Sarah Brewer says hair-like creatures are crawling in and out of her skin, and she has the lesions to prove it. After months locked in an Arizona mental facility, Brewer pretended to be rid of the condition for long enough to be let out.
Brewer, 39, is one of thousands in the U.S., predominantly in Arizona, Southern California and Texas, who have linked up on a handful of Web sites for seemingly-sane folks who’ve been diagnosed with Delusions of Parasites (DOP). These working-class, otherwise normal victims say the creeping invaders are as real as the skin on their bones. Now, university researchers and a handful of scientists agree.
In a mysterious search that stretches from mental homes to the administrative offices of the Center for Disease Control, the line between the physically tortured and the mentally insane may be as thin as an unidentified parasite, or an imaginative group of intelligent psychos.
Collembola, a microscopic parasite that most entomologists say cannot live in humans. National Pediculosis Association researchers documented the parasite in 18 of 20 "delusional" patients. Deborah Altschuler has been president of the NPA and a lice advocate since she founded the organization more than 20 years ago. Altschuler thinks this parasite is to blame for most of the DOP symptoms across the country, including the Morgellons fibers. NPA has received thousands of complaints from Americans suffering DOP symptoms.
Valley resident Sheila O’Leary, 64, had no history of drug use or mental conditions when she first felt the bugs crawling under her skin. After a dermatologist diagnosed O’Leary as mentally delusional, she moved nine times in three years, changing her living environment in an attempt to outrun the crawling condition.
Today O’Leary is sitting in a plastic chair on a vinyl floor in a nearly-new manufactured home with plastic curtains and a mattress wrapped in contact-paper. She has used no cloth to decorate the interior of her home. There are no pictures of her old life. Anything that might have harbored the pesky parasite has been sold. The home she bought in Florida — sold. The furniture, clothes, life — sold. Her siblings and friends were gone after about the sixth time she’d moved.
Like scores of others in Arizona and thousands across the country, not a day goes by when O’Leary isn’t reminded of the itching. These bugs or fibers—real or imagined—have taken over every facet of her life.
Eight years ago, when O’Leary first felt the crawling, dermatologists and physicians diagnosed her as mentally delusional, suffering from the delusion of parasites. Supposedly psychologically ill, O’Leary, a well-spoken retired human resources director, had lived a normal life until the crawling sensation under her skin began.
Gazing intently over her reading glasses, O’Leary can cite the criteria for her supposed mental illness, and recite one of her many theories involving fly larvae in her skin.
Thanks to the Internet, O’Leary and thousands of others believing their skin has been invaded by parasites have linked up to share their stories. Psychiatrists say this virtual community can be devastating due to its ability to falsely confirm the delusions as real. The patients themselves, fully convinced of their sanity, hope their united voice is a step toward formal dialogue with the medical community.
In recent months, that dialogue has begun. Oklahoma State researchers have documented plant-like fibers in the skin of 25 patients from the Morgellons group, one of three Web communities.
Dr. Raphael Stricker, a physician working with Morgellons, says the condition reminds him of the early research into the AIDS epidemic, when most of the medical community denied that that the condition existed.
After a year of phone calls from numerous patients, the Center for Disease Control is looking into the mysterious condition, one that Arizona health officials still consider strictly a mental disorder.
The Geographic Connection
As national researchers inch into the documentation process, Valley patients like O’Leary are waiting without relief. One Scottsdale victim, who asked that her name not be used, still shows up to work every day, itching under her clothes. Online forums reveal others all across the nation, their co-workers having no idea they’re battling a mental or physical attack throughout the workday.
Frustrated after numerous trips to various doctors, most patients end up treating themselves. Many of the afflicted have lived normal lives and are professionally employed. They have lead lives inconsistent with that of a person possessing a crippling mental disorder.
Morgellons, recently profiled on CNN and the most vocal of the online groups, reports it has 4,500 patients suffering from the condition across the U.S. The National Unidentified Skin Parasite Association reports another 10,000, and the National Pediculosis Association reports thousands more.
The three groups often refuse to work together, but independently, each reports that most of their patients come from the Southwest, a strange environmental commonality for a mental condition.
Similarly, the competing organizations report identical physical evidence: black specks or fibers. Morgellons sufferers will report them on the floor in their shower, much the way O’Leary finds them in the sterile environment of her manufactured home.
David Engelthaler has seen the scars and shapes on Arizona DOP patients. He treated a mother who bathed herself and her children in gasoline in an attempt to kill the skin invaders.
As the state epidemiologist, Engelthaler often drives out to the homes of Arizona patients. He has examined more skin samples than he can count. As much as he’d like to believe these are terrorized victims, he simply can’t find parasites or mystery organisms in the skin samples. It is, he confidently affirms, strictly a mental condition.
“Time and again there are no parasites or organisms. It’s not some new type of organism or parasite that can’t be seen with modern technology,” Engelthaler says.
Patients and advocates say that’s exactly what it is—something that science as we know it is not aware of, or not looking for. Groups like Morgellons and the NPA say the medical community is too cemented into its status-quo diagnosis.
“These patients are environmentally ill, and there’s a knowledge gap that is preventing this from being explored,” O’Leary says. “Medicine is trapped in psychogenic disease theory and doesn’t want to think and rethink this. It wants to hold onto a century of bad diagnoses.”
The Oklahoma State University researchers who have documented the fiber samples in Morgellons patients have yet to garner respect from their medical colleagues. Stayed experts like Engelthaler and the majority of the medical community insist there are no discoveries to make here.
“We’ve been studying the human body for hundreds of years. There aren’t really a lot of surprises left,” says Dr. Lynn Kimsey, professor of entomology at the University of California, Davis.
In the last 15 years, Kimsey has examined thousands of skin and “fiber” samples from patients across the country. One patient constantly combed his hair with Wesson oil, hoping to kill the critters. Kimsey says there are no parasites or new organisms under their skin. But the professor does think something physiological or hormonal is triggering these symptoms, particularly in elderly women.
Is This Mental?
For Sarah Brewer, 39, the crawling under her skin has been with her every night for four years. Whatever it is, it’s under her scalp, in her eyes, behind her knees and on the back of her neck. Sometimes crawling. Sometimes itching. Sometimes biting. The scars are everywhere.
Like retiree Sheila O’Leary, Brewer had poured her entire life into her four-bedroom Queen Creek home. Working as a marketing rep for Costco, Brewer bought raw land. She built her horse stables and dug fence posts on the property herself.
After a mold infestation at her home, Brewer started feeling the tiny fibers crawling in and out of her skin. Her dermatologist simply recommended that she see a psychiatrist. Brewer soon spent time in an Arizona mental facility with various mentally- related diagnoses.
Now having lost touch with her adoptive parents, after they had given up on her condition, Brewer lives in an RV on her property. Her deserted home is a museum of dusty boxes and abandoned belongings. Brewer, who thinks mold launched the infection under her skin, is covered with scars and lesions from the condition. Psychologists say the scars are psychosomatically generated by her mind.
She now spends her days theorizing about the cause of her condition and says the only thing worse than living in the hell of this 24-hour skin terror is being told that it’s all in her head and being abandoned by family and friends.
“There are all sorts of variations — bugs, mites, feeling unclean, worms,” Dr. Annee Matthews, General Psychiatrist at Portland VA Medical Center, says of DOP.
“What makes DOP particularly distressing is that it’s conceivable. It’s on the spectrum of something that could be occurring,” says Matthews, a psychiatrist who has worked with numerous DOP patients.
“I think many patients do start with something in terms of bugs. Then that goes away, but for whatever reason the sensation or belief doesn’t go away,” Matthews says. “And of course there are still things science doesn’t know.
Whatever causes the condition — a mental crack or a mystery physical trigger—the end result is often fatal.
Nobody knows for sure how many of the afflicted have committed suicide; nobody, including the American Psychological Association, knows how many people have the symptoms.
“There’s no data on the number of people diagnosed in a given year,” Center for Disease Control Spokesman Dan Rutz says.
“We really have no idea what the prevalence or incidence of this might be. That’s why this (new CDC investigation) is so important. We really need to define what this is.” The very fact that the Center for Disease Control is forging a high-powered investigation indicates a significant number of Americans are being affected, and the federal government is unsatisfied with current medical answers.
“DOP is a diagnosis of exclusion. When they don’t have any other explanation that’s what they throw at it, and that’s not helping a lot,” Rutz said.
Arizona officials see at least 12 DOP patients each year, a small fraction of the actual sufferers. Psychiatrists familiar with the condition say most victims stop reporting the condition once they learn it labels them “mental.” Many of the patients don’t have a history of mental disorders and are working jobs, livelihoods they have to protect.
If the condition is a physically-generated condition, the existing medical community is not in a place to notice. Even a Phoenix medical doctor who reported having bugs under his skin was dismissed as delusional.
The very things an intelligent victim of an actual physical condition would do are the textbook “symptoms” of a delusional condition: bringing skin specimens or shuffling from doctor to doctor in search of a fitting diagnosis.
“I don’t think our modern medical system lends itself well to helping these folks,” Kimsey says. “Physicians have 15 minutes these days. You tell them you have skin parasites, and they will diagnose you as delusional. They don’t have time to find out if it’s a hormone. There could be underlying medical issues.
“In light of that, more research should be done on the physiological side of DOP, and physicians should be trained better,” Kimsey says.
Sitting in her spotless mobile home, Sheila O’Leary agrees. She likens her condition to being an early HIV patient. “Someday after I’m long gone they’ll have an allergy shot for this,” O’Leary says.
The only paper product in O’Leary’s home today is the stack of bills having just arrived in the mail. Because paper is organic, the bills will be out of the house as soon as she finishes writing the checks. O’Leary knows her living conditions make her look delusional. She also says she knows what she must do to survive.