My mother is a strong, independent woman, and watching her suffer from Lyme disease over the past 14 months has been one of the hardest experiences of my life. The unnatural loss of typical everyday functioning made me feel as though I was watching her age prematurely.
Before the actual diagnosis, we watched things change pretty dramatically for her. The months leading up to her diagnosis, she suffered from a variety of extremely painful, oddly disparate symptoms, including chronic back pain, fatigue, swollen and inflamed feet and numbness in the arms, hands and legs.
She recalls this challenging time as well: “I limped for months. No show was good, no car was good, no seat was good. I changed my vehicle, I changed my motorcycle, I changed my living room furniture, my dining room furniture, I changed my desk chair at work — all of this to try and fix what was wrong with my back; there was nothing wrong with my back.”
Normal activities were no longer enjoyable based on the seriousness of her pain. We clearly loved shopping, as mothers and daughters typically do. Our shopping experience for Christmas 2011 was nothing less than terrifying for me.
It consisted of one store and my mother sitting due to her excruciating pain. I ran around the store collecting item and ideas for gifts and bringing them to my mother for her approval. It was like she was 85 years old and time had just fast forwarded. Watching her in pain and completely exhausted from a formerly typical activity broke my heart. I questioned whether we would brave shopping together again.
Not only did her body hurt, her pain was often unpredictable. Unfortunately, her mental capacity was impacted as well; her memory and mental acuity was changing and becoming yet another hurdle.
My mom remembers one event that was especially scary when she was driving home from a doctor’s appointment: “I got back in my car, continued driving home, and the next thing I knew I was up in a snowdrift on Route 1. I had no idea how I’d gotten there, and I had no recollection of my hour-and-a-half-long doctor’s appointment. I called my husband, who drove out to get me and took me home.”
The hardest part for me was that she began to lose trust in herself. My mother was losing her sense of self and her identity and no longer completely trusted her judgment or abilities.
Her doctor visits were endless and the medical opinions varied. She received a new diagnosis weekly, depending on which specialist she was seeing. The diagnoses ranged from plantar fasciitis to fibromyalgia and arthritis. Treatments for these diagnoses did not begin to relieve her pain.
Her pain was my pain, and I was terrified for what the future might bring.
After suggesting a few times, I finally insisted that my mother see a family friend who was a physician. I no longer cared about her concerns regarding boundaries but just wanted someone who knew her previously to give a medical opinion.
My mom recalls her first meeting with the doctor who took one look at the symptoms and said, “You have Lyme disease.”
She had thought she’d known what Lyme looked like. They sent her to get her blood tested — it’s called an “ELISA test” — and three weeks later she got a negative result. So the doctor recommended a second test — “the western blot” — which is more sophisticated. It came back positive.
Since that time, my mom has been on a strict regimen of antibiotics and herbal medications. She is currently on one antibiotic and eight herbal medicines, and she was also required to drastically change her food intake, eliminating sugar, gluten, alcohol and dairy. Frustrating as these changes were, we all felt lucky that she was able to access the type of treatment she required.
Not only was she able to see an osteopathic doctor, but she is now is having her Lyme treatment overseen by a doctor who specializes in the treatment of Lyme disease. Finding a Lyme literate doctor can be difficult.
The prevalence of Lyme disease is on the rise, and early treatment is imperative. As part of a family living with a member suffering from Lyme disease, I offer some advice:
1. Insist on getting tested. Get tested more than once and by multiple tests.
2. Don’t take no for an answer. Many doctors will not recommend testing because there is no rash or even a bite site. The common approach to treatment is 28 days of antibiotics. This is not always sufficient.
3. Require being seen by a doctor who is Lyme literate.
4. Understand and learn about the misconceptions around Lyme disease. Know you may not always see a tick or have a bullseye at the bite site.
My mom has been in treatment for 14 months now, and we are still taking it one day at a time. We hope our story serves to educate, protect and possibly save others from the chronic pain and suffering that my mother has endured.
Tara McDonald, of Portland, is a co-director of Heidi’s House Child Care Center in Scarborough. Her mother, Heidi McDonald, of Buxton, owns and manages Heidi’s House.