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.
Sorry to hear of your bout with Lyme DS but happy your back to hiking. The DS struck my wife during our AT hike in 2010. Have a rewarding and tick free hike the PCT.
Thank you! I’m sorry that your wife had to deal with Lyme, and I hope she’s fully recovered.
[…] Making Lymeade […]
I posted this on your hiking blog, but then realized it really belongs here. I saw the Kentucky.com story through a Lyme newsfeed. Reading your story was eery for me: that is exactly how my experience with Lyme began, only the tick was in my own backyard, a partially wooded area on southern Puget Sound where I often hiked. I was told the rash was ringworm. A few weeks later I got the “killer flu” that never went away. I experienced the same kind of fatigue that you describe, and then other things started happening. Over the next few years, I lost everything. No one could explain what was happening to me.
Eighteen years later, now living in New England, I learned of Lyme and was able to find a doctor willing to evaluate me for it and confirmed that I had Lyme disease– but was unwilling to treat for it. I self-referred to a well-known Lyme specialist, Dr. Richard Horowitz. This was in early 2002. Because of the length of time I’d been infected and the degree of my disability, it took months of treatment and physical and cognitive therapy to get back to a functional state. I credit Dr Horowitz and his staff with turning my life around.
When I went back to work, it was a dream come true, because I was able to work outdoors, in the mountains, my favorite place to be. My dream since then was to hike the Pacific Rim trail as a Lyme fundraiser, but something odd happened. After spending my entire prime and middle years either sick with undiagnosed Lyme, or recovering from it, I suddenly discovered I am old! A relatively healthy old, but at 72 years of age, it is not likely I will be able, short a miracle, to live my dream of hiking the Pacific Rim from border to border, even in segments. (I’d hiked parts of the Northern trail in CA, OR, and WA in younger days),
So I am excited to hear of your plan to do what I wish I could do: hike that beautiful trail for Lyme. Yes, it is a challenging trail, but a magnificent accomplishment. I would love to be there when you finish. Perhaps I can be: my brother, knowing my wish, is willing to drive me there after I fly out. Let me know when! I’ll pass my green flag to you.
Thank you so very much for sharing your story, Annie. It gave me goosebumps and brought tears to my eyes. In the time since I was diagnosed with Lyme, I have found so many people whose lives have been affected by Lyme Disease. If my own experience weren’t enough to teach me that every day I feel healthy is a blessing, connecting with so many other Lyme fighters sure is!
I noticed your sponsorship of my hike on Hikefor.com. Thank you! I am so appreciative of your support, and I’m sure ILADS will be, too.
I would feel honored to meet you in Washington. I should be there at the end of August (perhaps the 27th?) so that I can head back to the east coast in time for orientation. If it ends up being a big snow year in the Sierras, I might be skipping them, hiking to the end of the trail by early August, and then spending the rest of that month hiking the miles I’d skipped. So, that’s a bit up in the air, but I’m hoping to be able to nail down some details closer to the hike, as the snow reports come in. I’d love to stay in contact with you and see whether we can meet up. Please feel free to email me at email@example.com.
I wish you the very best, and I’m looking forward to connecting!
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Looks like a no-snow year in the Sierras! And if you make it to WA in August , good chance I’ll be there too. More info privately. I’m excited for you and for me too. It will feel good to be back in the mountains I love.
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Small shout out for you: https://lymemargarita.wordpress.com/advocacy_events/ I think it’s fantastic that you are doing the PCT for ILADS. I’m going to live vicariously through you! The pics I’ve got up on my blog are mostly from Ross Lake on the PCT. It’s freaking amazing. You are going to love it. We only did an overnight trip with hiking in North Cascades … but the whole PCT is a dream. Go girl!
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Thank you! I’m thrilled and so grateful to be able to hike it. I’ll check out your pictures! As an east coast hiker myself, I’m really looking forward to geeking out about the different trees and flowers and critters out there. I can’t wait!
[…] Making Lymeade […]
Just found your blog(s) while prepping for an AT walk in the future. Lyme is a great concern. I’ll be 67 or 68 when I begin and among all my other age related “pains in the neck” is Lyme. The Child Bride’s lifelong friend and a woman who was in our wedding (38 years now) lost several years of her life to Lyme years ago when it went undiagnosed for way too long. It has left its mark on her life even after all the years have passed. Snugged in next to me is our Maltzu, Annie, who went through a near death bout with Lyme a few years ago. Her vet figured it out and saved her but the disease came back a year later. She is the toughest 8 pound ball of fuzzy dog and pulled through. She is almost 13 now and can stay with me for most of my training walks.
Please enjoy your walk and thank you for bringing this disease to light.
I am watching several pctr’s online this year and am planning on feeding as many as possible when you get to the north end of Washington State. I don’t live on the trail (rather Bellingham) but I do live close to the trail, close enough to bring food. Following your steps until then, Monique
Wow, that’s amazing! Thank you for being so kind to us hikers!
[…] Making Lymeade […]
I am a fellow #LymeWarrior and newcomer to your blog, and HikeFor page. I am so sorry to learn of your recent relapse. I will be keeping you in my thoughts and prayers, and wishing you rest and renewed health. Thank you for the 900 miles you were able to push your body through, not only for yourself, but to help raise funds and awareness for ILADS.
I am 38years in to my battle with Lyme Disease and co-infections. I will not get into my lengthy journey here, but I am working on my “true-grit” story to, hopefully, share soon. In the meantime, to help me cope with my ongoing battle(s), I recently started a blog, which serves as therapy. My posts are, the real day in the life of a Lymie, but also tend to be a bit more lighthearted. Humor is good for the soul! My site is http://www.colormelyme.net should you wish to follow along, or perhaps even share with others.
Blessings and Keep Fighting – #onedayatatime !
Thank you for the kind words and for the link to your blog. I will definitely check it out!
The support and encouragement and friendship I’ve received from the Lyme community continues to touch me deeply. This is such a polarized, politicized, and isolating illness, and I feel so grateful for the way the Lyme community reaches out to each other. Thank you.
Wishing you strength and peace on your healing journey,
[…] hour after I’d begun my detour, I checked myself for ticks at the railroad tracks, passed the “zoombies” warning again, and headed back to Tiebas, […]