“FIBERS IN a variety of colors protrude out of my skin like mushrooms,” said Joni Mitchell about her Morgellons disease, which has left her housebound and feeling as if she’s being “eaten alive.”
Morgellons disease (MD) is a “disfiguring and distressing condition,” according to dermatology researchers at Wake Forest. Symptoms include sensations of crawling, biting and stinging on the skin that can be very painful; and multiple, non-healing skin wounds.
But the existence of red, blue, black and white fibers in the skin is the most notable complaint— hence the nickname “fiber disease.” Patients bring scabs and other skin samples with embedded fibers—called “matchbox” or specimen signs —for testing.
Since the first reported U.S. cases in 2002, the estimated prevalence of Morgellons disease is about 3.6 cases/100,000, most often in white, middle-aged women,” according to a 2012 CDC study of the disease.
Until recently, most of the medical community agreed with the CDC conclusion that Morgellons symptoms are based on “delusional parasitosis,” a psychiatric condition in which sufferers erroneously believe bugs are infesting their skin. (Ekbom Syndrome is a related form of delusional parasitosis.)
The CDC analysis of 115 patients determined that the protruding fibers were made of cotton—not bodily substances—and traced the skin sores to “long-term picking and scratching the skin.”
Noting that symptoms of Morgellons are similar to those of Lyme disease (LD)—fatigue, itching, joint aches, loss of short-term memory, difficulty concentrating, insomnia—the CDC tested for and eliminated Lyme. Morgellons researchers at Oklahoma State University agreed that “there is no evidence” linking MD to the spirochetes that cause Lyme.
Since that 2012 report, however, “multiple studies report a possible link between Morgellons and infection with Borrelia spirochetes,” according to the Mayo Clinic.
“Borrelia spirochetes are readily detectable in MD tissue, but sensitive and specific methods are required,” assert Canadian microbiologist Marianne Middelveen and colleagues. “The CDC used “two-tier serological LD testing…although specific for Bbss, lacks sensitivity and is little better than a coin toss in detecting LD.”
In addition, Middelveen and colleagues write that MRI imaging shows alterations in gray matter than could be linked to spirochetal infection. And that careful sectioning and staining of skin samples “determine the keratin and collagen nature of these fibers.”
Linking these fibers to Lyme, they suggest that “underlying spirochetal infection causes a filamentous dermopathy that is accompanied by an array of LD-like multisystem symptoms.”
In the researchers’ paper, “History of Morgellons disease: from delusion to definition,” they point out that the CDC conclusions did not meet conditions for the diagnosis of delusional disorder based on the DSM 5 — the diagnostic manual for psychiatric conditions —notably that any possible physical cause must be excluded.
“In most of the case studies that equate MD with [delusional disorders]… evidence of disease (physical and laboratory) was dismissed, fibers were identified as being textile in origin based solely on visual examination, physicians were unwilling to examine skin at sufficient magnification to see microscopic fibers,” they write.
Delusional disorders must involve “false beliefs based on incorrect inference about external reality that persist despite the evidence to the contrary,” according to the DSM 5. The beliefs must last for at least one month with no other psychotic symptoms.
Delusional disorders share overlapping symptoms with other diagnoses—notably the “overvalued ideas” present in OCD, body dysmorphic disorder, hypochondriasis. But while OCD often involves mistaken ideas, for example about cleanliness, that diagnosis requires repetitive, ritualistic behaviors that are absent in delusional disorders.
Delusions in one sub-category, “somatic” (referring to bodily function or sensation) range from the “bizarre,” such as that one’s bones are twisted around each other; to non-bizarre, which “mirror real health conditions,” such as broken bones.
Among non-bizarre delusions are partial paralysis, bodily odors and pregnancy. Reported cases include a man who complained that he was unable to sleep at night, despite tests showing he slept for many hours; and a woman who could feel a foreign substance in her mouth that interfered with eating, although no such substance could be found.
With Morgellons disease, colorful fibers protruding from the skin are bizarre, but non-bizarre itching and skin eruptions occur commonly with real skin disorders such as allergies, dermatitis and parasitic diseases.
What can make Morgellons most challenging for sufferers is lack of awareness of the condition, even among doctors. “Unexpectedly getting a psychiatric diagnosis when you believe you have a skin disease can be devastating,” writes Nancy Moyer on Healthline and can, in turn, “worsen symptoms or even lead to new ones.”
Defining MD as a psychiatric condition gains support from the occasional positive response of symptoms to antipsychotic drugs, which target the neurotransmitters dopamine and serotonin. On the other hand, “reduced growth of parasites and anti-pruritic properties” are listed as off-label effects of these medications, according to Middelveen.
Treatment for Morgellons often includes psychological approaches, such as cognitive behavior therapy. But because the belief of MD sufferers that they have a physical disease is so difficult to dislodge, many are resistant to or upset by such recommendations.
One cause of delusional parasitosis is recreational drug use—with “coke bugs” and “meth mites.” In a study of 147 patients complaining of bug infestation, 11% had a history of drug use (methamphetamines, cocaine, heroin, marijuana, and other street drugs), according to Middelveen.
Among MD sufferers, Joni Mitchell admitted to “taking a lot of drugs over the years, including mounds of coke,” according to the Daily Mail. But she was also a victim of childhood polio, a potential infectious link for MD that has not yet been pursued.
—Mary Carpenter
For more reporting from well-being editor Mary Carpenter, click here.
You don’t mention if this disease is more prevalent in women than in men, which could lead to the psychiatric diagnosis instead of looking for a physical cause. And what about a real cure?