My decision to begin treatment was such an easy one. I will do anything to get well. Trouble is, part of getting well very often means getting worse.
A Jarisch Herxheimer reaction (or “herxing” for short) is a temporary worsening of symptoms that often comes with treatment. They usually happen when you start a new drug or combination of drugs, and can last hours, days or even weeks. Having a herx reaction is both a good thing, in that it proves the treatment is working, and also a bad thing, in that your condition temporarily worsens. If you’re like me, nearly at the end of your rope, worsening dramatically would be a major blow, so like most patients I was full of trepidation when I took my first dose of medicine.
I’d had my boyfriend come over for the occasion, we were settled in on the couch, and I popped the first bunch of pills under his watchful eye. Two hours later, when my right sinus passage turned cold and numb, my lips and chin started to feel tingly/burny and I lost feeling in my feet, I knew it was starting. That first night, this was all that happened and I was thrilled.
I woke up the next morning back at my “Lyme-normal” status quo and happy to have a non-eventful herx experience under my belt. When I took my second dose of medicine with breakfast (at work), I wondered if that’d happen again. It didn’t. Instead, just a few hours later, I had a lot of brain fog. I experienced confusion doing the more complex tasks of my job, difficulty multitasking and just feeling pretty out of it. Thanks to a lot of lemon water, a dose of Alka Seltzer Gold and some solid calm breathing skills, that passed in just a couple of hours and I once again felt confident about my herx-handling skills.
That night, I took my third dose of meds (by myself) with dinner and went heavy into my detox routine. I drank lemon water, ate my giant salad for dinner, I spent an hour in an Epsom salt / baking soda bath, and I used chlorella, quercitin and burbur supplements before bed. I felt totally Lyme-normal crawling under the covers, figuring I’d kicked it. Until I woke up at 11pm with a pounding heart, shallow breath, tingling all over my body and a sense of a major adrenaline rush. I hopped out of bed only to realize I was also dizzy and that my eyes / head / base of skull and jaw were all aching badly. My vision was blurred. This was NOT good! This is why, whenever I’d asked anyone what it’s like to have a herxheimer reaction they say “you feel like you’re dying.” YUP. Dying.
I started drinking burbur by the dropper full every 10 minutes like my doctor said to do. I sat in bed with warm lemon water, and I practiced deep breathing. And I did this for hours. It is pretty impressive how fast the burbur starts to work, with each dose I did feel calmer. By 4am I was at least mentally calm and free of tingles. I was nursing a higher than average level of anxiety and a swiftly pounding heart, but was otherwise ok. It no longer felt emergent. I called and left a voicemail for my doctor letting her know what had happened and asking if she had any advice.
I managed to secure a couple hours of sleep at that point, which I’m so grateful for, and the universe did me a solid when my early morning meeting was canceled. I let myself wake up slow and stay sort of disoriented. I realized I was also extremely emotional, one of my classic Lyme symptoms (and one of my most embarrassing ones). The herx was still on, but at least a little less intense. I left my morning dose of medication at home and headed to work.
Luckily, my doctor called first thing after she got my message and provided a very solid voice of reason. “This is working, this is part of healing,” she told me. I know she’s right. And mercifully, she suggested we scale back on the most potent medication, cutting the dose in half in hopes the Lyme die off will happen a little more slowly, and those herx reactions will become more manageable.
I’m taking the rest of the day off of the big guns, and we’ll try again tomorrow. With medium sized guns. A coworker shared this song, and I think it’s pretty perfect. There’s still a lot of fight left in me.