1. Daring to Heal Part I
Gene decides to take his health in his own hands.
This is the first part in a series. See parts II and III in the links below.
Disclaimer: The information presented throughout this Substack series does not constitute medical advice. Consult your healthcare professional to assess your own health condition.
My Life in Your Hands
On September 15, 2020, I woke up in my lonely woodland hut in Mexico with a terrible headache, feeling exhausted and nauseous. The night before, I’d gone out for dinner with friends in a nearby town. I drank but a sip of wine, yet I felt heavily hungover. In the weeks prior, I had similar experiences when going out, even just for a meal. And every time, my body’s reaction was worsening. Something wasn’t right.
All day, I was unable to get out of bed. That evening, I noticed my heartbeat was getting quite arrhythmic and slowing down. That’s when I began to worry. There was nothing I could do in that moment but be calm and pray. As I lay there, silently reciting my prayer, a deep, warm peacefulness embraced my whole body. “Oh Lord! I put my life in your hands!”
At midnight, a jubilant outburst of fireworks and bells broke out in the nearby town — and all across the country. It was Mexico’s Independence Day celebration. But I was in no mood to celebrate. In fact, I felt so weak that, for the first time in my life, the idea crossed my mind that I might not wake up the next day.
The next morning, I woke up still feeling weak but with a clearer head. Alarmed by what was happening with my heart, I knew had to do something — fast. But what? I could barely get out of bed. I couldn’t even write a text message or speak clearly enough to ask for help. My ability to make sense of words had collapsed. In any case, I knew that the only advice I was going to get from anyone would be: Get yourself to the ER! And at least I knew this: that was not a good idea.
Those days, I was staying by myself in a remote location: a little town in the woods, a ninety-minute drive from Mexico City, where I’d chosen to spend the season close to nature and far away from the city’s dreaded COVID lockdowns. One of the downsides of being in such a privileged location, in the midst of a luscious forest, was that the nearest emergency room was an hour away by car. So with what little mental clarity I had left, I reasoned that the worst thing I could do was rush to the closest hospital. Firstly, I couldn’t possibly drive myself. Secondly, I knew most hospitals were crowded with COVID-19 patients. This was mid-September 2020, and the pandemic was in full swing. If I go to the ER, packed full of sick, contagious patients, I’ll surely get COVID, and I don’t think my heart can take it.
The only thing left for me to do was, before taking any drastic action, think slowly, carefully, and systematically, trying to make sense of what was happening to me.
Looking Backwards
Over the past year, I’d been experiencing a cascade of apparently random kinds of malaise. So I began thinking backwards, looking for the cause of my strangely desperate situation.
Yesterday
I felt hungover all day. I was even nauseous. And in the evening, I felt my heart beating so weakly that I thought I wouldn’t survive the night.
September 2020: Mental decline
I’d been unable to think clearly. This was a new one for me! I had trouble retrieving words, found it harder and harder to type on the computer — and made more and more typos. It seemed I could work at about a tenth of the speed I used to just a few weeks before. I felt crushed by even attempting to switch back and forth between two apps, such as a web browser and a word processor. It took great effort to connect the dots between two or three tasks. Working for half an hour was so mentally challenging that I’d get a bad headache and have to lie down for hours.
August 2020: Exhaustion
I loved going hiking up a nearby hill. It was forty-five minutes to the top at most. There was a time, not long before, when this was a breeze. Now, if I was able to make it at all, the next day I couldn’t — literally — get out of bed from exhaustion.
July 2020: Conjunctivitis
One morning, I looked at myself in the mirror and — I had pink eyes! I read online that this was due to inflammation of the transparent membrane that protects the eye, the conjunctiva, and that it’s most likely caused by a viral or bacterial infection. I didn’t take any medication, and my eyes cleared over a period of a week or two.
June 2020: Swollen knee
My right knee swelled up — again. I’d been recovering from a swollen knee since February 2020. When the COVID lockdowns began, I suddenly found myself unable to stand on my own two feet out of pain in my right knee. There was nowhere to go, anyway. I decided to wait it out and go to the traumatologist when the pandemic was over… It took me three months of at-home therapies, such as RICE (rest, ice, compress, elevate) and rehab exercises, to get my walking back. I still needed to use a cane — even crutches sometimes. But just as I began to walk again, in June, I kneeled in the shower to pick something up, and my knee swelled up again, almost as badly as it had before!
May 2020: Insomnia
The most horrible sleeplessness began. No matter how many home remedies I tried, I could not find my slumber. And if I did fall asleep, anything could wake me, even the touch of my T-shirt or the sheets rubbing against my body. So I started sleeping naked, on top of the covers. That helped a little. But ver the next few months, my insomnia only got worse. Some nights, I wrestled in bed until past four in the morning. That’s when exhaustion finally knocked me out for three hours — or four, if I was lucky.
April 2020: Muscle spasms
I’ve never experienced such muscle contractions! So much pain! By April, the pain was mostly in my neck. But I’d begun suffering from back pain eight months before. Thankfully, the contractions were not constant. They came and went every few weeks, sometimes months. Still, I didn’t understand what was causing them. Was I really so tense? Did I stretch too far during my yoga exercises? Sometimes, the pain was so bad I couldn’t even dress myself.
March 2020: Flu symptoms
One morning, I suddenly came down with a terrible flu: headache, body aches, exhaustion, runny nose… The first COVID-19 case in Mexico had just been confirmed a couple of days ago. Could this be COVID? I felt terrible, but my throat wasn’t sore, and just two days later, as suddenly as they began, all my symptoms went away. What kind of flu was this?
February 2020: Quit the antihistamine
I felt just fine! No issues whatsoever! So I stopped taking the loratadine (Claritin) that I’d started taking three months before, in November 2019.
November 2019: Allergic rashes
A pimply, apparently allergic rash sprang up on my right thigh. At first, I thought it was caused by bedbugs, and I had the bedsheets washed. But if there were bedbugs, why were they biting me only on the right side of my body? In fact, the rash looked more like mosquito bites. It began a month before, a small cluster of blisters that gradually made their way up my torso and as far as my right shoulder. I thought this was an allergic reaction to something I was eating, so I cut out possible allergens, one by one, to try and pinpoint the culprit. I started with coffee, then wheat, eggs, fish, soy, nuts… But there was no relief. The itchy patches continued to grow. I tried different ointments, but nothing seemed to help.
Eventually, someone suggested I take loratadine (Claritin), an over-the-counter antihistamine. That did it. The itchiness and the blisters went away. To be on the safe side, I continued taking the loratadine through January, but in February, feeling just fine, I quit it. That’s when the March 2020 flu kicked it.
(Years later, I’d learn that loratadine is not only an antihistamine but also has antibacterial activity — the loratadine must have been suppressing not just a histamine reaction but also an active infection!)
August 2019: A frail knee
The morning of my birthday, after sitting for meditation, I got up from the floor to a new reality. I was turning thirty-nine, and suddenly, my right knee felt like it was ninety-three years old. It was frail and painful, so much so that I had to limp my way to the dining hall. (Throughout this account of my symptoms, I can’t use the word suddenly too much. All these things were appearing out of the blue, forcefully, and with no clear cause.) I was a healthy, slim, athletic kind of person, and as far as I could tell, I hadn’t injured myself.
My best guess was that I’d overstretched my knee while sitting on the floor. For sure, that’s what it was, I thought. Nothing to do here but to do some flexions, stretches, and wait and see. The pain wasn’t too bad, and it went away after a few days. But a month later, in September 2019, it reappeared, this time a little worse. Funnily enough, the knee pain went away in November, when I started taking the antihistaminic… Surely a coincidence, right?
July 2019: Back pain
Again, out of the blue: this time, back pain. Back pain like I’d never felt before. It was as if a boa was constricting my body, wrapped around my lower back. The spasm was so strong and the pain so intense that I couldn’t find a comfortable posture. Lying in bed was excruciatingly painful. And again — up until then, I’d been a healthy person. Where did this come from? Heat therapy helped, but only while heat was applied. Ten minutes later, the pain came back, just as bad.
The one thing that allowed me to sleep was to lie on the solid floor, with a hot compress on my back. In a strange, cyclic way, the back pain faded gradually over a few weeks and then, for a few weeks, came back. This went on for months — up until I started taking the loratadine in November! Still, I paid attention to the coincidence. But all symptoms stopped from November through February. And as soon as I stopped the antihistamine, the muscle pain came back stronger, now higher up, in my neck.
Prior to the onset of these strange symptoms, for most of my life, I enjoyed good, strong health. I thought I kept up a healthy lifestyle, a healthy diet, sleep schedule, state of mind… It seemed unlikely that, just like that, I’d lost my good health! Yet an impossible cascade of issues had appeared out of nowhere, and I needed to find their most likely trigger.
Independence Day
By Independence Day 2020, I was devastated. Now, lying in bed, thinking about the many apparently unrelated symptoms I’d been experiencing since July 2019, a lightbulb went on in my head: heart arrhythmia, fatigue, mental fog, flu, conjunctivitis, knee swelling, muscles spasming and twitching, “allergic” reactions… the insect bite! The cascade of “unrelated” symptoms had begun in July 2019 while I was visiting in the Catskill Mountains, in upstate New York.
I had been going out to nature to do some nature photography — always protecting myself against ticks, and always checking myself when coming back from the outdoors. Yet, one morning, I felt a warm patch of skin in the back on my right thigh. It seemed like there was a bit of a rash on my thigh. Because of the rash’s location, I couldn’t see it well, except in the photos I took with my phone. The solid, reddish rash expanded for a few days, turned bluish, and then faded away. I thought it looked like a spider bite gone bad. It was an allergic reaction to a spider bite; now it’s over and done with, I assured myself. I didn’t think it could have been a tick bite, firstly, because I never saw a tick on me, let alone attached to my skin (I was pretty sure, because I checked myself every evening before going in the shower) and secondly, because as much as I could tell from my phone photos, the rash was not a bullseye — it was just a solid oval.
As I recounted my symptoms, while remembering the isolated incident of the “spider bite,” it was as though the last piece of a puzzle was set in place, and I began to see a clear picture. Could it all be somehow connected to that insect bite I discovered on the back of my leg last summer? Could this be Lyme disease?
Back then, I knew very little about Lyme disease. I knew that ticks had something to do with it and that it was really bad. And, if not from tick illustrations on the tick-removal kit someone had given me months before, I didn’t even knew how the ticks looked like. And that’s that. Like most people, I just wasn’t interested in the details. (That’s until my life was turned upside down.)
By tracing a mental path back all the way to the insect bite, I understood that my “random,” “disconnected” afflictions were all part of one big problem — and that likely was a systemic infection. Then, by clicking around on the Internet, I came to understand that if my heart was involved in the infection, my life was imminently at risk, and I had to be smart and act fast.
Instead of rushing to the ER and exposing myself to yet another infection, with COVID, I needed to consult an infectious disease specialist who knew how to treat Lyme disease. I began, with difficulty, texting my friends in Mexico City to ask for a recommendation. But I’d also found online a little piece of advice: that even the infectious disease doctor would not believe my story if a lab test didn’t confirm it — so I moved forward with that myself. I asked my brother-in-law to help me by calling the diagnostic lab in the nearby town and asking if they had a test for Borrelia burgdorferi. What was that? Well, if the Internet was right, that was what was causing my downfall. But was it so?
The lab technician
came to my hut to do the blood draw, and three days later, I had the test results. By then, I’d made an appointment in Mexico City with a famed but retired infectious disease doctor who agreed to see me. Somehow, I found a ride to the city, and when I came to see him, I already had a diagnosis under my arm, confirmed by a lab test: Lyme disease. Promptly starting antibiotic therapy stopped in its tracks the infection in my heart — the one blessing I needed the most!
That morning in September 2020, on Mexican Independence Day, my prayer was answered with a clarity and foresight that would save me a lot of trouble: “Oh Lord! My life is in your hands!”
The following years,
were a nightmare: pain, limitations, mood swings, hypersensitivity to light and sound (which buried me in a dark bedroom for years), hundreds of pills, dozens of visits to hospitals and testing labs, countless blood draws, disagreements among my doctors, therapies research, travel from Mexico back to the States to get treated by more experienced doctors in the East Coast, thousands of dollars (that I didn’t have) to pay for out-of-pocket medical expenses (a fundraiser among family and friends provided the resources for the first couple years of treatment), conjugal disputes… It’s a very complicated story — and unfortunately, not an uncommon one. If you’ve found your way here, you’ve probably heard it before. But the foresight I was blessed with that day in September 2020 — and truly informative online resources, like lymedisease.org — saved my life and spared me from a lot of spinning around the healthcare system for answers while decaying further and further.
But in 2021, with the support of many of my friends who responded to my crowdfunding prompt, I began a holistic treatment program in Washington, D.C., for neuroborreliosis, an advanced stage of Lyme disease where the nervous system and the brain — as well as every other system in the body — are involved.
Ever since, I’ve been taking anti-infective medications and herbals, as well as antihistamines, anti-inflammatories, and neurotropics — both supplements and pharmaceuticals, over the counter and prescription. (A mouthful? Yes, it is.) Gradually, over four years in treatment, I went from not being able to leave the house, think straight, or regulate my emotions to living an almost “normal” life.
In the dawn of 2025, I felt it was time to dare to think that I could start a new, healthy chapter of my life. Yet, over the past few years, I’d become used to thinking of myself as a sick person. If I was going to start acting as though I was healthy again I needed proof. I needed to test myself, confirm for myself that I was back to being me — at least partly.
Read on:
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.