Living with Lyme Disease

Kelly is a 2017 Pacific Crest Trail thru-hiker and was diagnosed with Lyme Disease in 2014. She opens up about her symptoms, diagnosis and everyday life with the disease.

May 09, 2018
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     “Don’t forget to check for ticks.” If you spend time outdoors, you’ve probably heard this advice, and you probably know that you should check for ticks because they spread debilitating diseases like Lyme disease. Removing a tick before it bites is much easier than treating a tick-borne disease, yet most of us probably don’t check for ticks as often, or as thoroughly, as we should.

     If a round or oval shaped rash appears following a tick bite, most of us know that we should get ourselves to a doctor. What most of us probably don’t know – I certainly didn’t before my own battle with Lyme – is that 50% or more of patients who test positive for Lyme disease either didn’t have, or couldn’t remember, a rash of any kind. And because a large proportion of infections are likely caused by tick nymphs the size of poppy seeds, many of us may not be aware that we’ve been bitten, let alone infected. This is why performing a thorough tick check to prevent bites is so critical.  

     Lyme disease is caused by bacteria from the genus Borrelia. In the United States, the culprit is most often Borrelia burgdorferi. Symptoms range from flu-like aches, fevers, and chills to stiff, painful arthritis, to debilitating brain fog and deteriorating mental ability, among many others.

     My experience with Lyme disease began with recurring flu-like symptoms, which went on for years. In the spring of 2014, my condition suddenly deteriorated. I could no longer make it through a day at work, let alone a short hike. I spent my days in bed, writing down my symptoms. Sore throat. Muscle cramps. Night sweats. Heart palpitations. Weakness and fatigue, to the extent that I could no longer even walk to the end of the block. Memory loss. Difficulty speaking. Inability to concentrate. Severe migrating pain, in my calf one moment, in my thigh the next. My list of symptoms went on for a page and a half. Following the advice of a friend whose wife had spent years fighting Lyme, I found a doctor experienced in treating tick-borne illness. I didn’t remember a tick bite or a rash, but my tests came back positive for Borrelia, as well as for Anaplasma, another tick-borne disease.

     Tick-borne diseases are treated with antibiotics. If caught immediately, for example while the tick is still embedded, infections will likely resolve with a short course of antibiotics. If left untreated, as mine was, years of antibiotic treatment may be required to rid your body of the infection. One reason why: the Borrelia bacteria can change forms to evade antibiotics, switching from spirochete, to cyst, to a cell wall deficient form. Each form succumbs to a different antibiotic. Targeting one form can induce the bacteria to switch to another, so multiple drugs may be required to eradicate the bacteria in all of its forms.

     Often, Lyme doesn’t travel solo. Test positive for Borrelia, and you’ll likely also test positive for Anaplasma, Babesia, or Bartonella. No matter how aggressively you treat Lyme disease, if you fail to treat any co-infections you’re harboring, you won’t recover. Sometimes, a blood test will return negative results even though a co-infection is present. My doctor explained that this can happen because the tests don’t recognize all of the strains of these bacteria. This is what happened to me: I tested negative for Bartonella, despite displaying the hallmark symptom, a streaked rash. After treating me for Lyme and Anaplasma, my doctor clinically diagnosed me with Bartonella based on my remaining symptoms, and started me on a Bartonella-specific antibiotic. This diagnosis proved to be the final key to that returned me to health.

     In all, I took antibiotics for nearly two-and-a-half years. I lost my ability to care for myself and had to live with my parents for a time. I spent an entire summer in bed, unable to hike or backpack. I lost months of work. I spent thousands of dollars on doctors appointments, tests, antibiotics, and supplements. All of this could have been prevented if I’d been diligent about checking for ticks after every hike.

If You Spend Time Outside:

  • Check for ticks after every outing, remembering that ticks in the nymph stage are the size of poppy seeds and can be easy to miss. No matter what your doctor might tell you, Lyme disease is not restricted to the northeastern United States. You can become infected from a tick bite in California (as I did), or in any state in this country – as well as internationally.

  • Use tick repellant if you frequently find ticks on your clothing. Consider wearing long pants in light colors that will make it easier to spot a tick.

If you’re bitten by a tick, find a bulls-eye or oval-shaped rash, or suspect you may have Lyme disease:

  • Visit the International Lyme and Associated Diseases Society (ILADS) to find a doctor knowledgeable about tick-borne illness.

  • Educate yourself about Lyme and common co-infections is a great place to start. I highly recommend the book Cure Unknown by Pamela Weintraub (no relation to me) for a thorough, and frightening, history of the disease and the controversy that continues to surround diagnosis and treatment.

If you’re battling Lyme Disease:

1) You’re not alone. It’s impossible to understand how devastating these diseases can be until you’re fighting them, which means your family, friends, and co-workers probably won’t get it, even if they’re supportive and want to help. Look for a support group in your area, or online, and talk with others who’ve experienced what you’re going through.

2) It may take more than antibiotics to get well, especially if you’ve gone undiagnosed for several months or years. A chronic infection can lead to nutrient deficiencies and can trigger autoimmune diseases, among other problems. I developed an autoimmune thyroid disease, a severe Vitamin D deficiency, an iron deficiency, and food allergies. In addition to taking supplements, including massive doses of probiotics, I overhauled my diet. For the duration of my treatment (2.5 years), I adhered to a strict autoimmune paleo diet, which I believe helped my body recover from the abuse of the bacteria and long-term antibiotics. Be open to making sweeping changes and sacrifices, because that’s what getting well might require.

3) Don’t give up. Returning to health may take years. It’s exhausting. It’s full of disappointments and setbacks. It’s expensive. You may have to choose, as I did, between going into debt and being bedridden. Find something to look forward to. In my first year of treatment, I set a goal of backpacking in every month of the year. Even if I could only hike for one mile, I made sure to get out at least once each month. I used these monthly backpacking trips as training for my ultimate goal: thru-hiking the Pacific Crest Trail. I found that it wasn’t enough to say I wanted to get well. When you’re unable to get out of bed, what does getting well mean? For me, it meant being able to walk from Mexico to Canada. In 2017, six months after I stopped taking antibiotics, I successfully thru-hiked the PCT. Find your goal, and don’t give up.

Kelly Hodgkins photo

About Kelly Hodgkins

By Kelly Hodgkins: Kelly is a full-time backpacking guru. She can be found on New Hampshire and Maine trails, leading group backpacking trips, trail running or alpine skiing.

About Greenbelly

After thru-hiking the Appalachian Trail, Chris Cage created Greenbelly to provide fast, filling and balanced meals to backpackers. Chris also wrote How to Hike the Appalachian Trail.

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