Scientists link Zika firmly to paralysis, as patients in Tahiti know too well

TAHITI, French Polynesia — The jovial former pipe fitter still laughs with wheezing breaths, but no smile. His frozen facial muscles testify that he has not fully overcome the illness that changed his life.

His ailment, called Guillain-Barré syndrome, is known for triggering temporary paralysis. But after four months in intensive care, a year in a rehab facility, his wife’s abandonment, and his inability to return to the job that carried him into the middle class, Roland Tehahe’s experience hardly seems temporary. “It’s tough,” he told STAT.

Tehahe is one of 42 people in French Polynesia who contracted Guillain-Barré two years ago during a months-long outbreak of Zika, which is now spreading across the Americas. Although Zika had been seen as harmless when it struck this South Pacific island chain in 2013, a careful study of the outbreak, released Monday, provides powerful evidence that the mosquito-borne virus led to Guillain-Barré in Tehahe and others.

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In a paper published in the journal the Lancet, scientists here and in France found that the vast majority of the Guillain-Barré patients had evidence of a prior Zika infection, and they concluded that the risk of the syndrome jumped as much as 24-fold for people infected with Zika compared with those who weren’t infected.

The disease, known for triggering temporary paralysis, has been linked to Zika virus infections. Hyacinth Empinado/STAT

The researchers warned that the two dozen countries where Zika is now spreading need to ensure they have enough intensive care beds for Guillain-Barré patients. Increases of the disease have already been seen in six Latin American countries.

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Dr. Thomas Frieden, head of the US Centers for Disease Control and Prevention, said Friday that there is little remaining doubt about the connection between Zika and Guillain-Barré. “Most epidemiologists who’ve looked at this would say it’s almost certainly related.”

Guillain-Barré occurs in about 1 in 4,000 people following Zika, according to the Lancet paper. It confirmed what STAT learned in interviews with patients and researchers in Tahiti: The disease strikes rapidly, often causing long-term suffering and upending lives.

André Woo, 73, woke up one morning unable to move. He spent eight months in the hospital and at the Te Tiare rehabilitation center learning how to walk again after being diagnosed with Guillain-Barré. Gregory Boissy for STAT

French Polynesia wasn’t the first place to get Zika, but it was the first where Zika struck in force that had the capacity to conduct cutting-edge science.

Researchers, who had studied blood samples from local people before the outbreak, knew within a few weeks of when Zika arrived in October 2013, and they watched it wreak havoc in real time.

Van-Mai Cao-Lormeau, the lead author of the Lancet paper, and her colleagues at the Institut Louis Malardé in Tahiti estimate that more than half of French Polynesia’s 270,000 residents eventually caught the virus, which started on Tahiti, its most populous island, and then spread across its five archipelagos. The owner of Tahiti’s Intercontinental Hotel said that at the height of the outbreak, as many as half of his employees were ill.

Zika causes symptoms in only about 20 percent of its victims, so many people — including a few who later came down with Guillain-Barré — did not know that they had had Zika. Others complained about fevers, bright red eyes, and arms so itchy that they were tearing at their skin for days.

Guillain-Barré cases began climbing a few weeks after the Zika outbreak started, but it was difficult to establish a clear connection at the time, Cao-Lormeau said, because of the time lag between patients’ Zika symptoms and the paralysis of Guillain-Barré.

“They did not report having fever, some reported a mild febrile illness 10 days before, but hadn’t seen a doctor,” she told STAT. It was particularly difficult because Zika and dengue, another virus found in French Polynesia, are hard to distinguish in lab tests.

Van-Mai Cao-Lormeau and her colleagues at the Institut Louis Malardé in Tahiti estimate that more than half of French Polynesia’s 270,000 residents eventually caught Zika during the 2013-2014 outbreak. Karim Mahdjouba for STAT

“We really had to make a whole batch of testing to be able to first confirm that all these people had been infected by Zika and then try to confirm that the Zika infection was recent,” she said.

In the Lancet study, researchers examined whether a previous infection with dengue increased the risk for Guillain-Barré. But they found no significant difference in the rate of dengue infections among people who got Zika and Guillain-Barré, just Zika, or neither.

It remains unclear whether Zika triggers Guillain-Barré more often than other viruses, such as dengue, two Australian researchers wrote in a Lancet commentary published along with the study.

Tehahe, now 49, fell ill just a few weeks into the outbreak. He remembers feeling lousy the first week of November 2013, like his body was changing, he said through a translator. His legs hurt and tingled. He felt dizzy and then nauseous. He visited a doctor who said he could do little more than take a fever reducer and wait it out.

Tehahe couldn’t hold down any food, and he tried in vain to sleep. His feet and knees became so stiff he couldn’t walk. He went back to the doctor the next day and was transported to the island’s main hospital, the Centre Hospitalier de Polynésie Française, a day later. Doctors did a spinal tap and scan of his head, which turned up nothing.

“Five minutes after I got back into my room, I fell into a coma,” he said in an interview.

He remained in the hospital for more than two months, then in rehab for over a year. His wife left him while he was ill — “she didn’t want to see me like this” — though his 15-year-old daughter still comes to see him some weekends, he said.

Tehahe can work now and is considered recovered, but he is not as strong as before. He gave up his full-time post building pipelines for an Australian company, and works as a jobber.

“It’s better now to be my own boss,” he said, “because no one will want someone who cannot lift things.”

Larry Ly takes part in a physical therapy session at the Te Tiare rehabilitation center. Gregory Boissy for STAT

Tahitian rehabilitation center overwhelmed

Two months after Zika arrived in Tahiti, the island’s main rehabilitation facility realized it was facing a crisis.

In one weekend in mid-December 2013, workers rushed to convert the center’s cafeteria into a treatment space to accommodate the extra patients, said Stéphane Milon, the director of care at the Centre Te Tiare a few miles outside Tahiti’s capital city.

Milon said his residential treatment facility usually gets one Guillain-Barré patient every year or two, but received 26 between Dec. 13, 2013, and April 6, 2014. Fifteen of them stayed a few weeks or months. The other 11 remained for more than 80 days, several for more than a year.

Typically, Guillain-Barré causes long-term problems in 20 percent to 25 percent of its victims, according to the World Health Organization, which matches the rate seen in French Polynesia. About 5 percent of Guillain-Barré patients die, usually from respiratory or heart failure, but all of those here survived.

The Lancet paper reported that just over half the Guillain-Barré patients were able to walk normally three months after their treatment ended.

Milon said his patients were in the prime of their lives, mostly between 30 and 60 years old; many were athletes in great shape.

“This was not a caste of people, it was all the people,” he said.

After developing Guillain-Barré, Ly suffered from paralysis that still requires treatment. Gregory Boissy for STAT

‘I have to be brave, be positive’

The person with the worst case of Guillain-Barré in French Polynesia was undeniably Larry Ly.

Ly, 45, was in intensive care for eight months at the hospital in the capital city of Papeete (pronounced Papa-ay-tay), and then spent 486 days in Te Tiare. Released just a few months ago, he is back in the rehab facility again while recovering from surgery that restored flexibility to his right arm after more than two years of Frankenstein-like rigidity.

Lying on a workout table with weights strapped on his lower legs, the sweat poured off Ly’s face as he pushed through his training exercises one recent day.

“I have to be brave, be positive,” he said through a translator with occasional words of English. “The stronger you are the more you will recover. The more negative you are, the worse it will be.”

A big man with broad shoulders now stuck in a stiff shrug, Ly said he had always earned his living through his physical strength. Before he fell ill, he’d started his own maintenance company, becoming his own boss, he said. He also loved playing soccer.

He caught dengue in late 2013 and then Zika two weeks later. On Dec. 3, 2013, he drove his daughter to school around 8 a.m. and came home and lay down. Within two minutes, starting from his feet and moving up, he became totally paralyzed. “I was lucky it didn’t happen while I was driving,” he said.

He struggled to breathe in the ambulance, and was hooked up to a ventilator and had a tracheotomy at the hospital. Once at Te Tiare, he endured painful physical therapy for two hours a day, five times a week.

Asked what he thinks of mosquitoes, Ly could only shudder. “I am afraid of mosquitoes now,” he said.

Translator Valerie Sauziervale contributed reporting.