TOUCHED BY LYME: Finding what it takes to keep you functional
Asks guest blogger Jennifer Crystal: Would life be easier if I didn’t take so much medication?
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 .
24 pills does sound daunting and finding the “right cocktail” even more so. Jennifer’s story is inspirational and encourages us all to listen to our bodies and find what works for us.
Great post Jen! Thirty-eight is my magic number of pills at the moment so I can totally relate to the juggling act you are managing. It has become a way of life and though shocking to others, it is still better than the time I spent on IV antibiotics! We do what we have to do to stay out of bed and on our feet. Keep up the great writing. I love to follow your travels.
I found it interesting that the author refers to Michael J Fox, since he is one of many undiagnosed lyme patients who treat symptoms of medical industry named “diseases”. His cocktail should be that of a borrelia patient, but like people saddled with “ALS” “MS” “CFS” etc, and Parkinsons, he is still in the dark about what causes these autoimmune reactions.
There is still so much misinformation about pathogens, MTHFR, reactions to microwave wireless, and helpful treatments like ozone, hydrogen peroxide, diatomaceous earth, even within the “lyme community”. I’m hoping that we can get on top of, and past all of this ignorance, and denial soon.
I just found Jennifer and was nodding my head emphatically in agreement when I came across Heather’s comment. Heather, you mentioned MTHFR. A completely separate doctor from my Lyme doctor had me tested and found I have a 1-gene mutation of MTHFR. What can you tell me about it, and Lyme? Dying to know!
Great article! I take a total of 96 pills a day. 6 are RX. The rest are nutrients and herbs – about 40. I get so tired of people telling me I don’t need it all. I crash when I go without my supplements. I would never have gotten well nor would I stay well without these supplements. The bonus is that I am much healthier than others my age that don’t have the laundry list of autoimmune issues and have never had Lyme or mold illness.
It is definitely a juggling act. My daughter became ill with Lyme at age 10 and diagnosed for almost 2 years so it had a chance to really set in the organs, tissues and brain. After battling for 12 years, IV’s, many oral meds, vitamins and supplements she has finally found her balance. After bringing energy field healing into her life she was able to start getting off her meds (9 perscriptions at that time). She is now medication free. Takes a manageable amount of supplements, juices, practices Yoga, has eliminated processed food, sugar,dairy and gluten, uses stress management techniques and has loving people in her life. She works full time, exercises and feels really good most of the time. So there is hope for all you. I encourage you to seek out healing your energy field. My co-worker who was chronic lyme for 25 years also brought this into his life and is medication free and feeling good, living a fulfilling life.
I am currently taking 63 supplements, 2 tinctures, 3 different drops, 1 spray and 1 shot a month. I am feeling much better after 4 1/2 years. I work closely with my Lyme Dr. and have regular blood work. It is all about supporting your bodies systems on all levels so you can recover. Lyme is a long scary journey, you do what you have to do to get through each day. Thankful when you feel good, never knowing when that will end, priorities are constantly shifting. Enjoy each moment when you can.
Thank you for the encouraging article. I have yet to find my cocktail of supplements and prescription meds to feel good. Fatigue is my toughest battle right now and I am having a few good days a week. I was diagnosed 2 years ago and was more optimistic then than I am now about recovery. I feel more “normal” about the amount of daily pills after reading your article and comments. I too have the three b’s plus one other co-infection. Still hopeful!
Thanks again!
Thanks for sharing! I, too, straddle the line, and the alternative I would face with the medication use is not an option. And the end of the day we have to do what is right for us, not what others claim is the right thing to do. Keep up the good fight!