23 August, 2005  09:23 GMT
 The West Nile virus symptoms most likely to stick around -- in some cases, for many months -- are fatigue, weakness, joint problems, difficulty concentrating and poor memory.
At times over the past year, Beth Lehman feared she was losing her mind. She was easily confused, couldn't remember things and simply couldn't think straight. She had headaches that involved flashes of pain shooting up the back of her head and then down through her eyes and cheeks. And she tired so very easily.
It wasn't until a friend told her to do a Web search for "West Nile virus survivor" and Lehman saw a New York study on long-term effects of the disease that she realized might be happening to her.
"I just cried. I was so relieved," the Albuquerque woman said of finding an explanation for her frightening symptoms. Since then, she said, she found an infectious disease specialist and a neurologist who helped explain what was happening to her.
Long Time to Recover
Lehman, 63, said she was hospitalized with the severe form of West Nile virus -- meningoencephalitis, an invasion of her brain and surrounding membranes -- in September. When she was released from the hospital, though, she thought it was over.
"I thought: 'It's a virus. I've had colds, measles, stomach flu. You might be sick for 10 days, and then you're fine,'" Lehman said.
That's not always the case with West Nile virus, as researchers continue to discover.
Spread through mosquito bites, West Nile virus wasn't identified in this country until 1999 in New York, and it has spread westward ever since. Most people infected with the virus never even get sick, while others can develop a fever or even neurological complications.
In an ongoing study at the University of New Mexico, researchers have interviewed 135 patients who were reported with the disease in the state. They followed up with tests and physical exams of those who reported lingering problems.
One thing researchers are finding is that even people with West Nile fever, which doesn't include the severe symptoms of the form that invades the neurological system, can have lingering effects.
"Even until last year, we were teaching that it was mild, self-limited, would go away in three to five days, and then you were fine," said Dr. Diane Goade, associate professor of infectious diseases. "It's really clear now that a lot of people take a long time to recover."
Fatigue, Memory Problems
Even some of the initial symptoms of the disease lasted longer than many people thought, she said. It's common for people to have a fever for two weeks and a rash for three to four weeks, based on interviews so far, she said. Some still hadn't recovered from a sensitivity to light at the time they were interviewed, she added.
Goade noted that the study wasn't quite finished and hasn't been submitted to a peer-reviewed journal. Preliminary findings, though, show that three months after the illness, about 25 percent of people are back to normal, and six months after the illness, more than half of them are.
The symptoms most likely to stick around are fatigue, weakness, joint problems, difficulty concentrating and poor memory, according to Dr. Steve Pergam, assistant professor of internal medicine.
Most studies nationally have looked either at people who had West Nile fever or those who had the neuroinvasive disease, but not both in the same study, as UNM is doing, he said.
"Our hypothesis is that the difference between the two groups will not be very impressive," Pergam said. "The neuroinvasive group had slightly longer symptoms, longer recovery, but it's not significantly different."
Nerves May Be Damaged
No one is sure yet why the symptoms remain. One theory is that nerves are damaged and take a while to heal.
Previous research also has shown that some patients continue producing a certain type of antibody that indicates the virus is present well after the initial infection, Goade said. That could mean their bodies have been unable to eliminate the virus, or that they have been re-exposed to it, she said.
So far, UNM researchers haven't been able to crunch the numbers to see if New Mexico patients retaining those particular antibodies are more likely to have long-lasting symptoms.
One thing is clear though: Patients are eager for answers. Of all the New Mexico patients researchers were able to reach, only five declined to participate in the study, Pergam said.
"A lot of patients were extremely frustrated," he said of their inability to understand what was happening to them.
"One of the nicest things is that we can go back to people and say, 'You're not crazy. There really is a prolonged syndrome,' '' Goade said.
Lehman, for one, is grateful for that realization.
She said she doesn't remember a mosquito bite that may have given her the virus. She speculates that she may have gotten one while she was in her yard, looking after her chickens or tending her plants.
Nor does she remember much about her hospitalization.
Re-evaluation Value
When she returned to her job as an administrator at a UNM academic department, Lehman struggled to make sense of a pile of work on her desk. It was as if her mind couldn't encompass too much at once. Piles of papers would make her anxious. She described her mind as getting "staticky" with too much to do, unable to focus and worn out by the end of the day.
"I felt as if I was discharged from the hospital into a Fellini film, and someone was watching to see how long it would take for me to crack," Lehman said.
Part of her frustration was that her doctors didn't know about the effects of West Nile virus. When she complained about symptoms afterward, one doctor suggested she take a decongestant for her fatigue and another said her problems were caused by depression, Lehman said.
Pergam and Goade said that they hope one result of their research might be that healthcare practitioners will have a better idea what to expect and how to help West Nile survivors.
Once someone who liked activity and change, Lehman said she now seeks to streamline and simplify her surroundings, and doesn't readily accept new things.
"I used to value intelligence and quickness of mind, and insight," she said. "I could say, then, that I'm worthless now -- or that other things are more important."
She compares her bout with West Nile virus as a rock slide, where the pile of rocks symbolizes what she's lost, but an exposed cliff side also could be a new source of beauty.
"I've lost something, but look what's exposed," she said. Lehman said she now can look around and see what she's been given.
(c) Albuquerque Journal
(c) 2005 Daily News Central. All rights reserved.
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