Deadly EEE: Parts of nation see worst outbreak of brain-swelling, mosquito virus in more than a half-century

Patricia Alice "Pat" Shaw, of East Lyme, Connecticut, loved the outdoors. She walked her dogs three times a day. She often sat by the backyard swimming pool at her home, surrounded by woods. 

The walks, the pool, the woods – any of those pleasures may have led to the mosquito bite that killed her weeks later on Sept. 19.

Before Pat came down with a high fever and extreme fatigue, the 77-year-old and her husband, Gerald Shaw, a retired obstetrician, knew the heightened danger mosquitoes pose in parts of New England – how some carry a deadly virus called Eastern equine encephalitis, commonly called "Triple E."

They took precautions.

"We had citronella candles burning to ward off the mosquitoes, but that apparently didn't happen this time," Gerald said. 

His wife of nearly 55 years – a breast cancer survivor, mother of three and grandmother of two – was one of nine people in the U.S. to die this year of the rare and dire EEE virus, a mosquito-borne illness that causes swelling of the brain and has an alarming death rate of 30% to 50%. 

Three have died in Massachusetts; three in Michigan, two, including Shaw, in Connecticut; and one in Rhode Island. Most of the deaths occurred in recent weeks. 

For Shaw, EEE started as low-grade fever and muscle aches, but evolved into severe lethargy, confusion and seizure-like symptoms, forcing her to use a breathing tube. 

"She was a remarkable individual," Gerald said of his wife. The couple started dating when they were both 14 years old. Pat, who taught psychiatric nursing before she had children, loved nature and knowledge.

"She said she had a yearning for learning, and she meant it. Her goal was to read a book every week – and she pretty much did – and to learn something new every day."

80% left with neurological damage

This year, Massachusetts is experiencing its largest EEE outbreak since 1956. The virus is typically spread through bites from infected mosquitoes, which are more likely to be carriers near wetlands or sitting water. While people of any age can die from EEE, the victims this year have primarily been the young or old. 

There is no cure for EEE. A vaccine developed by the military exists for the virus, but it is not commercially available because the side effects are considered too severe. Although EEE can be treated, about 80% of survivors are left with some level of permanent neurological damage.

More:State health officials urge cancellation of outdoor events, 3 Michiganders die from rare virus

The virus pops up cyclically, with outbreaks occurring about every 10 to 20 years. In Massachusetts, EEE has been detected in 12 people this year. The last outbreak in Massachusetts, 2010 to 2012, killed four people. Connecticut's last EEE death before this year came in 2013. Michigan's EEE outbreak is the state's worst in more than a decade. 

"It looks like 2019 is clearly the beginning of our next outbreak," said Catherine Brown, state epidemiologist and public health veterinarian for the Massachusetts Department of Public Health.

"When we have an outbreak, it doesn't always mean that other New England states have a problem at the same time. But this year, we're seeing some pretty significant activity in Rhode Island and Connecticut, and Michigan, New Jersey and North Carolina." 

The multistate threat has communities on edge. Because mosquitoes infected with EEE are more common at night, some high schools in Connecticut and Massachusetts have moved up start times of football games. Others have moved games from Friday night to Saturday afternoon. Some families have undertaken self-imposed curfews. 

More:Eastern equine encephalitis: Mom shares how she survived the rare mosquito-borne virus

Aerial sprays from airplanes to combat mosquitoes have taken place a record six times this year in Massachusetts.

Health experts urge people in the most affected areas to wear bug repellent and pants and long-sleeve shirts, and avoid standing water.

The risk of EEE diminishes with cooler temperatures. Some experts say the season's first frost is needed to stop the spread of EEE in 2019. Forecasts, however, point to a warmer than average fall season in New England and elsewhere.

States post daily maps online to highlight the EEE hot spots – southeastern Connecticut, for example, and several counties in Massachusetts, particularly south of Boston. Still, the virus is rare in mosquitoes even in those communities where EEE is most prevalent.  

"Most mosquitoes that are out there are not carrying 'Triple E.' And it remains a very rare disease," Brown said. "But the fact is if you get 'Triple E' it's a devastating disease."

Girls, 5 and 6 years old, among survivors

Those recovering from EEE include 6-year-old Star Jackman from Conventry, Rhode Island. Her condition has started to improve, her father recently said, after she was admitted with severe headaches and vomiting. A GoFundMe page has raised more than $11,000 for Star's recovery.

Sophia Garabedian, a 5-year-old from Sudbury, Massachusetts, also has started to recover, friends reported, after she arrived at a hospital on Sept. 3 with flu- and seizure-like symptoms. She was recently moved to a rehabilitation hospital, according to an online GoFundMe page, which has raised more than $188,000 to help her recovery. 

Doctors expect Sophia to return home within a couple of weeks, according to an update on the fundraising page, led by family friend Debbie Moynihan. She will require outpatient therapy five days a week.

"The Garabedian family would like to thank the entire community for all their thoughts and support during this difficult time," the page says.

Moynihan said the Garabedian family is declining interviews at this time. The Jackman family has asked not to be contacted by media.  

From headaches and fever to confusion and seizures

For Pat Shaw, the symptoms started after she spotted a tick bite on her lower leg. She started developing headaches, fever and vomiting about eight or nine days later, her husband said. They were classic symptoms of Lyme Disease, common in their town. That's what they believed she had. 

"It's obvious that since she had received that initial tick bike on her leg, she had received a mosquito bite somewhere that we were not aware of," Gerald said.

The symptoms, especially the lethargy, intensified. 

"All of a sudden, she just got extreme weakness and her temperature went up to 102.7-degrees. She was very, very tired and had to lie down and went to bed early," Gerald said. "The next morning when she got up, she was showing some confusion."

He took her to a local emergency room. They thought it could be a stroke, but a CT scan showed no evidence of it. 

Pat's blood pressure starting spiking, and she began having what appeared to be seizures. She was transferred to Yale New Haven Hospital, where doctors initially thought she might have meningitis or encephalitis. An early test for EEE came back negative. 

But two weeks later, after her test results were sent to The Center for Disease Control and Prevention in Fort Collins, Colorado, a new report came back. She was infected with the disease. 

"That gave us the bad news that ...  there wasn't much hope for recovery," Gerald said. 

X-rays later revealed continued inflammation of her brain. At one point she started showing signs of breathing on her own again and her endotracheal tube was removed. But six hours and 20 minutes later, she died peacefully surrounded by family.  

'Perfect weather conditions' for a bigger outbreak

While deadly when carried by mosquitoes, the virus is native to songbirds common in the backyard, Brown said. Birds aren't affected by the virus, however; it is transferred from mosquitoes that feed off the birds. In Massachusetts, the EEE virus has also killed at least one goat and seven horses. 

The EEE virus is neuroinvasive, and  goes directly to the brain, Brown said, triggering symptoms of higher fever, headaches and chills followed by confusion, delirium, loss of consciousness and seizures. 

Those infected might not feel the effects for three to 10 days after acquiring the virus, she said. From there, the transition to more severe symptoms may begin rapidly or unfold over weeks. 

Brown said she believes the EEE virus is more widespread this year than prior outbreaks because of "perfect weather conditions," particularly the ongoing extended period of warm weather. The warmth speeds up both the reproduction process of mosquitoes and the life cycle of the virus.

"It's good for 'Triple E' and bad for us," Brown said. 

But it's not just the weather – it's also the birds. Brown said outbreaks are often the result of a new virus strain introduced to the region. She thinks the new strain came to the Northeast from birds migrating from Florida where the virus is prevalent.

Gerald Shaw said EEE has gone undetected by experts in his community of East Lyme, Connecticut. However, he's "almost 100% confident" that Pat did not go beyond the town in the few weeks before she got sick. 

"I think that a mosquito that didn't know it was supposed to be in East Lyme got here," he said, hours after her memorial service last week.

He offered advice to others.

"This is not fake news. This is probably the result of climate change, global warming, and birds migrating. It's out there. Pay attention to what's going on and if you suspect anything, go to the doctor." 

Reach Joey Garrison on Twitter @joeygarrison.