Whether you know it or not, there has been a fierce battle — called “The Lyme Wars” by everyone from The New Yorker to NPR to Dutch scientific researchers — for at least a decade. Lyme disease arguably is politicized as much as AIDS was when it emerged in the 1980s, and the warriors for the most part fall on one of two sides.
First, a disclaimer: Given that many news stories like this one present the there-is-no-chronic-Lyme opinion authoritatively, without discussing counterarguments and without stating any inherent financial or other conflicts of interest, I will state up front that as someone who has lived with long-term, progressive damage to my health from Lyme disease, my bias is that chronic Lyme disease exists. It exists in my reality and in my body, and it has responded mostly favorably to various treatments that not all patients can access or afford. And so the purpose of this essay is to offer an overview of the two sides—those who say there is no such thing as chronic Lyme disease and the countless thousands who live with it and the medical practitioners who treat them. Other articles sometimes present these patients as mentally ill people who believe they have a physical illness but do not, and many of these articles describe doctors, nurses and other healthcare providers who opt to treat Lyme disease patients rather than rejecting them or giving them psychiatric medications. Let it be known that the opinion of this author, based on 20 years of experience with Lyme disease, believes that the latter group is inverting the Hippocratic Oath, “first do no harm” into a perverted new mantra to “first do harm” to patients with this condition. It’s not new. This was done to HIV/AIDS patients in the 1980s, and to black men with syphilis for a 50-year period before them.
Team Chronic Lyme is made up of patients who have been diagnosed with Lyme disease and have received or are seeking treatment for it, along with medical practitioners who believe these patients would benefit from extended antibiotic treatment. The friends, family and others who support these patients also fall on the side of Team Chronic Lyme. The International Lyme and Associated Diseases Association represents medical professionals who treat Lyme disease, and among high-profile individuals who live with the affliction are musicians Avril Lavigne (below) and Daryl Hall, actor Ashley Olsen, author Amy Tan, reality television stars Yolanda Hadid (formerly Foster) and Ally Hilfiger, Hadid’s children Bella and Anwar, and others, including Kris Kristofferson, whose previously diagnosed fibromyalgia and the Alzheimer’s disease that was stealing his mind away were discovered to be due to late-stage/disseminated Lyme disease. (Read Dana Parish’s interview with Kristofferson’s wife Lisa about how effective treatment brought him back from the brink.) Both during the last week of April, singer Shania Twain and television personality Kelly Osbourne reveal that Lyme disease derailed their health and their careers. Osbourne has said Lyme disease “almost killed me.”