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Beyond Lyme: New Tick-Borne Diseases On The Rise In U.S.

Tucker Lane and his mother, Lynn Cash, sit in the wooded backyard of his home in West Barnstable, Mass.
Kayana Szymczak for NPR
Tucker Lane and his mother, Lynn Cash, sit in the wooded backyard of his home in West Barnstable, Mass.

It all started in the shower. Tucker Lane looked down, and there they were.

"Two ticks, on my right hip, directly next to each other," he says.

At the time, Lane didn't think much about it. He grew up on Cape Cod. Ticks are everywhere there in the summer. "Just another tick bite. Not a big deal," he thought.

That was June. In September, everything changed.

"I was working outside, and I just had a pounding headache," says Lane, 24, who works as a plumber and at a pizza restaurant.

He tried taking ibuprofen. But that night the headache got worse. "I was sweating but was cold. And I had tremors," he says.

He started projectile vomiting. He developed a high fever and double vision.

After two trips to the doctors — and no improvement — Lane's mother, Lynn Cash, called an ambulance.

At first, doctors wouldn't treat him, Cash says. "They accused him of opiate abuse." They thought Lane was going through withdrawal.

But scans of his brain showed that it was swelling. And he was quickly losing consciousness. His doctors decided to rush him to Brigham and Women's Hospital in Boston.

"By the time they got him upstairs [into a room], within another 48 hours, he was in a coma," Cash says.

At that point, doctors were stumped. They thought he might have some kind of infection. "His MRI was very severe," says Jennifer Lyons, a neurologist at Brigham and Women's Hospital. "He had a lot of inflammation in the very deep parts of his brain." But she didn't know what was causing the infection.

Cash felt differently. She says she knew exactly where the problem was coming from: "I knew it was a tick thing."

Cash's family has been on Cape Cod for many generations; she has seen a lot of Lyme disease and even had it herself. But she had never seen anything like this. This was something new. Something even more frightening.

The more we look, the more we find

The world is in a new age of infectious diseases.

Over the past 60 years, the number of new diseases cropping up per decade has almost quadrupled. The number of disease outbreaks each year has more than tripled since 1980.

The U.S. is no exception.

The country is a hot spot for tick-borne diseases. In the past 50 years, scientists have detected at least a dozen new diseases transmitted by ticks.

Richard Ostfeld and Felicia Keesing, husband-and-wife researchers in upstate New York, are studying why Lyme disease and other tick-borne illnesses are getting worse.
/ Stephen Reiss for NPR
/
Stephen Reiss for NPR
Richard Ostfeld and Felicia Keesing, husband-and-wife researchers in upstate New York, are studying why Lyme disease and other tick-borne illnesses are getting worse.

"The more we look, in a sense, the more we find," says Felicia Keesing, an ecologist at Bard College in upstate New York. "Around here, there's anaplasmosis, babesiosis and a bacterium related to Lyme, which causes similar symptoms."

And that's just in the Northeast.

In the Midwest, you can find Heartland virus, a new Lyme-like disease and Bourbon virus — which is thought to be spread by ticks but hasn't been proven yet. In the South, there's Southern tick-associated rash illness. Out west, there's a new type of spotted fever. And across a big swath of the country, there's a disease called ehrlichiosis.

Most of these diseases are still rare. But one is especially worrying. "It's a scary one," Keesing says.

"Our local tick — this blacklegged tick — occasionally carries a deadly virus that's called Powassan virus," says RickOstfeld, a disease ecologist at the Cary Institute of Ecosystem Studies in Millbrook, N.Y.

Powassan is named after a town in Ontario, Canada, where the virus was discovered in 1958. Now it's here in the U.S. The country records about seven cases each year on the East Coast and in the Upper Midwest.

What makes Powassan so dangerous is that it attacks the brain, making it swell up. In about 10 percent of cases, Powassan is deadly. And if you do recover, you have about a 50 percent chance of permanent neurological damage.

He was gone, just gone

Although doctors didn't realize it at the time, it was Powassan flooding Lane's brain.

Just a few days after he came down with his terrible headache, he was on life support in the ICU. His mother was sure she had lost him.

"If you opened his eyelids, he was just gone," she says. "I have never been so devastated in my whole life."

"If you opened his eyelids, he was just gone," says Cash. "I have never been so devastated in my whole life."
/ Kayana Szymczak for NPR
/
Kayana Szymczak for NPR
"If you opened his eyelids, he was just gone," says Cash. "I have never been so devastated in my whole life."

Doctors told her there really wasn't anything else they could do for her son. But she never lost hope. "I did a lot of praying. I'll tell you that much," she says.

Then one morning, Cash went to visit Lane. He had been in a coma for a week. When she opened the door, she recalls, "he turned his head and looked at me."

Then he tried to speak. "The only thing that came out was a 'Ha,' " she says. "But he recognized me."

From then on, Lane started to get better, quickly. He started to breathe on his own, to recognize people. In a couple of weeks he was out of the hospital.

As he woke up, Lane says, he was never scared or worried, because he was always surrounded by his family.

"My family and I are really close," he says. "So when I woke up, they were all around me. My cousins were just joking with me and making me laugh and stuff like that. So it was all good."

And it was all good. Lane's recovery stunned doctors. "His recovery was truly remarkable," says Lyons, his doctor.

But not everyone is as lucky as Lane.

Back in 2013, Lyn Snow of Rockland, Maine, also was bitten by a tick. She was 73, a well-known watercolor artist. Less than a week later, she was in the ICU, just like Lane.

"She subsequently went downhill, so unbelievably quickly," says her daughter, Susan Whittington. "She became incoherent and delusional. She was talking to paintings."

Within a few weeks, she was on a ventilator and completely unresponsive. Weeks went by. Eventually, Whittington got a diagnosis: Powassan.

Jack Snow looks at a photo of his late wife, Lyn, on the wall of their home in Thomaston, Maine. Lyn Snow was bitten by a tick in late 2013 and died of Powassan, a tick-borne virus.
/ Brianna Soukup for NPR
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Brianna Soukup for NPR
Jack Snow looks at a photo of his late wife, Lyn, on the wall of their home in Thomaston, Maine. Lyn Snow was bitten by a tick in late 2013 and died of Powassan, a tick-borne virus.

"That's when we knew it was unrecoverable," Whittington says. " That's when we knew that we would have to let her go. And that's what we did."

"It was all horrific," she adds. "Just before my mom was bitten by the tick, she would walk 3 miles every day, ride horses with her grandchildren. She was an amazing grandma."

Fighting back

There are many ways to protect yourself from tick-borne diseases. Wear long sleeves, spray on DEET and check yourself every night in the mirror — just to name a few.

But protecting whole towns, or even just a neighborhood, has been difficult.

"So far there have been no success stories of treating people's individual properties in reducing cases of tick-borne diseases," says Keesing.

But she and Ostfeld, her collaborator and husband, are trying to change that. They think they've come up with a way that may finally cut down on the cases of Lyme, Powassan and other tick-borne illnesses in the Northeast.

Their secret weapon is an unlikely critter.

"I can already feel that it's a pretty fat mouse," Ostfeld says, as he pulls out a white-footed mouse from a trap that's been set up in a forest near his laboratory.

The traps are metal boxes, about the size of wine bottles, hidden underneath leaves. "Mice love to enter them," Ostfeld says. "They love to enter dark tunnels."

Ostfeld has been trapping and studying these little mice for more than 25 years. And he has found something critical to understanding tick-borne diseases: The mice are covered in ticks.

For some reason, ticks flock to mice. Other animals groom the bloodsuckers off and kill them. But mice don't. They let the critters attach and feed on their face and ears.

Ostfeld says he has seen mice with 50, 60, even 100 ticks on their face and ears. "When I first noticed this, it really grabbed my attention."

Most of these ticks are carrying Lyme disease, Ostfeld has found. Others are carrying anaplasmosis, babesiosis or Powassan. Some ticks harbor two, three or even four pathogens at once.

Theses observations gave him an idea: Use the mice to kill the ticks. Turn the mice into a little assassins, who run around the forest executing ticks.

This idea is surprisingly simple to carry out. Remember those boxes Ostfeld uses to trap mice? What if you put a tick-killing chemical inside the boxes?

A mouse walks into the box and is swiped with a little brush that applies a drop of the insecticide on its back.

"The chemical is the same that people put on their dogs and cats," Ostfeld says. "But it's an even tinier drop, much tinier. So a little bit goes a long way."

And it lasts a long time. For weeks after the mouse leaves the box, it kills ticks that land on it.

But will it work in the real world?

This spring Ostfeld and Keesing have launched an experiment with 1,200 families in upstate New York to find out. Some families will get these tick boxes in their yards. Some will get a fungus sprayed on their shrubbery, which is known to kill ticks. And some will get neither.

Over the next five years, Ostfeld and Keesing will check to see whether the boxes and fungus keep people from getting tick-borne diseases.

Keesing is hopeful.

"If anything is going to work to reduce the number of tick-borne disease cases in neighborhoods, this is going to be it," she says.

Because here's the thing about ticks: It's not enough for just one or two families in a neighborhood to protect their yards, Keesing says. The whole community has to come together, in a concerted effort, to fight the onslaught of tick-borne diseases.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

Michaeleen Doucleff, PhD, is a correspondent for NPR's Science Desk. For nearly a decade, she has been reporting for the radio and the web for NPR's global health outlet, Goats and Soda. Doucleff focuses on disease outbreaks, cross-cultural parenting, and women and children's health.
Jane Greenhalgh is a senior producer and editor on NPR's Science Desk.