- After an avalanche of panicked inquiries from patients
across the country who claim to have been stricken with a mysterious skin
disease, the federal Centers for Disease Control and Prevention is preparing
to begin a full investigation.
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- The patients, clustered in California, Texas and Florida,
describe symptoms that include sores that are slow to heal, a sensation
of things crawling through their skin, joint pain and persistent fatigue.
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- Many say they believe they have Morgellons disease, a
diagnosis that has received wide attention on the Internet but is viewed
skeptically by some doctors, who suspect that it is psychosomatic in origin.
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- In its investigation, to be carried out in Southern California,
the centers will conduct environmental tests as well as physical and psychological
evaluations of people who say they are afflicted.
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- "If it's a new bug or something, we'll find it pretty
quickly," said Dan Rutz, a spokesman for the centers and a member
of the task force planning the investigation.
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- "Our minds are open to all the possibilities,"
he said.
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- Whatever its cause, Morgellons disease joins a growing
list of symptom clusters that public health officials have been forced
to examine closely in part because of the organizing power and unprecedented
reach of the Internet.
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- Morgellons was brought to public attention by a woman
in South Carolina, Mary Leitao, who in 2001 created a Web site describing
the mysterious sores and bizarre threadlike extrusions that afflicted her
young son. She said she had tried for years to find a medical explanation
for his illness. Ultimately, she said, doctors accused her of staging it.
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- Ms. Leitao named the condition Morgellons after a 17th-century
medical study she'd found that described French children with roughly the
same symptoms.
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- After creating the Web site, she said, she was inundated
with e-mail messages from people who said they also had the disease. More
than 7,000 people claiming to have Morgellons have registered on the site.
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- Brandi Koch, 31, is one of them. Ms. Koch said her illness
began three years ago, when her arms and legs started to swell. Doctors
diagnosed an autoimmune disease, perhaps arthritis. A few months later,
Ms. Koch's back became spangled with lesions; doctors said it might be
scleroderma.
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- A self-described "Type A personality," Ms.
Koch said she increasingly felt forgetful and detached. Lyme disease, the
doctors decided.
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- "Then the horror really started," Ms. Koch
said. "I noticed there was some kind of matter coming out from my
skin, not just from where I had sores."
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- The substance, visible to others, was like large flecks
of black pepper, said Ms. Koch, who worked out regularly and competed in
10K races before she fell ill.
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- After a dozen doctors failed to provide a diagnosis,
Ms. Koch discovered Ms. Leitao's Web site and realized that she had Morgellons
disease.
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- "It is the most terrifying, disgusting, horrific
thing I've ever had," Ms. Koch said. "I don't know how anyone
could have it without feeling a little crazy."
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- Ms. Leitao said that many of the people who visit her
site have been told by doctors that their symptoms are delusional - the
province of psychiatry rather than infectious disease. Several mothers,
Ms. Leitao said, told her that they had lost custody of their children
after doctors decided the youngsters' symptoms were contrived. Earlier
this year, a young man in Texas reportedly committed suicide after struggling
with what his mother has described as Morgellons.
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- Doctors themselves are divided over whether Morgellons
is a medical or a psychiatric illness. The patients are clearly suffering
from something; it is just not clear what that something is.
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- "I think it's a real disease," said Dr. Rafael
Stricker, a physician in San Francisco who sees many patients claiming
to have Morgellons.
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- "Certainly there is an element of psychiatric distress
here, but that's because the patients are ill and nobody wants to listen
to them," he said.
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- Many patients also test positive for Lyme disease, Dr.
Stricker has found; certain antibacterial and antiparasitic medications
sometimes seem to alleviate the symptoms, he said.
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- But doctors said that after testing the skin extrusions,
laboratories routinely dismiss them as plant or textile material.
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- "You send away the blood work and specimens, you
don't get anything back," said Dr. Neelam Uppal, a physician in St.
Petersburg, Fla., who treated Ms. Koch and has seen a dozen other patients
with similar symptoms.
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- "I feel it's a parasite, perhaps a fungus,"
Dr. Uppal said. "You have to give patients the benefit of the doubt."
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- Despite hints of a physical cause, most patients are
eventually confronted with a psychiatric diagnosis. The symptoms bear a
close resemblance those of delusional parasitosis, a disorder in which
sufferers, often drug abusers, believe they are afflicted with hidden parasites
and resist all evidence to the contrary.
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- Researchers have found that delusions like this can be
passed from primary patients to secondary ones, usually susceptible family
members or close associates. Psychiatrists call this phenomenon folie a
deux.
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- In one remarkable case, a woman convinced her husband
that neighbors were shooting at her with lasers. In another, an elderly
woman convinced her live-in sister that they were both being attacked by
bugs.
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- "Parasitosis is a classic form of shared delusion,"
said Dr. Mary Seeman, an emeritus professor of psychiatry at the University
of Toronto. "Skin disease is perfect for it. A person gets a rash
or something, then the 'disease' spreads through any shared space in which
there is close contact."
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- But the Internet may have greatly altered the dynamics
of folie a deux. In the connected, always-on world, separation is no longer
so easy, and delusions may be shared and supported far beyond the confines
of the home or workplace.
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- "Morgellons patients feel they've been jerked around
without getting the care they need," said Mr. Rutz of the disease
control centers.
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- "Often they show up at the doctor's office with
all this stuff they've found online or in the media, and when they try
to explain it to a skeptical physician, communication just breaks down,"
he said.
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- While much has been made of the Internet as a medium
for psychological support, experts have only begun to ponder its potential
for spreading delusional thinking.
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- "When a person has something bothering him these
days, the first thing he does is go online," Dr. Seeman said. "You
can get reinforcement of your ideas very quickly there."
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- Those who believe they have this strange new illness
have grown accustomed to questions about their mental health.
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- Ms. Koch, for example, is weary of medicine's harsh judgments
and has all but abandoned doctors' offices. "If I thought they were
really serious about doing the research, I could give them the show of
a lifetime," she said.
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- "I wish I were nuts," she added. "That
would be the best-case scenario in some ways. But I'm not."
- http://www.nytimes.com/2006/10/24/health/24cons.html?_r=1&ad
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