Welcome to Ixodia
Ixodia: The Lyme Chronicles is a nonfiction Substack series where we, Zo and Gene, explore the mysteries surrounding a subset of neurodegenerative syndromes, soul thieves that ravage the lives of those who suffer and their loved ones. The common thread? These patients live or spent time in areas where ticks, in particular Ixodidae, are widespread. But the tick bite is only part of the story. And the more one learns, the more questions arise.
We, Zo and Gene, have been traveling since 2022 to meet dozens of people involved with Lyme disease in one way or another — from computer modelling scientists to some of the most influential and controversial doctors — in six countries on three continents so far! In-person connections allow for rich conversations in which anecdotes, questions, doubts, and insights flow naturally. Then we rework the conversations to present autobiographical monologues by each of the many characters we’ve encountered.
Each issue in the series introduces a hero on the frontlines of the Lyme and associated diseases epidemic: patients, caregivers, practitioners, healers, advocates, relatives, friends, researchers, policymakers… Their narratives portray the intimate, day-to-day struggles and triumphs of facing up to an enigmatic disease. The series brings to life a kaleidoscope of human stories, revealing an intricate personal and social landscape: the world of Ixodia.
Read Ixodia on Substack:
ixodia.substack.com
Backstory
Each year, Lyme and other tick-borne diseases affect hundreds of thousands in the United States and around the world. The CDC estimates 476,000 new Lyme disease cases in the U.S. each year.1 Of the patients who are fortunate enough to be diagnosed with and treated for Lyme disease, 10–20% won’t fully recover.2
The Lyme disease landscape is littered with medical controversies fostered by unsettled science and underfunded research. As a result, as one of the “Lyme doctors” puts it, “If you go to one hundred different doctors who say they treat this illness, you’ll get treated one hundred different ways—and that’s a medical and human tragedy.”