Most of us expect to reach a few milestones by the time we enter our late twenties—kids, settling into a career, buying a house, getting married.
Something else marked this period in my life—a tick bite I didn’t remember getting.
News broke last week of singer, Avril Lavigne’s battle with Lyme disease—the disease discovered in the 1970s, and characterized by achy joints, flu-like symptoms and a bull’s eye rash caused by a tick bite.
Lavigne reportedly said she thought she was dying. So did I nearly four years ago—but not from a tick bite.
The chronic fatigue diagnosis has followed me around most of my life. I haven’t done much to stop it—always favoring work instead of rest.
But in 2009 I began having problems with my immune system. I had cold or flu symptoms at least twice a month—even when the viruses weren’t circulating. I chose to believe each one would be the last because I wasn’t ready to consider the possibility that I was plagued by something more serious like Leukemia or Lyme disease.
My attitude changed one September day in 2011. I began climbing a flight of stairs and was immediately unsure whether I would be able to reach the top. I did, but it took a long time.
The denial was over. I knew I had to find help. Initially I visited a holistic practitioner who told me I had mononucleosis.
And she was right, even though a later visit to my regular doctor resulted in the familiar diagnosis of fatigue. Hundreds of dollars later—after two blood tests, an x-ray, and testing for a couple of autoimmune diseases—he told me what I already knew.
My doctor offered a second and different test for mono. Frustrated by his polite, but apparently skeptical nodding and smiling, and late for a lunch appointment, I declined the second test.
My husband and I were dining with friends the following year. We told the one friend—a doctor—about the problems I had been having. He didn’t think I had mono either.
He thought I had Lyme disease. He prescribed testing for Lyme disease, for a mono antibodies test—a different one than I had originally tested for—and several thyroid tests.
The mono antibodies test was positive—to be specific, recent, or relapsing and remitting. The crushing fatigue came back every six months for two years after staring down that set of stairs.
But blood testing for Lyme disease is notoriously unreliable—one fact the entire medical community agrees on. I took the test anyway.
The results were negative. I had antibodies from the disease-causing bacteria in my blood, but not enough to confirm a positive result for an active case of the disease. The doctor who prescribed the testing thought we were probably looking at a case of Lyme that evaded a blood test. So did the first practitioner. The doctor prescribed a course of antibiotics. I got worse temporarily.
I was angry. Angry for the circumstances in our lives surrounding the illness. Angry for feeling too weak to walk to the mailbox or use a fork. Angry for the setback to my career and to our plans as a family.
Writing—particularly journalism—relies on speed. Speed is required for meeting deadlines and for keeping up at news conferences. I lost this ability. I couldn’t immediately remember nouns—easy words like “book” or “table.” I got lost easily. Many people suffering from Lyme disease get lost in their own neighborhoods. I was sleeping at least 16 hours per day while at my worst because I couldn’t do much else.
When it comes to medical mysteries, Lyme tops the list. The disease-causing bacteria, Borrelia burgdorferi are good at hiding from the immune system. They settle in tissues other than blood.
Having Lyme in South Carolina is complicated by the fact that some doctors think the disease can only be picked up in the Northeastern and Western parts of the country, where the disease is endemic.
Crushing fatigue and a set of stairs. This is where my journey began. I have medical opinions, but I still lack an official diagnosis. And that has left me unsure of how to talk to others about my experience with the disease. But I’m hoping to be able to help people going through similar things.
I’ve amassed a library of knowledge on Lyme. Ever since the beginning, I read a lot of books and watched a lot of YouTube videos of people who received the dreaded Lyme disease diagnosis. If you have any chronic disease, skip this step. You’ll find a lot of frustrated sick people seeking acknowledgement of how sick they are, but you won’t find a lot of hope. And there is hope for chronic illness.
Lyme is dubbed the great imitator for a reason. It mimics a range of diseases from fibromyalgia to ALS. It’s a serious disease, and it’s tricky to diagnose.
Some people with Lyme struggle with seizures, lameness and other neurological problems. Some people die from it.
I battled mono, severe fatigue, and problems with memory and concentration. For years I fended off chronic fatigue and problems with my immune system. I’m still fighting it, but I’m not where I was four years ago.
I often wonder if we are fighting chronic diseases the wrong way. We attack the disease and weaken the body. But the Lyme bacteria are good at evading antibiotics.
I’ve taken a combination of naturally occurring antibiotics and prescription synthetic antibiotics. But I’ve also learned how to build good health through diet and lifestyle. And I’m always building my stress management skills.
This is a blog dedicated to writing, design and a little story telling. Lyme disease is part of my story. And at this point in my story, I can climb stairs and track pressers easily.