For Tim Goliver and Luther Glenn, the worst illness of their lives started in the same way — probably after having a stomach bug.
Tim was 21 and a college student at the University of Michigan. He was majoring in English and biology and active in the Lutheran church. “I was a literature geek,” says Tim. “I was really looking forward to my senior year and wherever life would take me.”
Luther was in his 50s. He’d spent most of his career as a U.S. military policeman and was working in security in Washington, D.C. He’d recently separated from his wife and had just moved into a new house with his two daughters, who were in their 20s.
Both men recovered from their stomach bugs, but a few days later they started to feel sluggish.
“Here we are trying to unpack, prepare ourselves for new life together, and I’m flat-out dead tired,” says Luther. He fell asleep in the car one morning and never made it out of the garage. Then he fell in the bathroom.
For Tim, it started to feel like running a marathon just to lift a spoonful of soup. One morning, he tried to comb his hair and realized he couldn’t lift his arm above his shoulder. “At that moment I started to freak out,” he says.
Both men got so weak that their families had to wheel them into the emergency room in wheelchairs. They got the same diagnosis: Guillain-Barre syndrome, a neurological disorder that can leave people paralyzed for weeks.
People who come down with Guillain-Barre typically have had some sort of illness a few days or weeks before, like the flu, says Dr. Ken Gorson, a neurologist at Tufts School of Medicine and St. Elizabeth’s Medical Center in Boston. He’s on the medical advisory board of GBS/CIDP Foundation International, which is dedicated to Guillain-Barre syndrome.
In many cases the trigger is a bacterial infection like Campylobacter jejuni, which sometimes contaminates undercooked chicken. In super-rare cases, people have developed Guillain-Barre after getting certain vaccines. The patient gets well, and then, “within days or a week, has terrible numbness or tingling and weakness,” says Gorson.
The syndrome gets its name from two French military doctors, Georges Guillain and Jean Alexandre Barre. In 1916 they diagnosed two World War I soldiers with the illness. The soldiers had come to the military hospital weak and with a tingling sensation up their arms and legs. One tried to leave at 5 a.m. to rejoin his comrades, but fell down with his backpack on and couldn’t get back up.
Here’s what happens. The immune system launches an attack against the pathogen that’s making someone sick. It succeeds, and the person gets better, but the immune system doesn’t realize the battle is over and attacks stuff in the body. Unfortunately, that can include the myelin coating around nerves.
“The immune system is by mistake attacking the peripheral nerves,” says Gorson.
That is not good, because like the insulation around an electrical wire, if the nerve coating gets damaged, the messages traveling from the central nervous system to the rest of the body can get lost.
Tim and Luther were admitted to the hospital and were told to expect a quick decline. Their blood was filtered to remove the antibodies attacking their own bodies, and they received injections of antibodies from donated blood.
No matter what the cause, a diagnosis of Guillain-Barre syndrome, or GBS, usually means you’re about to go through something really traumatic. You can expect to lose almost everything that makes you you. That could mean not being able to walk, to talk — even to breathe.
But after weeks or months in the intensive care unit, you’ll gain it back. Probably.
Gorson says about 80 percent of people who come down with Guillain-Barre will recover almost fully. Very few die. And some people recover, but never fully regain their abilities. And no one knows, while in the midst of Guillain-Barre, how much they’ll get back.
“I was watching TV and I lost use of the right side of my face. All the muscles just sagged,” says Tim, recalling the first few days in the hospital.
Within five days of entering the hospital, the muscle that used to lift Tim’s lungs for each breath went lax, so nurses stuck a breathing tube down this throat, taping it to his mouth. Then he had to go on a ventilator, through a tube that went straight to his windpipe through a hole in his neck.
“You feel like your body is a bellows, and you feel like you’re being pumped and fanned again, again, again,” says Tim.
Because Tim’s nerves were under attack, every little touch was excruciating — even a soft towel felt like steel wool digging into his skin. And he’d lost control over his mouth and throat muscles, so he couldn’t talk anymore. He could blink and nod to some extent, but that was about it.
“I was just completely unable to move and I just would watch the same episode of Sports Center again and again on replay and feel like I was in a loop and things were totally out of control,” says Tim.
When friends and family came over, they’d communicate to him with a poster full of letters, slowly dragging their fingers across each letter until Tim nodded or blinked to indicate he wanted to use it to spell something out. It could take 10 minutes to spell out one word.
For weeks, he lay paralyzed and silent, fed through a tube in his side. When he did start breathing on his own again, Tim says, each breath was so nerve-racking it felt like he was about to fall off the edge of a cliff.
“But bit by bit, it got to the point where I was able to do that and it felt like I was in control,” he says. Tim spent two months in the intensive care unit and two months in rehab, and then went home in an electric wheelchair.
Luther lost mobility, too, and spent weeks in intensive care. But he was able to breathe and talk the whole time.
“I remember my sister saying, ‘GBS took everything else away but didn’t take his mouth away,’ ” says Luther, laughing.
During his years in the military, Luther had routinely aced the physical fitness tests. He trained about 2,000 recruits and sent them off on their military careers. There’s an old saying, “the more you sweat in peace, the less you bleed in war,” he says.
“The military gave me the idea that I could do just about anything, so when I was in the hospital, I looked at this illness as just another mission that I had to accomplish,” says Luther.
He loved being in shape because it was the one thing he knew he could control, but Guillain-Barre syndrome made him so weak that he couldn’t even blink. When he fell asleep, his eyes would just roll back in his head. The nurses had to put gel on his eyes so they wouldn’t dry out at night. After six weeks in the hospital, he saw himself in a mirror for the first time.
“And when I looked up, I was shocked. I was floored that that was me — this thin, gaunt guy. That was probably more shocking to me than anything,” he says.
He’d lost about 30 pounds. For his birthday, the nurses pureed a cake for him, because his face and throat muscles were too weak to chew and swallow solid food. “It was horrible, but I loved them for it,” he says.
For a while, things did not look good — he wasn’t making any progress toward moving again. But when a doctor told Luther that most people fully recover, that gave him hope. “It’s on. I got this, Doc,” he said. “GBS done messed with the wrong person.”
Every night he’d give himself a pep talk, repeating a line from a song. ” ‘Nobody told me the road would be easy, but I don’t believe He brought me this far to leave me.’ Just say that every night. Every night,” he says.
One day, Luther moved his hand ever so slightly. Then a muscle twitched in his leg. A few days later, he blinked. After months in the hospital, he was transferred to rehab, where he learned how to move around in a wheelchair.
Finally he was able to return to the house that had been full of boxes when he left about six months before. He had to live in the basement because he couldn’t get up the stairs. His progress at home was excruciatingly slow.
“Days start running into weeks, weeks start running into months,” he says.
Luther was not one of the lucky 80 percent. He’s in the 20 percent of GBS patients who don’t recover fully. For the most part, he’s independent. He lives in his own apartment at National Harbor near Washington, D.C. An aide stops by three times a week to help out with cleaning and cooking. He goes out to movies and dinner with his family in an electric wheelchair. He loves to read on a dock at the harbor. He’s even learning Spanish. But he still can’t take more than a few steps with a walker, and just moving his face enough to talk can feel like a muscular feat.
“One of the things I hate the most is that I lost my ability to smile. It’s difficult for me to do. It looks almost like a grimace,” he says.
It’s been six years since he first got sick.
“It doesn’t dishearten me, but I realize this just might be my plight, so I take a smile with me and let’s go. Make the best of it,” he says.
Tim, on the other hand, recovered almost fully. He quickly regained his ability to talk and work. He went back to school and got his degree. He even proposed to his wife at the top of a mountain.
“At the point where I started to walk up mountains again without pain, I felt that I had conquered the actual experience. I look at it now and I don’t see anything that it’s keeping me from doing,” says Tim.
He has leather braces to stabilize his ankles, some tingling in his feet, and a very small scar on his throat from the ventilator, a mark from when he hit rock bottom. That’s about it.
Why did Tim recover so much more function than Luther did? And why did the two of them get Guillain-Barre syndrome when so many other people who were exposed to the same bugs didn’t?
“Unknown,” says neurologist Gorson. “There’s clearly an interaction between the infectious agent, the immune response, and then something that’s special or unique about the patient’s peripheral nerve system,” he says. Sometimes it has to do with age, medical care, how much nerve damage happened, or even the kind of bacteria or virus that caused the illness in the first place.
Predicting how much a patient will recover is one of the things Gorson and other neurologists are trying to figure out. They’re collecting blood from over 1,000 people around the world, hoping to find out what triggers some people’s immune systems to react in such an extreme way. It might lead to better treatments, or maybe even something they can do to stop the progression of the disease before it gets so bad.
If the Zika virus does begin spreading through the U.S. as predicted, there may be more cases of Guillain-Barre syndrome. The condition will still remain rare, but even a slight increase in cases could be horrible — not just for the people who get it, but also due to the strain it puts on hospital intensive care units and insurers.
“I cost over a million dollars, and that is something I have never forgotten,” says Tim.
Tim and Luther did not get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it’s that no matter what the cause, the disease is one wild ride.