Doctors skip blood tests, often misdiagnose West Nile virus

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When Patty Long's husband came down with intense flu-like symptoms in late July, she was concerned it might be something worse.

The family lives in Lake Shore -- west of Spanish Fork, on the banks of Utah Lake -- where mosquitoes are a big summertime problem. Having heard some of the media coverage about West Nile virus, she did some Internet research. Her husband, who declined to be interviewed for this story and didn't want his name published, suffered from many of the symptoms she read about: fatigue, a high fever and terrible headaches. So they went to their family doctor for a diagnosis.

"The doctor said, 'Well, it looks like he's got all the symptoms of West Nile virus,' " Long said.

Long said her husband was prescribed a pair of drugs to treat the symptoms and sent home to wait it out. But a week later, he was no better.

"I called the state Health Department because I needed to know how long he was going to be sick," she said. "I was just bawling. I thought he was going to die."

A department representative asked Long if any blood work had been done to confirm her husband's diagnosis. She answered no, and was surprised to find that what authorities consider to be a crucial step in the process had been skipped.

"They said doctors can't diagnose without a blood test," she said.

The couple went back to their doctor and asked that the tests be run. Ten days later, they learned that he never had West Nile.

"He was diagnosed with Epstein-Barr virus, which is pretty much the same thing, but you don't die from it," Patty said.

Mr. Long has still not returned to work and continues to suffer the symptoms of the untreatable virus while his body fights it. But at least they're armed with the right information about what he's going through, his wife said.

When contacted, the doctor declined to talk to the Daily Herald for this article. Long said she doesn't hold any ill will toward him -- but she is afraid to bring the Health Department's comments up with him, because he's responsible for signing papers to allow her husband to work again.

"I don't blame him because all the doctors are doing it," she said. "I'd like to know how many people have been told they have West Nile."

The state Health Department said they don't keep numbers on misdiagnoses or ones unsupported by blood tests, but it's a problem they've been aware of for years.

"That happens all the time," said Jodee Summers, a state epidemiologist. "This has been going on since West Nile came into Utah. Some doctors will base things on symptoms and not do tests."

The Utah County Health Department said the same thing, and suggested some doctors may forgo testing because their patients' insurance won't pay for it.

"Like any medical test, they can be expensive -- and if people don't have insurance, then sometimes the doctor will go ahead and try to help the patient," said spokesman Lance Madigan. "Whether they're helping or not may be something of a question."

Anecdotally, Long said once she started sharing her family's story, she learned of no less than 30 similar experiences among friends and co-workers. One of those was her niece, Stacey Wright, who said she was diagnosed two years ago by a doctor at Intermountain Springville InstaCare.

"He said, 'Well, it sounds like you've got West Nile. We're not even testing for it anymore; there are so many people that have it,' " she said. "It was really strange. It was just contradictory to what we had heard on the news and what seemed to be happening everywhere."

That summer, Utah County led the state with 66 cases of the virus confirmed with blood work, according to the state's Bureau of Epidemiology. But when Wright suffered for two months without relief, she grew skeptical about her case.

"I ended up going to the doctor in the springtime," she said. "They found out that I was really anemic. The question I have now is: Did I ever really have it? Am I immune to it? Am I going to get it again?"

The doctor who diagnosed Wright has since relocated to Arizona and could not be reached for comment. Intermountain Healthcare spokeswoman Janet Frank said it is Intermountain's policy today to never diagnose West Nile without a blood test -- and often a spinal tap, if the virus's cognitive symptoms start to show in a victim.

Wright said she's been cautious about wearing mosquito repellent since then, but both she and Long fear that others who were carelessly diagnosed might consider themselves immune -- and in doing so, become more vulnerable to the deadly virus.

"People who have been told they have it are out on the lake, not really worrying about it," Long said. "I can't imagine how many people have been told that."

Others, believing they have the virus, might write off critical symptoms of other conditions as a product of West Nile, Wright said.

"Maybe there's something seriously wrong that they don't know about, and they say, 'Nah, it's West Nile,' " she said.

Jodee Summers of the state Health Department said while the problem exists, solving it is not a priority because it's nebulous and hard to target until after the fact.

"We try to do education for physicians and stuff like that. That's the best we can do, is try to educate people of what tests to draw and those kinds of things," she said. "That's the only way to tell for sure if there's West Nile."

There haven't been any reported human cases of West Nile virus in Utah County this year.

Ace Stryker can be reached at 344-2556 or astryker@heraldextra.com.

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