Lyme disease forces you to become incredibly resilient.
Last spring was incredibly stressful for me. With adrenaline, good maintenance routines, and a bit of luck, I completed an intense amount of written work, a teaching load that included a lot of traumatic subject matter, and emotional upheaval in my personal life. By the time I stopped teaching in June, I was burned out.
That’s when my Lyme symptoms started to flare, and I started to panic.
Earlier in the spring, I’d experienced a flare-up of babesia symptoms—air hunger, post-exertional fatigue, low blood sugar—and quickly nipped them in the bud with medication. I had an uptick in neuropsychiatric symptoms —sleep disturbances, obsessive thoughts, some anxiety and depression—but assumed those were all a response to external stressors, not a flare up of infection. My Lyme Literate Medical Doctor (LLMD) agreed, but cautioned that I really needed to decompress this summer to restore the good health I’ve grown used to.
As I finally took a rest, Lyme symptoms I hadn’t felt in years suddenly crept back. My shins and forearms ached, as they had when I first had Lyme. When I put my hands on my arms and legs, I felt the buzz of spirochetes spinning under my skin. I could still do errands and even go kayaking, but my store of energy was low and ran out completely afterwards. It didn’t feel like I had the flu and I wasn’t bedridden as I’d been in my early Lyme days, but I was more tired than I’d been in some time. Blood work confirmed that my inflammatory markers were high—not enough to warrant a mediation change, but what my doctor called normal variations in a relapsing cycle.
That frightened me. I hadn’t heard the word “relapse” in years. I’ve been in remission for more than a decade, and while I’ve had periods when my sleep was off, when my nightmares returned, when my night sweats were heavy, they were always quickly alleviated with a shift in supplements or extra integrative manual therapy appointments and neurofeedback sessions. (For information on integrative manual therapy, including research on how and why it works, check out the book Body Wisdom by Sharon Giammatteo, Ph.D. She’s also written several manuals on integrative manual therapy techniques for specific systems of the body).
“You’re much more resilient than when I first met you,” my integrative manual therapist has remarked often in the last few years. Overall, he feels far less bacteria in my body, and he says when I do have a flare up, my body knows how to bounce back from it quickly. I also know how to take better care of myself, and I’m generally more in tune with fluctuations in my body, which helps.
My neurofeedback practitioner has made the same comment about resilience I’ve arrived in his office haggard and crazed after several nights of wild dreams or several days of missing my essential mid-day nap. A few minutes in to the session, my brain would kindly remember why it was there and what it was doing, and settle back down again. After the sessions, I usually go home and take a good nap. “Signs of a well-trained brain,” my practitioner says. (The type of neurofeedback I do is called Neuroptimal. To learn more about it, click here)
Over time, without my even realizing it, my body and brain have built resilience. I’ve had enough appointments and sessions that my body has slowly gotten stronger. I’ve been on medications and supplements, and have kept to a solid routine, long enough that I’ve developed good foundational resilience. When a blow hits, I can weather it better than I used to.
Still, this most recent episode scared me. What if I did myself in? I worried, remembering how similar stressors led to my complete relapse over a decade ago.
However, I didn’t have the same armor back then. I had no antibiotics or immune-boosting supplements to defend against replicating spirochetes. I had some maintenance routines in place, but not enough of them. I had stopped adjunct integrative manual therapy and neurofeedback. I didn’t have good local support. I hadn’t yet accepted my illnesses as part of me, and therefore chided myself for a lack of fortitude when my body couldn’t perform the way I wanted it to.
Now, with years of building resilience—medically, emotionally, physically, and neurologically—I have much stronger physiological armor. I rested a lot last week. I did a lot of integrative manual therapy to quiet the buzzing spirochetes. I underwent a neurofeedback session. I took a true break from work. I ate well. I increased one of my homeopathic drops. I drank green tea.
And this week I am feeling much better. Not 100% yet, so I still need to be careful. I need to keep my foot off the accelerator for awhile. My blood work showed I was at a precipice, so I intend to keep working to tip back towards full remission. My improvement this week gives me hope that will happen soon.
If you are currently bedridden in the throes of one or more tick-borne illnesses, you might be thinking, Ha! I wish I could get better in a week! Believe me, I know how you feel. I was bedridden for years. I often took two steps back before I took one step forward. I did everything my doctors told me to do and I still didn’t feel I was making improvement.
What you can’t see from that position, though, is that your body really is building up resilience. If you’re on the right medications (a good LLMD will create the right pharmacological protocol for you), doing whatever adjunct therapies work for you, eating nutritiously, getting the rest you need, and generally taking care of yourself, eventually you should slowly start to feel better. Your Herxheimer reactions won’t be as bad. Your flare ups won’t be as severe.
I say this ten years out. Remember that healing is not linear but a holistic practice. You will cycle through terrible periods, but you’re ever inching ever forward, building resilience along the way. I hope that my resilience helps me continue to fight through this rough patch, and I hope that yours leads you to many years of good health.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.