paper, often with free full text.

Patient Experience 2023 Healthcare

Medical Gaslighting and Lyme Disease: The Patient Experience

Fagen JL, Shelton JA, Luché-Thayer J

Survey documenting the range of "medical gaslighting" Lyme patients experience — symptoms dismissed as stress, anxiety or aging, positive tests and rashes discounted — and how it delays diagnosis.

Abstract
Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated "notifiable disease". As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of "contested illnesses", which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

Summaries are our plain-language reading of each abstract. Lab (in-vitro) and animal results don't always translate to people. Read the original papers and discuss them with your clinician.