Tag Archives: lyme relapse

Building Resilience

by Jennifer Crystal

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.

Borrelia burgdorferi, the spirochete that causes Lyme disease

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. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

life with lyme

Scheduling Life with Lyme Disease

by Jennifer Crystal

Flexible vs. rigid? How keeping to a schedule can impact one’s life with Lyme disease.

 

In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia and Ehrlichia. I had been in remission just a few months before I crashed back to ground zero. It took another couple years for medication and adjunct therapies to help me get back on stable ground.

I say “help me” because those therapies could only do so much of the work. The rest was up to me. I had to accept my illnesses and the limitations they imposed on me; this strategy became part of my “fight” against them. I had to make behavioral or lifestyle changes that would help my body heal, rather than just expecting it to do so regardless of how I lived.

One of those changes was creating and sticking to a strict schedule. My sleep doctor taught me that medication and neurofeedback would help my raging insomnia and hallucinogenic nightmares, but I also had to have good sleep hygiene. That meant going to bed and getting up at the exact same time every day. It also meant taking naps at the same time every afternoon. If I pushed my bedtime or nap-time too late, I wouldn’t be able to sleep, and everything would snowball until I was a melted down mess.

People who didn’t understand neurological Lyme disease thought I was too regimented. They laughed as if to say …

Would it really kill you to stay up an extra 15 minutes? Is it really that big a deal if you don’t get a nap today?” The implication being, “Can’t you be a little more flexible?”

Now that I’ve been in remission and steadily getting healthier for over a decade, I can be a little more flexible. Some nights I can push bedtime an extra hour and not pay for it too severely. But back when my health was super-fragile, there was no margin for error.

Even though I have some wiggle room with bedtime now, I do not have the same flexibility with nap time. If I lay down by 1:30 P.M. every afternoon, I get a good, comfortable nap, and wake up refreshed and ready to take on the rest of the day. If I push just half an hour until 2 P.M., everything starts to fall apart. My brain fog rolls in, I get cranky like a toddler, and I become too tired to fall asleep. Then I spend my time in bed anxiously rolling around, not getting the rest I need, and the remainder of the day—and sometimes the next day—is a wash. That half an hour is precious to me, so I’ve had to learn to advocate for it. I’ve had to learn what my limits are, which boundaries I can push and which I cannot. I had to learn to schedule my life—teaching, writing, socializing, accordingly. This discipline is, I’ve learned, the only way for me to control my tick-borne illnesses, rather than allowing them to control me.

The same is true not just for my daily schedule—which includes taking medications at the same times every day, and sticking to a consistent gluten-free, sugar-free diet—but for my weekly and more general schedule, too. When I was recovering from my relapse, I wanted to get better as soon as possible and thus scheduled more therapies and appointments than I could physically handle. I quickly realized that I did not have the energy to go to talk therapy and physical therapy on the same day. Conversely, my brain really needed three neurofeedback sessions a week instead of two. I started parsing out my week: physical therapy on Monday, neurofeedback on Tuesday, talk therapy on Wednesday, neurofeedback on Thursday, and so on. Getting well could not be rushed. It had to be my full-time job.

While I no longer need weekly medical appointments, I am still careful to stick to a schedule that works for my health. I teach classes in the mornings or evenings. I only write in the mornings, and not on days that I’m teaching. I don’t exercise during the week if I know I want to go kayaking or skiing on the weekend. I still go to maintenance integrative manual therapy and neurofeedback appointments every month.

I wish there was a magic schedule formula I could give all Lyme patients. But just as there is no set protocol for treating Lyme and co-infections because no two cases are alike, there is no set way for living your life with these illnesses. You have to learn your own limitations, and be willing to schedule your life within them. You have to learn your own boundaries and be willing to speak up for yourself. You have to learn which of those boundaries you can push and know what the consequences will be if you do so. And most importantly, you have to ignore other people’s opinions about your schedule. No one knows your body and its particular needs better than you do!


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Fear of Relapse

by Jennifer Crystal

Is Lyme disease ever really gone from your body? Relapsing is a constant reminder and reality that the bacteria are still lurking.

 

I am writing a memoir about my journey with chronic tick-borne illness. I avoided work on the manuscript for the last month not just because I was busy, but because I was scared. I’d hit the point in the story leading up to my 2007 relapse and I was terrified to write about it. This isn’t to say other parts have been easy to write; it can be difficult to revisit the angst and pain surrounding crushing fatigue, Herxheimer reactions, and migraines. That relapse looms as the very worst part of my whole journey. Ten years after that low point, relapsing is still my worst fear. It’s a worry many Lymies share.

Writing about the relapse meant I would have to confront that experience head-on. I shared my concerns with a writer friend, who asked what a relapse would look like for me. She hadn’t known me in 2007, and though she’d heard stories of what I’d gone through, she didn’t know the whole story of that period. Had it happened out of the blue? Had something caused it?

Lyme relapse can happen spontaneously, simply because all it takes for symptoms to recur is one dormant spirochete to start quietly replicating in the bloodstream. It’s possible that a Lymie could spend his or her days in a hammock on the beach and still relapse, because we can’t control what leftover spirochetes will do, the same way a cancer patient in remission can’t control when cancer cells start metastasizing again. That said, there are other factors that tend to contribute to Lyme relapse and we do have some control over them.

Because I had been feeling better, I stopped antibiotic treatment in summer of 2006. I continued to do well for several months, regaining so much strength that I was able to do a full workout at physical therapy. I was employed as an editorial assistant for a magazine, and was writing my first book. I still had some limitations, but I felt much better than in my bedridden days, and it seemed I would only continue to do so.

In November 2006, I moved to Vermont. I had been living in Connecticut with my parents for two years, and was ready to regain my independence. Instead of taking a small step, such as moving out on my own in their town, I rushed off to the outdoorsy environment I craved. But I wasn’t ready for that environment, and I didn’t realize that until I was there, five hours from my family and alone. I was not yet ready to ski, especially since my energy was now being spent on chores like food shopping, which my parents had taken care of in Connecticut. I knew how to fend for myself—I’d lived own my own in Paris and Colorado—but I didn’t have the physical stamina to do so in Vermont, not on top of taking care of my health and working. Very quickly, my fatigue returned.

I did my best to push through it, because work had suddenly picked up. On top of my usual writing and editing responsibilities, I was tasked with a huge research project that was far too taxing for a brain compromised by chronic neurological Lyme disease. It wasn’t long before I started experiencing brain fog, insomnia and anxiety again.

Then the muscular and joint aches came back, making it hard to type, and then the migraines, which felled me for whole days at a time. I didn’t have the energy to do laundry or cook, much less run errands. I saw myself headed back to the bedridden state I thought I’d left for good, and the mere idea of that terrified me. I became anxious about that possibility, anxious about not getting my work done, anxious about not being able to support myself, anxious that I wasn’t enjoying the Vermont lifestyle I’d envisioned. Stress, it turns out, is a leading factor in Lyme relapse.

“Getting that stressed out is like walking into a minefield of ticks,” my doctor told me when I called about the resurgence of symptoms. Stress causes a release of cortisol, which can speed up the reproduction of Lyme bacteria. The big move, the overload of mental work, the physical fatigue and the anxiety all created the perfect storm for me—especially because I was no longer on antibiotics. My system had no defense against the spirochetes that came raging back to life, replicating at such a rate that by February 2007 I was back in Connecticut at my parents’ house.

I could not stand the fact that I’d touched health, freedom, and independence, and then lost it all again.

I restarted treatment. It was a long, wobbly road, but eventually I battled my way back to remission once more. This time I took baby steps, moving just a few minutes from my parents, taking on smaller part-time jobs, really pacing myself, ever trying to ward off another crash.

I’ve been working to fend off relapse for a decade now. Even though I’ve gotten healthier and stronger—I moved to Boston, went to grad school, published my first book, started teaching, and started skiing—and even though I have a much better maintenance plan in place, I still fear relapsing. In a way the fear is good, because it keeps me on my toes;  it forces me to take care of myself, because I know how severe the consequences can be if I don’t.

When I explained all of this to my writer friend, she said, “Maybe writing about the relapse will be empowering. You’ll feel like you’re taking control over it.” Dubious, I gave it a try. To my surprise, the words have been flowing. I’ve written three chapters about my Vermont downfall. While I haven’t yet tackled the lowest point of my relapse, I’m getting closer to it. I’m learning that the best way to deal with fear is to grab it by the horns.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]