I fell down the internet rabbit hole last summer researching my new home, Guam, and came across the disease that mysteriously appeared and then disappeared on the tiny island. The potential culprits behind lytico-bodig included bats, prehistoric palm trees and cursed fruit.
Who wouldn’t be intrigued?
The latest issue of Penn Medicine features a story I wrote on the rare neurological disease, which afflicted mainly those native to Guam and mirrors traits of Alzheimer’s disease, Parkinson’s disease and Lou Gehrig’s disease, or amyotrophic laterals sclerosis (ALS). Many believed lytico-bodig was a skeleton key or the “Rosetta stone” to answer questions about all the neurological diseases, so for over 50 years, researchers, including ones here at Penn, flocked to the island to try and crack the case. But it never happened.
When I found out I was moving to Guam in June 2016, I jumped online to learn more about the island. Much of it I already knew: It’s a U.S. territory. It’s in the Pacific Ocean. It has a big military presence. But there was plenty I didn’t: It’s only 32 miles long. The locals are known as Chamorros. And after World War II, locals were being diagnosed with and dying of lytico-bodig at astonishing rates; the incidence rate was nearly 100 times that of the global average for ALS.
What most attracted me to this story was the "whodunit" aspect. So many different theories had materialized over the years, each with their own players and research backing it up. It was like an onion at this point – shedding one layer revealed only another interesting piece of the story.
After I discovered Penn Medicine’s John Trojanowski, MD, PhD, Virginia Lee, PhD, and Gerard Schellenberg, PhD, were among the researchers who investigated the disease, I knew I wanted to keep peeling.
Stories had been written about lytico-bodig, but from my perspective, there was a dearth of coverage on their work. Many stories focused more on the popular theories: the fruit bat, seeds of the cycad tree, the soil and algae. The genetics and molecular mechanisms behind the disease – Trojanowksi, Lee, and Schellenberg’s expertise – were part of the narrative, but I wanted to take a closer look at their contribution for the magazine. Leaving Penn Medicine to relocate half way around the world didn’t mean I had to stop writing about it.
The group’s role was significant, interviews and studies revealed, and their commentary proved to be invaluable to the broader story that needed to be told. It also brought up an important point. No, the mystery wasn’t solved, but in working to understand the root cause, Guam contributed to new ideas for therapies to treat Alzheimer’s, as Trojanowksi discusses in the Penn Medicine magazine piece. This wasn’t a waste of time by any stretch.
Trojanowski’s work on the disease for 10 years under a National Institutes of Health grant took him to the island in the 1990s and early 2000s. But his first time on Guam was actually decades before that. He was just four years old.
Seeing some of the things he described to me when he first got to Guam as a young child underscored their importance in the narrative – and they were just cool. I stood under a quonset hut propped up behind a World War II museum, likely similar to the one he hid under during a typhoon, and watched flying fish jump out of the water while I motored across the ocean on a boat just off the reef. They jump high. Really high. And they look like little sea dragons, with deep blue bodies, translucent wings and a longish tail. I now see why that stuck in his brain – it will be stuck in mine too.
One can’t write a story about lytico-bodig without talking to John Steele. On the plane ride from Philadelphia to Guam (24 plus hours), I read the late Oliver Sack’s book “The Island of the Colorblind.” I knew a chapter in the island-hopping travelogue covered the disease, so I figured it to be a good place to start.
This is where I learned more about Steele, a Canadian neurologist who moved to Guam in the early 1980s to study the disease. He served as Sack’s tour guide, taking Sacks, a neurologist himself, around the island, meeting patients and their families and filling him in with stories about the research and history of the disease along the way.
Steele had spent a lot of his career working on lytico-bodig, and even lived in Umatac, the village that bore the brunt of the epidemic. Needless to say, he knew his stuff. Not too long after I touched down on the island, I reached out to him. The internet told me he was my neighbor. Perfect, I thought, I’ll get the Oliver Sacks tour, as well.
“I left Guam last year,” he told me over the phone from his son’s house in Los Angeles. “But I miss the islands, miss the whole Pacific lifestyle, which was such a delight, a pleasure and a romance for me for so many years.”
Steele is sharp and still eager. The disease was – is – his passion, and he still beats himself up for not being able to solve it while here. “In a way, it ended badly because I really had had an optimism that we would solve this mystery,” he said. “But we haven’t.”
Steele provided me with great insight and nuggets no Google search could ever return, and introduced me to Lucy Cruz, a Chamorro woman quoted in the story whose mother – and many, many others in her family – died of lytico-bodig. She pointed their graves out to me as we walked through the Umatac Cemetery together, passing along bits of their suffering and personalities. Her four dogs followed us down to the ocean-side cemetery and played on the grounds while we talked.
A soft-spoken, smart woman, Cruz is a nurse at the island’s cancer center who became close with Steele, and almost like a research partner. Her family members were studied by investigators, and she and her sister to this day keep a roster of all the patients she came across with the disease. It’s been awhile since they’ve added anyone to that list, she said. Carlos A. Ramel, MD, a neurologist on the island, said he hasn’t diagnosed a case in almost eight years. It has practically disappeared.
Being here on Guam meant I got to go out and see elements of the story for myself. I spent time at Cruz’s house, Ramel’s neuro clinic, the University of Guam, the Air Force base, where I spotted the rare cycad tree, the cemetery in Umatac several times, and the Guam Zoo. I couldn’t resist taking a peek at a few remaining fruit bats, also known as flying foxes, which had been linked to the disease for years.
The bats eat poisonous cycad seeds. The people ate the bat heads (yes, they used them for soup) and thus were thought to be poisoned with a neurotoxin. Today, less than 30 bats remain on the island, experts estimate. I stared at the 10 who spend their days hanging in a cage in the touristy Tumon Bay, some rescued after being shot out of the trees by poachers.
“Me and my family ate the seeds,” the zookeeper said. “And we’re fine.”
A Stroll driver (Guam’s version of Uber and Lyft) told me one night that his family stayed away from the tree altogether once a connection was suggested. For months, I asked people around the island the same questions, and got mixed responses about the seeds, the bats, the water and pretty much everything. The disease is gone and that’s the most important thing, researchers and locals agree.
Like Steele said, “It does seem, though, it may be a mystery that is never understood.”