It’s Monday morning, and as I stretch out in bed, I quietly assess the damage. Aching feet. Stiff neck muscles. A crushing sense of fatigue, even though I’ve just slept nine hours. Within a few seconds, I can already tell that today is not going to be one of my good days.
In what now feels like a previous life, mornings would have me wandering, blearily-eyed, into the kitchen to fix myself some coffee. After a superleaded cup, my post-weekend weariness would be gone and I’d be ready to tackle my day. But this is my new life, and in my new life, my morning routine has taken a different shape.
On this morning, I pick up a little wooden house stocked with live honeybees and head to the living room, where there’s adequate light. I open the house’s plexiglass sliding door, use a pair of long tweezers to grab the most docile bee I can spot, and drop the loaded tweezer into a specially constructed wooden rack. I repeat this process five more times, then quickly head back to my bedroom, where two mirrors I’ve angled towards each other allow me to see the length of my spine. I pick up the tweezers one at a time, a bee squirming at the end of each pair, and press it to my back, waiting for its burning sting. Within half an hour, the ritual will be complete, and I’ll have gotten my thrice-weekly dose of medicine into my system.
Up until a year and a half ago, I was very physically active. A freelance writer, I filled my days to the brim, working on assignments, biking to faraway yoga classes, running along the broad parkway near my house and hosting impromptu dinner parties. I didn’t know that things would soon crawl to a standstill.
In the fall of 2017, I had just relocated from New York to Oaxaca, Mexico, when I came down with a persistent urinary tract infection that didn’t respond to antibiotics. I took another round of the drugs, and the UTI went away, but my body starting acting up in ways it never had before.
First, I started itching and burning all over. I’d wake up in the middle of the night, my feet on fire. Then I developed digestive issues, reacting to foods I’d eaten my whole life. My fairytale Mexico existence began to unravel as I visited doctors, submitted blood for lab work, and spent days crisscrossing the city looking for increasingly strong antihistamines instead of leisurely strolling in search of street food. Eventually, as my symptoms worsened and my investigations failed to explain what was happening, I booked a flight to New York to seek more specialized medical assistance.
I then doctor-hopped, bouncing from a naturopath who put me on a specialized diet to my general practitioner, who analyzed my blood for vitamin and mineral deficiencies. No results raised any red flags and according to my doctors, I was in perfect health. Meanwhile, my quality of life continued to deteriorate. My most troubling symptom—chronic, unrelenting fatigue—worsened precipitously, and I began spending most of my days in bed.
Confined to my bedroom for nearly 24 hours a day, I had a lot of time to consider what was happening to me. After months of steep decline and zero answers, I started to think about an incident that occurred the summer prior. I had spent a weekend in the Catskills, hiking through the woods and lying in the grass at a friend’s parents’ country home. Always diligent about ticks, we checked ourselves thoroughly each day and plucked off a few stray insects, but I didn’t notice any bites.
But in the days after my return to the city, I became severely unwell. I was plagued by splitting headaches and the same bone-deep fatigue that had now come to define my life. Paranoid about Lyme disease, I sat in my doctor's office about two weeks after that trip as he wrote a prescription for a four-week course of doxycycline, the antibiotic widely used to treat the common tick-borne illness. Within two doses, I was back to my normal self, and never thought about my possible Lyme infection again. Now, though, I started to wonder.
Over the years, I had heard talk of “chronic” Lyme, cases not cured by antibiotics, that led to years or even lifetimes of suffering for those afflicted. But it’s a controversial diagnosis; most mainstream doctors, following the guidelines of the National Institutes of Health (NIH) and the Centers for Disease Control (CDC), say it's not a real condition. The many reasons for the controversy would require a whole other article to explain, but both Lyme patients and so-called “Lyme literate” doctors who specialize in treating the disease believe that it is real.
Chronic Lyme exists, but when it comes to naming it, it’s all in the wording, says Christine Green, a California-based Lyme specialist and integrative medicine physician. “You don’t want to use the term ‘chronic Lyme' because it’s a term that is not only controversial, it doesn't have any diagnostic teeth,” she tells me. “What you can say is post-treatment Lyme disease syndrome, which is defined, and even accepted by the CDC.” Green refers to the symptoms of Lyme that can linger, and even worsen, in about a third of patients who have followed the CDC’s recommendation of a 28-day course of antibiotics.
Something was very wrong with my own health, and I started to wonder if I had indeed gotten infected with Lyme in the Catskills; if so, I could be experiencing a relapse of the disease tripped by all those immune-system-altering UTI antibiotics. I booked an appointment with a Lyme specialist in Manhattan, who ran an expensive out-of-pocket blood test. The day before I was due to receive my results, I slept for 22 hours, waking once to take a bath.
The next morning, I arrived at my new doctor’s office close to tears. All I wanted was to know what was wrong with me. The doctor handed over a piece of paper, my test results, on which he had scribbled, then circled, “chronic Lyme.” The levels of Lyme bacteria in my blood indicated to my doctor that I'd had long-term (not recent or acute) exposure. Doctors who don't believe there's such thing as chronic Lyme would have interpreted the results in a different way, certainly, but I had already wasted more than a year of my life consulting with those types of doctors and felt more than ready to embrace this diagnosis—even if it was a controversial one.
A couple weeks later, I was at home staring at a wooden box full of my new “pets.” Inside the small container, ten honeybees huddled, licking up raw honey. Over the past few days, I had become familiar with the habits of these creatures, and had also grown accustomed to the hot pain of their stings. Immediately after receiving my Lyme diagnosis, I had ordered all the supplies—including the bees, which are mailed to me weekly from a hive in California for $15—to begin bee venom therapy, or BVT, a novel treatment for Lyme. Throughout my nine months of misadventures with doctors who were unable to diagnose my condition, I had lost faith in Western medicine and had chosen to treat my illness with a protocol I had found in the worst place for health information there is: the internet.
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Months earlier, I had been scrolling through Instagram when I noticed a post by a former yoga teacher. Kathryn’s post celebrated her friend Brooke Geahan, who had navigated through a brutal years-long battle with severe Lyme and emerged healthier than she had been pre-illness. I clicked over to Brooke’s account, where she shared raw photos of her past—in a hospital gown, on the verge of sepsis; at home, injecting medication into her own arm—as well as glowy photos of her now, sipping wine and hiking with her adorable dog. After years of expensive Lyme treatments that failed to cure her, Geahan wrote, she had turned to BVT, and was now completely well. Although it would be months before I even started to consider Lyme as a possible explanation for my own symptoms, I was intrigued by Geahan’s story.
Over the next few months, I learned all about apitherapy, and one of its practices of stinging with live bees to address physical ills. Apitherapy has been used for millennia to treat systemic health issues such as rheumatoid arthritis and multiple sclerosis; records show that its usage dates back at least as far as ancient Egypt. Bee venom contains more than 60 identifiable components, over 18 of which exhibit anti-inflammatory and pain-relieving properties. Honeybees die after stinging; a queen will lay up to 4,000 eggs per day, meaning she will repopulate the hive with all the bees used for a Lyme patient’s multi-year treatment in just two days.
By the time I received my Lyme diagnosis, I was convinced that I had no other good options. While Lyme is often successfully treated with a course of antibiotics, this hadn't been true for me. Some research suggests that the spiral-shaped Lyme bacteria—which have the ability to evade antibiotics as well as the immune system by burrowing deep into bone, tissue and the brain—can persist in the body after a four-week course of antibiotics.
Monica Embers, assistant professor of microbiology and immunology at Tulane University School of Medicine, is one of the researchers at the forefront of this area of study. She authored a recent report which studied Lyme-infected monkeys, in whose tissues viable Lyme bacteria were found even after the primates were treated with the CDC-recommended 28-day course of the antibiotic doxycycline. In theory, those isolated bacteria could go on to replicate and make a monkey ill once again. The extrapolation from this study would be that the bacteria would behave similarly in the human body.
In my case, since antibiotics had already failed me once, I didn’t want to try them again—and I didn’t have the money to throw at expensive experimental treatments such as stem cells and cryotherapy.
While bee venom therapy is an ancient treatment, the identification of its effectiveness in treating Lyme disease is novel, discovered by accident eight years ago. In 2011, Ellie Lobel was 15 years deep into a losing battle with chronic Lyme when she decided to stop all her treatments and die peacefully. Three days later, she told Mosaic in 2015, she went for a walk and was attacked by a swarm of honeybees. The dozens of stings Lobel sustained had unexpected effects, clearing her brain fog and alleviating her joint and muscle pain. Lobel dug into the research on apitherapy, but found only one small 1997 study demonstrating bee venom’s ability to paralyze and then dismantle Lyme bacteria.
That isolated study was enough for Lobel, who, through self-experimentation, went on to develop the protocol now used by Lyme patients treating with BVT. Three times per week, ten live bees are applied along both sides of the spine; when they sting, their venom travels along the spinal nerve extending from the vertebra that has been stung. Eventually, the thinking goes, as the entire length of the spine is stung (the course of treatment is two to three years) the bee venom will travel all over the body, seeking out pockets of hidden Lyme bacteria and, ideally, obliterating them. This remains entirely theoretical, as there are no human studies on the effects of BVT on Lyme.
While Lobel and many of the followers she has reached online in her Facebook group started stinging in the absence of much published research on BVT, a watershed study for the BVT community was published in the peer-reviewed journal Antibiotics in 2017. In it, University of New Haven Lyme researcher Eva Sapi and her colleagues tested the in vitro effect of bee venom against Lyme bacteria, comparing it to both standalone and combined antibiotic medications. This took place in a lab and not in the human body, but the results were nonetheless promising, demonstrating the venom’s ability to destroy the Lyme bacteria—which had been isolated and placed in petri dishes—while the tested antibiotics were not fully effective, leaving many “persister” cells that could go on to reproduce and reinfect.
Both Green and Embers were familiar with Sapi’s work, though neither of them is sold on BVT yet. “Just because it works in a culture dish doesn't mean it’s going to work in an animal or in a human,” Embers says. “What does that translate into in a body system? How much would you actually need to get into the tissues?”
Green says that she’s treated a few patients who used BVT over the course of their illness, but that most of them quit before the two-year mark. One of her patients, a man infected with Lyme in 1967 before the disease was even discovered, did complete the course of BVT after he kept relapsing, over and over, when treating Lyme with antibiotics. “He’s now in his mid-70s and he’s pretty healthy,” she says. “I admit, bee venom wouldn't be my first choice of treatment for Lyme, but I absolutely think it’s worth studying in more depth.”
No one wants to sting herself with live bees. The idea sounds nuts; many people are afraid of insects; and between 5 and 7 percent of the population is allergic to bee venom—some dangerously so—which is why we stingers always keep an Epi-Pen nearby. But anecdotally reported success rates, recorded in the "Testimonials" files of the two closed Facebook groups dedicated to BVT as well as on the Instagram accounts of "stingers," are high, even in cases like Geahan’s and Lobel’s, where treatment after treatment have already failed to address the infection.
I’m just four months into my BVT treatment, and so far it’s been a roller coaster ride, with some symptoms flaring in a so-called “healing crisis.” (A healing crisis or "Herxheimer reaction" is when symptoms of a bacterial infection flare up as the condition is healing.) But having been mostly bedridden when I started, I’ve also seen an increase in energy that allows me to get out of the house almost every day, and mental clarity that had gone missing for many months (at my worst, I was unable to read or follow the plot lines of a basic TV show). Though scared, I’m also hopeful, and that’s why for the next two to three years of my life, I’ll continue pressing live bees to my back, and waiting for that hot, healing sting.
Correction: The language around the writer's diagnosis has been updated for clarity.
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This article originally appeared on VICE US.
This article originally appeared on VICE US.