How I Cured Morgellons

(5/8/04) A Medical Mystery: Delusional Parasitosis

Frank X. Mullen Jr.
RENO GAZETTE-JOURNAL
5/8/2004 07:49 pm

David B. Parker/David B. Parker
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 the "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."