Lyme Disease

CT #3: Remission

In June 2015, Pine Nut and I took a PCT zero day to follow the side trail to Mount Whitney, the tallest mountain in the Lower 48. While Whitney was incredible, I spent the whole day feeling rather physically miserable — in sharp contrast to Pine Nut, who spent the following day waxing poetic about hiking Whitney and wishing everyone could experience the wonder of that hike.

Tonight, tucked into my tent at 10,000 feet, still thinking about the beauty I saw higher in the mountains today, I’m wondering whether on my hike of the Colorado Trail I might glimpse the hiker’s high Pine Nut was riding. At this elevation on the PCT, I was already a hurting unit; here, I think I’m acclimating well.A big part of that magic, I believe, is the fact that I’ve gotten my Lyme and bartonella infections under control: Today, I’m 17 months healthy!


During my years of relapsing Lyme Disease, I spent 17 months in bed; there’s something wonderful to the symmetry of having a remission stretch that long. (Of course, I’m totally up for ditching the symmetry next month and continuing to celebrate health.)

When I think back on these 17 months, I think what surprises me most is the pace that life is moving at. I’ll regularly think of something that feels as though it happened ages ago and then learn it was only last year.

If I may share, since Lyme went into remission, I’ve walked a dabbler of Caminos in France and Spain; visited my sister in Wales and in Vienna; enrolled in a post-bacc program in Kentucky, and then decided that it wasn’t for me right now; become a professional artist; launched my own business; spent a season growing and planting trees in Vermont; shown my work at a gallery in Kentucky and fine art festivals in Kentucky and Ohio; hiked all 46 4,000-footers of New York; and set off on the Colorado Trail.

Briefly: This is why we need cures. People deserve to be able to dream and plan and hope.

Sometimes, I wonder whether my doing so much is a response to my having such little control for the Lyme years. I certainly know that it was Lyme that taught me to embrace the now, to make the most of the good days. Being able to have the energy to get out of bed in the morning is miraculous, and it’s something I still don’t take for granted.

I wish I could go back in time to some of my darkest Lyme hours and explain to myself that there would be days like this ahead. Days where storm clouds part to reveal mountains guarding a high-elevation meadow. Days where dozens of squirrels dash about, each holding a mushroom in its mouth. Days where morning starts with a sunrise and dusk falls beside a little stream.

Colorado Bound

If you’d told me when I was hitching out of the Sierras in a Lyme stupor back in 2015 that I’d find myself above 10,000 feet again, I’d probably have laughed. (Or yawned. Laughing would have taken too much energy.) Sitting here, on a plane rapidly approaching Denver, I can’t believe I’m returning to the west’s giants.

In a couple of days, I’ll set off on the Colorado Trail. It’s a journey that I’d contemplated for years, but it had felt out of reach until recently. After the bartonella-induced reticulocyte snafu of the Sierras, it took me a while to decide to give high-elevation hiking another chance.

And, here I am. I feel healthy and strong. I feel toughened from a season of tree planting and then of hiking the Adirondack 46-ers, my newfound loves. Rocks and roots and mud and bugs and trailless peaks can’t scare me! But, I shouldn’t see much of any of those in late summer on the Colorado Trail; instead, it seems the primary challenge will be the elevation that disagreed so strongly with my Lymey body a couple of years ago.

I wonder whether it’s precisely the height of Colorado’s peaks that has elevated them in the imaginations of outdoor enthusiasts. Nowhere in the contiguous United States is there such an impressive collection of high peaks. Here, the mountains are young, so unlike the venerable Appalachians I consider home.

From the skies, the approach to Denver is incredible, with sharp peaks piercing the sky. This is the land of adventure, where backpackers and hikers and climbers are everywhere and advertisements attempting to catch our attention are just as ubiquitous. At least in this way, I’m among my people.

I’ve kept calm while getting ready for this trip — focusing instead on the Adirondacks and art festivals and road trips that had preceded it. I’ve delayed or avoided much of the planning and research and have built into my trip ample flexibility, in case health necessitates it.

But now, seeing the silhouetted peaks on the horizon, I can feel my pulse quicken. I can’t wait for the next few weeks.

Off the PCT

My final day on the PCT began inconsequentially, save for the Lyme trifecta of dizziness, tiredness, and nausea I was experiencing. I packed up and hiked down to Rae Lakes, enjoying again the spectacular lakeside trail. Near the Rae Lakes ranger station — where friendly Sam Webster was stationed — I marveled at the tranquility of three sleeping deer. I thought about my likely-imminent departure from the trail. How I would miss this wilderness!

Although the forecast had called for afternoon storms, I was only one mile into my hike when the skies opened up. For a few moments, there was just a light, cold rain, but soon the hail began falling.wpid-2015-08-01-06.03.55-1.jpg.jpeg

As I mentioned a few days ago, this hailstorm was unlike any storm I’d ever before experienced — and I’m from the unpredictable East Coast. The hail began falling and kept falling…and falling…and falling. I’m used to hailstorms accompanying warm rain in summer storms or the tumultuous air of spring frontal systems; I’m accustomed to hail falling briefly before giving way to rain. This hailstorm was a nonconformist: It hailed for 90 minutes or so and left inches of hail on the trail in its wake.

Throughout the storm, thunder resounded in the valley and lightning lit up the sky. The sparse tree cover overhead and nearby lakes didn’t exactly make the trail a safe place to be; however, I kept walking, remembering that denser tree cover awaited as I approached Woods Creek.

Crunching hailstones beneath my feet, I descended lower in the valley. By the time I was thoroughly chilled from the ice that fell from the sky, the ice was replaced by rain, a bitterly cold rain whose cold seeped through clothing even when its moisture did not. I traipsed through the increasingly green wilderness as I neared Woods Creek, wet and numb.

I fleetingly considered climbing Pinchot Pass after making it down to Woods Creek. I think my reasoning had been that the effort expended during an ascent would warm my core, but it seems more likely that the thought wasn’t reasoned at all. As I arrived at the Woods Creek Campsite, I recognized Ranger Webster through the rain.

“Has anyone come over the Pass today?” I asked, waving a numb hand toward Pinchot.

“Not since early this morning. I’m getting reports of a good bit of snow up there.”

Fortunately, the threat of snow travel made my brain surrender its idea of hiking over Pinchot. I accepted the fact that my day’s hike would be over after only seven downhill miles and began the challenging task of erecting my tent in the rain with immovable fingers.

After a good half-hour spent thawing my fingers and making campsite-creating progress in a stepwise fashion, my tent was up. As quickly as I could, I stripped off my rain gear and crawled into my tent and under my quilt.

The rain kept falling fast and furiously, and soon even my previously-dryish campsite became a shallow lake.   I hid under my quilt, willing myself to be warm.

Sometime in the afternoon, the weather broke.

wpid-2015-08-01-06.03.59-1.jpg.jpegEventually, I mustered the energy to take my belongings out of my tent and pack and set them in the sun to dry. Forty-five minutes later, the sun went away as more storm clouds moved in. Stumbling around the expansive campsite, I set up my tent on a drier patch of ground and crawled back inside.

It was 24 hours before I worked up the spoons (or, as thesweetadventurer said, “the titanium sporks”) to even consider leaving camp.

I spent most of that time sleeping and, if I’m being honest, feeling sorry for myself. I was below 8500 feet now; I still felt miserable, and my symptoms couldn’t be written off as signs of altitude sickness. I was definitely, positively, undoubtedly, absolutely dealing with a relapse of Lyme disease, a relapse that was definitely, positively, undoubtedly, absolutely forcing me off the PCT and back to bed. When I wasn’t sleeping, I was crying.

Then, sometime just before noon on the 10th, I realized how very ridiculous I was being, wallowing in self-pity. Yes, I was going to get off trail; yes, my plans were going to change again; yes, I’ve spent 13 of the last 23 months in bed. But, those 13 months haven’t been completely lost, and the other ten have been some of the most spectacular of my life. And, here I was, in a truly beautiful place. The sun was shining down all around me, the pendulous branches of the foxtail pines were swaying in the breeze, and the roar of Woods Creek filled the air. I began crying with gratitude — both for that moment and for the months I’d spent in the wilderness of California.

An hour later, I was ready for the slow, painful trek to Road’s End. I crossed the suspension bridge again, took a picture of the 800-mile mark again, and turned off the PCT and onto the Paradise Valley Trail again. With a pack-ful of memories of a wonderful hike, I was ready to head home.

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On the PCT: Kearsarge Pass, Take Three

My final foray on the Pacific Crest Trail this year was dramatic, to say the least.

After the Lyme relapse that sidelined me, I was feeling well enough that I wanted to get back on the trail by the second week in July. I spent a day bustling around Teresa and Laurie’s home, preparing to hike again: There was food to be packed and food to be eaten; Doxycycline-approved clothing to wash and Rainbow Dash-approved clothing to send home. Excited to be going back to the trail, I happily had my last night in an amazingly comfortable bed, watched my last Doctor Who episode, and had my last shower.

Feeling some tiredness and dizziness while loading the last of my belongings into my pack, the nerves set in. I worked to assuage them by thinking about all the antibiotics I’d taken and detoxing I’d done, but my efforts weren’t entirely effective. As Teresa drove me from Acton all the way to the Onion Valley Trailhead near Independence, I talked and laughed and worried.

Driving to Independence, CA

Driving to Independence, CA

At the trailhead, a previous year’s thru-hiker noticed my pack and struck up a conversation whilst I was giving my gear the final once over and taking mid-day medicine.

“You hiking the trail?”

“Yes.”

“Aren’t you a little late? Seems you should have been here a few weeks ago.”

That’s probably the last thing I needed someone to point out to me.

As we had done near Mojave with Pine Nut, Ant, and Laurie, Teresa and I set off down the trail together. With seven days of food in my pack rather than 11, the climb toward Kearsarge Pass wasn’t so arduous, but I could tell that the weeks of Lyme rest had taken their toll. We walked steadily onward, enjoying the trailside waterfalls, green rocks, and foxtail pines. The gathering storm clouds overhead were less enjoyed, especially when they began letting loose rumbles of thunder.

One hour into the climb, Teresa and I said our tearful goodbyes (“until we meet again”). Then, I turned and walked up into the storm.

Honestly, my tears remained for a good ten minutes. My goodbye wasn’t eased by my being so anxious, so worried that I was being too ambitious in returning to the trail. But, eventually, the endorphins of a good uphill hike started to kick in, and I neared treeline.

A deer bounded across the trail, the upper-atmosphere thunder rumbled a little louder, and tiny hail began falling. I walked on.

Kearsarge Pass was shrouded in clouds, giving it an otherworldly feel. Chilled from the hail, I snapped a quick picture before hurrying down the other side.

As a lot, thru-hikers despise “bonus miles,” any walking in addition to the 2,650 miles between Mexico and Canada. The Onion Valley Trail is more than 7.5 miles long, and I did it three times. However, there was something enjoyable about hiking a familiar stretch of trail, particularly now that it was so unusually misty.

As I’d neared the top of Kearsarge, my dizziness had intensified. Part of my rushing down the Pass was in the hopes that losing altitude would improve my symptoms; it didn’t. The PCT between the Onion Valley Trail and Glen Pass stays high, so I knew I needed to get up and over Glen before calling it a night.

I’d be lying if I tried to pretend those miles weren’t difficult. I resorted to counting my steps, rewarding myself with a break after every one or two hundred footfalls.

By the time I was atop Glen, the hail had stopped and the storm had blown over a bit; however, the evening was bringing chillier air with it. I marched onward, eager to get down to Rae Lakes and make camp, keen to quell my dizziness.

In the twilight of 8:30, I spied a small campsite next to a tree overlooking Upper Rae Lake and decided to call it a day. Too nauseated to eat, I crawled under my quilt without dinner. I thought sleep would come easily, but I was feverish and nauseated and dizzy and spent hours just trying to feel okay.

My fever broke in the middle of the night. In the morning, I considered my possible escape routes, in the event that I needed them: up and over Glen and Kearsarge Passes or, once again, a long, downhill trek to Road’s End. I decided that the best thing to do was to get to lower elevation — to tease the effects of altitude sickness from the effects of Lyme — and reevaluate my predicament there. I packed up and hiked northward.

A hailstorm unlike any I’d seen before soon accompanied me.

To be continued…

On the PCT: Back to the Trail

As it turns out, I made it out of the woods — off trail for 2015 — before this previously-written post was scheduled to go online.  This post was written while I was rallying with a course of antibiotics, just before I headed back over Kearsarge Pass for a third time.  After the beautiful words of encouragement, comfort, support, and solidarity that I received in response to last week’s post about Lyme forcing me off the Pacific Crest Trail, I felt it was necessary to explain the context of the words below, as without context they might indicate that I’m still trekking northward.  I considered not posting them at all, but I’d like this post to stand as evidence for myself that I am stubborn when it comes to fighting Lyme; I’m stubborn and resilient and sometimes even follow my own advice, as I tried intrepidly to return to the trail before calling it quits.  (The tale of my farewell to the PCT is a fun one, but I’ll save that for another day…)



Once upon a time — when I dared to hope that my case of Lyme had been acute, when I was healthy and training for a marathon, and when I was poring over maps and guidebooks in my family’s living room in Kentucky — I drew up a plan for the PCT that included less than one week of zero days.  Now, after taking two weeks of zeros in one go while fighting off a Lyme relapse at Teresa and Laurie’s in Acton, I’m heading back to the Sierra.

Sometimes, I think my PCT hike is supposed to be a lesson in flexibility.  Or maybe that’s just Lyme.
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In any case, I’m not ready to give up yet.

Thanks to antibiotics and detoxing, my symptoms have diminished significantly.  One week ago, I couldn’t walk to the bathroom without becoming so dizzy that I needed to lie down; now, I’m capable of walking at least four miles without issue.  (Standing still is more challenging.)  I realize that walking around the neighborhood is a little different from carrying a large pack up and over 12,000-foot passes, but I’m hopeful.

At first, it felt strange to be off the trail and frustrating to think that the future of my hike was in limbo.  However, once I was able to stay awake between meals, my zero days gave me lots of time to write and think and catch up with family and friends.  I also enjoyed cooking with non-dehydrated fruits and veggies and binge-watching Doctor Who, Orange is the New Black, and Chasing Life.  And, I took it upon myself to be introduced to My Little Pony: Friendship is Magic, which seemed important, given that my trail name is Rainbow Dash.  (I may have absolutely loved the show.)
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I think the most important outcome of this relapse and the time I spent dealing with it is the fighting spirit I cultivated toward Lyme disease.  Up until this point, I’d just sort of accepted Lyme as part of my reality, figuring that the spirochete population inside me would periodically grow and rebel and I’d just fight it off again with some antibiotics when it debilitated me.  One-on-one and in small group settings, I’d spoken to people about the problems inherent in testing and treating the disease, but I’d basically been overtly complacent about those issues.

Now I’m angry, ready to fight, and done fighting alone.  I’m going to start seeing a LLMD, and I’m going to try to end this, even if doing so forces me to feel a whole lot worse before I can feel better.  I’m going to participate more actively in Lyme advocacy.  And, I’m going to figure out some way to leverage the outdoor community in fighting back against this epidemic.  It shouldn’t be that those who are most ill with Lyme disease are the only ones advocating for more research, awareness, and education:  Hikers, backpackers, hunters, fisherman, mountain bikers, geocachers, orienteers, nature photographers, wilderness therapists, naturalists, biologists, conservationists, foresters, etc. have a vested interested, too, even if they don’t realize it yet.

But, first, I need to get to Canada, at which point I’ll be able to give $2703 to the International Lyme and Associated Diseases Society, which is a good start.  I’m not sure whether I’m more excited or nervous to hit the trail again.  I think I’ll choose the former.

Towanda!


I’d be remiss if I didn’t give a shout-out to the trail angels who helped me through this relapse.  Certainly, Teresa and Laurie (and Frankie and Laci!) are spectacular friends.  Pine Nut’s mother, an acupuncturist and herbalist, gave me priceless advice and encouragement by phone.  And, Chloe O’Neill of More Than Lyme inspired me and continues to inspire other adventure-loving Lyme fighters.  Thank you all!