By Christina Bucciere
Sarah Victor doesn’t bother going to doctors anymore.
Victor, a 49-year-old restaurant manager from Bucktown, says she’s been told for years that her illness is all in her head, and that she is causing the pain herself. Now, she prefers to cope in her own way.
Victor says she has Morgellons disease, a poorly understood condition often described as a skin disorder characterized by open sores filled with multi-colored fibers that grow through the skin and cause an itching sensation.
Much of the medical community doesn’t recognize Morgellons as a medical disorder, however, but as a mental delusion that often afflicts people with some history of depression.
And although many physicians won’t treat signs of Morgellons described by patients —typically, fibers that physicians say are nothing more than hair or cotton—they will treat the patient’s symptoms, such as itching and open wounds, said Dr. Jon Grant, a psychiatry and behavioral neuroscience professor at the University of Chicago.
The scars that cover Victor’s face and body are caused by these sporadically erupting lesions that can take weeks to heal. The lesions contain red, blue, black and white hair-like fibers that she manually removes from her skin, Victor said.
“Honestly there’s a lot of self surgery,” she said, adding the condition also causes fatigue and brain fog.
Victor said she believes she contracted Morgellons after being bitten by sand fleas in Florida in 2000, and now her hair follicles are overproducing collagen and keratin, forming fibers and debris that’s “almost like little pieces of fingernails.”
Victor and some researchers believe Morgellons is caused by a spirochetal bacteria similar to Lyme Disease, but much of the medical community’s skepticism is largely buoyed by a Center for Disease Control study that ruled out any links to infectious causes.
The study examined 115 patients who reported they had fibers protruding from their skin. The researchers concluded there was no underlying medical condition or infectious source of the fibers and that most of them were compatible with cotton fibers from clothing.
Instead, many physicians believe the lesions are self-inflicted by obsessive scratching, but that’s not to say patients don’t have a reason to scratch, Grant said.
“Even if it is delusional, that doesn’t mean it doesn’t have a physical trigger to it. It may not be either or, it may have a bit of basis in both,” Grant said.
Victor admits that before she found information about Morgellons on the Internet, she spent some time wondering if what she was feeling was real.
“I had many moments where I was questioning my sanity because I was like, ‘Am I crazy? Is this actually happening? Am I sitting here making this up?’” Victor said.
When she found a community of people with Morgellons online, however, she felt more validated, Victor said.
“There’s just too many of us. It can’t be delusional,” she said.
Dr. Christopher Shea, chief of dermatology at University of Chicago Medicine, said it’s more a matter of a misinterpreting the symptoms.
Shea said he has no doubt the patients are itching, but says the body’s central nervous system is making a mistake in interpreting what the itching means, sort of like an optical illusion for the sense of touch.
“What they’re saying is true, but the explanation that it is a disease called Morgellons holds no water,” Shea said.
Morgellons gained national attention in late March when singer/songwriter Joni Mitchell was found unconscious in her home. Although the cause of her illness is still undetermined, Mitchell says she also has Morgellons. Mitchell is still in the hospital but is recovering slowly, according to multiple media sources.
The term Morgellons is relatively new, dating to 2001 when a Pennsylvania mother and biologist Mary Leitao said her son developed sores under his lips and, after examining them, discovered multi-colored fibers inside the sores.
But the set of symptoms is not new, Grant said. In fact, it’s a centuries-old condition known not as Morgellons but as delusional parasitosis, he said, where people believe their skin is infected with parasites.
Because the subjective symptoms are real, people with Morgellons often seek the care of a dermatologist first, but the relationship is easily strained, Shea said.
Victor, who says she first started seeing signs and symptoms in 2000, went to dermatologists for years to try to find solutions, even bringing the doctors samples of the debris and fibers she pulled from her skin, but the doctors were quick to dismiss her and never tested the materials, she said.
One dermatologist told her, “You’re a pretty girl, you shouldn’t be doing this to yourself,” Victor recalls.
Even though Shea believes the people who say they have Morgellons are causing the open sores themselves due to scratching, he says it’s dangerous to dismiss a patient without examination, testing and hearing them out because mistakes are possible.
It’s also important to take the complaints seriously because the person’s stress is genuine, Grant said. But instead of taking the fibers seriously, practitioners should treat the mentality behind the irrational thoughts, he advises.
“You look at the evidence, which is no parasites, and ask, ‘Is it possible?’” Grant said. “You work on alternate possibilities for feeling or seeing these symptoms, not to say it’s silly.”
Shea calls it forming a “therapeutic alliance” with the patients to let them know the practitioner takes their concerns seriously and wants to help them, but he admits it’s a difficult alliance to achieve.
“It’s very difficult for the doctor to establish a therapeutic relationship with patients where they trust the doctor to do the right thing because these people are not crazy. They don’t have a psychosis. They just have an obsessional delusion about this one thing. They’re extremely challenging patients to treat,” Shea said.
On the other hand, it’s challenging to keep being told that you are imagining what you’re experiencing, Victor said.
“It’s infuriating, especially when it’s the medical community because you want to believe they’re here to help you. Yeah, it’s hard,” she said.
Shea said he has treated patients with these symptoms with psychiatric medication, and they have improved within days, but most often they refuse to take it.
Currently Victor says she does not seek any treatment from medical doctors, although she claims a concentrated enzyme formula she bought online has helped reduce the frequency of skin eruptions and intensity of itching.
And although even some of her friends are hesitant to believe Morgellons is a bacterial disease, she doesn’t blame them for having doubts.
“I know how bizarre it looks, and I know how weird it is to people. Most people want to believe that all doctors are good and know what they’re doing…It’s not their fault to be naive to think if the doctor says you don’t have it and the CDC says it’s not real, then it’s not real,” Victor said.
And although Shea believes Morgellons is more mental than physical, he understands its complexity being at the intersection of psychology and physiology.
New research could always uncover a bacterial cause for the symptoms, Shea said, and the medical community is open to that despite what many Morgellons patients think.
“The medical profession is constantly finding new diseases and bacteria and new entities,” Shea said. “Thirty-five years ago it was AIDS. So even though the medical profession is conservative, we always advance in scientific ways. We’re always accepting there’s new diseases out there.”