Morgellons: Real or a state of mind?

While its sufferers describe wild symptoms of the disease, many doctors doubt it exists.

By Melissa Healy, Times Staff Writer
November 13, 2006

Envision a nightmare of horror, conspiracy, medical mystery, human suffering and cyberspace, and you might get a phenomenon that has come to be called Morgellons disease.

In more than 5,000 households across the country and in a handful of doctor's offices, sufferers and the people who treat them subscribe to the idea that there is abroad in the land a new type of infection — a parasite, a worm, a virus — its source as yet unknown.

Theories as to its origin have included alien abductions, a French government conspiracy to poison bottled water, and exposure to a wide range of toxic pollutants.

To its victims, who call themselves "Morgies" and congregate almost exclusively in cyberspace, Morgellons is a disease that is dreadfully, painfully real. To doubters — among them, the vast majority of dermatologists to whom most patients turn first — Morgellons is almost certainly a painful, dreadful psychosis called delusional parasitosis, an age-old affliction that dermatologists have studied in medical texts and seen in their offices for as long as their specialty has existed. What is new, they say, is the name, the online community that has formed around it and the growing conviction among victims that it is a real, new disease.

Far-fetched though the disease may seem to the uninitiated, the federal Centers for Disease Control and Prevention is investigating potential causes. Sufferers hope to find the true reason for their misery; doctors hope to finally put this Morgellons business to rest. Public health officials hope they can rule out the possibility that some new infection or unseen environmental toxin has unleashed a disease so awful it is driving sufferers to despair.

Whether its origin is infection or delusion, the symptoms reported by those who believe they have Morgellons are horrific. Patients feel a sensation of bugs or worms crawling and biting under their skin, and often report seeing them emerge. They observe odd fibers or filaments on, or coming out of, their flesh. They suffer lesions, rashes and wounds that either do not or cannot heal — possibly because victims scratch and pick at itches, repeatedly opening their skin.

The Morgellons Research Foundation, a nonprofit organization that has become a clearinghouse for information and patient support on the purported disease, has submitted to the CDC a draft "case definition" of Morgellons that includes a cluster of other, seemingly unrelated, symptoms as well.

Those stricken with Morgellons, the document reports, generally suffer also from chronic fatigue, cognitive difficulties described by patients as "brain fog," and "behavioral effects" that mimic symptoms of depression, obsessive-compulsive disorder and attention-deficit disorder.

Most sufferers insist these behavioral effects are the result of coping with a distressing illness that is widely met with disbelief, not a sign of existing mental illness that might give rise to Morgellons symptoms.

They will try anything — from bodily applications of household bleach and pesticides to liver-blasting medications — to get rid of the symptoms.

First, a rash

For Donna Grace, a Sherman Oaks woman who asked that her last name not be used, the condition she calls Morgellons seems to have started with a flu shot in 2002, and a subsequent rash near the site of the injection.

Within months, the 46-year-old entertainer says, the itching and crawling sensations underneath her skin began, making her nights a living hell and her days a frantic search for relief.

She went off hormone replacement therapy "because I thought, this is making a fertile breeding ground for these guys," and tried a string of topical creams, unusual diets, powerful prescription medications and prayer.

She takes wormwood and clove — both dietary supplements thought to have antiparasitic properties and approved by Ginger Savely, a nurse practitioner in San Francisco, who is overseeing Donna Grace's treatment and that of roughly 200 other patients complaining of Morgellons symptoms.

Savely, who treats patients with an ever-shifting cocktail of antibiotics, antiparasitic medicines, antifungals, herbal supplements and even light therapy, says she often feels she has entered "the twilight zone," so strange are the symptoms she sees. She and San Francisco physician Raphael Stricker, with whom she practices, suspect that the condition could be a co-infection of the tick-borne Lyme disease — an infection that also met with medical skepticism before its source became clear in 1982. "Whatever is causing this [Morgellons] is extremely resistant or very adaptable," Savely says. "It's just such a mystery."

To the CDC, the federal agency that tracks the nation's health and investigates threats to it, the relentless reports of Morgellons disease can no longer be simply dismissed. Although agency officials do not use the name Morgellons, the CDC has launched what spokesman Dan Rutz calls "an epidemiologic investigation" into the cluster of symptoms referred to as Morgellons disease.

Since January, CDC sleuths — a team of experts in infectious disease, toxicology, mental health, statistics, pathology and ethics — have been drawing up a list of the core symptoms that would define a distinct new disease. And they have been plotting an epidemiological hunt for those who suffer from those complaints.

During the next several months, says Rutz, the CDC team, headquartered in Los Angeles, will likely examine patients, collect and analyze tissue samples and the strange fibers that Morgellons sufferers report, and look for the patterns — of environmental exposures, travel, diet, medications, medical history — in populations with confirmed symptoms.

"This is complicated," says Rutz, who noted that in past efforts to investigate Morgellons symptoms, "the chain of custody has been suspect" — a reference to the fact that patients typically bring in to doctors or send to the CDC alleged parasites and fibers taken from their skin that are encased in plastic bags and placed on slides made with household tape. If the CDC is to throw its medical authority behind a resolution to this mystery, "we have to do it right," Rutz says.

"Really, it's just to answer a public demand," Rutz says of the CDC inquiry. "We've been hearing enough from folks for a number of years. We haven't been able to give them an appropriate answer, and they haven't been able to get it elsewhere. So we thought it was time for us to shed some light on it."

The fact that a small number of influential lawmakers — U.S. Sen. Dianne Feinstein (D-Calif.) among them — have written asking the CDC what experts there know about the purported disease has helped fuel a new urgency to get to the bottom of Morgellons. "Certainly you don't ignore those," Rutz says.

Missing from Rutz's explanation, however, is how unusual that makes this probe. Unlike most such investigations, the CDC's inquiry is a response, overwhelmingly, to patients who believe they have the disease, not to a groundswell of confusion or professional concern from the medical community that sees these patients.

Public outcry has played a key role in prompting many past CDC investigations, but nearly all have had the added impetus of a call for help from the medical community.

In the case of Morgellons, that outcry has been muted, at best.

Diagnosis and treatment

"The vast majority" of physicians who see these patients, says Torrance dermatologist Mark Horowitz, are in little doubt of the correct diagnosis — delusional parasitosis — and its proper treatment — antipsychotic medications such as Orap or its generic form, pimozide.

It is not, Horowitz is quick to note, because antipsychotic medication has any power against parasites, but because these patients — whom Horowitz and his dermatologist father have seen in the hundreds over 30 years — "have a psychological disorder that's very limited in its spectrum."

In many cases, Horowitz says, they are functioning well in jobs and society, and bear no signs of mental illness. "They act normally," Horowitz says. "But something is wrong."

In this medical mystery, the role of the Internet as a meeting place — and possibly infectious breeding ground — for Morgellons has drawn particular interest from researchers.

The recent upsurge in symptoms can be traced directly to the Internet, following the naming of the disease by Mary Leitao, a Pennsylvania mother struggling to explain her young son's mysterious rash, which she first noticed in 2001. She plucked the term Morgellons from an obscure 17th century French medical text describing "strange hairs" sprouting from children's backs, accompanied by coughing and convulsions.

Although such symptoms go back hundreds of years, by 2004, Leitao's descriptions of her son's condition — and the name she had adopted for it — were circulating widely online, picking up speculation and conspiracy theories along the way.

Morgellons also picked up patients, raising the question of whether the websites had become a meeting place for sufferers or an incubator for a shared nightmare with no basis in reality.

Medical history is replete with colorful accounts of the phenomenon known as "mass delusion," which cause outbreaks of physical symptoms that are quickly attributed to infection, poisoning or, of course, metaphysical causes. But those medical curiosities — including recurring mass delusions known throughout Asia as koro, in which men believed their penises were shrinking into their bodies, and Virginia townspeople certain that an array of minor symptoms were evidence of a "mad gasser" — have generally been limited by the means of common communication.

The World Wide Web, however, has made that communication global, with the result that real or imagined, anyone with any of the Morgellons symptoms and an Internet connection can develop a fierce conviction that he or she is infected.

Patients for decades have been coming to physicians' offices with complaints of infestation by bugs, says Dr. Noah Craft, assistant professor of dermatology at Harbor-UCLA Medical Center. But now, when they come in, many are armed with a fat printout of information they've gleaned from the Internet, a community of fellow sufferers with whom they've exchanged information and a name to put to their bizarre symptoms.

"It seems to be a socially transmitted disease over the Internet, and that's the fascinating phenomenon here," says Robert E. Bartholomew, a sociologist with the Australian government who has studied and written extensively on mass delusions. Now that the CDC is investigating Morgellons, many researchers believe many more sufferers will come forward.

In his father's early practice, the younger Horowitz says, doctors recognizing the signs of delusional parasitosis would simply write a prescription for an antipsychotic medication and promise a patient it would help.

Back then, Horowitz says, patients — unaware that their mental health had been called into question — would willingly fill the prescription, take the medication and get better. They still will, he says, in those rare cases where the patient will accept a diagnosis of mental illness and take the pills.

But such a prescribing practice would be considered unethical in modern medical practice, Horowitz says, and it probably did a disservice to patients, whose delusional symptoms should have been acknowledged head-on, whether it makes the doctor disliked or not.

For the CDC to launch an inquiry into the reported Morgellons symptoms, Horowitz says, is also doing patients a disservice. In addition to wasting time and resources, "What CDC is doing is hurting these patients by reinforcing their delusions," Horowitz says. "That's the worst thing you can do for these patients."

Some physicians are not as critical. Craft of Harbor-UCLA believes that the CDC must investigate Morgellons, if only to help quell the groundswell of believers. That may be a hard sell among sufferers, who have come to distrust the government and medical community for writing them off as mentally ill, Craft says. But only the CDC has the resources to begin to unravel this mystery.

"And for all we know, it [the illness] could be real," Craft says. The CDC, for example, could discover that this is an outbreak of delusional parasitosis brought on my some common exposure, such as a neurotoxin. Delusional parasitosis is often seen in recreational drug users (especial those using methamphetamine), victims of stroke and other neurological diseases, as well as in patients with certain vitamin deficiencies. Perhaps, Craft says, some exposure common among Morgellons sufferers may be causing neurological changes that have brought on a common delusion.

Seeking help

Sufferers such as Donna Grace may be skeptical about the CDC's motives, but they have few other places to turn in their bid to vanquish their horrific symptoms.

Last July, Donna Grace said she felt a "mass rumbling" beneath her scalp, and three weeks later, "I felt a hatching of hundreds of thousands of tiny bugs coming down ... crawling throughout my head, down my back. It didn't feel like worms as much as like little feet on a mission, finding homes throughout my body. I felt like I was going crazy, and I knew I wasn't."

She began collecting specimens — "like all good Morgies" — from her bed linens, her body and her stool. She continues to work, to go to church and to care for her family. Without her faith, her family and the care she receives from Savely, says Donna Grace, life would be impossible.

Donna Grace says she has almost lost her faith in the medical establishment, after dozens of doctors have sent her away with either no diagnosis or a diagnosis of delusional parasitosis. "I think they're delusional," she says. When one doctor warned her that the antibiotics and antiworm medications she was taking could harm her, she says she told him, "You don't understand. I need toxins to kill the bad stuff that's in my body."