I’m excited to be featured in my local newspaper this morning with an article about my 2017 PCT hike. The reporter did a wonderful job of connecting my thru hike to my battle with Lyme disease.
Lyme and other tick-borne diseases are devastating, and in my experience most people – including hikers – don’t take the threat seriously enough. I didn’t, until I became disabled by Lyme and Bartonella. These are not just East Coast problems; I was infected in northern California, not far from the PCT.
My battle against these diseases was the original focus of this blog. I hope to continue raising awareness about the threat of tick-borne diseases and sharing hope that recovery is possible.
To follow my PCT hike from the beginning, start here.
Hello to any followers who may still be following this blog after my long absence, and greetings to new followers who will be following my journey on the Pacific Crest Trail this year.
In 2016 I stopped blogging and instead spent my free time backpacking and planning my Pacific Crest Trail thru-hike. I stopped taking antibiotics for Lyme disease and Bartonella in October and am thrilled to report that I haven’t had a relapse. I continued backpacking in every month of the year, and as of today have backpacked 27 months in a row. The biggest news, of course, is that I’m taking a leave of absence from my job and hiking the Pacific Crest Trail this year!
I’m excited about the adventure to come, and I’m grateful to have made it this far. Recently, when asked to give a short autobiography at work, I found myself saying, “Lyme disease survivor.” My struggle with this disease is now part of my identity. Near the beginning of the struggle, when I was so sick my doctor put me on disability leave, I decided that in order to conquer the disease, I would hike the Pacific Crest Trail. Working toward this goal gave me the inspiration and determination to fight my way back to health, one step (literally) at a time.
I intend to post updates from the trail for family, friends, and followers, but I’m not fond of the Word Press app and may decide to use another platform. If so, I’ll post a link to the new site.
Thank you for following!
I don’t want to be here but here I am: back in the goddamn pit. I don’t know how I got here. A month ago I could do anything and everything I wanted to do, with energy to spare. And now….
There’s the sore throat, of course. That’s always the first symptom to arrive. There’s the fever that isn’t a fever. I’m burning up, even sweating, but my thermometer insists that my body temperature is well below normal. (I was a cool 97.6 at last check.) There’s the exhaustion. The strange underwater headache. The nausea. The sense of desperation. The tears. Each symptom so familiar, though we haven’t seen each other in months. I’d come to believe that we would not meet again.
I want to pretend like this isn’t happening. I wanted my next blog entry to tell the tale of another backpacking trip, but given the theme of this blog I feel it would be dishonest to tell only the happy tales. So here I am sharing another, darker chapter of my story.
Is this Lyme, still haunting me? Bartonella, untamed after all? Something new? What is this?
I’m confident that my recent record-breaking hikes did not trigger this backslide. I floated through those adventures, one after the next, without even a hint of a sore throat. I was so strong. I was so sure I was healed.
I have so many questions, but my poor body can’t seem to offer up any answers. How can a chronically ill person hike 20 miles in one day? Where did that strength go? How could I have been so strong when this disease, or whatever it is, was always lingering right below the surface?
It’s been 11 days since I returned from my 20-mile-round-trip backpacking adventure in the Trinity Alps Wilderness. In the aftermath of the trip I experienced four days of intermittent sore throats, which I feared represented the leading edge of a Lyme disease symptom flare. However, the last sore throat faded out six days ago, and since then I’ve been feeling almost normal.
Contrary to expectations, this last backpacking trip did not slow me down. I was exhausted during and immediately after the trip, it’s true – but I recovered faster than I thought possible given my history of illness. I’ve been able to continue conducting bird surveys at work and I’ve felt good while doing them. Getting up at 3:30am and then hiking 3-4 miles can be draining even for a healthy biologist, but so far, so good….
Despite the current string of healthy days I’m always vigilant for the sore throat that will signal the beginning of the next symptom flare. My Lyme disease symptoms come in cycles; based on past experience I expect the next flare to begin two to three weeks from now.
My husband and I are planning a backpacking trip for the weekend of June 20-21 to celebrate our 12th wedding anniversary – unfortunately right in the middle of when I expect to feel sick, but I’m hoping for the best. Ever the optimist, I’m also planning another trip to the Trinity Alps for July 4th weekend (destination to be determined). It’s possible that the next flare will be mild and I’ll be able to spend the long holiday weekend backpacking as planned.
By now I’ve learned that no matter how good I may feel, I will always fall sick again. Sometimes the sick days are mild, sometimes they’re harsh.
I’ve also learned that no matter how bad I feel I will always get well again. The good times have been getting longer, with more time to enjoy life between the sick days. Eventually there will be no more bad days.
I dream of hiking the Pacific Crest Trail (also known as the PCT). At night when I’m asleep, and my mind can go in any direction it chooses, I dream I’m hiking the PCT. I daydream about thru-hiking, often when I should be concentrating on something else. Sometimes, when I’m out for a short hike, I imagine that I’m really walking from Mexico to Canada on the PCT.
I have always lived within a two-hour drive of the Pacific Crest Trail, but I have not always dreamed of hiking its length. My interest in the trail began in 2002, when an acquaintance completed a solo thru-hike of the PCT. She stayed with me and my husband (then boyfriend) for a few days in Ashland, Oregon, on her way to Canada, and her journey planted the seed of thru-hiking in my own mind.
Back then, I didn’t fantasize about hiking the whole trail. I had no interest in suffering through the desert for 700 miles. I thought I might start at Kennedy Meadows, at the base of the Sierra, and hike from there to the Oregon border. I didn’t need to do the whole trail. The cold rain of northern Washington was as off-putting to me as the heat of southern California. And I was terrified of hitchhiking, which thru-hikers must submit to in order to re-supply with food and other gear. All in all, the PCT sounded like a fantastic adventure, but maybe more than I wanted to take on.
But the seed was still germinating. I was lucky to grow up in a family that values wild places. As a child I went backpacking with my family every summer. My husband and I spent our honeymoon backpacking. I found myself yearning to tackle a long trail, to stay out in the wilderness for weeks on end. I began reading about the John Muir Trail (JMT). This 220-mile trail leads hikers through the heart of the Sierra Nevada and sounded, to me, like a dream come true. I realized that I could do this. I could make this happen. The idea of a long hike moved from fantasy to possibility, and finally to a plan.
In the summer of 2013 I informed my parents that I intended to hike the John Muir Trail within the next year or two. To my surprise, they were as excited about the idea as I was. We soon made a plan: we would hike the John Muir Trail in the summer of 2015. 2014 would be dedicated to training.
All too quickly the plan unraveled: I fell ill with a mysterious disease, first plagued by troublesome recurring symptoms, then becoming so sick that I was effectively bedridden. Months later, a diagnosis came: Lyme disease.
Instead of training for the John Muir Trail I was now working up to walking to the end of the block. There were days when I was so sick that I couldn’t walk from my bedroom to the kitchen. Some days I stayed curled up in bed, willing myself not to fall to pieces. You’re going to be ok became my mantra, repeated over and over in my brain when I felt myself slipping. It’s going to be ok.
I was terrified to find myself locked inside such a devastating disease and I was desperate to find a way out. In such a situation it is not enough to simply say, I am going get well. What does getting well feel like? What does it look like? Sound like? How does it smell and taste?To pull myself out of darkness I needed to visualize what was on the other side. Where was I going? What did getting well mean to me?
Confined to the house, I started reading blogs by PCT hikers. I followed them as they stepped onto the trail at the U.S.-Mexico border, struggled with the heat of southern California’s deserts, found the promised land in the Range of Light, sped through northern California and Oregon, and strained to get through Washington before winter arrived.
Descriptions of the trail often brought me to tears. I longed to be out there with them. I imagined hiking 20+ miles per day, day after day. I knew I could do this. Not today, obviously, but I could do it. Getting well meant the freedom to do something extraordinary. I could hike from Mexico to Canada.
The long trek through the desert now seemed like a worthy challenge, the High Sierra like a reward for surviving those first 700 miles. The hardest parts of the trail would make the best moments even brighter.
I will say this for chronic illness: having been in its grip, I never take anything for granted. I take full advantage of, and give thanks for, every moment that I feel good, because I know how easy it is to lose everything, and how quickly it can happen. On the journey toward recovery no achievement goes uncelebrated, however small. Priorities become absolutely clear. In my case, I realized that I will be devastated if I am never able to hike the Pacific Crest Trail. The trail is my brightest guiding star on the path back to health.
I still intend to the hike the John Muir Trail with my parents (and hopefully my husband too). That trip will not take place this summer as originally planned, but it will happen. Completing the JMT will be a grand achievement in my battle against Lyme disease. It will also be excellent practice for my ultimate goal: the Pacific Crest Trail.
I’ve noticed that most of my readers are interested in my blog because I write about the autoimmune paleo diet. If you are following AIP I think it’s safe to assume that you are struggling with a disabling disease or an unpleasant chronic condition. How do you get through the dark days? What are you looking forward to? Please share what inspires you to keep fighting!
My battle with Lyme disease has largely been characterized by symptom flares that wax and wane as the months go by. The downward spiral always begins with a sore throat, followed by a multitude of other unpleasant symptoms. The latest downturn lasted for two weeks, and this time I felt so sick that I had to take time off from work. I had not felt so sick for many months; lately, I’ve been able to work through the rough patches. Being restricted to bed rest again was emotionally devastating. It is devastating to feel like you’ve made progress only to once again be cast back into the pit. It is devastating to have to climb out of that pit again and again, knowing that this will not be the last time.
I’ve been tested for all of the tick-borne co-infections that commonly occur with Lyme disease, and only the tests for Lyme and Anaplasma came back positive. My Bartonella test came back negative despite my having many of the classic Bartonella symptoms. This week my doctor diagnosed me with Bartonella based on my symptoms. He told me that there are many strains of Bartonella (as well as “Bartonella-like organisms”), and that one can have a negative test and yet experience improvement after being treated for Bartonella. I started a new combination of antibiotics, and I am hopeful that this might be the missing piece in my recovery.
For now, at least, I’m feeling much better. I was able to resume field work this week and I successfully completed two days of point count surveys (surveys for birds), one of which involved hiking for three miles. This is very encouraging, and I’m hopeful that I will continue to improve and soon become fully functional again. I’m already planning my next backpacking trip. At work, I’m making plans for additional bird surveys. I feel like I’m returning to life after being plunged into darkness.
The journey through Lyme disease is a long and painful experience. If you are walking this road I wish you the very best of luck, for ours is not an easy path. Even though it is sometimes excruciating to put one foot in front of the other, it must be done. Keep walking. Keep fighting. Never give up!
I know it sounds strange, but I keep hoping I have the flu. Every time I start to feel sick I wonder, Is this the flu? And then, Please, let this be the flu. Because if it is the flu, in just one week I’ll be feeling better. If it’s not the flu, then I’ll be feeling sick for weeks, and for the next few months, or maybe even for years.
My Lyme symptoms come in cycles. At first the cycle was somewhat predictable. Being a scientist, I kept track of and plotted my symptoms on a graph, and thus learned the cycle. After treatment with antibiotics began, the cycle began shifting, and I have not been able to pin it down.
Just now I went through nearly two months of symptom-free bliss. I felt so good for so long that I began to hope that maybe I’d hit the Lyme bacteria hard enough to put the disease into remission.
But then I began to feel sick. Again. It always begins with a sore throat. I’ve had a sore throat all week. I feel like I have a fever, but my temperature isn’t elevated. I feel like I’m coming down with a flu. One of my co-workers is home sick. I’m home sick. Is this the flu?
Please please please. Let this be the flu. If it is, next week I’ll be back at work and feeling good. If it isn’t…then I’m still battling Lyme, and I will continue to feel sick, again and again, never exactly sure when the symptoms will strike me down.
Having Lyme makes it difficult to create a work schedule, because I never know when I’ll be too sick to do my job. I work as a wildlife biologist, which means a large chunk of my job takes place outside. Sometimes that’s not a problem, and I can be as active as the job requires. But sometimes, like today, I can’t even handle the desk work. I am extraordinarily lucky to work for a company that supports me through this illness. I know that many people do not have this luxury.
To my knowledge, I have not had a flu or a cold in nearly two and a half years. The symptoms come on like the flu, but nothing like the flu ever develops. I never have a cough, or a runny nose, or a fever higher than 99.5 degrees. I have a mess of other symptoms, but it’s not the flu.