The good news: I’m speaking to you from a place where I feel pretty damn good the majority of the time—not perfect, but good. So if you’re currently dealing with Lyme disease (or what you suspect is Lyme), I want my story to serve as motivation to stay the course and continue exploring treatments and lifestyle changes until you find a combination that works. Personally, I don’t remember a tick bite, and like many Lyme sufferers, I never got the bull’s-eye rash or flu-like symptoms so often touted as “classic” signs of Lyme disease. Instead, my whole ordeal began with a sharp, stinging sensation in my left ankle after a day of walking in New York City, where I’d just begun my first “big girl” job. It hurt, but I didn’t think much of it, and about a week later I was told I had tendinitis that would resolve relatively quickly. But then my other ankle started to hurt, and after a few months, the pain extended to the bottoms of my feet, my knees, and even my arms. Sometimes it would feel like electric currents were running through my toes when I stood up. After a while, I began to question my tendinitis diagnosis, but after about five “second opinions” and countless tests (even a test for Lyme that came back negative), doctors had no real explanation for what was going on. In the words of one of my least favorite doctors, “There’s nothing else I can do for you.” Not long after that, my symptoms became all-consuming. It was impossible to even stand up for more than a few minutes, and the pain throughout my legs and arms would literally wake me up at night. I ended up quitting my job in NYC and moving back in with my parents. Things looked bleak, and I began to question if I’d ever feel like an active, independent, self-sufficient adult again. Eventually, though, a physical therapist I was seeing recommended I explore the possibility of Lyme further. He was the first person to explain to me that the commonly used diagnostic tests for Lyme are notoriously insensitive , sometimes resulting in false negatives, and that if I wanted a more comprehensive workup, I should seek out a Lyme specialist (referred to as Lyme-literate doctors, or LLMDs for short). So I booked an appointment with an LLMD affiliated with the International Lyme and Associated Diseases Society (ILADS), and that’s when I finally got some answers. After relaying my lengthy medical history to my new doc, he suspected I was dealing with chronic Lyme disease. Given the way my symptoms presented (i.e., seemingly at random, with no tick bite or rash in recent memory), he said I had probably contracted Lyme years earlier—potentially in childhood, even though I had no symptoms back then. That’s because, he explained, Lyme can actually lie dormant in your body for months or years—kept at bay by a well-functioning immune system—and only when immune function becomes disrupted for some reason (e.g., environmental toxins, poor diet, excessive stress…say, caused by an intense new job in a new city) do symptoms then pop up. This certainly isn’t the case for everyone. Some people notice acute Lyme disease symptoms immediately following a bite, receive antibiotic treatment, and are cured—but many others aren’t so lucky. After sending out my blood work to a lab specializing in more comprehensive Lyme testing (called IGeneX), my results were still somewhat inconclusive, but they weren’t definitively negative either. Based on this and the characteristics of my symptoms, my doctor made a clinical diagnosis of Lyme disease, and I decided to move forward with treatment. Because I’d likely had Lyme for years by the time I began treatment, it took some time for me to notice any results. But soon, there was no question the drugs were working. After three months, I had less pain; after six months, I could walk around the block (no small feat for me at the time); and after nine months, I could go on a 2-mile hike. All told, I was on this combination of antibiotics for about two years (plus loads of probiotics to help prevent them from decimating my gut), after which I felt completely symptom-free—something I never, ever expected. And I felt pretty great for about a year. But then I’d start to feel a bit more achy than usual after walking; my ankles and knees would get red, hot, and painful; I started to notice that old tingling sensation in my arms and legs; and eventually, I was struggling to walk again. My Lyme was re-emerging even after lengthy antibiotic treatment—and apparently, that’s not uncommon. This, I’ve since learned, is partially due to the spirochete (or corkscrew) shape of the bacteria that causes Lyme disease (Borrelia burgdorferi), which allows some forms of the bacteria to essentially burrow deep into your tissue and lay dormant only to re-emerge later when conditions are more favorable. In fact, a study in 20151 demonstrated that Borrelia spirochetes can persist in the body despite even six months of antibiotic therapy in patients with chronic symptoms. And some doctors, like Lyme expert William Rawls, M.D., have found it’s not uncommon for people diagnosed with Lyme disease to develop chronic symptoms six months to several years after antibiotic therapy, even if the symptoms cleared initially after a course of antibiotics. My initial reaction: Oh shit, I better get myself back on some antibiotics STAT. So I paid my doctor another visit and he wrote me up some prescriptions. Unfortunately, my body didn’t react as planned. This time around, I developed more severe gastrointestinal symptoms than before (despite taking all the probiotics). I also experienced an extremely rare side effect of tetracyclic antibiotics (which include doxycycline, minocycline, and tetracycline) called intracranial hypertension2. Essentially, the cerebrospinal fluid surrounding my brain was not circulating or draining quickly enough, causing it to build up and put too much pressure on my brain, which resulted in some pretty intense headaches and dizziness—over time, that pressure can even result in blindness. No thanks! For me, that discovery was enough to make me completely reevaluate my Lyme-management approach and stop antibiotics going forward. I wasn’t about to jeopardize another aspect of my health (especially my vision!). Plus, I’d been hearing more success stories of patients curing (or at least successfully minimizing and managing) their chronic Lyme with natural approaches, including herbs and lifestyle changes. So I stopped antibiotics and got to Googling my next doctor. To start, she put me on a supplement protocol to help cover all my bases and give my body and immune system the basic tools it needed to start working (and healing) more efficiently. This consisted of a high-quality multivitamin (containing additional nutrients like green tea, broccoli seed extract, and resveratrol to help improve mitochondrial function), a probiotic, a multi-mineral, fish oil, curcumin, and magnesium. None of these immediately led to game-changing results, but based on everything I know about the science-backed perks of these nutrients, I was confident they were helping support my body. After about a month, we added an herbal supplement called Cat’s Claw (Uncaria tomentosa) to stimulate white blood cells and support immune system functioning, along with my doc’s favorite supplement for combating Lyme, monolaurin. Monolaurin is essentially a concentrated form of lauric acid—a compound found in coconuts and coconut oil—that acts as an effective but gentle natural antibacterial3, antiviral, and antifungal agent. These properties can make it a beneficial addition to someone’s Lyme-healing protocol, helping fight off pathogens that cause Lyme and a variety of common Lyme co-infections. These co-infections—other diseases carried by ticks—can include Ehrlichia, Anaplasma, and Bartonella and need to be addressed for any Lyme treatment to be complete. Of course, I was skeptical that these new additions to my supplement rotation would make much of a difference, but after a few days on the monolaurin, my feet and legs began to itch—and after my doctor ruled out an allergic reaction, she suggested that this could be a symptom of bacterial die-off thanks to monolaurin killing off pathogens in my body. Meaning, things were most likely working. We scaled back my dose a bit so I wouldn’t be miserable but then slowly increased it again, and after several months, I began to notice a slow but sure improvement in nearly all of my symptoms. Again, I need to emphasize that results were slow—there’s no immediate magic bullet when it comes to chronic Lyme—but they were real. I can’t credit my supplement regimen alone, however. At the same time, I also started working on my diet. My doctor, who also happened to be a registered dietitian, told me that some of her patients had success on paleo and keto-style diets, since refined carbohydrates can contribute to inflammation and cause Lyme symptoms to flare. So I focused on cutting out unnecessary sugars along with prioritizing a variety of non starchy veggies and high-quality fats and proteins from sources like salmon, grass-fed beef, nuts, seeds, and avocado. I also started going to physical therapy so I could get back into exercise in a safe, sustainable way without injuring myself further—this was key, considering most of my Lyme symptoms were musculoskeletal, causing flare-ups in my ankles and knees that made it difficult to walk. Plus, being too sedentary is actually associated with immune dysfunction and retention of toxins, two things that can worsen Lyme symptoms. Additionally, my doctor talked to me about the importance of managing stress and prioritizing sleep for maintaining healthy immune function and hormonal balance. And during a particularly stressful period in my life last winter, she helped me figure out that my chronically elevated cortisol levels were causing my progesterone levels to drop and contributing to flare-ups in my Lyme symptoms in the days leading up to my period. (It’s all connected, folks!) One of the most valuable things I’ve learned from my holistic doctor (and from a variety of holistic Lyme practitioners I’ve interviewed since) is that healing from Lyme is an ongoing process, and it cannot happen with one isolated drug, supplement, or therapy. It requires tuning in to your body and adopting a variety of health-promoting strategies that, together, strengthen and protect the immune system so it can keep harmful pathogens in check. But all that said, I actually don’t regret my initial antibiotic treatment. Because it was so effective for a period of time, it helped confirm that what I was dealing with was, in fact, Lyme disease. And although this theory isn’t science-backed, part of me feels like I needed the “big guns” to get over the initial hump since my symptoms were so all-consuming. All in all, they were a valuable first step in my personal healing journey, but everyone’s journey is different. If you personally suspect you’re struggling with chronic Lyme, I recommend seeking out a doctor whose treatment approach aligns with your values. As I’ve noted in previous articles, practitioners can have drastically different approaches (some strictly use antibiotics, some use a combo of antibiotics and herbs, and some use solely natural herbal protocols), so it’s important to ask questions and make sure you’re comfortable with their approach before booking an appointment. The LymeDisease.org physician referral tool can be a useful resource for finding a qualified doc in your area. And no matter how hard things get, know that once-hopeless people like me have gotten better. It takes time, but it can happen, and it may not be the exact same protocol that worked for me. So keep tuning in to your body, prioritizing your needs, and being your own advocate until you find an approach that works for you.
