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Heartless virus, heedless doctors

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.

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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.

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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.

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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.

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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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"One of the things against you is your age," said Dr. John Bartlett, chief of infectious diseases at the Johns Hopkins University School of Medicine. Until this year, severe illness was "far more common in elderly patients. This year, the average case is 57 years old."

"Second, it's not been a big year for West Nile virus in this part of the country," he said.

"If you're surrounded by people who have it, the assumption is that the next person who has a suggestion of it, you'd consider it."

West Nile virus was first identified in the United States in 1999, and it was scary. People died from mosquito bites.

In Maryland, West Nile illness is still rare. And almost everyone who is infected never has symptoms or has mild symptoms, such as fever and headache, that disappear in a few days.

About 1 percent of those infected have the kind of severe symptoms I developed, but in this group, about 10 percent die. Some patients can have long-term neurologic damage and paralysis.

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The 115 cases in Maryland since 1999 is in a population of 5.2 million. But the number of West Nile cases increases here every year. This year there were 73 cases; last year there were 36. In 2001, there were only six. And 15 people have died.

"I think somebody that has viral meningitis in the summertime in the United States has to be considered a candidate for West Nile virus," Bartlett said.

"There's a thousand viruses that cause disease in people. Out of those, there's only a handful that cause meningitis or encephalitis."

But many of my doctors seemed ill-informed about West Nile.

For example, the specialist who called me with the diagnosis told me not to be alarmed. Only patients over 70, he said, were at high risk for death and neurologic damage from West Nile. (Well that's a relief, I thought. I'm only 48.) Not so, a state epidemiologist said later. The high risk for severe symptoms starts around age 50.

More questions

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Would an earlier diagnosis have affected my treatment or my chances for recovery? Clinically, no. As one infectious disease specialist said afterward, "We didn't treat you. Your immune system treated you."

But there's more to recovery than clinical treatment. I had no idea how I had gotten so sick, and it scared me. Once I understood what I was fighting, I knew what questions to ask. I felt stronger, more in charge of my health and less like a victim of an unseen enemy.

More than three months after I got sick, I still have vertigo. But now I've found a doctor who doesn't brush off my questions, and that makes a big difference in how I cope with this last unpleasant reminder of my illness.

He said viral meningitis can damage nerves that affect balance. Those nerves can take a long time to heal, and sometimes they never do. I might have vertigo for a long time, maybe for the rest of my life. But if it never goes away, at least I'll know why. And I can live with that.


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