Doctors ponder: Is it a disease or all in your head


After a six-year search that involved four doctors and dozens of medical tests, Abby Bernstein learned what had been ailing her. It turned out the Rockville woman had autoimmune hepatitis, finally revealed by a test that showed scarring of her liver.

All that time, she suffered discomfort ranging from flu-like symptoms to swollen hands. "I didn't get the attention and focus ... that I really needed," said Bernstein, 47.

Certain ailments, including many autoimmune diseases, remain hard to diagnose because of the lack of reliable tests for them and because of symptoms that can vary widely. Doctors also might be skeptical; sometimes they find that symptoms are influenced by a patient's emotional or mental state.

The issues have been raised anew as doctors ponder a range of complaints that some people have given the name Morgellons disease. The patients say their symptoms can include fatigue, a feeling that bugs are crawling on them, skin lesions and fibers appearing on the lesions.

The U.S. Centers for Disease Control and Prevention has appointed a panel to review whether Morgellons can be characterized scientifically as a specific sickness.

"A patient can have many kinds of complaints that don't seem to fit into any one type of disease," said Dr. Noel Rose, director of autoimmune disease research at the Johns Hopkins University Bloomberg School of Public Health. "Physicians tend to look at them and shake their heads and say, `I don't understand.'"

Rose was consulted by the CDC about whether Morgellons could be an autoimmune disorder.

"I personally doubt it because as a scientist, I have to be a skeptic," he said. "But I do think they need to pay attention to it."

The review was initiated after a number of calls this year from worried people, CDC officials say.

"There's a lot of people who have self-diagnosed with this, and right now we don't know what Morgellons means," said Dan Rutz, a CDC spokesman. "Whether it's a new disease or not is still up in the air."

More than 100 people who say they have the ailment in California will be interviewed and possibly examined by CDC physicians, he said. There is no deadline for the panel's report.

"It's possible they could have different diseases," Rutz said. "The description of symptoms is fairly broad."

Those who claim to have Morgellons have set up a foundation and a Web site.

One of them is Dr. Beverly Drottar, who said her condition includes sores all over her body, occasional swelling in her legs and strange sensations. She described them as fluid movements under her skin and pulling sensations, as if her tendons are being stretched.

Drottar, who trained as a physician but quit practicing years ago because the symptoms were severe, has consulted doctors.

"They tell me it's acne or rosacea. If they're being kind, they tell me the sores will heal if I don't touch them," said Drottar, 52, of Portland, Ore. She said she also suffers from Lyme disease and depression and discovered Morgellons while searching on the Internet for clues to her symptoms, which come and go.

Doctors remain skeptical about whether Morgellons is different from what dermatologists have seen for years in patients whose claims of skin ailments are known as the delusions of parasitosis. The lesions are caused by endless scratching, they say.

"I'll admit that medical science is sometimes wrong, and it could be wrong here, but this shows all the classic signs of being based in a delusion," said Dr. Noah Scheinfeld, an assistant professor of dermatology at Columbia University in New York.

The CDC review raises a thorny issue that doctors face every day: how do they tell whether a patient is delusional, faking symptoms or has a legitimate disease.

Morgellons joins a list of hard-to-diagnose maladies that have often been viewed skeptically by physicians. Gulf War syndrome, chronic fatigue syndrome, multiple chemical sensitivity syndrome and various autoimmune disorders can also pose particular challenges for physicians - even when the symptoms are debilitating, experts say.

Bobbie Lively-Diebold began suffering from multiple chemical sensitivity in January 1988 when the EPA office where she worked was moved into the Waterside Mall complex in Southwest Washington. Chemical vapors from carpet glue and other materials triggered respiratory and nervous system responses that continue to sicken her.

She is one of five plaintiffs who shared a $1 million judgment in a suit stemming from the renovations. To this day she shuns perfume, scented soaps and synthetic fabrics. Exhaust from heavy traffic irritates her. Two years ago she suffered slurred speech and stroke-like paralysis on her left side for five days after a crew sprayed herbicide in her Virginia neighborhood.

Several doctors have expressed skepticism about her condition. "They do all these tests on you and nothing shows up," she said.

But medical experts say sometimes skepticism is appropriate.

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