Diagnosis or Delusion?

The sores that cover Cindy Casey’s body are oozy and crusty. “They start out looking something like a mosquito bite that you’ve scratched, and they just sort of erupt and form a raised red lesion,” she says.

She says they contain microscopic filaments that are red, black, blue, or green, and that they’re also incredibly painful. “It feels like you’ve got a sunburn and then been rolled in a cactus patch all over,” she continues.

Casey, 52, says she has Morgellons, a condition that its sufferers assert causes skin abrasions all over the body, as well as neurological symptoms like fatigue and trouble concentrating. She calls it a life-changing, chronic illness, but even as an intensive-care nurse, Casey had a hard time finding help: Most doctors doubt it’s a dermatological affliction. Instead, they believe the physical symptoms result from a psychiatric condition.

“There’s no doubt these patients are suffering,” says Jason Reichenberg, a dermatologist at the University of Texas. Even so, he adds, “95 percent-plus” of his colleagues are skeptical the condition is caused by anything physical.

When patients with these symptoms seek dermatological treatment, they’re usually told that they have delusions of parasitosis, a condition in which people are falsely convinced that they’re infested with parasites—told, in other words, that the crawling, itching sensations under their skin are only in their heads, and the fibers are remnants from clothing. Still, they pick away, trying to get the feeling out. According to Casey, most doctors refuse to even examine the alleged skin fibers and only offer anti-psychotic medication as treatment. It took her three years to find a dermatologist willing to treat her in any other way, and she and her husband had to drive all the way from California to Texas to see him.

In 2005, Casey channeled her frustration into co-founding the Charles E. Holman Morgellons Disease Foundation. The foundation, named after Casey’s husband (who did not suffer from the condition), is a group dedicated to funding scientific research and providing support for the 20,000 self-identified Morgellons patients across the globe.

According to Casey, the foundation’s efforts are helping the mysterious disease gain legitimacy as a medical concern. It now has small scientific and medical advisory boards with doctors and scientists from the United States, Canada, Germany and Australia. Medical ethicists have written papers discussing the most compassionate ways for doctors to treat Morgellons patients. And it even received pop-culture attention earlier this fall, when the CBS crime drama “Criminal Minds” featured it as part of an episode.

Yet for all the publicity the community has generated, the combative tactics of some Morgellons patients have further alienated themselves from the mainstream medical community. By linking Morgellons to another illness viewed skeptically by most doctors, chronic Lyme disease, and by attacking those who doubt their condition, these patients may have made themselves more notorious than sympathetic.

“I don’t think that the recent media blitz [over the past three years] has changed much,” says Reichenberg, the Texas dermatologist. “More doctors have heard the term ‘Morgellons,’ but most think it’s a new term for delusions.”

They have reasons to be doubtful: In 2012, the Centers for Disease Control and Prevention published a paper that settled the debate for most doctors. The study examined 115 patients who had reported via a questionnaire that they had fibers coming from their skin, or other abnormal skin sensations. After examining the patients, the authors declared that there were no common underlying medical reasons for these symptoms, concluding that most of the fibers the patients described were actually pieces of cotton from their clothing. Namita Joshi, an associate policy director specializing in parasitic diseases at the CDC, called the study “the most comprehensive clinical and laboratory study of this condition to date.” The CDC is no longer studying Morgellons.

But that doesn’t stop doctors like Ray Stricker, a Lyme-disease specialist in California, from pursuing further research. Stricker volunteers on the Holman Foundation’s medical advisory board, and calls the CDC study “worthless” because an external peer review of the study found that none of the participating patients had lesions characteristic of Morgellons. (One of the authors of the peer review is also a scientific advisor to the Holman Foundation.)

Stricker and his colleague Marianne Middelveen, a veterinary microbiologist in Alberta, Canada, believe that Morgellons may be related to chronic Lyme disease. In 2011, they published a paper noting similarities between Morgellons and a cattle skin condition called Bovine Digital Dermatitis. When they took samples from afflicted cows and humans with Morgellons, they found similar spiral-shaped spirochete bacteria; in people, it was the same bacterium that causes Lyme disease, Borrelia burgdorferi.

Stricker believes Morgellons fibers are the body’s reaction to chronic Lyme. “If you treat the underlying Lyme infection, you can make the body stop overproducing fibers.”

He treats his patients with long-term doses of antibiotics and claims to get positive results, though he acknowledges that in some cases it can take years for symptoms to ease.  The Holman Foundation’s Casey was on the drug regimen for three years before she felt any kind of relief. Her symptoms returned, she says, when she briefly stopped treatment after her husband died in 2007.  

However, the CDC doesn’t recognize chronic Lyme disease. Instead, it refers to patients with Lyme-like symptoms—like extreme fatigue and joint pain—as having “post-treatment Lyme-disease syndrome.” Scientists think these symptoms may result from tissue damage from a previous Borrelia infection, but not a persistent one. Studies conducted by the National Institute of Allergy and Infectious Diseases suggest that long-term antibiotics may not actually alleviate any symptoms in patients with PTLDS, either: After receiving this treatment, these patients showed no more improvement than those receiving the placebo.

Most dermatologists remain unconvinced about Morgellons, and worry about treatment regimens like Casey’s: Even short-term doses of antibiotics can cause gastrointestinal distress, and long-term use can cause serious liver damage. Jennifer Murase, a dermatologist from the Palo Alto Medical Foundation, says that when her Morgellons patients tell her they’re also being treated for chronic Lyme, she immediately checks their prescriptions. “If it’s higher than what you [typically] prescribe in Western medicine, I make sure the patient is aware the dosage should be in a certain range,” she says. The Infectious Disease Society of America states that Lyme disease can be treated with a few of weeks of antibiotics, but some patients receiving treatment for chronic Lyme may be given antibiotics for months or even years at a time.

North Carolina doctor Steven Feldman, a dermatologist at Wake Forest University Medical Center and member of the American Academy of Dermatology, says the characteristic Morgellons lesions are self-inflicted. “We know they’re digging at their skin,” he says. Though he’s willing to treat patients with these symptoms, he looks for some other underlying cause, like a contact allergy or a neurological problem.

As the disease has attracted more attention, the disagreements between Morgellons patients and the medical establishment have become increasingly hostile. Some patients are aggressive toward doctors who have denied them treatment, Casey acknowledges. “Even my dermatologist says that he had to call security on [a patient] the other day,” she says. Casey’s doctor, whom she declined to identify, attends Morgellons conferences but doesn’t wear a nametag labeling him as a medical professional for fear of confrontations with patients.

Even the Holman Foundation, whose goals include integrating Morgellons into mainstream medicine, includes an entire online page with mocking, altered photos of doctors who have expressed public skepticism about Morgellons.

What upsets many physicians is that they say they are willing to offer treatment —as a psychiatric condition. “You call it Morgellons, I call it delusional infestation. It doesn’t matter what we call it, [if] we have a mutual understanding of how I can potentially help you,” says Murase, the Palo Alto dermatologist. When she treats patients for Morgellons, she treats sores superficially but also recommends therapy and anti-psychotic drugs.

Nancy Egger, 62, says she has suffered from Morgellons for over 30 years. She now sees Eboni Cornish, a doctor near her home in Fairfax Station*, Virginia, but in the past has struggled to find someone who believes her. She once had a doctor who accused her of inserting fibers into her own skin. “I left her office and I have never been that upset in my life,” she says.

It’s counterproductive for Morgellons patients to bounce from doctor to doctor, according to Feldman, the North Carolina dermatologist. “Generally speaking, doctors are extraordinarily good at what they do,” he says. Every time patients see a new physician, they’re going to start the diagnosis process all over again, and they probably won’t find a dermatological explanation, he continues. This may end up delaying needed treatment, psychiatric or otherwise.

Although Morgellons patients may not like to hear psychological diagnoses, they’re mentally well enough to refuse treatment, says Ylva Söderfeldt, a medical ethicist at the Institute of History, Theory, and Ethics in Medicine in Aachen, Germany. “It’s probably hard to get [Morgellons] patients to seek psychiatric help, but … if it’s a delusion, they can make their own decisions.”

Casey feels good about her decision to reject psychiatric treatment. It’s bad enough to have a disfiguring illness, but then to have no one believe her is devastating, she says. The antibiotics she’s taking under her doctor’s supervision have reduced her symptoms, though she acknowledges they haven’t gone away. “I still have lesions and fibers,” she says. “It’s kind of become my life.”

* This post originally stated that Nancy Egger lives in Alexandria. We regret the error.