My Story, Part II: The Relapse
Picking up from part one of my introduction, in September of 2017, after a possible “close call” with Lyme disease, I packed my bags and hopped on a one-way flight to Oaxaca, a moderately-sized city located in southwest Mexico. Having first visited this colorful, temperate, and packed-with-delicious-foods destination on a community service trip when I was 19 years old, I had become smitten with Oaxaca at first sight, and continued to visit throughout my 20s. I had spent December 2016 in the city as a trial run to see if I wanted to move there—before the weird illness debacle of the summer of 2017—and the answer was a resounding yes.
So there I was, back in the city that had stolen my heart so many moons ago, preparing to stay for at least a year—or so I thought. In my previous post, in which I shared my history of robust health prior to the brush with acute Lyme, I didn’t have the space to mention one particular condition that plagued me all throughout my teens and 20s: chronic urinary tract infections, or UTIs.
Appearing in my life almost as soon as I became sexually active at the age of 17, UTIs decided to stick around—indefinitely. I distinctly remember the first time I got one: I was visiting my high school boyfriend at his college in Minnesota during the first semester of our freshman year, right before our relationship imploded, and we were sitting in the school auditorium waiting for an Indian classical music concert to begin. I felt a stabbing pain in my urethra and was unable to sit still; the next day, in the school’s health center, I described my symptoms and submitted a urine sample for culture. The results showed a clear UTI, and I was given a few days’ worth of antibiotics.
As I mentioned in the last post, during this time of my life I was pretty much ignorant to most aspects of human health, and had no idea that antibiotics could be damaging in any way. The very first pill brought sweet relief, and the memory of the UTI soon faded—until I got another, and another, and another one. Pretty much any time I slept with a new sexual partner, I would get one of these painful infections, and by that point I knew to go straight to one of those urgent care centers that were becoming popular at the time—not even a doctor’s office—to grab a bottle of antibiotics.
For reasons that are unclear to me in hindsight, I never felt compelled to look into why I might be getting so many UTIs, nor to research ways to treat them naturally. Sure, I would try to chug water or unsweetened cranberry juice during the first couple of days of symptoms, but when the pain became too great, I would succumb to the antibiotics without giving them a second thought.
That was before the proverbial straw that broke the camel’s back, at least. Back in Oaxaca after my brief bout with Lyme in the U.S., I was living the life of a young-ish solo traveler; that is to say, meeting lots of new people, making friends, and going on dates. Unsurprisingly, the day after a one night stand with an attractive restaurant chef, boom: Another UTI. Another trip to get antibiotics…And that is when my life truly fell apart.
Shortly after beginning the course of antibiotics, I began to experience bizarre bouts of intense itching on my scalp, in my genital region, and in my armpits. Soon, the itching was joined by sensations of burning and pins and needles all over my body, so intense that I couldn’t sleep at night and would lie awake scratching at various parts of my body. I remember that this incident occurred shortly before Oaxaca’s world-famous celebration of the Day of the Dead, when the whole town is bedecked in beautiful, fragrant marigold flowers, and area cemeteries remain open all night in order for the deceased to receive visits and vigils from the friends and family members left behind. I had booked a touristy night tour of the various cemeteries and celebrations for both November 1 and 2, and both evenings were excruciating to get through, plagued, as I was, by sleeplessness, itchiness, and an increasing level of unease.
Although I had finished the course of antibiotics for the UTI—which I didn’t, at the time, link to my symptoms—the situation continued to intensify. At all waking moments, I felt like my skin and even my muscles were itchy and inflamed, but I had no visible rash nor any other symptoms that would point to a specific problem. Then, I started having reactions to all kinds of foods I had always eaten with no problem; randomly, things I consumed would make the insides of my thighs seethe and burn, and the sensation would last for hours. Confused and frightened, I saw a couple of local allergists and also ran some basic blood work, but everything came back normal and no one had any idea what could be wrong.
What had started as a fun, exciting trip into a possible future life abroad in Mexico was unraveling by the day. Unable to focus on anything other than my rapidly declining health, by mid-December of 2017, I was forced to throw in the towel and return to New York to try to figure out what the fuck was happening to my body.
Back in New York, I was briefly forced to move back in with my aging parents, seeing as how I had sublet my own apartment during the time I would supposedly be abroad. From this home base in the swanky neighborhood of Brooklyn Heights, I kicked off what would turn out to be many years of researching human health and learning its fundamentals from the ground up.
Seeing as how my symptoms had started in a different country, I dug into this health mystery, first, by seeing an infectious disease specialist, who tested my blood, urine, and stool for every imaginable transmissible disease as well as for parasites, which were, at the time, my working theory for what was going on. In a pattern that would soon become familiar to me, the results indicated nothing out of the ordinary.
Moving on, I began working with a naturopath, as it was becoming increasingly clear to me that western medicine was not equipped to handle off-the-beaten-path health problems like mine. Working with her, one pattern became increasingly salient: My robust history of antibiotics usage. As this doctor explained to me for the first time, antibiotics do not discriminate: They annihilate “good” gut bacteria as well as “bad,” upsetting the delicate balance of the gut microbiome. This extremely complex and diverse environment—home to up to 1,000 species of bacteria that cooperate to keep the immune system healthy and robust—relies on this diversity to work as it should. And when species are killed off by antibiotics, the consequences can be lifelong. The naturopath explained that the two recent courses of antibiotics—the super-long one, which I took for Lyme, and the shorter one, which I took for the UTI—could have tipped my immune system into complete dysfunction, which could help account for the bizarre and varied symptoms by which I was now plagued.
Going headlong with this diagnosis, I applied the principles of “gut rehabilitation” assiduously. I began a fairly strict, paleo-type diet known as the GAPS diet (or Gut and Psychology Syndrome, so named for its ability to reverse gut-brain syndromes such as autism); my kitchen, back in my recently vacated Crown Heights apartment, became a laboratory as I sweated over simmering bone broths, massaged sea salt into cabbage to produce sauerkraut, and stirred rubbery kefir “grains” into raw milk to create the tangy dairy drink. The theory behind all this kitchen labor? That by stripping hard-to-digest items such as starches and raw vegetables from my diet, and loading up on healthy animal fats and bacteria-rich fermented foods, I could begin to rebuild the healthy, balanced environment in my gut that the antibiotics had likely decimated.
I’m thankful to that period of time as the beginning of my education in real nutrition, but the fact was, for all the work I was putting in and all the money I was spending on whole, organic ingredients, I wasn't getting better—in fact, I seemed to be growing worse by the day. My itchy, inflamed skin wasn’t settling down at all; now, throughout the day, I had to slather it with both over-the-counter and prescription creams that dulled and numbed the most sensitive areas. One of my most uncomfortable symptoms continued to be the odd and extremely intense burning sensation on my thighs, which tended to kick in at night when I was trying to sleep, and, worst of all, the dull, bleak, inescapable chronic fatigue I had experienced before moving to Mexico was slowly creeping back into my life.
For someone who hasn’t lived the deeply disorienting experience of descending into chronic illness, it’s hard—perhaps impossible—to understand the depths of despair you encounter in that place. Now 32 and supposedly in the prime of my life, my days consisted of navigating around my symptoms, obsessively reading about health online, and contacting all manner of doctors. My next visit was to a rheumatologist, since I had been told by several people that it was “common” for women to develop autoimmunity in their early 30s, and getting my blood drawn for a whole new battery of tests. Yet again, the results indicated pristine health, with the elderly male doctor gently suggesting that perhaps anxiety and depression were to blame for the increasingly erratic ways my body was functioning.
During those long, lonely days and nights of solitude and confusion, I once again took to the internet. And though I don’t remember exactly what spurred me to do so, I started to read about the concept of “chronic” or “post-treatment” Lyme disease: Cases of the infection that are not resolved by antibiotics, but can in fact seem cured initially, only to “relapse” after certain stressors or immune-disrupting events (like, say, a course of antibiotics). Online accounts from seeming legions of “chronic Lyme” sufferers told dark and scary tales of years and years of expensive and invasive treatments that provided only temporary relief at best, with frequent relapses of their condition and days spent managing symptoms such as migraines, joint pain, and indigestion.
Slowly, my mind came around to a possibility that had at first seemed remote: Could the “new” symptoms I was experiencing since Mexico be, in fact, caused by the same case of Lyme disease I had “cured” the previous summer?
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