My Story, Part I: Getting Sick
This story begins—as so many stories do—in the realm of the ordinary. At 31 years old, I was living in my hometown of New York City, and while not exactly thriving in the way I’ve come to understand what that term really means, I was doing fine. Working as a freelance food writer and supplementing my income by providing occasional childcare, I had friends, two lovely cats, and enough money to pay the bills.
Most importantly, I had my health. An active person with plenty of energy, in my time outside work I enjoyed hobbies such as a regular yoga practice and runs in the large, green city park near my apartment. To get around the borough of Brooklyn, where I lived, I zipped to and fro on my trusty red bicycle, its big rear basket often brimming with the fresh, delicious ingredients I purchased from my local organic food co-op and whipped up into elaborate and colorful meals. As long as I got enough sleep at night, I was always full of energy and prepared to embrace the packed days of multitasking that city living tends to entail.
Sickness was something I had yet to experience firsthand. Sure, I’d had colds (something I would now name as a healing or detox reaction) throughout my 31 years on earth, but very infrequently, and to this day, I’ve never fallen ill with common infections like the flu, bronchitis, or that made-up phenomenon that dominated headlines from 2020 through 2022. A strong person with robust health, illness was just not something I thought about—until it came to dominate every facet, every fiber of my daily existence.
I had always been a healthy person. I don’t much remember being sick in my childhood, though a memory of getting the chickenpox around the age of 5 and staying home from school two days in a row to take oatmeal baths to soothe the itch does come to mind (thank goodness there’s a vaccine for that now, so that small children don’t have to suffer through one to two days of itchy skin! Sarcasm). I also recall a particularly piercing late-night ear infection when I was very, very little, in those days when doctors still made house calls, and a man in a white coat arriving in the wee hours to apply relief-giving antibiotic drops to the afflicted ear.
But these occasions were few and far between. I was raised in a family that was conscious of health, as my parents understood it, and we had a fairly good diet compared to the American mainstream. Packaged, sugary foods were limited, soda was outright banned, and almost everything we ate was cooked at home with whole ingredients. As I grew older, the interest in food instilled by my family grew into a passion, and I continued to love to cook with nourishing foods—a habit that certainly helped fortify my immune system and overall strength.
But in the summer of 2017—a humid, blazing one, as New York summers tend to be—something changed, almost overnight. Shortly after returning to the city after a trip up north to the Catskill Mountains—a protected, heavily forested, and beautiful part of the state known for its pristine nature and extensive hiking trails—I started to feel off. All of a sudden, I was constantly exhausted. No matter how much sleep I got—and in this time period I was able to sleep up to 14 hours a night—I would awake bone-tired. Maintaining normal functioning soon became a mighty challenge; at the time, I was babysitting for a family located about a 12-minute bike ride from my apartment, and I remember barely being able to work up the stamina to make it to the house and back. All I wanted to do was rest or sleep, sleep or rest.
It was at this time that the frantic internet searches began. With my overdrawn account of energy, I’d use the little reserves remaining to type queries into my web browser. “Cause of sudden fatigue.” “Sudden chronic fatigue syndrome.” “No energy reasons.” “Constantly exhausted why?” The answers that pinged back at me—the black words set against the white, glowing background of the computer screen that now seemed to irritate my eyes and cause my head to ache—suggested issues such as autoimmune disease, supposedly common in women my age; food allergies and intolerances, which I didn’t feel applied to me; and Lyme disease.
A term apt to strike terror into the heart of any Northeasterner, Lyme disease was something I had heard about since I was a child. Growing up, my parents had a semi-rural second home located in a small section of forest in the Pocono Mountains of Pennsylvania, where I was fortunate enough to live a wild childhood—at least part of the time. During the warm months, my parents, older brother, and I would pack into the car every weekend to head to “the country house,” typically spending a long vacation of two weeks there every summer, as well.
As a city kid, in the era before cell phones and computers, these times at the country house were bliss. From a young age, I was permitted to roam the woods all day long with zero supervision, my neighbor friend Kyle and I setting out in the morning or early afternoon and spending the rest of the daylight hours scrambling over big boulders, overturning small rocks in search of salamanders and insects, picking the wild blueberry bushes that exploded with sweet fruit every summer, and generally making mischief. The only rule was that I had to be back around dinnertime, when the sun would start to set and my mother would call my name from the house’s wraparound porch.
In the evening, after stuffing myself on the tasty grilled chicken, burgers, and hot dogs that my father was fond of making on the charcoal grill, my mother would inspect the back of my neck, behind my ears, even between my toes—a “tick check.” Searching for those tiny black arachnids, she would more often than not find one: A hard-backed, eight-legged, wriggly little thing. I don’t recall ever being bitten by a tick in my youth, but one, two, or three of the nasty insects were usually plucked from my body and flushed down the toilet.
Around those parts, everyone knew about Lyme disease. While I don’t remember hearing about anyone who was chronically ill, ticks were a part of life in these wooded areas of the Northeast, and most folks were cognizant of the fact that they had the potential to bite and infect you with the fast-replicating bacteria known as Borrelia burgdorferi, named after the Swiss-born entomologist Willy Burgdorfer, who discovered the pathogen soon after Lyme disease entered the public consciousness in the United States in the early 1980s.
The story of Lyme’s origins is far too long, complex, and contested to go into here—maybe I’ll do a followup essay at a later date—but the illness, characterized by fever, joint ache, and lethargy, was first identified in southern Connecticut in the late 1970s. At the time, many families in and around the town of Lyme started experiencing these symptoms out of the blue, and by 1982, Burgdorfer had identified the culprit: tiny, quick-dividing bacteria that live in the guts of ticks and can be transmitted to humans when the arachnids bite. By 2000, Lyme, named after its seeming place of origin, was a veritable epidemic—a real one, in this case—with 17,730 cases reported to the Centers for Disease Control that year.
Today, Lyme is the most common vector-borne disease in the U.S., and while mainstream medicine continues to assert that the infection is easily treated with a short course of inexpensive antibiotics, millions of Lyme sufferers around the world know that this is not the case. Again, it’s a subject for another essay, but anecdotal reports from (roundly gaslit) Lyme patients tell us that the vast majority don’t get relief from the illness after taking prescriptions. Many go on to experience long-term symptoms that actually worsen over time, incapacitating many desperate Lyme sufferers with chronic issues such as intense fatigue, arthritis, migraine, and hormonal imbalances. Brown University statisticians estimated that in 2020, a full 2 million Americans lived with chronic Lyme, also known as post-treatment Lyme disease.
Of course, I couldn’t have told you any of this back in 2017. Yes, I had grown up hearing about ticks and Lyme, but I didn’t know anyone affected by these issues, and didn’t pay much attention. But when I suddenly and inexplicably got severely ill—for the first time in my life—after several days of hiking through the upstate New York woods with friends, those web searches suggesting Lyme disease as a possible explanation for my symptoms started to reverberate inside my head. (It’s worth noting here that nymph, or immature, ticks can be as small as a period at the end of a typed sentence, and so frequently go undetected when a tick check is performed.)
It’s hard to write about Lyme without touching on the widely acknowledged inaccuracy of the commonly available serum (or blood) testing for it, but suffice it to say that Lyme advocacy organizations such as the Lyme Disease Association note that testing may be accurate in only about 50% of instances, with the tests often failing to pick up the Lyme bacteria and resulting in false negatives. Ignorant to these testing issues, in June of 2017, with my chronic fatigue getting worse by the day, I decided to go to a family doctor in my area (not having set foot in a doctor’s office in many years, I selected a random one listed on my health insurance’s database).
My blood test results weakly indicated a possible case of Lyme, which was enough for this doctor—who claimed to have seen many similar cases before—to prescribe me 3 weeks’ worth of twice-daily doses of the common antibiotic doxycycline (for those health-aware readers getting a sinking feeling reading about this warfare-level assault of toxic chemicals on the gut, I’m right there with you, but I knew nothing about human health at the time). I started on this protocol diligently, and within about four days, my energy levels started rebounding. Within a week, I was almost back to fully functioning.
I felt lucky to have recovered from this scary mystery illness that may or may not have been Lyme disease, and I moved forward with long-established plans to relocate south of the border to Oaxaca, Mexico, one of my favorite places that I had discovered during my frequent world travels in my 20s. I packed two small suitcases and hopped on a plane, not knowing the relief I was experiencing would be short-lived, and that things were about to get way, way worse.
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