One Bite, Still Fighting
In July 2013, Amanda Young was a happy, healthy and energetic pre- school teacher. After school, she taught dance and could run for miles. If someone had told her life would change due to a mosquito bite, she wouldn't have believed it.
Later that month, Young started having severe headaches and fever. She spent countless hours in the hospital undergoing tests. It wasn't until Young visited a neurologist that she was diagnosed with West Nile virus. She had been infected with the disease for almost a month. Amanda had no idea of what was to come.
Three years later, Young is still battling the effects of this disease. West Nile virus can be devastating to the human body. This virus has attacked Amanda's autonomic nervous system, which controls certain internal organs. After 6 months, she started having stomach problems,which was later diagnosed as gastroparesis (paralysis of the stomach). A year later, she developed heart problems.
Despite her struggles with West Nile, Young maintains her positive outlook and credits her care providers: "I am very lucky to have had a great medical support team." Young is currently enrolled in several research trials that may improve care for West Nile survivors. Currently, a study at Methodist Rehabilitation Center in Jackson, Mississippi is looking for additional West Nile patients According to Young, "It is the only way we as patients will get answers and help others in the future."
In addition to research trials, Young has become an advocate for West Nile survivors. Amanda currently serves on the board of Mosquitos Illness Alliance (www.mosquitoillnessalliance.org), a support group for West Nile survivors. This group, based in Hattiesburg and Jackson, Mississippi, seeks to educate the public and doctors, to make a difference in the lives of survivors.
The daily reminders of this disease have made Young's life much different. Years after the initial mosquito bite, she still struggles with severe headaches and fatigue. She longs for her "bubbly" personality and the energy to live each day fully. Her desire is to one day have the ability to put on tennis shoes, hit the pavement, and run 3 miles. Amanda is hopeful for a full recovery. Her faith gives her strength and inspires her to help others who suffer form the effects of West Nile.
Ten years later, Charlie Gibbs of Clinton still thinks: What are the odds? One of 200,000 mosquitoes bites me,” he says. And within days, he can’t move his arms or legs. Doctors aren’t sure what to make of Gibbs’ mysterious symptoms. They check for heart attack, stroke and even the relatively rare Guillain-Barré Syndrome.
Doctors aren’t sure what to make of Gibbs’ mysterious symptoms. They check for heart attack, stroke and even the relatively rare Guillain-Barré Syndrome.
Then a blood test reveals the true villain—a tiny mosquito bearing a terrifying virus. “I was the first person infected with West Nile virus (WNV) in Mississippi,” Gibbs says. “Aren’t I lucky?”
Today, Gibbs has plenty of company in the WNV survivors club, particularly after a record-breaking resurgence of the virus this summer. But in July, 2002, the African import was new to the American South, having invaded the United States via New York in 1999. When Gibbs arrived at Methodist Rehabilitation Center for therapy, he had yet to learn why he was paralyzed.
But researchers there took note of the 56-year-old’s shrunken limbs and thought: This guy looks like he has polio. The hunch led to a stunning discovery for Dr. Art Leis and Dr. Dobrivoje Stokic, scientists for the hospital’s Center for Neuroscience and Neurological Recovery (CNNR). After doing an exhaustive series of tests on Gibbs and two other paralyzed West Nile patients, the researchers became the first in the world to report that WNV can target the motor neurons of the spinal cord, causing muscle weakness, fatigue and a polio-like paralysis. And their discovery became breaking news in the New England Journal of Medicine, on the Web site of the Centers for Disease Control (CDC) and in some 700 media outlets across the country.
In September 2012, I contracted West Nile Virus. For several days my temperature was 103 degrees, and when I saw my doctor he immediately sent me to the hospital where I was put on an IV. During the first few days I was barely aware of what was going on around me. I spent 7 days in the hospital before I was able to return home. And at first, I was very weak and only able to walk short distances.
Even now, I continue to have frequent headaches. I still struggle with balance issues, memory problems, slight tremors, and fatigue. I’ve learned to pace myself because my days are often more difficult. However, with the support of family and friends, every day I try to maintain a positive attitude.
It has been a record-breaking year for West Nile virus infections, but Crystal Walley doesn’t need newspaper headlines to warn her of the ravages of the mosquito-borne disease.
Reminders are all around her Wayne County home. There’s the power wheelchair parked in her dining room. The physical therapy appointments on her calendar. Even the fuschia-colored Jeep in the driveway.
Her husband, Raleigh, bought the sassy vehicle in March, a time when Crystal desperately needed a pick-me-up. It had been eight months since a July, 2011 mosquito bite brought her to the brink of death, and the mother of two feared she might never fully recover.
“I had meningitis, encephalitis and poliomyelitis,” she said. “Dr. Art Leis said it was the worst case of West Nile virus he had ever seen—that lived,” Raleigh added.
It was a sobering observation considering Leis’ credentials. The Methodist Rehabilitation Center neurologist has spent 10 years studying the deadly disease. And if not for his intervention, Cheryl Bond believes her daughter might not have survived.
“Who would think in Jackson, Mississippi you would have a world-renowned researcher who actually had a heart to care for patients,” said Bond, assistant dean of the Lucedale Center of Mississippi Gulf Coast Community College. “From the first day we got to Methodist Rehab, the staff started us on a path toward life instead of a nursing home or death.”
Crystal was on a downward spiral in a Hattiesburg hospital when her mom read a newspaper article describing Leis’ groundbreaking research. Bond called his office the next morning, and she remembers being in tears as she explained her daughter’s plight to Leis’ receptionist.
“She put Dr. Leis on the phone, and I probably spent 25 minutes going through Crystal’s story,” Bond said. “Then he said: ‘Give me the name of her doctor. She has got to be started on steroids.’”
Dr. Leis said he favors high-dose steroids for patients who begin suffering delayed neurological problems more than two weeks after the onset of WNV illness. “Early on, the immune system is your friend and helps eradicate the virus,” he explained. “But later on, the immune system can be your enemy.”
When Crystal’s immune system began attacking her healthy body tissue, the results were devastating. “She lost 40 pounds, her organs were shutting down and she was dying in front of my eyes,” Bond said. “Dr. Leis was the lifeline that gave me hope and gave Crystal her life back.”
Crystal arrived at rehab only able to wiggle her left fingers and turn her head. And it was a similar paralysis in Mississippi’s first three WNV patients that put Dr. Leis and Dr. Dobrivoje Stokic on the path to a stunning discovery.
The two Madison physicians are scientists for Methodist Rehab’s Center for Neuroscience and Neurological Recovery, And in 2002, they were the first in the world to report that WNV can target the motor neurons of the spinal cord, causing a polio-like paralysis. In the decade since, they’ve continued to explore the virus’ impact—particularly the prolonged fatigue and muscle weakness that plagues many survivors. Their latest research indicates even milder cases of the disease can damage the nervous system, which may explain WNV’s lingering effects.
“Anyone who has dealt with these patients understood even back in 2002 that there was no way that WNV fever was just another summer flu,” Dr. Leis said. “These patients have prolonged, disabling fatigue, sleep problems, recurrent headaches and difficulty concentrating and focusing attention, and this goes on for months after this so-called benign illness.”
Crystal’s severe case meant she suffered the worst of it, and her mom says she was “a literal rag doll” during her first days of therapy. “I was still so sick, if it had been up to me, I would never have gotten up,” said Crystal, 34, a former cardiac ultrasound technician at Wayne County General Hospital. But she said Methodist Rehab’s physicians, therapists, nurses and rehab techs kept her motivated.
“I remember all the love and support,” she said. “They treated us like family members. I cried many a day, and I remember one rehab tech would rub my hand and the other would sing.”
As for the therapy sessions, “they were tiring and they were wonderful,” Crystal said. She took her first steps on the hospital’s weight-supporting treadmill, a system that allows patients to practice walking even before they can bear their own body weight. And with the help of occupational therapy, she gained the ability to feed and partially bathe herself.
“If it wasn't for Methodist Rehab and my strong family and supportive friends, I would have given up on living,” she said. “They pushed and fought for me when I didn't have the strength or fight left in me.”
Crystal went home in a wheelchair, but by May she was walking on her own. She still battles foot drop on her left side and her right arm is weak, but she has a favorite exercise to address both problems. She practices working the clutch and gears on her beloved Jeep with the LUVSPNK tag. “Raleigh joked that it would be good therapy to try to drive it,” she said.
Today, her biggest foe is a crushing fatigue that makes everyday tasks seem insurmountable. “I can clean my house, but every 30 minutes I have to sit down,” she said.
She keeps pushing, though, determined to reclaim all the activities she once took for granted—like playing with her pets and spending time with daughters Maley, 13, and Ella Kate, 7. “Last year, I didn’t get to go to any of their games or take them to their first day of school,” she said. “You don’t appreciate all the little things until they are taken away.”
“It has been a crazy year and it’s still surreal that this happened to me,” she adds. “People think I’m lying. They’ll say: A mosquito did that to you?”