In 2004, frustrated mother Mary Leitao coined the term “Morgellons Disease.” The name came from a 17th century source that described feverish, French children whose backs would break out in stiff hairs. When the hairs sprouted, their coughs and convulsions would disappear.
Leitao’s story started in 2003, when her 2-year-old son, Drew, developed a sore near his lip. He pointed to it and said “bugs.” When Leitao examined it, she found a fiber inside. Soon there were more sores and more fibers–strange threads of all colors. Seeking answers, she began taking the toddler to doctor after doctor. The last doctor she saw, a specialist in Infectious Disease at Johns Hopkins, concluded that what Drew suffered from was a mother with Munchausen’s by proxy. Needless to say, she was not happy.
In 2004, she created a website detailing her son’s symptoms. By 2008, over 11,000 people had registered on the site to tell their own stories. They, too, suffered from sores and odd fibers. But they added a litany of additional complaints as well: cognitive issues, fatigue, and muscle and joint pain were some common ones. Leitao also started a research foundation devoted to Morgellons. In 2006, it collected almost $30,000 to fund small research projects and promote awareness. Celebrities like Joni Mitchell revealed that they, too, suffered from Morgellons.
People with Morgellons were angry, and the website helped them organize. The typical doctor visit for someone with Morgellons went like this: They would book an appointment, usually with a dermatologist. When the day of the visit arrived, they would bring in a Ziploc bag filled with fibers they had collected from their sores. Often, they would also bring along information they had collected about Morgellons from the web. Presented with these patients, most doctors diagnosed some variant of delusional parasitosis (a disorder in which people believe that bugs are underneath their skin). Treatment for delusional parasitosis typically involves antipsychotics or other psychiatric meds. Not surprisingly, most patients were not happy with the response they were getting from doctors. Sufferers began to demand answers. They started calling the CDC, agitating for an investigation into Morgellons, and enlisted support from politicians like Hillary Clinton, Barack Obama, John McCain, Barbara Boxer, and Tom Harkin. Eventually the CDC bowed to pressure and agreed to research the disorder.
Now all of this may sound crazy. But some responses from bona fide scientists gave credibility to the idea that this disease wasn’t simply about delusions. Randy Wymore, at Oklahoma State university, got interested in Morgellons after reading about it online. People started sending him samples of fiber. He maintained that even though these shipments came from all over the U.S., the blue and red fibers they contained resembled one another. He passed 20 samples on to the forensics team in the Tulsa police department. The forensic lab reported that they were unable to match the chemical structure of the fibers to any of the hundreds in their database, and when they heated the fibers to the highest temperature possible in their lab (700 degrees Fahrenheit), nothing happened. Wymore and his forensic colleagues were baffled. What could these unearthly fibers be? Wymore also referred some Morgellon contacts to a doctor at Oklahoma State named Rhonda Casey. She professed that she found the fibers embedded under the patients’ unbroken skin. Moreover, she felt the people she saw seemed genuinely ill, presenting with a host of neurological symptoms.
None of that stuff got published. But Leitao teamed up with some colleagues who specialized in treating Lyme Disease and wrote a paper on Morgellons that appeared in the American Journal of Clinical Dermatology. They reported that 79 of 80 Moregellons patients were infected with the bacterium responsible for Lyme disease, and hypothesized that Morgellons could be related. (It should be noted that long term sequelae of Lyme Disease are controversial in their own right.)
So what did the CDC investigation find? In a 4 year collaboration with Kaiser Permanente that cost $600,000, they identified 115 cases. Their analysis was published in PLoS ONE in 2012. The patients were primarily white, middle-aged females. Half of the hair samples tested came back positive for drugs like amphetamines and cocaine. The women presented with a number of neurological complaints (chronic fatigue, cognitive deficits, etc.). But not parasites or mycobacteria were detected in biopsies of their lesions. And those fibers? They appeared to come from cotton.
If this is true, how can we explain the former findings, the ones from the Tulsa PD, for example? What about those strange fibers that were heated to 700 degrees Fahrenheit and remained unscathed? The ones that didn’t match any known fiber? It seems as though they may have resulted from a strange day in the lab. They sort of defy belief, and it makes you wonder about the forensics team there.
After the CDC study was released, the furor surrounding Morgellons seems to have died down. The website Mary Leitao founded has shut down, and the Morgellons Research Foundation has been shuttered. Apparently Wymore and Leitao fell out, and Wymore started his own foundation at Oklahoma State. His research continues, and people who suffer from Morgellons can still register on his website. The Lyme Disease group also continues to publish papers on Morgellons, linking it to infection with spirochetes.
It’s interesting to look at Morgellons as a powerful example of an internent meme, a disease that exploded after a website was created and then began to wane a few years later when the tide of evidence turned against it. After reading about its history, I just ended up feeling terrible for the people involved, though. You can check out pictures of the lesions. Even if they are self-inflicted or the result of bug bites, they don’t look pleasant. One woman reported day after day of agony as her body released red fibers, culminating in a pink worm coming out of her eye and coughing up a fly. Another reported waking up in the psych ward multiple times and becoming addicted to cocaine, driven to desperation by her disease. Moregellons patients try crazy and expensive cures–liquid silver, diatomaceous earth, deworming medication meant for farm animals, high dose antibiotics. These are sad stories. Since we began with Mary Leitao’s tale, you may be wondering how her family is doing. After a while, she reported that her older children began to exhibit signs of Morgellons. Her teenage daughter quit going to school as a result. Since the CDC study, it appears that she has more or less bowed out of the Morgellons community. I hope this family is doing better.