A Medical Mystery: Delusional parasitosis

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http://www.rgj.com/news/stories/html/2004/05/08/70309.php

 

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

Posted: 5/8/2004 07:49 pm

 

 

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. "