When Real Life takes a Turn: My Lyme Story

t’s funny. The number of times I had hiked, trail run, camped, done yoga barefoot in the grass— and not once did I ever get a tick bite. Because I took precautions. I doused myself in DEET. We sprayed our yard. We used tick preventatives on our pets. We did tick checks. But it was October 2017. I was doing a portrait session at The Garden of Ideas in Ridgefield, CT— dressed in tight jeans tucked into tall leather boots, a long-sleeve flannel shirt. I was excited for these photo sessions, my first as an amateur photographer trying to go professional, but I didn’t think about bug spray on that crisp fall day.


Later that night, I undressed and lotioned my arms. To my horror, I discovered the slightly engorged tick embedded in my right arm. How on earth did it get inside my clothes? All I could think was that perhaps as I kneeled down, it hopped from a low-lying tree branch down my shirt collar. Or perhaps it hitched a ride on my photography bag. I sufficiently panicked as my husband gently removed it with tweezers, then we placed it gingerly in a plastic baggie so I could drop it off to our health department in the morning. You see, we lived in tick country, and we knew what to do because it was heavily advertised. That should’ve given me a leg up.


I called my primary care physician and requested the prophylactic doxycycline, which is 2 pills taken within the first 24 hours of a bite. Supposedly it only provides a 15% improvement, but I wanted to be proactive. Mind you, the tick had only been embedded for maybe 6 hours. So after I dropped off my tick for testing, I completely forgot about the incident. I got no bulls eye rash. No sign I’d been bitten. I joked about it in my fitness classes that week, trying to calm myself, and everyone assured me I should be fine. The tick has to be embedded 24-48 hours. I took the prophylactic doxy. I did everything right. And I would be okay.


A week and half later, I chaperoned my daughter’s 7th grade trip to Sturbridge Village in Massachusetts. On the bus ride there, I felt odd. Something wasn’t right. Luckily, and oddly enough, a student didn’t feel well and wanted his mom to come pick him up, so the bus pulled over off an exit. I, too, got off the bus so I could get some fresh air. The off-feeling seemed to dissipate, and I completely forgot about this moment, too. But by the following Monday, while I began to teach my Yoga class, I felt dizzy, woozy, queasy. It wasn’t familiar. Of all the times I’ve been sick in life, this felt different. When I got home, I had a voicemail from the health department, saying to check my email, which I immediately did. Attached was the official letter from the health department: my tick, a female Ixodes, tested positive for borrelia burgdorferi, and I should consult my doctor. 


My doctor sounded doubtful on the phone, but said okay, she’d call in a prescription for 3 weeks of doxycycline, reminding me that just because the tick is positive, doesn’t mean that I am. I look back now and wonder why a doctor, in the heart of tick country, could be so hesitant to believe I had contracted tick-borne illness. By Tuesday, Halloween, I had developed fever, chills, nausea, body aches. By Friday, I was feeling a bit better, and deep-down, even I hoped my doctor was right. It was flu season after all. It could just be a virus. I was antsy. I wasn’t used to being sick longer than a few days. So I got dressed, even ventured to TJ Maxx. As soon as I walked in, I felt odd, woozy, weak. Luckily the display at the front of the store included a bench, and I quickly slumped down on it. I waited for the dizziness to pass. Then went straight back to my car and drove home, knowing that this was different. And that I couldn’t will myself all better. 


I began to research Lyme disease. I read blogs that described my symptoms to a T. I knew that I didn’t just have the flu. I had to get subs for all my fitness classes— part of the reason I thought I might have gotten sick was that I had recently increased my class load and had been subbing a lot as well, teaching 2-3 fitness classes a day! Who was I, this health fanatic, to succumb to Lyme? 


But I had faith in the doxycycline. Surely after 3 weeks, I’d be better. I didn’t know how I could survive 3 whole weeks of not working, of not feeling well. (What did I know then of chronic illness?) We traveled home to Utah for Thanksgiving. Our minivan died on the Van Wyck on the drive to JFK, and we had to wait hours for a tow and missed our flight, all the while I was terribly nauseated. We made it out the next morning, and I suffered the worst migraine of my life upon arrival. I was so happy to see my family, and yet it took every ounce of energy to try to pretend to be well. I had already lost 10 lbs in 3 weeks because of the constant nausea. Which at the time, I blamed on the antibiotics. Later I would learn it was also just part of the illness itself. 


After that trip, I began to feel better. I had completed the 3-week course and by week 5, believed I was on the final upswing. I returned to teaching my fitness classes. But it didn’t last. I began to feel ill again. I called my doctor, who got me in for bloodwork. My Western blot only showed 4 of the 5 required positive bands. She said that if I did have Lyme, it was all gone. She tested me for vertigo, inner ear issues— I was fine. She said my blood didn’t show any co-infections. She asked about anxiety and depression, which yes, I had experienced, but I knew it was a symptom of the Lyme, not the root problem. She shrugged. She said, I’m sorry I can’t help you. Maybe try alternative medicine. 


I left, defeated and upset. She heavily implied that it was anxiety. That this was in my head. So I stayed sick. For weeks and weeks. Untreated. I’d have days that I felt a bit better and could function, go out to eat— alternated with days of complete fatigue, body aches, wooziness, feeling vibratey and wrong inside my body. The best way I could describe it some days was simply, I don’t feel well.  I tried self-treating with Biocidin, based on what I’d read online. But I continued to feel much the same— some days okay, some days miserable.


Then one night in January, I had the worst night of my life— shaking, sweats, tremors I couldn’t control, nausea. I thought, this is it. I’m dying. I hadn’t yet made it to my 42nd birthday. I had run 7 marathons, 10 Ragnar relays, birthed 3 babies., hiked mountains. And I was going to die from a measly tick bite. My Christmas gift from my husband had been a plane ticket to Utah to go out for my sister’s delivery of her baby. I sobbed and sobbed, knowing there was no way I could get on a plane that day. We were out the entire cost of that plane ticket. Just the first of many financial fatalities this Lyme journey would incur. But it was that turning point, when my husband asked me the next morning how I’d slept, and I responded with a broken dam of tears saying I want to die— it was then my husband said, find a Lyme specialist. Spend whatever. You see, we’d been avoiding the LLMDs because of their high costs and not taking insurance. 


I wanted to see Dr. Philips in Wilton, but he wasn’t accepting new patients, that’s how busy he was. His partners were, but they were booking 5 months out. I couldn’t wait 5 months. I found Dr. Cameron in Mt. Kisco. My very good friend Kim Carone drove me the 45 minutes to his office and made sure I didn’t forget any questions I needed to ask. (I mention her by name, because these angels on Earth matter— they are the ones who get us through the journey. In my case, literally.) Dr. Cameron diagnosed me, based on my symptoms, with Lyme and babesiosis. Babesiosis caused the night sweats, dizziness, nausea, vibratey-feeling, lightheadedness, ear-ringing, headaches. Later, it would also cause head pressure, earaches, eye pain. He prescribed malarone and azithromycin. He said we’d go month to month. I would track symptoms, and I should stay on it until I no longer had any symptoms. He seemed positive, hopeful, like this was an easy fix, and that I would get better. 
​TO BE CONTINUED...