'My trip into West Nile purgatory'
09/02/2012 12:15 AM
11/12/2014 2:38 PM
You won't hear Dr. Lyle Petersen of the Centers for Disease Control and Prevention refer to a mild case of West Nile virus.
The director of the CDC's Division of Vector-Borne Infectious Diseases speaks from experience: He got the virulent virus 10 years ago.
"After I got it, that was the last time I called West Nile fever a mild disease, I can tell you that," he said. "Most people don't appreciate how bad the 'quote' mild form of the disease is. It can be horrible."
A long-distance runner, Petersen, 57, hadn't called in sick in 27 years, but the streak ended when he went for a run in 2003 near his home in Fort Collins, Colo.
"It was amazing: After three miles, I had to walk home. Within hours, I was in bed with symptoms that included fever, headaches and neck stiffness. I had horrible back and muscle pain. I couldn't eat. I was in bed for a week and sick for 10 days," he said. "It poleaxed me."
The same tree fell on me. And after more than a month, I'm still crawling out from under it.
I was never hospitalized, but I experienced virtually all the symptoms associated with West Nile fever: nausea, fever, muscle and joint pain and headaches.
My wife claims I was also irritable, another common byproduct. Duh.
But I also had symptoms such as neck stiffness, drowsiness, confusion and double vision that are linked to the more serious neuroinvasive form of the disease.
"The reality is unless you have meningitis or encephalitis, then everybody else is lumped in this category of West Nile fever and the range for that category is pretty wide," Petersen said.
"I know a few people that had a headache and go to work every day and then there are people like you and me who are just knocked out. There are people who seem to have long-term symptoms of West Nile fever, but it's not very well categorized. I think the bottom line is there is a huge spectrum of illness, even for people who don't have neurological disease."
Of the 1,118 cases in 47 states reported to the CDC as of Wednesday, 629, or 56 percent, were classified as neuroinvasive, Petersen said at a briefing.
There have been 41 deaths.
For Petersen, the most surprising aspect about the outbreak has been the scope of the epidemic in North Texas.
"I think the sheer magnitude of the outbreak in Dallas-Fort Worth is really impressive," he said.
Like my editors, my physician, Dr. Alfred Hulse, thought I should write about my trip into West Nile purgatory.
But I was highly reluctant. It's way too personal. And who wants to be the face of West Nile virus? Or, worse yet, the wimp whining about his discomfort when plenty of people have been sicker or have died, including five in Tarrant County and 34 in Texas as of Friday.
But when I heard that Petersen had also been infected, I knew I had found my first-person parachute. And the CDC expert was more than happy to lend credibility to my month-of-moans story, which, frankly, I still have a hard time believing myself.
It was oddly reassuring to have the nation's point person on the West Nile outbreak want to hear everything that happened to me.
Turns out, our symptoms were nearly identical, right down to the wishful thinking that we could somehow will our way out of the West Nile hole.
"I thought if I didn't act sick, I wouldn't be sick," Petersen said. "That doesn't work. I went back to work after a week, and I lasted about five minutes."
Even though I'm a lifelong mosquito magnet, the virus wasn't even on my radar when I went to Hulse's office in late July with what I thought was a nasty strep infection.
I was taken aback when I was instead diagnosed with prostatitis, or an infected prostate. I had never heard of it, but it's fairly common, Hulse said.
Petersen said the parallel conditions could be coincidental, or then again, they could be linked. "There's an awful lot we don't know about the West Nile virus," which was first seen in the U.S. in 1999.
I was prescribed antibiotics and figured I would be back on track in a couple of days. Instead, I grew increasingly nauseated, my temperature spiked, the aches spread and my head started pounding.
After a miserable weekend, I added nervousness to my symptoms when Hulse ordered a full battery of blood tests. I was also passing blood, so he had me get a sonogram to check for kidney or liver problems.
Uh-oh, this was getting serious.
In two days, the initial blood test results showed that, yes, I had a bad bacterial infection. I got yet another injection of antibiotics and another prescription.
Hello, yogurt and probiotics. How had I never heard about prostatitis?
Becoming a statistic
On Monday, Aug. 6, a California lab confirmed that I also had West Nile virus, making me one of 103 confirmed cases in Tarrant County at the time.
As of Friday, there were 235 confirmed cases, according to Tarrant County Public Health.
Strangely, I was initially relieved just to know what had me by the throat.
That shifted back to anxiety a few hours later when I heard that an elderly person with an underlying medical condition had been killed by the virus in North Texas.
I couldn't help but wonder whether a raging infection qualifies as "underlying" or whether 59 is the new elderly.
A few days later, I realized that I had become a West Nile statistic when Dr. Anita Kurian, chief epidemiologist of the county health department, called to interview me for a West Nile virus case questionnaire collected by the Texas Department of State Health Services.
Last week, Kurian said the one common symptom of the people surveyed is a fever. Beyond that, the symptoms were all over the map.
I became a check mark in the "mild" fever category. But West Nile didn't get the message.
My eyes became increasingly sensitive to light. I was so dizzy and unsteady that I shuffled through the house with one hand on the wall for support. I quit retrieving the newspaper because it required navigating 10 steps to the sidewalk.
Petersen said the unsteadiness could have been a result of dehydration "or because every muscle and joint in your body hurts or a subtle neurological involvement."
It didn't really matter if I snagged the paper; I couldn't read it anyway.
Petersen experienced the same thing. We couldn't muster the concentration required to read. I also thought I needed new glasses and didn't realize until I came out of the West Nile fog that I was experiencing double vision. Chalk that up to confusion, another symptom of the neuroinvasive form.
The 'West Nile diet'
Meanwhile, I was sleeping 12 to 14 hours every night and napping for hours and hours during the day. Insatiably thirsty, I guzzled gallons of liquids but could only stomach yogurt, fruit and a little soup. The West Nile diet is highly effective, if not recommended. I lost 9 pounds in a week and I'm down 15 for the month.
After the third week of the beat-down, I asked Hulse just how long this "fever" could last. (Actually, I called it something else.)
I was stunned anew when he told me I could be experiencing "extreme fatigue" for a couple of more months.
Petersen, the dedicated runner, said he avoided stairs for two months after he got infected.
"We didn't know about the fatigue syndrome when I had it," he said. "I was going to meetings at the National Institutes of Health and I was going to sleep in the middle of them. I was thinking, 'God, am I getting old or what?'
"I think this is the iceberg under the water that people don't realize there is a real impact to all these West Nile cases that are occurring," he said. "The fatigue syndrome is real and it is horrible.
"The bad news is that it could last for months. You can't say this is in my head. It's real and it's going to last and you are going to have to take it easy."
It will be interesting to see how it plays out, but for now, feeling half-good feels real good.
There is one thin silver lining to having West Nile virus.
Just like with the chickenpox, once you've had the bug, you've secured lifelong immunity, Petersen said.
"We can walk around with impunity now," he said.
Steve Campbell, 817-390-7981
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