Lyme disease is the fastest-growing infectious disease in the United States, and 2012 is predicted to hold the highest risk ever for contracting it. Like most people, Vibrant Life editor Heather Quintana didn’t think she was at risk. But after several years of seizures, night sweats, and severe fatigue, a blood test traced all her health problems back to a single tick bite.
It’s a shame I hadn’t noticed how strong and hard-working my immune system had been. For 30 years it had rarely even allowed a cold or flu to crack through its defenses. As if it were my body’s Employee of the Month, it was steady on the job, showing up every day, going beyond the call of duty without being asked. I failed to realize, however, its impressive work ethic until the morning it called in sick itself.
It was autumn 2005, and I awoke with a strange sensation—the feeling that my head was about to detach from my spine. Confused, I sat up in bed and managed a forced whisper to my sleeping husband, “I think I need help.” Before I knew if he had heard me, I fell back on the bed and had a seizure. Once I regained consciousness, I couldn’t speak or move my body; all I could do was open my eyes. While I didn’t know where I was or what was happening, I did know one thing: my entire body felt like it was shutting down.
My husband managed to deliver my limp body to the emergency room, where doctors offered me painkillers but no explanations. Unsure what to do next, my husband delivered my then slightly-less-limp body back to my bed at home.
Thus began years of random, unexplained seizures and countless doctors’ appointments and medical tests. Yet, as my time with doctors was increasing, so were my symptoms. Fortunately, even though my list of symptoms was long, the symptoms didn’t hit all at once. As a result, I was able to carry on with my life, even though it took a little more effort than before.
Some days I could even convince myself that I was fine—that it was nothing—but nighttime knew no denial. Night sweats left my sheets soaked, and my heart jolted, jumped, and raced its way to daybreak. Insomnia showed up too and brought along muscle aches and explosive joint pain. Some nights brought noise hallucinations and confusion: sometimes the sound of crackling gravel or gunshots, other times disorientation of place and person.
Daytime brought its own set of challenges. Some days just getting out of bed required an amount of mental determination drastically disproportionate to the task. It was getting harder to concentrate, I was drawing blanks, at times forgetting simple words in the middle of sentences. I was often uncomfortable in my own body, my arms and legs either numb or hurting. I was so sensitive to light that my husband playfully called me a bat. I was so sensitive to sound that music or television left my nerves raw. I was so sensitive to touch that one time after being bumped in a crowd by a stranger, I felt as if my skin had been singed. I was so sensitive to motion that on the way to our anniversary dinner, my car sickness forced my husband to turn around and take me home. The seizures came occasionally, too. Then came Epstein-Barr and Hashimoto’s Thyroiditis. I was becoming depressed and anxious.
All the while, I doubled up my personal efforts to be healthy. My diet was packed with fruits, vegetables, and whole grains; and I flooded my body with green drinks and fresh water. I got as much sunshine, fresh air, and exercise as I could manage. I prayed and tried to feed my soul a steady diet of positivity.
But my body became more and more worn down, and I couldn’t quite keep going as I had before. I decreased my work hours, slept later, and let the dirty dishes sit in the sink.
Finally when it started to feel as if I had taken every possible medical test, a physician’s assistant ran a simple test no one else had thought to run.
Mystery solved: a positive result for Lyme disease.
A Little Tick, a Big Problem
Lyme disease is the fastest-growing infectious disease in the United States. It is most often spread through the bite of a deer tick that has fed on the blood of mice, deer, or small birds that are infected with the disease. The ticks are tiny, often no bigger than the head of a pin, making them nearly impossible to spot.
For cases that are caught early, prompt treatment is usually curative. However, for the many people, such as I, who never identified a tick bite or spotted that tell-tale bull’s-eye rash that often accompanies a Lyme bite, the disease becomes increasingly difficult to treat—and to diagnose. One of the medical conditions identified as “the great imitator,” Lyme disease can advance into more complex forms, mimicking a variety of other ailments such as multiple sclerosis, lupus, or brain tumors.
As the disease burrows into the body, it passes through three stages. Stage one is early localized Lyme, which is not widespread and is the easiest to treat. Stage two is early disseminated Lyme, in which the bacteria have begun to spread throughout the body. In the final stage of late disseminated Lyme, the bacteria have spread throughout the body, even into the brain and heart. With each stage, the severity of symptoms can advance drastically.
Further complications can arise because ticks that carry Lyme disease are also often infected with other disease-causing microbe, or coinfections. For me, as for many Lyme patients, those coinfections involve other symptoms and treatments.
The Controversy and the Confusion
Unfortunately a haze of controversy swirls around the duration, diagnosis, and treatment of Lyme disease. Many people with late-stage Lyme are unable to regain their health, even after treatment, and claim to have “chronic Lyme.” However, many professionals in the medical field and in pharmaceutical companies reject the idea that Lyme can become chronic, and they define those lingering symptoms as Post-treatment Lyme Disease Syndrome (PTLDS) or “post-Lyme” damage.
Diagnosis of the disease is also controversial. Because of the difficulty in culturing the bacteria in the laboratory and the nonspecific symptoms the disease can have, diagnosis of Lyme is often based on clinical findings. Blood work is interpreted differently: one doctor can look at lab results and consider it positive for Lyme, while another doctor can look at the same results and interpret it as negative for Lyme. Understandably, many doctors offer treatment only after a test result is undeniably positive. However, because the reliability of the tests is debatable, some patients get negative test results for years before finally getting a irrefutably positive result—thus delaying treatment.
Just as there is disagreement on the duration and diagnosis of the disease, there is equal disagreement on its treatment. The standard of care for Lyme is typically 10-28 days of antibiotics. While that is usually sufficient for stage 1 patients, many stage 3 patients claim to still have symptoms long after the treatment and insurance have run out.
For me, treatment of Lyme and its coinfections involved several rounds of antibiotics, including intravenous antibiotics administered daily at home, monitored by a home health nurse. I also tried a number of complementary paths as well.
That’s Going to Leave a Mark
Fortunately, my health has improved drastically. While Lyme weakened me in some ways, it strengthened me significantly in others: it left me more compassionate, self-disciplined, health-conscious, and grateful than I was before. Having lost my health for a while, I learned to value it and fight for it as never before. In the end, that little tick taught me some big lessons about life and health.
Heather Quintana lives with her husband in Boonsboro, Maryland, one of the hot spots for Lyme disease. Her experience has become a bit of a cautionary tale, resulting in several diagnoses and lots of Lyme-preventative measures among people she knows.