Welcome to Ixodia
About the Substack series
Amongst Mountains
“In 2019, my partner, Zo, and I stayed for a couple of months in Brașov, an ancient, picturesque Transylvanian town at the heart of the Carpathian Mountains, in Romania. We chose this place as a writing retreat because it has all the amenities of a small city and the beauty of a rural town. People there are kind, the food is great, everything you may need is near, and the solitude of not knowing almost anyone allows much time to delve into one’s own thoughts. But what’s best is, the old town is in a steep valley. Wherever you look, you see nearby hills and mountains. Walk out of the house and not five minutes away, you’re already enveloped by the Transylvanian forest.
“Coming from the United States, the flight was long and the jet lag—longer. I felt exhausted from day one, and the heaviness never truly went away. But despite being so tired, I couldn’t find a good sleeping posture. The muscle spasms that began a month before, despite my treating them with heat, massage, rest, never really went away. They lingered in the background and kicked up with the slightest prompting: a sudden move, a cool draft… But it was not just the muscle spasms that kept me from my much-needed sleep—I was, simply, restless.
“And so my writing retreat began: by night, lying wrapped in a blanket on the wooden floor to try and reduce the back pain, staring at the crumbling ceiling plaster, and by day, staring intermittently at the mountain out the window and at my laptop screen, trying to stay awake.
“One day, I decided to go for a walk up a well-known peak. It wasn’t a very long walk, and it wasn’t a very high peak. I had climbed the trail before in about three hours, and it was a gentle slope. But this time, I was gasping for air. And my knees weren’t as strong and supportive as before. I had to wear knee braces and use walking sticks to make it up the trail. My knees felt as though they were wearing down very fast. This was unlike me. I thought, I just turned forty, and already I feel the weight of the decade on my shoulders. But why was I feeling so exhausted? Why such terrible back pain? What happened to my knees?
“In my terrible state, the idea arose that perhaps, while walking in the Transylvanian mountains, I might have been bitten by a phantom. It would take one year of ever more debilitating days for me to find out that I had, indeed, been bitten. And not by just any phantom, but by an Ixodida phantom.”
— Gene de Paule, patient since 2019
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 Zo and Gene
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 de Paule has worked in various creative fields, including music, photography, nonfiction writing, and developmental editing. He is fluent in three languages and 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 photographing nature 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.
During a year of antibiotic therapy in Mexico, many symptoms gradually faded. But 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. He looked to the East Coast of the U.S. for more specialized treatment.
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.”
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.