Tuesday, April 27, 2010


If I have any medical practice at all, it’s out in the agora, the mercado, the public square.

Many years ago I was the volunteer tickettaker at a weekly community movie. This is a small, intimate town, so I knew many of the customers. It wasn’t unusual for a friend to hand me a ticket and say, “Hey, would you mind just taking a look at this rash?” As I punched their tickets, people raised their shirts, got me to look in their ear, feel their pulse. These weren’t what you’d call optimal examinations, but anthropologists might say that much of any exam is a ritual doorway into deeper connection.

There wasn’t time to do more than scratch the surface in the movie line, so these folks generally sought me out the following week, in our local supermarket. I can’t tell you how many healthcare conversations occurred in the bread section and over the oranges.

One was in the dairy aisle, with a man named Dave. He and his wife Sarah took total care of their adult son, who’d been brain-damaged several years earlier. Sarah, a retired nurse, was an excellent caregiver, but gave well past her depletion point, as many caregivers do, and felt continually guilty for not doing more. When she finally fell into a depression, she handled it the only way she knew, which was to see her doctor. The doc put her on antidepressants, but they didn’t seem to help. Dave asked me, “Is Sarah sick? Is she neurotic? What’s going on?”

Another afternoon, while I waited for my smoked salmon to be wrapped, Ray, a neighbor, brought me up to date on his predicament. A few years ago he’d developed a rash and joint symptoms consistent with Lyme disease, but blood tests were equivocal. His physician treated him as though he had the disease, though, and Ray improved. Then he flared again, and the treatment’s effectiveness waned. Ray obtained a second opinion, which was that he didn’t have Lyme at all, but more likely rheumatoid arthritis. He got dramatic relief from the oral steroids this doctor prescribed, but felt speedy during the day and insomnic at night. His first doctor said the Lyme bug must have invaded his brain; the second said the steroids were to blame. Confused, Ray had further testing done by a laboratory specializing in Lyme disease. He carried the results in his wallet. He took them out and asked what I thought. I couldn’t begin to understand what these tests even tested, let alone interpret results. He told me his doctors, for their part, offered him contradictory interpretations.

“What should I do?” he asked me. “One doctor says I have Lyme, the other one says I have something else, and no one’s treatments do much. And I’ve seen three other doctors in clinics and emergency rooms who tell me it’s all in my head.”

The following week, my friend Ann found me in front of the freezers. I asked why I hadn’t seen her in weeks. “Don’t leave home much now,” she said. “I’ve got chronic fatigue syndrome.”

She told me she’d stopped seeing medical doctors because as soon as they heard her history, they wanted to refer her to someone else. Some told her CFS isn’t a valid entity, and others didn’t say so but made it obvious that’s what they believed. No one has done anything to help her feel better.

I’m glad I saw these people in the supermarket. If I’d seen them in a medical setting, I’d probably have been as frustrated as their doctors. It's that phenomenon, medical frustration, that these patients all have in common. Their docs are disturbed that they don’t fit into mainstream medicine’s categories, so there’s no way they can fix them. Sarah’s depression isn’t a medical problem; it’s a tribulation of real life. Ray suffers more now from confusion than from his physical symptoms. Ann is angry about not being taken seriously.

In these cases, where it was unsure what the disease was, or whether there even was a disease, it was clear enough that the people were suffering. No kidding: every instance of sickness involves emotions. The disease can resist treatment, but we can always treat the emotions.

1 comment:

  1. Well perhaps you would like to read the presentations to IDSA review panel of the 2006 Lyme Disease Guidelines especially those presented by ILADS doctors at www.ilads.org

    The more you read about the complexities about Lyme Disease the more you will realise that your three patients could all have been suffering from Lyme Disease. Lyme is known to cause all those symptoms and can be treated very well on long term antibiotics, if one is fortunate enough to find an open minded doctor to consider Lyme Disease after ruling out all other possible causes and then treat you according to your response.

    Thank goodness there are some thinking doctors who are sufficiently open minded to treat us following ILADS guidelines.