Lyme disease: The great masquerader

The Harvard Post
This year, my Labor Day weekend was dedicated to replacing a retaining wall. The original 90-foot structure, built with railroad ties, had eroded over the years, forming a massive jungle of rotting ties, thorny vines, and long grass. Several family members came to help, and I rented a Bobcat. We hauled old ties out of the tangled weeds on Saturday, and were covered with welts, dirt, and bug bites by the end of the day.

Starting the new wall on Sunday, I felt dizzy and weak. My helpers graciously offered to do the manual lifting, while I drove the Bobcat, but I barely had enough energy for that. I finally climbed out of the cab, and collapsed on my front yard. Thus began my descent into the puzzling and painful world of Lyme disease, where I learned firsthand how hard it is to be diagnosed and treated for this dreadful disease.

As I lay dazed in the midday sun, my neighbor, Brad, came over. He talked to the rest of my family, and helped move some ties. Had I been more coherent, I might have heard him say that his wife, Karen, was starting to feel numbness and tingling in her hands and feet. Feeling useless, I eventually just went to bed. It was Monday afternoon, 24 hours later, when I finally got up.

When I went to work on Tuesday, my neck was swollen and sore. I also had a large red patch across my back and chest that looked like sunburn. By Wednesday, my neck hurt so bad I couldn't move my head, and my shoulder ached. My chiropractor said that muscle strain could cause the pain, but he had no explanation for the red patch. A bull's eye rash would have been more recognizable, but Lyme disease doesn't always leave such obvious clues.

During the day, the pain was tolerable, but at night it was horrible. My various aches intensified around bedtime, and got worse when I lay down. I couldn't find a position for my arm that didn't hurt, and I rarely got more than three hours of sleep.

Then, for no apparent reason, my face started drooping on one side. For three days, I progressively lost motion in my mouth, cheek, and right eye. By Monday, two weeks after Labor Day, half my face was completely paralyzed. Talking, eating, and drinking were difficult, and I looked like the Hunchback of Notre Dame. Two contractors were helping me finish the wall, and one said to the other, "I don't like that guy; he doesn't show any emotion." I guess he was half right.

I had Bell's palsy, a paralysis of the face. My neighbor, Karen, who developed a milder version of the same thing, suspected Lyme disease, and convinced me I had it, too. Lyme disease comes from deer ticks, and I probably encountered one in the weeds by my wall. I took a blood test, and requested antibiotics to get a head start on the
disease while waiting for the results. Since I never saw the tick that bit me, and didn't develop a bull's eye rash (known as clinical evidence), my doctor refused to prescribe anything until the tests came back.

Karen had more trouble with her doctors. On the Wednesday after Labor Day, she had heart palpitations, a migrating pain in her leg, back, and arm, and felt constant numbness and tingling throughout the left side of her body. By the end of the week, she had headaches, and her arm was weak and wobbly. Afraid she was having a heart attack or stroke, Karen saw three different doctors that week. One said it was all in her head, another prescribed a tranquilizer, and the last said she should go home and have a beer.

Karen had two Lyme tests, both with negative results, so she requested something more reliable. This time, the test results showed Lyme activity, but not enough to be above the standard guidelines. Her doctor said she didn't have the disease, so Karen found a specialist on the Internet.

This 'Lyme Literate' doctor determined that Karen had the disease based on her symptoms (a clinical diagnosis). The activity seen on her previous test confirmed the diagnosis, so he prescribed an antibiotic. She needs to take the medication until one month after her symptoms go away. No one knows how long it takes to eradicate Lyme, because the bacteria hide from antibiotics and vaccines.

My Lyme test came back positive. I was given four weeks of an antibiotic, and all my symptoms were gone by the end of it. A few days later, though, I started having heart palpitations, tingling in my fingers, and pain in my elbows. Initial Lyme symptoms can diminish, even without treatment, while bacteria penetrate deeper into your system. This is known as Chronic Lyme, which may exhibit completely different symptoms. The clever masquerader can change its disguise to avoid detection.

My doctor wouldn't refill the antibiotic without more testing, so I called Karen's Lyme Literate doctor. He no longer deals with insurance, and charges $425 for the first visit (not counting lab fees). I called three other Lyme specialists, and they don't bother with insurance either. If my problems continue, I may have to raid my kid's piggybank. Just before Thanksgiving, Karen took her fourth Lyme test, and finally tested positive. Now she knows her medication should help, and that she's been right all along.

The number of Lyme cases in this region is astounding. Debbie directs a children's choir at Karen's church, and suffers from Lyme and Bell's palsy. She says that 11 people were stricken in Harvard this year, and learned that 15 doctors at a local facility are treating 10 cases of Lyme each. I met Darcy because she was describing her Bell's palsy at a party. She knows a third grader with the disease, a man on Stow Road who had it three times, and another boy who got it when a tick bit him in the eye. Many of these people, including Debbie and Darcy, had trouble getting diagnosed and treated correctly.

Considering the number of people with Lyme, and the amount of information available, it's puzzling why the medical community seems so unprepared to handle the disease. Maybe the reason is that Lyme isn't fatal or contagious. Or, perhaps, it's because treating the disease isn't lucrative for insurance and pharmaceutical companies. Or, maybe it's the elusive nature of Lyme bacteria. One thing is clear: Until doctors sort this out, people will continue to be ignored or misdiagnosed.

Whenever symptoms don't make sense, or won't improve with treatment, it might be Lyme masquerading as something else. Ignorance is not bliss when it comes to this disease, and help is available through numerous educational and support organizations on-line. As Karen says, "You need to be your own best advocate."