Lyme: my story

I just swallowed my final Doxycycline hyclate capsule, or “Doxy” for short. I started taking Doxy almost as soon as I landed in Gainesville, FL, less than 24 hours before beginning a three year Chinese medicine academic journey with the Academy of Five Element Acupuncture. We just finished our first “intensive” yesterday. I’m unsure if I will return. I’ve swallowed 100 mg of Doxy every morning and night for the past 19 days of school, besides four pills (loading dose) on the first day of my treatment regime, and my final pill this morning. I’ve also been taking three pills three times a day of Green Dragon Botanicals’ “LB Core Protocol” pills, which includes Japanese Knotweed root, Cats Claw vine bark, Andrographis, Sarsparilla root, and Dandelion.

I staffed a campout with Two Coyotes Wilderness School’s “Scout Tracker” program ten days before leaving CT for FL. I worked the camp season for most of July, spending the bulk of almost everyday in the field with kids, and regularly pulling ticks off of my body, with raising alarm, but also recognizing that it’s just part of life in the northeast, especially CT, the state where Lyme disease was first discovered, and in fact the town of Old Lyme peacefully resides. I drove home quickly after my final campout, as I had a busy evening planned, that led into a busy weekend, that led into my final few crazy whirlwind over-scheduled days in CT before leaving for FL. I did my regular tick check when I got home, extracted two tiny tightly-embedded ticks out of my body, noticed what looked like a tick in a hard-to-reach area, tried to extract it but couldn’t so left it, then proceeded to my evening activities. I started taking Astragalus and Echinacea prophylactically, in case I didn’t extract one of the ticks in time. It usually takes about 48 hours of a Lyme-carrying tick being embedded for the spirochetes to transform themselves into their correct shape to successfully enter and take over a human body. But, it really depends on the individual. I take Astragalus preventatively, just in case. But, the stress of the past month of work and upcoming travels probably kicked my immune system down several notches. Plus, that little black dot at the top of my butt crack that I couldn’t extract was actually a tick.

The bite flared up at the end of the weekend, after I returned from a trip to the north. I thought it could be a spider bite: hot, pulsating, painful, and tender to the touch. It hurt to sit. I remembered the little black dot that I couldn’t extract being on the same location as the bite, and so upped my Astragalus intake, but started treating the huge rash like I would topically, for a spider bite. The rash stayed for the rest of the week, not changing at all. It wasn’t until I boarded the train, that things changed.

Bumping along in the dusk approaching North Carolina, I had trouble falling asleep. It was difficult to get comfortable in my seat, due to the huge welt on my butt. In the tiny stinky bathroom, I inspected the rash. To my horror, it had changed into a Bull’s eye rash, one obvious symptom of Lyme disease. Sometimes people present with Bull’s eye rashes, but not always. The center of my rash had dried up and was peeling, due to my spider-bite treatment of cooling and drying the bite. The couple of days before leaving CT, the bite had developed a thin red line along the edge that I thought could be Lyme, but didn’t want to be, so refused to believe it. Note to others: if you think it can be Lyme, take care of it immediately. And, ask for help. I was “too busy” to stop and take full account of what was happening. I felt too shy to ask for help initially, as the little black dot was right at the top of my butt crack, an awkward place to ask for assistance in extracting what could be a tick... but what if it wasn’t? Well, it was. Take no chances.

I share this story because Lyme is so powerful, unexpected, and potentially life-threatening. Left untreated, chronic Lyme can render a person consistently tired, in pain, and can manifest in a variety of ways from completely debilitating to mildly uncomfortable. Having listened to Lyme specialist Julie McIntyre’s experience and stories and watched her in her clinical practice, I am fearful and respectful of Lyme, and do not want it in my body, especially as a young person, a fresh student, and a whole world, a whole life, in front of me.

After finally accepting that I had Lyme, crying as I entered Gainesville on the bus, and frantically text-messaging a bevy of friends across the country for suggestions and support, I felt ridiculous about my life. I grew up in California. My family is still there, and my extended family is in Taiwan. Most of my extended-non-blood family is in the northeast. My heartstrings are attached to the northeast and southwest. What am I doing, coming to school down here in FL. What am I doing, living on the east, where Lyme is a part of life and mountains are not that big, continuing to cultivate life and love in a place that doesn’t quite suit me. What am I doing. I belong in a dry warm climate, with mountains and wilderness. The longer I spend there, the more friends I will find there. And all of my northeast friends, work, community, possibilities? I can travel. But (I think) I want to--- need to--- root down back in the west.

I got Doxy as soon as I could after landing. It’s a strong antibiotic, and pretty much the only known “cure” for Lyme that usually only works if taken within a short while after infection. I lucked out with the herbs; a local herbalist had some extra pills leftover from another Lymey person, and bequeathed me all of her leftover pills.

I will continue taking the LB core protocol herbal pills, three pills, three times a day, until I run out of them. I can sit on my butt, again. The painfulness of the rash went away after a week of taking Doxy, though I still have a huge gray circle on my ass, where the rash was, before. I hope it goes away. But now, when I look at it, it reminds me of important questions. The big gray circle where the rash was is at the top of my butt crack, and the bottom of my sacrum, coccyx, root chakra, Muladhara. Where do I come from. Where do I belong. What’s really home. What’s really important. What do I sit upon, root into. What’s my base, my foundation. What’s really important.

I’ll let that question sit within me and help direct my next steps, as I fly back to New Mexico on Tuesday, and then back to Connecticut three weeks after that.

I’m living my questions.