Doctors slow to recognize mysterious disease
Victims of Morgellons suffer real symptoms but accused of delusions
In 1979 Charlotte businessman Marc Iverson fell ill from a mysterious, debilitating ailment. Many doctors didn't believe his symptoms were real, much less the herald of a new disease.
Because symptoms didn't fit any established medical models, physicians couldn't make a definite diagnosis. That was a crushing blow for Iverson, a corporate vice president crippled at age 28.
But he persevered in seeking research, diagnosis and treatment of what became known as Chronic Fatigue and Immune Dysfunction Syndrome. This led to his Charlotte founding of the CFIDS Association of America. Hundreds of thousands of sufferers have since been diagnosed
A few years earlier, Connecticut housewife Polly Murray had complained to health authorities that her family was suffering from an unknown ailment. Persistence got her labeled a hypochondriac. She eventually convinced Yale researchers to investigate, and that led to the identification of the bacteria that had infected her and others with what is now commonly called Lyme disease.
So, will a new malady that has stigmatized a North Carolina woman and thousands of other Americans win similar acceptance in 2007, or will the allegation that they suffer from nothing but delusions cause Morgellons Disease to simmer on the medical back burner?
Debbie Drake -- not her real name -- of Cleveland County hadn't heard of Morgellons when she turned off the bedroom light one night last March and husband Jerry asked why she had blue glitter on her face. She turned the light back on and went to a mirror, but saw nothing unusual. A short while later Debbie felt something biting her legs and face. Pulling back the covers, she expected to find fleas. Instead she saw tiny black specks on her side of the sheets. Strange, she thought, that whatever it was had left Jerry alone. But the biting and crawling sensation continued throughout the night.
Just a case of scabies?
That was the start of an affliction for which her regular physicians can provide no satisfying diagnosis. Her symptoms include severe fatigue, memory loss and especially the intense, itchy lesions in which strange fibers and granules -- auto-fluorescent in some cases -- appear on her skin.When hair started falling out in clumps, she went to a dermatologist who said she had scabies, an allergic reaction to skin mites. It produces itchy rashes when female mites burrow into the skin and lay eggs. Males roam atop the skin, creating a crawling sensation. Since these symptoms matched a few of Debbie's, the doctor prescribed a regimen of topical medications.
But after weeks and weeks of head-to-toe coatings, Debbie's situation had not improved. "I thought I was going to die. The itching was terrible. I reached the point where I hated to go to bed at night." Drake recalled. "I took leave from my job for a short time and was embarrassed to leave the house because of the welts and lesions on my body."
Like Iverson and Murray, she felt she was being treated with skepticism instead of with serious medical attention. "My family doctor didn't come right out and say it, but I got the impression she thought I was experiencing some sort of mental problems," said Drake.
Later she learned that many dermatologists claim the skin fibers and the sensation of parasites crawling under the skin are the effect of a psychosis called "Delusional Parasitosis." Not so, say Drake and other activists.
It appears that the Morgellons equivalent of a Marc Iverson or Polly Murray is biologist Mary Leitao, who in 2002 founded the Morgellons Research Foundation, now based in Maryland. Leitao got involved when fibers appeared on her 2-year-old son. She named the disease after a medical reference to a similar symptom displayed by 17th-century French children called "morgellons."
At least 5 cases in Charlotte
"The number of cases reported to us by persons with the symptoms has doubled in the past year," noted Leitao. "Nearly a quarter of those are from California. Texas and Florida also rank high. So far I know of at least five in Charlotte, and about 70 elsewhere in North Carolina."
Leitao's nonprofit advocacy group has cooperated with medical researchers at Oklahoma State University and funded some of their work. Debbie Drake attended a Morgellons conference there last summer and was relieved to meet folks with similar symptoms.
MRF and online advocacy groups have pressured the Centers for Disease Control and Prevention to escalate a long-delayed examination of Morgellons. That study is scheduled to focus on the California outbreak and will begin the first quarter of this year.
Meanwhile, Debbie Drake holds her head high, and hopes.