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Disease: Real or state of mind?

Morgellons sufferers describe wild symptoms of a disorder that many doctors doubt exists.

November 13, 2006|Melissa Healy | Times Staff Writer

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. 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 some new infection or unseen environmental toxin.

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, 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 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. "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.

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