By: Jean Johnson for Wounds1Is it all in their heads as some physicians claim? Or are the itching lesions from which bizarre blue, red, or black fibers grow a real phenomenon that the medical world has yet to identify and take seriously? That’s the question and so far, answers are few and far between.
This condition has been named Morgellons Disease by patients and their families, who have started a non-profit foundation dedicated to finding the cause of this problem. Those who have experienced it describe symptoms that mirror scabies or lice: “disturbing crawling, stinging, and biting sensations.” But that’s where the similarities between known conditions and Morgellons end.
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According to the Morgellons Foundation, “most individuals with this disease [also report having] non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin.” While skin symptoms are the most striking aspect of Morgellons Disease, perhaps even more disturbing is its tendency to affect the central nervous system. Most people with the illness say they have “extreme difficulty with mental concentration and short term memory.”
But the psychological problems associated with Morgellons can go well beyond minor inconveniences, the foundation adds. “Mood disorders, such as depression and bipolar disorder, are extremely common in this group of patients, affecting well over half of all individuals reporting symptoms of Morgellons Disease.
“Parents of children with Morgellons also report that the majority of these children have ADHD [Attention Deficit Hyperactivity Disorder], ODD [Oppositional Mood Disorder], mood disorders, or autism. It is estimated that 65 percent of these children have some form of psychiatric illness, and 10 percent have autism.”
The Morgellons Foundation goes on to explain that since physicians tend to not be familiar with the disease and because the symptoms – especially the strange fibers that grow out of the skin lesions – are highly unusual, mainstream health care providers may assume “that the patient is misinterpreting their situation. Nearly all (95 percent) of adults with the symptoms of this skin disease have received a diagnosis of DOP or Delusions of Parasitosis.”
That said, Norman Levine, MD, a professor of dermatology at the University of Arizona believes that there is no misinterpretation at all. He says the fibers patients bring in are textile and from the environment. He also notes that the 100 patients he’s treated for the problem respond to treatment with the drug Pimozide, which is used for chronic schizophrenia.
“This is not a mysterious disease,” Levine told the United Kingdom’s Times Online. “If you polled 10,000 dermatologists, everyone would agree with me.”
Vincent De Leo, M.D., and program director of the dermatology department at St. Luke’s-Roosevelt Hospital Center in New York agrees with Levine. “I’ve seen colors of some of these fibers. Some of them are bright blue. There is nothing in the body that is bright blue. So it has to be something from the environment,” De Leo told ABC News in a summer 2006 interview. “They’re fibers that I believe are from the environment, not from inside the skin.”
As far as the open sores, De Leo thinks they are caused by patients who have psychiatric disorders. Thinking that their bodies are beset with parasites, they scratch at their skin until they cause ruptures that turn into in full blown lesions under continual assault.
Others, like Mary Leitao, disagree. Leitao, a trained biologist who established the Morgellons Foundation after watching her young son suffer for five years, found the name Morgellons in research she did on the disease. She unearthed commentary by Sir Thomas Browne from 1690 attesting to the same symptoms Leitao has observed on her son.
“Last night he had just taken a shower and I dried him off, and he said, ‘Mom is it normal for black hairs to come out of your skin when you scratch?’” Leitao told the Times Online. “He scratched where his skin was very inflamed and bluish gray fibers rolled out of clean skin. He had just gotten out of the shower.”
