Heartless virus, heedless doctors

West Nile: A firsthand account of the struggle with alarming symptoms and questions shrugged off by the professionals.

January 04, 2004|By Sheila Young | Sheila Young,SUN STAFF

Since 1999, there have been 115 human cases of West Nile virus in Maryland. Last fall, I became one of them, though it took more than three months of anguish to get formal confirmation.

Despite all the publicity about West Nile and the public fear of it, getting a definitive diagnosis proved curiously difficult. My husband and I asked my doctors numerous times whether West Nile was a possible source of my mysterious illness. Without exception, they all rejected the possibility.

Since then I've spent some time trying to solve the mystery: Why did doctors brush off my questions? And did that make any difference in my treatment and recovery?

The answers are complex, and doctors and health experts will probably disagree with my point of view. But I speak with an expertise they don't have: I'm one of the few people in Maryland who know what it is like to have West Nile virus. If they think there's no reason to have a sense of urgency about this illness, they should try living through it.

It all began at my yard sale in Ellicott City on the morning of Sunday, Sept. 7. The weather was warm and misty. The mosquitoes outnumbered the customers, and I had at least a dozen bites by the end of the day. I believe that's when I was infected.

The onset of symptoms was gradual. A week after the yard sale, I broke out in hives, my first ever. The following weekend, I noticed a peculiar soreness on the left side of my body - even my clothes hurt as they brushed my skin. There were no marks, however.

Though doctors can't say for sure now, it's likely that the rash and the soreness were early symptoms of West Nile virus.

At work on Tuesday, Sept. 23, I felt symptoms of the flu. I was feverish and had trouble focusing my attention. At home, sleep was difficult. I shook with chills and awoke through the night with uncontrollable sweating. I stayed out of work Wednesday, still thinking it was the flu.

But this "flu" was different from any other. The fever hovered around 102, though I was guzzling water. I had head pain and a stiff neck. And every time my fever broke with a sweat, it climbed again, and the cycle of fever-sweat-fever-sweat repeated.

My mental faculties were affected, too. Sometimes I went into a stupor, would stop in midsentence and just stare. I lost my sense of humor - I laugh easily, and yet nothing seemed funny anymore. But the illness made me unable to add it all up and say, "Something is very wrong."

When I was just as sick on Thursday, I decided to see my doctor. I told him about all the mosquito bites and asked whether I might have West Nile virus. He didn't think so, but he knew it wasn't the flu. He asked me to go to the emergency room at Howard County General Hospital for more tests.

After 12 hours in the ER, the neurologist on duty decided it was viral meningitis, an inflammation of the lining of the brain and spinal cord caused by some kind of virus - not contagious and not deadly. In fact, I was told, I had a minor case.

How did I get such a thing? We don't know, the doctors all said.

I got worse in the next three days. My temperature continued to fluctuate - fever-sweat-fever. I faded out in the middle of conversations and couldn't remember them just minutes afterward. Most of what I recall from this time is hazy, with details filled in by family.

My family asked my doctors numerous times whether I could have West Nile virus. The doctors almost laughed at the notion. I went home on Tuesday, Sept. 30, still thinking I had viral meningitis from unknown causes.

At home over the next few days, I was still waking up several times a night soaked in sweat. I had no taste for most food, even my favorite treats: potato chips, chocolate and wine. And I had an odd craving for green beans. I was home, but everything seemed strange. I wasn't myself. And a disturbing new symptom emerged: vertigo.

When I lay down, the room wheeled around me. I couldn't look up at the stars - or at anything above eye level - without wobbling off-balance.

Because the illness was viral, my doctors said the only "cure" was time and rest. But I had had plenty of rest in the past two weeks and - determined to get my old life back - I returned to work on Monday, Oct. 6.

Finally, the diagnosis

A week later - three weeks after I got sick - I got an alarming phone call early one morning. It was one of my doctors, talking on a bad cell phone connection as he drove to work.

"You xlkjlja West Nile skdjlskjf," he said.

What???

"You sldkjsl West Nile virus," he said again, but ended the conversation before I could gather my thoughts. In shock, I called my husband with the news, and he did some research on the Internet. We realized that I had had every one of the symptoms of West Nile virus. My doctors weren't really wrong in their initial diagnosis, but they didn't look deep enough. I did have viral meningitis, but it was caused by West Nile.

Why didn't my doctors consider that possibility?

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