West Nile victims young and old fighting pain, fatigue
Kerry Fehr-Snyder
The Arizona Republic
Jul. 16, 2004 12:00 AM
One shuffles around with a walker and is too tired even to talk on the telephone. Another takes all morning to get ready for work and then manages only a few hours a day at the office. Still another seemingly has aged decades.
These victims of West Nile virus didn't die; they just felt like they wanted to.
As of Thursday, the number of people in Arizona sickened by the virus had ballooned to 114, up from 67 last week. The state still leads the nation for the virus. The majority of them live in Maricopa County.
The wide range of victims proves that the mosquito-borne virus doesn't discriminate: It infects the weak, the strong, the young, the old, the middle-aged.
"You will see it run the gamut," said Dr. Bob England, state epidemiologist at the Arizona Department of Health Services. "We often speak of diseases for which certain folks are at higher risk. That doesn't mean that it doesn't happen to other people."
The faces of the West Nile virus range from a 3-month-old boy to an 87-year-old woman. The median age of those infected: 52.
Although the majority of individuals who contract the virus barely notice they are sick, about 20 percent of them develop West Nile fever. They are the ones who end up in the hospital and, for the most part, are the ones counted in the growing number of state-confirmed cases. They complain of a wide range of symptoms, from fatigue to splitting headaches to permanent muscle damage and pain. Here are some examples:
John Wertz, 65, Phoenix, 19th Avenue and Bell Road.He lies in a hospital bed at John C. Lincoln Hospital-Deer Valley, listless, barely able to move his legs, haltingly answering questions about his illness.
"I'm basically just coping at this point," Wertz said.
"Tired, of course, weak," he added, speaking in short hand.
Then he deferred all questions to his wife of 42 years, Sharon, reasoning, "You'll get a faster answer from her."
A retired computer systems analyst, John became sick over the Fourth of July weekend, his wife explained. He likely was infected a few weeks earlier but doesn't remember being bitten by a mosquito.
Sharon recalled mosquitoes inside their home. She had been sick with a headache, stiff neck and extreme fatigue a few weeks earlier and now says she believes she, too, was infected with the virus. She recovered and plans to be tested today to know for sure.
John's illness began with a fever, headache, body ache, a rash. He was so weak that it took two people to walk him from the house to the car, taking a break halfway between, so that Sharon could get him to the emergency room. At the hospital, he was met with a gurney.
"He's a brilliant, brilliant man," she said. "To see him hunt to put words together is petrifying.
"People don't really know how debilitating this can be."
Doctors originally believed Wertz had contracted viral meningitis, which is highly contagious. They tested him for valley fever, tuberculosis and a non-venereal form of herpes.
Dr. Tim Kuberski, an infectious-disease doctor, suspected West Nile virus and began treating John with the same anti-viral medication, interferon alpha, that he uses for patients infected with Hepatitis C.
"The faster they recuperate, the better they do," Kuberski said, referring to lasting muscle and nerve damage that can come with the disease.
John, who has been hospitalized for a week, has begun using a walker but still faces two weeks of rehabilitation before he can return home.
Bob Heidrich, 38, Phoenix, Northern and Seventh avenues.Heidrich woke up one Friday four weeks ago covered with a rash from head to toe. It wasn't itchy, and he thought it was a heat rash. He went to work at his mortgage company.
By Monday, he never made it out of bed.
"I woke up with a fever, a really, really bad headache. A migraine. Stiffness of the neck, but the rash was gone."
The next day, he went to the doctor's office and was tested for West Nile virus. The results weren't immediately available, and the mystery illness had him feeling worse the following day. By Wednesday night, he agreed to let his wife, Pamela, take him to the emergency room of John C. Lincoln Hospital-North Mountain. He was dehydrated, so nurses began an IV drip with fluids. They also gave him antibiotics and several pain medications. He was kept in the intensive-care unit for more than two days and hospitalized for a total of seven days.
"My memory's kind of fuzzy," he said.
Bob underwent a battery of tests, including three spinal taps.
"The first two were really, really painful," he said. "I cried."
He left the hospital with an IV still in his arm. His discharge papers list meningitis and encephalitis. A nurse visited him at home for the next five days. The underlying cause: West Nile virus.
Symptoms linger and include neck stiffness, hand tremors, short-term memory loss, dizziness, difficulty writing, loss of appetite.
Bob, who is normally active and healthy, doesn't know how he contracted the virus. His yard is irrigated, but he doesn't recall any standing water where mosquitoes might breed.
Both Bob and Pamela said they were surprised by the illness.
"You hear West Nile, a mosquito bites you, you get sick, you get over it," Pamela said. "He seems to be getting better every day, but it's really slow. He goes to work for two hours, but it takes him all morning to take a shower. If he didn't have to go to work, he wouldn't."
Bob and Pamela now avoid the outdoors and wear insect repellant any time they are outside.
Pamela, a dental hygienist, is using Bob's experience to remind others of the dangers of West Nile virus.
"They think I'm crazy," she said. "But I say, 'Oh, my God, why do you want to go through this?' There are new cases every day, people are dying, you can't not go out, but you can protect yourself."
Paul Johnson, 45, Phoenix, Seventh Street and Bell Road.
The former Phoenix mayor, commonly referred to as the "boy mayor" for his youthful looks, thought he was getting the flu three weeks ago. His back ached, his stomach hurt, he had a splitting headache, he was nauseated, dizzy and unable to sleep.
Plus an odd rash covered his chest.
"To be honest, I thought since I had just turned 45 I was falling apart," he said. "I felt like there was a crowbar in my head splitting it open."
Johnson went to his doctor, who happens to his neighbor and a close friend. She immediately suspected West Nile virus and ordered a blood test.
"I was certainly surprised that he had it, but he had all the symptoms," Dr. Janice Johnston said.
Johnson, who develops real estate projects and manages commercial building, was able to work while fighting the virus, even though doctors said he developed brain-swelling encephalitis and meningitis, swelling around the brain. But even today, he says his back and head still ache.
"It's a funny virus," he said. "It kicks your butt; there's no doubt about it."
Although the experience persuaded Johnson's doctor to limit time spent outdoors, she isn't wearing insect repellant. Neither is Johnson.
"No offense, but who wears mosquito repellent," he said. "When people smell it, it's not mistaken for good cologne."
Medical experts aren't sure but believe that people infected with the virus develop antibodies that prevent them from becoming ill again.
Gary Bixby, 68, Anthem, north of Phoenix. An avid golfer, Bixby used to golf at the Arizona Traditions Golf Club twice a week. Today, he's too weak to hold the telephone handset. He refuses visitors. He's unable to walk without a walker. And now he's battling depression.
Doctors say he has permanent nerve damage in one leg and could suffer other lasting problems.
"He's feeling a little better, but he was really hit hard by this," said his wife, Ann.
Problems began in early June after the Bixbys moved from 109th Avenue and Beardsley Road in Peoria to Anthem, north of Phoenix. They moved on a Wednesday. By Friday, Gary was flat on his back.
His temperature spiked to 103 degrees. "It just hit so fast, it was scary," Ann said.
She took him to the doctor the following Monday. He was diagnosed with the flu and given a prescription for an antibiotic to prevent a secondary, bacterial infection. It didn't help. Two days later, Gary was spiking a fever again, and his wife took him to an urgent-care facility.
It ordered chest X-rays, suspecting pneumonia. The next day, Ann took him to the emergency room at John C. Lincoln-Deer Valley. He was admitted, again because doctors thought he had pneumonia. When Ann left that night, Gary was talking and joking with everyone. The next morning when she called his room, he didn't answer. After a second attempt, a doctor in the room answered and told Ann that her husband had taken a turn for the worse. "He didn't know who he was, where he was; he was so out of it, it was unbelievable," she said.
An infectious-disease doctor and neurologist were now on the case. Tests revealed Gary had meningitis. He was hospitalized for 10 days. It wasn't until he was released and home that the couple received a call from the hospital confirming Gary had contracted West Nile virus.
"We were very surprised," Ann said.
The couple are stumped about how Gary contracted the disease but suspect he was bitten while golfing by a mosquito carrying the virus.
"For someone who's as active and young as he is, it just blew our minds that he became ill so quickly," Ann said.
Gary never wore mosquito repellent while golfing, but "all of our golfer friends are now, believe you me," Ann said.
A retired insurance executive, Gary is struggling to regain his strength.
"He's lucky to move from one room to another," Ann said.
Henrietta Goldstein, 84, Phoenix, Moon Valley area.
"Honey, I hate to bother you, but it's 102 1/2."
Those were the last coherent words Goldstein said to her daughter, Carol Tracy, for three weeks. It was 5 a.m., and Goldstein was referring to her low-grade temperature, which she had been running for about a week.
Tracy rushed her mother to the emergency room at John C. Lincoln Hospital-North Mountain. She was admitted to the intensive-care unit for three days.
"She went from being 84, looking 64, acting 44 to seeming like she was 184," Tracy said.
Goldstein had a rash "that looked like leprosy," was dizzy and began hallucinating, her daughter said.
"She'd say, 'I hurt, I hurt, I'm so dizzy.' She'd swat at things in front of her because she was seeing bugs everywhere and spots."
Every time Goldstein saw another doctor, she'd ask, "Am I going to live?" Tracy said. "It could have gone either way."
Tracy repeatedly insisted that the medical staff test her mother for the West Nile virus. Finally, the hospital discharged her with a diagnosis of "fever of unknown origin."
Tracy took her mother to a doctor at CIGNA Healthcare who ordered a blood test. The results: West Nile virus.
"You have to be an advocate," Tracy said, adding that the ordeal was infuriating. "We cower in front of these medical gods, and we're paying the bills."
Goldstein is still weak, walks with a walker and takes pain medication.
"This is a woman who was in great health, feeling great all the time, taking nothing but vitamins," Tracy said. "If I had a worst enemy, I wouldn't wish this on them. I'm sorry," she added, getting teary.
Jim Van Dyke, 62, Phoenix, Encanto Park area. His niece was getting married in Iowa, and Van Dyke wasn't feeling well.
"Aches, pains, headache, a little off. By the time I hit Omaha, I was really starting to feel bad," he recalled.
His wife, Vicky, called her sister, who arranged for Jim to see a doctor in the small town of Sac City. Jim was running a fever of 101. The next day, it topped 103.
The couple headed to the emergency room of the local hospital, and Jim was admitted.
"They had no idea what I had," he said.
Jim, dean of applied programs at Rio Salado Community College, suggested doctors test him for West Nile virus, which had never been detected in Iowa. They agreed and sent his blood to a local university medical center because they didn't have the testing capability at the small Iowa hospital.
After three days of hospitalization, Jim was taken by ambulance to the medical center at the University of Nebraska. Four days into the illness, doctors still classified him with a "fever of unknown origin."
It wasn't until Jim returned to Phoenix in early June that he learned of his diagnosis: West Nile virus.
"My mild case turned into a moderate case very quickly," he said.
Jim fully recovered but uses insect repellant and insists anyone who visits do the same.
"It's a lot cheaper to buy DEET than to fight this thing," he said.
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