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.
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.”
Meet the Editors
The series Ixodia is the work of Gene de Paule, a Lyme survivor, and Zo Viya, his partner and caregiver, both professionals in the editorial and creative fields.
We hope that the holistic picture drawn by the series offers patients and their loved ones, as well as the general public, a broader understanding of the tick-borne illness epidemic — one that may evoke compassion, enhance healing, and lead to greater awareness about prevention, early diagnosis, and treatment options.
Zo Viya
Born in Cambridge, Massachusetts, Zo grew up in rural New Hampshire. She received a BA in English literature from Bard College and has copyedited dozens of books for The History Press on local history and folklore. In 2021, Zo created an editorial business, Vocarium Author Services, offering a full array of services to fine art galleries, filmmakers, memoirists, magazines, and premier higher-educational institutions.
When her partner, Gene de Paule, was diagnosed in 2020, Zo delved with him into the “Lyme world,” discovering an unsuspected labyrinth of controversies, enigmas, and stigmatization. As Gene began to heal, they decided to share their learning by editing the stories they wish they could’ve read before Gene’s tick bite: Ixodia: The Lyme Chronicles.
Gene de Paule
For over 20 years, Gene has worked in various creative fields, including music, photography, nonfiction writing, and developmental editing. He is fluent in three languages and in many art-related technologies. Since 2022, Gene has collaborated with Zo Viya on Vocarium Author Services’ editorial projects. He is also a Lyme disease survivor.
Gene was born in Mexico in 1979 to a family of academics and spent most of his formative years in Jesuit institutions. Extracurricularly, he studied music, operatic voice, theatrical voice, and other vocal techniques, eventually developing and teaching his own vocal training program. He is passionate about music, the written word, discovering world cultures, and his practice of Siddha Yoga.
After spending time in the forests on the East Coast of the U.S. in 2019, Gene experienced a monthslong cascade of debilitating ailments: myalgia, dermatitis, arthralgia, and finally, carditis and cognitive impairment. A year later, in Mexico, serological and PCR tests confirmed his dreaded suspicion: while in the U.S., he was bitten by ticks carrying the spirochete that causes Lyme disease.
Despite a year of therapy in Mexico and of many symptoms gradually fading, the disease continued to progress, affecting the depths of his mind. Day after day, Gene’s thinking and speech slowed down; night after night, hypersensitivity, sleeplessness, anxiety, and an uncontrollable temper grew darker. This prompted him to look for more specialized treatment in East Coast of the U.S.
After two years bedridden, Gene’s first thought when deciding to get back to work was: “We must write about all this, raise awareness, join forces with others in this fight, and do all we can to make sure that not one more person suffers from these awful tick-borne diseases.”
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Disclaimer: The information presented throughout this Substack series does not constitute medical advice. Consult your healthcare professional to assess your own health condition. The opinions and recollections expressed by persons featured in the Ixodia series are solely theirs and don’t reflect the opinions or beliefs of the editors or their affiliates. In the nonfictional stories presented, some names and characteristics have been changed, some events have been compressed, and some dialogue has been recreated.
