TOUCHED BY LYME: Finding what it takes to keep you functional

Each day I take 24 pills. Some are prescriptions, some are vitamins, and some are herbs. All tally up to the cocktail that keeps my tick-borne illnesses in remission. I have a big, week-long plastic pill box that rivals those seen in retirement and convalescent homes. I carry a snazzy round case resembling a makeup compact in my purse, so I can surreptitiously take my medicine when I’m out to dinner.

My friends are used to seeing me pile a colorful collection of capsules next to my plate when they come over for meals. I never think about hiding my big box, or the tubs of supplements that line the kitchen counter, when I have visitors. But for someone who doesn’t know me, or doesn’t know life with chronic illness, 24 pills might sound shocking.

Many years ago, before I was diagnosed with chronic tick-borne illnesses, I read Michael J. Fox’s Lucky Man. In this memoir about life with Parkinson’s disease, Fox writes matter-of-factly about the cocktail of pills he takes to keep his symptoms at bay. For him, the question is not: can your body really handle all that medication? Instead, the question is: what will happen if you don’t take that medication? The answer: a resurgence of symptoms so severe that medication is not an option. It is a necessity for living a healthy life.

People have asked me if I worry about side effects. We Lymies know all too well the ongoing debate about the efficacy and safety of long-term antibiotic use. For Michael J. Fox, the quality of life made possible by his medication far outweighs the potential risks of taking so many pills. The same is true for Lymies. Would life be easier, simpler, more status quo if I didn’t take so much medication? Absolutely. But that’s not my reality. My reality is that I have several chronic illnesses and I must take medication to manage them.

I know there are risks, just as a cancer patient knows chemotherapy carries risks. Anyone with a serious illness must choose the lesser of two evils, because the evils themselves are givens. That’s the nature of the beast for those who live, as Susan Sontag so aptly described it, in the kingdom of the sick. It’s a quandary that inhabitants of the kingdom of the well can’t always understand.

Medication is often the bridge that allows patients to live in both worlds. That said, it’s important to exercise caution. I have my blood tested every month to make sure that my medicine isn’t adversely affecting my body. I monitor my symptoms and reactions, and speak with my doctor frequently about any changes. We’ve worked hard to find the exact pyramid of treatment that is right for my specific case, and we know that pulling one block from that pyramid can cause the whole thing to come crashing down. On the other hand, we don’t want me taking medication unnecessarily, so we sometimes tweak the blocks, always keeping the big picture of my overall health in mind. We’ve learned that some of my stronger medications are only occasionally necessary, as a maintenance sweep. The few difficult days I have while on that medicine are far better than the daily struggle I would have if I didn’t do the treatment at all.

There is no set protocol for treating tick-borne disease, because every case is different. Similarly, there is no set protocol for keeping a recovered Lymie in remission. For some people, natural herbs work best. For others, it’s necessary to stay on low-dose antibiotics or maintenance-level anti-malarials. Still others are able to stop treatment entirely, while doing that for some will cause immediate relapse. Each patient must figure out what allows him/her to stay on top of his/her personal pyramid.

For me, as I described in an earlier post (Recovery is a long, slow balancing act) this means using a combination of adjunct therapies along with my cocktail of medications and supplements. It means taking 24 pills to keep a 24-hour day running smoothly. And if that means I get to live full, happy, healthy days, that I can keep myself from relapsing back to the days of even more medication and intravenous antibiotics, I’ll take it!

Jennifer Crystal, MFA, is a writer and healthcare advocate in Boston. Her website is www.jennifercrystal.com. Email her at  jennifercrystalwriter@gmail.com .