My story, my adventures, and my art would not be what they are without the Lyme-colored glasses I’ve worn for most of my adult life.
On the Appalachian Trail in 2011 – five days after I graduated college – I was bitten by the tick that gave me Lyme Disease. For the first couple of years after my bite, I didn’t really notice my increasing dizziness and susceptibility to illness. That all changed when I came down with mono in September 2013.
From September until April 2014, my friends and family watched me deteriorate. While there were periods of remission over the course of that time, I spent most of it in bed. I slept up to 20 and rarely fewer than 12 hours each day. My muscles, which had taken me through Maine’s Hundred-Mile Wilderness in early September, grew so weak that I was unable to lift even my water bottle, and they twitched and ached. They were also all-to-easy to pull. I had a migraine that was so painful that I spent 10 days in a dark room. I was always dizzy, my knees and elbows were sore, and I cried often and inexplicably. My brain grew foggier and foggier until I struggled to make decisions, recall words, understand novels, or separate reality from my dreams, which were rather bizarre. I had a couple ambulance rides and frequent emergency room visits. By April, on top of the aforementioned symptoms, my skin was tingly, my vision was occasionally blurry, sunlight nauseated me, and I battled anxiety and panic attacks.
Two months of antibiotics (and abdominal surgery) saw my health improve in a step-wise fashion until, in June, I was able to stay awake for 14 hours each day, shampoo my own hair, and walk a couple slow miles on the road. From that point, my rehabilitation was rapid: By July, I was back at work; by August, I was hiking; by September, one year after I’d become ill, I was backpacking again. Every day I spent outside of bed felt like a miracle.
In January 2015, I tried to ignore the warning signs, the tell-tale twitches and tiredness. By February, that wasn’t possible: Lyme was back.
I beat off that relapse long enough to attempt a thru-hike of the Pacific Crest Trail (to raise funds for ILADS, the International Lyme and Associated Diseases Society). But, the combination of bartonella in my bone marrow and the demands of altitude proved too much: I was forced off trail because of another relapse in July.
The next six months were deeply painful – physically, emotionally, and mentally. I felt utterly hopeless. My physicians, also confused and frustrated, had me tested for everything from leukemia to MS before throwing up their hands. I couldn’t afford to see a “Lyme-literate” doctor, and the alternative medicine that many practiced scared me away even more than their price tags. I wanted answers. Eventually, I learned, I would need to find them myself.
I poured myself into Lyme research, and I read the scientific literature widely. I came to understand that there are two varieties of peer-reviewed articles about Lyme, based on whether the studies’ scientists use the CDC’s screening criteria or physicians’ clinical diagnoses of Lyme.
Then, because I couldn’t afford other treatment, I dove headfirst into the world of herbal medicine, following Stephen Buhner’s protocols from January 2016 onward, with the supervision of my PCP. At first, it was a bumpy ride; there’s a learning curve, especially when you’re primarily self-doctoring. I found that sida acuta strongly disagrees with my weakened right kidney, while olive leaf extract just disagrees with me in general. To this day, I jot down any symptoms each day, just to make sure I don’t miss something and to ensure that I change things up as needed.
But, here’s the amazing news: I’ve been virtually symptom-free since March 20.
Every time I think about how far I’ve come, I have to pinch myself to remember that this is real. To be honest, I feel healthier than I have in years; I’m no longer the first one in a group to get sick, my joints are generally pretty happy, and even cuts on my skin rarely become infected. I feel 21 again! When I walked across Spain in Summer 2016 (a “safer” trail to test my health), I celebrated the chance to dream about the future again.
I’m not ready to let down my guard yet, and there are many Lyme Fighters whose battles are far from over. To make matters worse, treatment can be difficult to obtain and expensive to fund. Lyme is a polarized and politicized disease, and the information available regarding treatment protocols varies widely. According to the CDC, I never had Lyme, but, if I did, it would have been cured after taking the antibiotics I finished in January 2014. We desperately need updated treatment guidelines, as well as more education and research.
I am very interested in starting a Lyme advocacy network for outdoor enthusiasts. If you’d be interested in being part of these efforts, please send me a message at firstname.lastname@example.org.
Update: Summer 2020
After recovering from my last Lyme relapse in 2016, before I walked the Camino, I was healthy for two wonderful years. In that time, I launched my art career and had some amazing hiking adventures. In 2018, I began dealing with chronic nausea and what I called dizziness (but now know I should have described as “presyncope”). Still, as I started running ultramarathons, my symptoms existed as little more than a background annoyance.
In March of 2019, I set out on the Arizona Trail for a thru-hike that would culminate in a 50-mile race. It should have been a challenging but empowering undertaking. Instead, it resulted in my reunion with chronic illness.
After a traumatic experience on trail scared me enough to send me high-tailing it home, my nausea and dizziness erupted into a full-blown dysautonomia. Suddenly, I struggled to get out of bed in the morning. I couldn’t stand long enough to do simple tasks like washing dishes or folding laundry–let alone creating felted art. If I stood still, my heart rate would shoot up, my legs would start shaking, I would start sweating, and I’d begin to lose my senses of sight and hearing–the tell-tale warning signs that I learned the hard way (pun intended) meant I could pass out any minute. I could stop the symptoms and feel perfectly normal by lying down. But, upon standing again, the symptoms would come rushing back.
Ironically, while I couldn’t stand still, I could run and walk long distances. In 2019, I struggled to sit or stand long enough to create art, but I completed a 100K ultramarathon, along with plenty of other ultra events.
With time and research, I came to understand what was wrong with my body, and I made a list of possible solutions. One by one, I put them into practice. And, incrementally, I began to get better. I began paying serious attention to my electrolytes: I took a couple of salt tablets upon waking, and I drank an electrolyte beverage throughout the day. I put the head of my bed on risers to create an inclined sleeping platform. I began sleeping with a CPAP, which ensures that I get quality sleep. And, the movement that I’d already considered magical began to take on a medicinal quality. When I’d feel like an episode was coming on, rather than lying down, I’d force myself to take a walk or use a stationary bike for 20 minutes. Finally, I nurtured myself mentally and emotionally and did the psychological work necessary to heal the trauma that had set off my autonomic nervous system.
I’m sharing this story here for other chronic illness warriors–not because the things that I have done will work for everyone but because I hope that my story offers hope. For more hopeful stories of spoonies, I encourage you to check out my other passion project, Chronically Badass. And, as always, please reach out if you have any questions or if there is anything I can do to help you.