TOUCHED BY LYME: Recovery is a long, slow, balancing act
Guest blogger Jennifer Crystal says there is no “magic secret” to getting over chronic Lyme disease.
After each blog I post, I receive dozens of emails from Lymies asking what I did to get better. People question whether I tried certain treatments, whether I’ve considered herbal therapies, whether I can tell them the magic secret to getting over chronic tick-borne disease. Rather than continue to email the same response, I thought it might help to address these questions in a post.
The first and more important thing I must tell you is that there is no magic secret. There is no set protocol for treating tick-borne diseases, because every case is different. Variables such as duration of infection without treatment, spread of infection to different areas of the body and brain, and presence of co-infections make it impossible for doctors to treat any two cases the same way. Lyme manifests itself in myriad ways, and people respond differently to various treatments. Some patients suffer more from joint pain, while others’ chief complaints are neurological. It’s important to find a Lyme-literate physician who can assess which treatments are best for your specific case. My LLMD spent two hours with me on our first visit getting my complete medical history; since that appointment, I’ve felt confident that he is treating the patient, not just the disease. That’s half the battle in conquering complex cases.
The other little known secret that I must make clear is that I am not cured. The positive, reflective tone of my posts, peppered with details of my now-full life, may make it seem like I am back to 100%. Unfortunately, it is very rare for someone whose illnesses went undiagnosed and untreated as long as mine did—whose Lyme crossed the blood brain barrier—to be cured. As we all know, spirochetes are hard to kill because they spiral and evade even the most powerful treatments. And as I learned when I relapsed in 2007, one spirochete left dormant in the body can silently replicate, like cancer cells, and attack with great force when the body shows any vulnerability.
After many years of a combination of treatments which I will discuss further in this piece and in future posts, I am proud to report that I am in remission. It’s always possible that I could relapse, and I must be especially careful in times of stress to listen to my body and nip flare-ups in the bud. I still have limitations. I must rest every afternoon, without exception, or I will hit a wall and meltdown physically and mentally like an overtired child. I’m hyper-vigilant about maintaining good sleep hygiene, so my body gets adequate rest and recovery time, and so I do not slip into the dark days of insomnia and hallucinogenic nightmares that I fought so hard to overcome. I still take a low dose oral antibiotic to keep the spirochetes at bay, as well as a host of herbal and nutritional supplements to keep things, as my doctor says, “humming along.”
Most importantly, I pace myself. My physician’s assistant once told me that the biggest mistake Lymies make is they push too hard when they start to feel a little better, and then crash. Who among us hasn’t done this? Back when I was bedridden on intravenous antibiotics, I itched to get moving, to rejoin the world of the living. As soon as I felt the tiniest surge of energy, I started physical therapy. I cycled thirty seconds on a stationary bike and wound up in bed for three days. I learned that we have to bottle up reserves of energy, so that we have more than fumes to go on when our tanks slip unexpectedly to empty. To use another analogy, a naturopathic doctor once told me, “Think savings, not credit card spending.”
The trick to this pacing, of course, is learning your body’s signals. Just as there is no set protocol for treating tick-borne illnesses, there is no set formula for living with them. It takes me much longer to do my schoolwork now than it would have in the old days, because I know if I read too much at once, the brain fog will start to roll in. I consider what my energy expenditure will be for the day—will I walk to school? Do I need to run errands?—when deciding whether I should do laundry, or unload the dishwasher, or if I should just save those tasks for another day. Do I get this balance right all the time? Absolutely not. Sometimes I push too hard and I pay for it. But I am at a point where I spend more time fine-tuning my self-care than crashing and burning, and that makes day-to-day living much, much easier. That makes it possible for me to attend class, to socialize with friends, to spend a morning skiing. To live a relatively normal life.
It’s taken years for me to get to this point, and one of the biggest hurdles I had to overcome was accepting tick-borne illness as part of my life. For so long I fought against it; I’d get angry at my body when it didn’t respond to treatment, get angry at myself for not taking better care, get angry at the Lyme for ruining for my life. After my relapse, I realized that Lyme would always be a part of my life, and it was up to me to decide if it—or I—would be in control. That’s not to say I’ve resigned to the illness. I still hope for a cure, I still work with my doctor to get even healthier. But I’m willing to take the Lyme with me on that ride. I know that working with, instead of fighting against, my limitations, only gives me more energy in the long-run.
Sometimes I think of Lyme recovery in terms of the stages of grief. There is a well-known acronym, SARAH, which stands for Shock, Anger, Rejection, Acceptance, Healing. It’s tough for Lymies to move from rejection to acceptance, especially when they feel so sick. It takes time and a lot of treatment to have the mental capacity to even consider the acceptance stage. Once you do, though, healing is just around the corner.
Here is a general list of things I’ve done to help get better. I can talk about some of them in more depth in future posts.
- Antibiotics: Lyme is a bacterial infection. Nothing kills spirochetes like antibiotics. The type of antibiotics, and the best method of administration, is different for everyone. However, it’s important for everyone to take some sort of probiotic, to avoid intestinal yeast overgrowth, which can occur when antibiotics kill good bacteria in the stomach along with the bad.
- Herbal and nutritional supplements: In my personal experience, herbs that work against tick-borne illnesses are an excellent adjunct therapy to—but not a replacement for—antibiotics. Nutritional supplements help to replenish nutrients that may be depleted due to the disease or treatment. Only your doctor can decide which combination of the many supplements available is best for your case.
- Gluten-free, sugar-free diet: Along with probiotics, this diet helps to keep yeast at bay. For some people, gluten and sugar also weaken the immune system and encourage spirochete growth. This diet has helped me to regulate blood sugar, which can be a problem for those suffering from the co-infection babesia.
- Psychotherapy: Illness of any kind can create serious havoc in your life and the lives of your loved ones, and can lead to anxiety and depression. An empathetic but goal-oriented therapist helped me to deal with the many ramifications of my illness.
- Integrated Manual Therapy: This is a type of hands-on therapy, like massage or Reiki, that, at the most basic level, helps to get different systems of the body working healthily. It can include cranial-sacral therapy and neurofascial processing. For more information, visit instituteofimt.com.
- Neurofeedback: Like biofeedback, this non-invasive treatment helps train the brain, using its own information, to perform better. This treatment is the only one that began to touch my insomnia and nightmares, and I still do maintenance sessions. For more information, visit zengar.com.
- Physical Therapy: It’s important to find a Lyme-literate therapist who understands not to push a Lymie past capability. It is also imperative not to start physical therapy until enough of the bacteria has been eradicated that you are really ready. For me, starting too soon only spread the toxins around my body and caused more harm than good. Once I was ready, a very slow buildup (one minute on the bike for a week, 1:15 the next, 1:30 the next) eventually got my stamina and muscles back up to speed.
Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at firstname.lastname@example.org.