Was Lou Gehrig's ALS Caused by Drinking Water?
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Cox and Banack theorized that long-term, chronic exposure to BMAA — from eating food, drinking or swimming in water contaminated with cyanobacteria — could trigger these neurodegenerative diseases. He suspected that BMAA accumulated in the brain, creating a neurotoxic reservoir that eventually began to attack the nervous system. He also suspected a gene-environment interaction, since many people are likely exposed, but not everyone falls ill.
A 2005 New Yorker article detailed Cox’s hypothesis, and his critics complaints that his initial studies showing BMAA in human brains had been based on small sample sizes, and that there was no plausible scientific mechanism for how it could accumulate in brain tissues. BMAA is a nonprotein amino acid — in other words, it’s not one of the 20 amino acid building blocks that make up proteins in all living organisms. “My grail now is to raise this story to the level of scientific respectability,” the article quoted Cox. And he set out, guns blazing, to do just that.
After the Institute for EthnoMedicine was founded in 2004, Banack, who had studied bats, donned a lab coat while Cox built a loose consortium of scientists — neurologists, medical scientists, analytical chemists, bacteriologists, ecologists — who could help piece together the puzzle. Although their research will provide new insights into all neurodegenerative diseases, the institute focuses on ALS both because it’s more accurately diagnosed in living patients than is Alzheimer’s and because ALS has no known cause or cure.
Called Lou Gehrig’s disease after the baseball player who died from it in 1941, ALS is a brutal disease that strikes healthy people seemingly at random. Victims are slowly paralyzed, and within two to five years most have died, usually after reaching the point where they can no longer breathe or swallow. The only therapy approved by the U.S. Food and Drug Administration offers at best two to three extra months of life. Around 5,600 Americans are diagnosed with ALS every year, and 90 percent of cases remain unexplained.
“If we’re right, we can stop these diseases — and that’s huge,” Banack says. “We can get BMAA out of people’s bodies, and out of their diets. There’s a lot of potential for good.”
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During Cox’s seminar he described the famous medical mystery of Guam. The indigenous Chamorro people suffer from what they call lytico-bodig; its symptoms include ALS-like paralysis, Parkinson’s-like shaking, and occasionally Alzheimer’s-like dementia. At the height of the epidemic, in the 1950s, Chamorros were succumbing to lytico-bodig at an astonishing rate — 50 to 100 times the normal rate of ALS worldwide.
In 1967, researcher Arthur Bell suspected lytico-bodig might be traced to the island’s cycads, and he was the first to isolate BMAA from the plants. More than 30 years later, Cox discovered that it was cyanobacteria within the cycad roots that produced BMAA, rather than the cycads themselves. On Guam, Cox also learned that the Chamorros craved stewed Mariana flying fox, consuming them whole — brains, bones, skin, and all. Perhaps, he surmised, BMAA biomagnified (or increased in concentration) as it moved up the food chain — from cyanobacteria to cycad to bat to human — much as the fat-soluble insecticide DDT once had.
Cox set out to find more collaborators. Renowned neurologist Oliver Sacks added his name to the first scientific paper outlining the hypothesis, in 2002. But others took more convincing. Banack recalls that after Cox presented his ideas before the Royal Swedish Academy of Sciences in Stockholm in 2003 “the room was totally silent. We looked at each other. Finally Lars-Olof Ronnevi, at the Karolinska Medical Institute said, ‘Your account of flying foxes has been a source of great amusement at our cocktail parties. Now that I’ve heard your research, I think you are on to something.’”