Lyme Disease Is "Rare" In Michigan
by Sharon Smith

"Gross!! Get this off of me," I yelled to my husband from the shower. He came running in to find me staring at an engorged tick on my stomach. I was a city girl, with no experience in ticks and their removal, nor was I interested in learning! My husband, however, being a country boy, had dealt with the ugly things before. He immediately took control of the situation. First step was Vaseline, but several minutes after applying a mound of it, nothing had happened. "Please get it off - I think I'm going to faint," I pleaded. Wiping off the Vaseline, he applied the next method in his arsenal - a lighted match! "Ouch!" was my response, but the tick did nothing. Finally, as a last resort, he yanked the tick out with a pair of tweezers. I didn't realize then that these attempts helped ensure that I contracted Lyme disease. It was May of 1989.

Having read a few articles about Lyme disease, I called my doctor. He advised me to watch for a bulls-eye rash around the bite. His closing remark was "I wouldn't worry, though. Lyme disease is rare in Michigan." Relieved by his words, I put the thought of Lyme disease out of my mind. My husband and I had recently built a home, and were enthusiastically involved in planting shrubs, trees, and flower beds. Summer passed, and then winter. When spring finally arrived, we were eager to begin work on our landscaping. My husband was sensible - he would put down his shovel in late afternoon, sit on the deck, and enjoy the beautiful day's end. I, on the other hand, would continue until it was too dark to see, ending up exhausted - but satisfied.

As the weeks went by, I began putting my gardening tools away when my husband did, too tired to continue. Then I began wishing he would quit a little early (not wanting to be the first to sit down!). By summer's end, I didn't care when he quit - I just couldn't keep up! I al noticed that my knees were becoming very painful, making it difficult to get up and down, or climb stairs. When family or friends would stop by evenings, I couldn't carry my end of the conversation - my mind would be totally blank. The fatigue made me long for them to go home, so I could lie down.

In November of 1990, I began having severe pain migrating to different areas of my back. By January, the pain and fatigue were so intense I could barely function, and I noticed many other strange symptoms that would come and go. I made an appointment with my doctor. After poking and prodding, taking x-rays and blood tests, he sent me home with medication for arthritis, muscle spasms, and panic attacks. Remembering the tick bite a year-and-a-half earlier, I asked him to do a blood test for Lyme disease. It came back negative. The medications helped somewhat, and I wondered if my symptoms were just a sign of old age. I was 51 years old.

We were animal lovers, and had three spoiled dogs, and four pampered cats. Creed, one of our dogs, began having epileptic seizures one weekend, and three days later, despite heroic efforts by our veterinarian, we lost him. I was under tremendous emotional stress during those three days. The next day, I suddenly became dizzy and broke out in a cold sweat. My heart was beating rapidly, and I was shaky and short of breath. I put my head between my knees, and after a while, I felt better. A few minutes later it happened again. When it happened a third time, I called an ambulance, afraid of passing out while alone. At the hospital, all tests came back normal, and after a few hours, I was able to return home. The next day, the symptoms returned. My daughter drove me to my doctor's office. He changed my medication for panic attacks.

Shortly after that, my husband told me about a man living less than a mile from us who had just been diagnosed with Lyme disease. His symptoms were very similar to mine. I asked my doctor to do another blood test for Lyme disease. While waiting for the results, I began having the panic attacks every half hour, and one side of my face and my tongue would go numb. The episodes would last about 10 minutes. In between, I would become very hyper and talkative. My husband insisted I go to the hospital, but before we could leave, the phone rang. It was my doctor. My Elisa had come back positive! I was so happy to finally have an answer for the myriad of symptoms that had overtaken my life, I began to cry.

I was my doctors first Lyme patient. He started me on IV antibiotics the next day. I found out about Dr. Natole soon after, and chose to have him manage my treatment. My doctor worked with Dr. Natole, willing to learn the proper treatment of Lyme disease. The first two years on antibiotics, I felt worse than before I started them. The sick fatigue was overwhelming. I had to continue working, as we were dependent on two incomes. Only by sheer willpower did I drag myself through my work day. I would lay my head on the back of the seat on the way home, barely able to drive. Once home, I would have to lie down on the car seat until I could manage the path to the house. Inside, my purse and coat would drop to the floor, and I would fall across the bed. My husband would find me there when he arrived from work. Several times, I called Dr. Natole's office, convinced I shouldn't continue the antibiotics. Each time his nurse would persuade me to continue.

Friends no longer came over, and most family members didn't understand what I was going through.. Relationships and activities that had brought pleasure to my life were no longer there. I felt deserted and alone. I forgot how to laugh. At times, I felt as if I was dying. Other times, I wished I would. Then my daughter began to have symptoms. (Her story will be in a future newsletter.) Having to deal with my daughter's illness as well as my own took its toll. In the past, I had wished I could live forever, so I wouldn't miss anything! Now, I sank into a deep depression, and thoughts of suicide began to cross my mind. But then slowly, after two years of antibiotics, I began to improve. First it was an hour here and there without pain or fatigue. Those hours became more frequent. In November of 1993, I was taken off antibiotics.

I had recovered approximately 70-75% of my former good health, and was able to live a fairly normal life. I began to laugh again. (Continuing problems with arthritis and Lyme encephalopathy have more or less remained on a plateau for the last three years. While I don't rule out a returning of my symptoms in full force, I am hopeful that I will remain at this point until better tests and treatments for Lyme disease are available.) I was eager to escape from all thoughts of Lyme disease, and for a year, I did - until Reverend Lindland wrote a letter to our local newspaper, asking people affected by Lyme disease to contact him. Pam Little and I were among those who responded. Reverend Lindland asked Pam and I to co-chair a support group. That was the start of what was to become the Lyme Alliance of South Central Michigan.

As I talked to people about their experiences trying to get a diagnosis and proper treatment for Lyme disease, I became increasingly angry, and determined to do whatever I could to help bring about changes. A year ago, several very talented people who have the same determination agreed to form the Lyme Alliance of SCM with me, and we are working hard to do our part. I am also honored to work on the board of the Michigan Lyme Disease Association - an organization that has done much to advance the truth about Lyme disease. I have talked to people from all over the country who are working just as hard, with an equal amount of determination. We put aside our good books, give up visits with family and friends, let our gardens overgrow with weeds, put off vacations - and instead spend these hours working for Lyme disease victims. When we look around at these people who are needlessly suffering, we know that morally we have no other choice.

My mother, ever practical, told me "It's wonderful that you are working so hard to help Lyme disease victims - (pause) - You don't get paid for any of this, do you?" I laughed, but then later, I thought: No, we don't get financial rewards, but we're rewarded in so many other ways. Every time we are able to guide someone to the help they have been so desperately seeking; every time we make a dent in the armor of those who try to block our way to proper medical treatment; every time one of the friends we've made in the Lyme community triumph over their illness, we are rewarded, and we are richer by far.

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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