A Medical Mystery: Delusional parasitosis
Patients claim fibers sprout from lesions and parasites crawl under
their skin. Most doctors tell them it's all in their heads
Frank X. Mullen Jr. RENO GAZETTE-JOURNAL

PLAGUED FOR YEARS: Theresa Blodgett's upper thigh is covered by a
rash. The Reno resident has been plagued for years by a mysterious
illness.

For more than three years Reno resident Theresa Blodgett, 37, has had
a mystery disease that seems like a plot device from the television
show "The X-Files."

Blodgett's symptoms include feeling invisible "parasites"
biting her
skin. She complains of overwhelming fatigue and body aches. She
suffers from hair loss, skin lesions, rashes, and blue or
red "fibers" that sprout from her lesions. She sees tiny
black specks — like coffee grounds — on her arms.

More than a dozen doctors have told her the cause of her strange
ailment is in her mind.

But a controversial new theory says many people who are branded with
delusions of parasitosis are suffering from a physical illness, not a
mental disease. Enlarged images of the "parasites" are posted
on several Web sites and a Texas doctor said he has found biological
causes and physical evidence for many of the symptoms described by
Blodgett and others.

Dr. William Harvey of Houston said many of his chronic fatigue
patients, including 17 with "mystery disease" symptoms, have
tested positive for borrelia burgdorferi, the bacteria that also
causes Lyme disease. He suspects the weird symptoms and parasites are
not the cause of the illness, but are opportunistic infections and
organisms taking advantage of the lowered skin immunity of people
whose systems are weakened by the microbe.

Harvey said delusional parasitosis is a real disease, but some of the
patients he's seen aren't hallucinating. Because the symptoms
of the real disease match the description of the psychosomatic
ailment, doctors often misdiagnose the cases, he said.

"This disease isn't alien or magical; it's real and the symptoms are
real," said Harvey, who is board-certified in aerospace medicine and
has worked both as a space-medicine researcher and in hospital
emergency rooms. "After three-and-a-half years, I'm still trying to
understand this as objectively as I can…

"Without understanding the skin lesions fully, I'm treating patients
with antibiotics and having clinical success. Something appears to
have happened to their skin immunity."

But most dermatologists and other doctors interviewed said they
aren't buying the theory, even though they haven't seen Harvey's
research or the microscope photos of the strange fibers. They dismiss
the mystery disease as a mental condition.

Dr. Peter Lynch, professor emeritus in dermatology at the University
of California, Davis, said the attempt to identify a physiological
reason for delusional parasitosis symptoms is "a convenient way not
to have to deal with a psychological problem."

"In many cases, (delusional parasitosis) is a mono-delusional
problem," Lynch said. "The patients are normal in every other way.
It's always hard to get such patients to believe it's a psychological
problem. Some patients are very convincing, and I've had
psychiatrists call me about referrals I've made and ask if I'm
absolutely sure there's nothing organic going on here."

He said in the 40 years he has been practicing medicine he hasn't
seen a delusional parasitosis patient with physical symptoms that
can't be explained. He said while it's possible some cases may be
wrongly diagnosed, it's unlikely a large segment of patients is
suffering from a physical illness.

"You can miss a case and of course that happens," Lynch said.
"But are many being missed? In a word, no."

Same symptoms seen

This is the story of a disease allegedly misdiagnosed for
generations. This is a story about doctors who know their patients'
suffering is real, but insist in the majority of cases that the
problem is in their minds. This is the story of some "hallucinations"
that can be seen under a microscope, and of a fear that keeps
patients miserable, isolated and on the brink of despair.

Whether myth or fact, no one denies patients are in great pain.

Blodgett said it's as though her body has turned against her.

She gathers up the black specks, the mysterious fibers and the small,
fuzzy "cocoons" she finds on her skin and around her home. She tapes
the macabre samples to typing paper, but she said no doctor will
analyze the collection. Physicians who glance at the specimens
dismiss the lot as stray hairs, clothing fibers, scabs and other
common household debris, she said.

"It's a nightmare," Blodgett said. "Every day I awaken to a nightmare
and no one will believe me."

Doctors have diagnosed her with delusions of parasitosis. Medical
journals define DOP as a patient's unshakeable and mistaken belief
that he or she is infected with parasites. Some physicians have
prescribed anti-depression medication for Blodgett that she said
makes her sicker and causes muscle spasms.

"I need help," she said. "I'm not crazy. This is happening to me. I
know it's unbelievable but it's happening. It's not in my mind; it's
in my body."

She is not alone.

Thousands of people from Canada to Miami, and from Seattle to Houston
report the same symptoms, according to a national group formed to
help such patients. Scientists have used state-of-the-art microscopes
to take photos the fibers and "parasites," but they remain
unidentified. The Reno Gazette-Journal talked to other patients in
Reno, Fallon, Fernley, Las Vegas, Boulder City and the Bay Area who
report similar symptoms and have received similar diagnoses: their
disease is psychological, not physical.

But if Blodgett and other patients are delusional, the activists
said, thousands of people have been having the same hallucinations in
exactly the same way, thousands of miles apart. And the delusions can
be photographed and — if anyone will take the time — studied.

"I was feeling things moving under my skin," said Margaret Moore, a
San Francisco interior designer who has had symptoms for five
years. "Something was coming out of the lesions on my skin, something
that looked like tiny worms or filaments. I brought the samples to my
doctor, but he didn't want to look at anything. He threw out my
samples and asked if I had a history of psychosis."

Moore said when she insisted the symptoms were real, the doctor "got
mad" at her and prescribed a muscle relaxant. She went to other
doctors who gave her the same diagnosis "from across the room,"
without seriously considering her complaints.

During the last year, thanks to the Internet, she has corresponded
with dozens of other people with the same symptoms who were also told
by doctors their illnesses were in their minds.

"I don't think we're all having this mass delusion," Moore said. "But
when your family hears that five or six doctors all agree, they
say, `come on, admit you're nuts.'

"Then you are really alone."

The Morgellon's Foundation — named for an early description of a
similar-sounding illness — was formed in 2002 to help the people
most doctors won't believe. Some doctors interviewed said the
foundation is dangerously reinforcing peoples' mental illnesses.

But the foundation's spokespeople said the knee-jerk diagnosis of
delusions is the problem, not their questions or the evidence they
offer. Morgellons' members encourage further investigation into
what they consider a health mystery. But they said researchers don't
seem interested in new data and dismiss their information as
quackery.

Mary Leitao of McMurray, Pa., is the executive director of the
Morgellon's Foundation, a group she said she began out of
desperation. Her son, Andrew, now 5, began complaining of things
crawling on his skin and was breaking out in lesions when he was 2.

Leitao, who has a degree in biology and who has worked as an electron
microscope operator and a chemist, saw the fibers and the "fuzzballs"
in Andrew's skin lesions. She took him to an infectious disease
specialist at Children's Hospital of Pittsburgh.

At first, she said, the specialist thought the skin condition was an
unusual case of scabies and prescribed a cream-based medicine. When
that didn't work, the doctor assured her the lesions weren't
caused by anything infectious and Andrew was referred to a
dermatologist.

Leitao said the dermatologist was initially fascinated by the blue
fibers sprouting from her son's skin lesions.

"The doctor looked at everything I showed him," she said.
"He examined Drew's skin lesions using the handheld microscope I
brought. He was so amazed at the blue fibers coming straight out of a
skin lesions that he called his physician's assistant over to look at
them."

She showed the doctor how the fibers glowed under an ultraviolet
light.

"(The dermatologist) admitted he did not know what made the fibers,
but was not willing to help me find out," Leitao said. "His final
diagnosis was eczema. He gave my son topical eczema medication, which
did not help."

As she left his office, she saw the doctor going out to lunch with
his wife and 4-year-old son.

"Not a care in the world," she said. "What is wrong with these guys?
No innate scientific curiosity or human empathy?

"I realized I was on my own."

Other parents of Morgellons' patients said their children also have
been diagnosed with common skin conditions, but if the parents also
report symptoms they get the DOP label.

The textbook diagnosis

Medical textbooks and journals warn that when a patient visits a
doctor with samples of "parasites" removed from their skin,
it's usually an ominous sign of mental illness.

"But the first obligation is to make sure they don't have an
infestation," said Dr. Jay Adams, a Carson City dermatologist who
is president of the Northern Nevada Dermatological Association.

"Take the time to look at it under a microscope."

He said doctors usually get a sense of the patient during the visit
and may suspect they're dealing with a delusional person.

"Everybody has fibers and foreign objects on their skin, even things
that live on them although we don't usually like to think about it,"
Adams said. "For the most part people don't obsess about that. There
definitely are a group of patients who have focused on the idea that
things are crawling under their skins and will take extreme measures
to prove that to you. It can take over their lives."

Adams said it's possible some patients may be misdiagnosed with
delusions when they actually may have a physical cause for their
symptoms. But he said that's rare.

"I think that patients with (delusions) are a far more common answer
than any of the patients who may really have parasites. Delusions of
parasitosis is real. Most of the patients are delusional."

He said that under magnification, the samples usually turn out to be
lint. As for the black specks and other things the patients get off
their skins, he said it's possible to scratch, and poke and peel
away parts of the skin tissue or just collect the lint that can be
found anywhere.

"You don't want to encourage people to further resist the idea that
they are not infested with parasites," Adams said. "It's dangerous to
reinforce their delusion."

The medical books also have an explanation for family members or
friends of patients who witness the strange fibers or parasites. It's
called "folie a deux" — a French term meaning "the madness of two."
If more than one person testifies to seeing the symptoms, then
it's called "the madness of three," and so on.

Thus, witnesses don't count because being a witness is considered
evidence of sharing the patient's delusions.

Adams said he is not familiar with the Morgellon's Research
Foundation, but said it sounds like a "cult" in which the members
reinforce each other's psychosomatic symptoms.

Patients band together

Yet patients a continent apart have reported the same symptoms and
strange parasites long before seeing the Morgellon's Web site or
talking to other patients with similar symptoms. All said their
doctors made a snap diagnosis of delusions.

Lobelia Sharp, a plant pathologist at the University of California
San Francisco, said she's had the lesions, fibers and other symptoms
for about six months. She was diagnosed with delusional parasitosis,
she said.

"I kept insisting that the doctors look at the fibers coming out of
my skin," she said. "They said the answer was anti-depressants,
chemical restraints. I was taken to the hospital by ambulance and
held in the mental ward."

She said she and a friend who is a mold scientist recently spent an
evening using tweezers to snag "filaments" out of her skin welts and
examine them under a microscope. The material — which she said was
cellulose plant fibers — were similar to each other but unlike
anything either of them had ever seen.

"These were highly ordered cellulose fibers, not lint," she said.
Some research done

William Harvey, the Houston physician who believes the disease is
real, said he saw his first Morgellon's patient in November 2001.
She was the daughter of a surgeon who suffered from unexplainable
skin lesions.

"The patient told me some strange stories about things that were
living on her skin so I, too, wondered if her illness was
psychologically based," he said.

He looked at the lesions and saw "tiny colored threads" in the
wounds. He sent several specimens to a mold expert for analysis. The
fibers were put in culture dishes to grow, but only a fungus called
candida tropicalis was found.

Harvey also found tiny worms on a patient's scalp that later proved
to be the nymph form of a feline parasite — a tapeworm that preys
on cats and shouldn't be found on humans. Other patients were
infested with forms of algae, other plant pathogens, or candida
tropicalis, the fungus found in the laboratory culture of he "fibers."

"Once I started taking these patients seriously, I saw the variety
and number of unusual and unexpected skin occupants was real, they
were unequivocally there," Harvey said. "I still don't know what some
of these things are, but my theory is that the symptoms are a
phenomenon of a much larger process that has rendered their skin
immunity ineffective."

The process could allow plant and animal organisms that couldn't
survive on uninfected people to thrive on Morgellon's patients' skin.

Some patients report the "crawling feeling" without the threads,
lesions or other symptoms, Harvey said, and all seem to have easily
testable immune deficiencies. All 17 of his "Morgellons'" patients in
Houston have tested positive for the microbe associated with Lyme
disease, he said.

Harvey said he treats the skin lesions with a lactic acid cream and
all the other symptoms with high-dose antibiotics. He said the
lesions heal over with treatment, but they leave blue indentations at
the sites of the skin breaks. "That scar may give us a clue," he
said. "Something pathologic is happening there."

His first two patients who have completed treatment for their
borreliosis symptoms appear to have recovered their skin immunity and
lost their "Morgellons'" sores as well, he said.

"Kill the infectious agent and the immune system appears to reset
itself," he said.

Harvey said physicians' inability to see diseases before they are
officially "discovered" in peer-reviewed journals isn't rare.

"Diseases are defined within a box and thus everything outside that
box isn't the disease," Harvey said. "That's the way medicine and
science evolves. All definitions in all texts change continuously. In
this case we know enough to broaden the size of the box and know that
in time we'll get to the more fundamental reality."

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