I had Lyme disease for several years in the early to mid 1990’s. This was about a decade before it was identified as an epidemic in New Hampshire, so I was misdiagnosed all along the way.
I know exactly how and where I got it. I was showing off for a lover. I was brushing back the edges of my back field with a weed wacker. The back field that had this lovely small herd of deer that came out of the woods to graze at twilight every evening. I was wearing knee high rubber boots and safety glasses and a thong bathing suit. That was a fashion statement right there, I’ll tell you what. Apparently, this look didn’t impress my lover much, because the lover soon went back to California, never to be seen again. What I did get from that stellar outfit, however, was sick as a dog for years.
Not long after the bare-assed weed wacking, I noticed a small tick embedded in my upper thigh. I pulled it out and it made a distinct “popping” sound when it released. I didn’t think much about it—it was about this size: o. I do remember thinking that we didn’t see ticks much at all when we were kids. Now ticks were becoming a pretty common occurrence, especially on our dogs. In due time, I noticed a large crusty, angry red ring around the tick site—about the size of a saucer.
I had read in some medical journals about the newly identified tick borne disease, named Lyme’s, after the town in Connecticut where it was first identified. The disease had also been found on Cape Cod in Massachusetts. I was positive that this was what was going on with my thigh, so I went to my family doctor. He took one look at my angry red saucer and said, “No, that’s nothing.” Really? He took a blood sample anyway to test for Lyme antibodies. The test came back negative. He sent me on my way.
(Years later, I asked this doctor why he ignored such a clear symptom as the obvious erythema migrans rash. He said, “Because Lyme’s wasn’t in New Hampshire yet.” I said, “What?!? You think these ticks know when they’ve crossed the state line? Don’t you know that our highway signs say, ‘Welcome to New Hampshire’?”)
I swear I felt it when the spirochetes spread throughout my body. I felt a rush of adrenaline and my heart began pounding. My whole body was on hyper-alert, as if sirens and alarms were screaming, “DANGER! DANGER! DANGER!” I remember thinking, “Aliens have just invaded my body.”
Eventually, I developed searing arthritis in both of my index fingers. I had a mean, headstrong horse at the time, so I thought maybe I had damaged my fingers by trying to rein her in. Honestly, the excuses I made for that damn disease were unbelievable. The arthritis traveled quickly to all my joints until I was pretty debilitated with pain.
It was about this time that Tom and I hooked up. Right smack dab in the middle of it when I was a raving, crippled lunatic. Tom probably just thought this was normal behavior for me. I was so lucky that he loved me unconditionally. I guess it was good to have set the bar so low—it could only go up.
I tried everything. I prayed. I cried. I meditated. I visualized a healthy, pain free body. I did massage, Reiki, acupuncture. I hemorrhaged money. I saw healers and shamans and charlatans. Most of the charlatans wore white coats, by the way. Physicians told me I had all of the “hysterical woman” garbage can ailments. I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Epstein Barr Virus. One MD recommended that I take Ibuprofen. I looked at him, “Are you serious? I’m eating Ibuprofen like candy. If I had known, I would have invested in stock in Ibuprofen. I call it Vitamin I.”
This is how crazy that disease was: One time I was on the train from New York City to Boston after meeting with my editor at Viking Penguin. I was sitting quietly with my eyes closed. I gasped as I felt a screaming, scorching pain in my knee that lasted for about five minutes. Then I felt as though my shoulders were on fire, as if I’d been tasered. Then my jaw hurt so much that I couldn’t bear it. Then my ankle felt as if it had been zapped with an electric cattle prod. Then a pain started deep down in my pelvis, like the pain of childbirth. Holy Mother of God. The pain traveled to five different joints in under thirty minutes. No wonder physicians thought I was nuts—this disease was freaking INSANE!
After the episode on the train, I said “F-this.” I prescribed a 10-day course of antibiotics for myself. The antibiotics worked for several months. I had a short respite where I was deliriously pain free. Of course, we didn’t know back then that wasn’t long enough for an established disease like mine—and the aliens came back with a vengeance. The aliens had multiplied exponentially.
I had good days and bad days. On a “good” day, I only felt dizzy and a little “off” –“a half bubble off plumb” as Tom called it. On bad days, I felt like I may end up in a wheelchair.
In the fourth summer, Tom and I traveled to British Columbia so Tom could kayak the melting glaciers with some of his extreme whitewater-paddling friends. This is when I got really sick. I was running shuttle for the boaters and I would go fly-fishing while they ran the rapids. I would drive around those mountainous roads with one hand on the steering wheel while I rested the other hand in my lap. I couldn’t keep my arms up for more than five minutes without a break; I didn’t have the strength. I couldn’t raise my arms high enough to wash my hair. I used soup cans to exercise with, trying to do strength training by flexing 15 oz. cans.
Finally, the arthritis moved into my jaw so I couldn’t eat. I got a Bell’s palsy in the right side of my face. My face drooped a little bit. Then it moved into my ear. My ear was scorching hot to the touch, turned red and swelled up to the size of an apple. I think the stress of the spirochetes triggered a Herpes Zoster infection in my face. I was a mess. I think I tried another course of antibiotics somewhere in here but it didn’t touch it.
I was a mess…but I was in love. Tom and I slept in the back of our Jeep with the dogs. We were amidst the most beautiful landscapes I had ever witnessed. Rolling thunder and lightning spiraling in a glacial bowl. The Hounds Tooth Glacier in Bugaboo Park. Lake Louise. The horrific mosquitoes in McBride, British Columbia. But it was in Whistler, when I couldn’t stand up any longer and had to sit down on the sidewalk, that we decided to go home.
Somewhere on the way home, somewhere east of the Rockies, I said to Tom, “I don’t want to jinx myself…but I think it’s gone.”
Tom was driving, so he was looking straight ahead. “What’s gone?”
“ ‘IT’ …the aliens. I think the aliens have packed up and moved out.”
And it was true. Miraculously, I was fine. No pain, no arthritis. Just gone, like it had never happened. Days later, when we got home, I said to Tom, “Look!” and I did a cartwheel.
Moral of the story: Never ever show off by wearing only a thong when working in the woods in New England.
Postscript: I am, understandably, completely freaked out about the possibility of being infected with Lyme again. That is why I travel with Doxycycline at all times. The CDC’s current recommendation is to take as prophylaxis a single dose of Doxy (200 mg) post-exposure of a deer tick bite. I double this. I don’t care if it makes me nauseous. I have done this protocol a few times over the past decade and I believe it has served me well.
I do not know why my infection left my body when and how it did. I hadn’t done anything special. I realize that this is not a normal scenario and that the outcome is usually a lot direr. All I know is I have been asymptomatic ever since. I believe I may have been “herxing” when I was so sick in Whistler that I couldn’t stand up. The worsening of my symptoms at that moment may have been a result of the bacteria “die off” in my system. I don’t know.
What I do know is this: I had been a widow for many years and now I was going home with the man who was to become my husband. That’s it.
~ Carol Leonard, Bad Beaver Publishing, Copyright 2013.