Lynn Sebold, BSN, RN, PCCN, age 51, was once an ICU nurse. She's no stranger to clinical challenges. But she still doesn't know why, four years ago, sharp granules started working their way out of the skin on her neck. And she'd very much like to know the source of the painful white fibers she's discovered more than once since then on her back and eyebrows, and precisely how, for a miserable several months last year, her back could have become a "giant wound, oozing, with black granules coming out of it."
Sebold has had a wide range of mysterious symptoms since 1989 and believes that they might be related. It started with night sweats, acne, and fatigue. (When she was in her late 30s, several physicians suggested that the cause was early menopause.) These symptoms continued until 2003, when rashes appeared, along with lesions that wouldn't heal, maddening itchiness, the horrific fibers and granules, a debilitating fatigue, and difficulty concentrating.
Getting no answers from her physicians, Sebold did some Internet research. She came to the conclusion that her symptoms resembled those of a condition many have come to call Morgellons.
'Unexplained dermopathy.' So far, Morgellons is not a recognized disease with established diagnostic criteria or treatment protocols. According to the Centers for Disease Control and Prevention (CDC), those who have "unexplained dermopathy (aka 'Morgellons')" often describe symptoms such as "crawling, biting, and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin lesions." And most sufferers-like Sebold-also report a variety of nonspecific or secondary symptoms, such as "fatigue, mental confusion, short-term memory loss, joint pain, and changes in vision."
With rare exceptions, physicians and nurses have been dismissive of Sebold's self-diagnosis. One dermatologist suggested that she should take antipsychotic medication.
Some nurses and physicians say that they themselves have the condition, but many physicians assert that no such condition exists and that patients may have scabies or another common skin condition. A number of psychiatrists and dermatologists see evidence of "delusional parasitosis"-a condition identified in numerous studies since the 1930s. Delusional parasitosis is similar to "delusional disorder, somatic type," described by the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision, in which certain sufferers believe that "there's an infestation of insects on or in the skin."
The CDC investigates. In January the CDC announced that it has contracted with the Kaiser Permanente of Northern California Division of Research to undertake a descriptive epidemiologic study of recent health plan members.
Michele Pearson, MD, the study's lead investigator, has met people with Morgellons. "It's a complex condition," says Pearson. "It may be multifactorial. What we now know is through self-report or anecdotal. There's nothing systematic." But one thing is certain, says Pearson: "These people are suffering. Many are quite debilitated. Some feel it's [affected] their personal relationships. Some have incurred high medical costs for alternative therapies."
For the purposes of the investigation, the case definition will include those who have observed fibers coming from their skin and felt unusual sensations such as insects crawling beneath the skin. Some will also have experienced nonspecific symptoms such as fatigue, joint pain, chronic itching, and "brain fog." The study is projected to take 12 months and will involve the collection of exhaustive data from medical as well as mental health examinations detailing participants' symptoms and the possible causes of their condition.
It can't have hurt that at least 40 members of Congress have written to the CDC requesting action on this condition. Pearson points as well to the sheer volume of inquiries the CDC has received, about 100 per month for most of 2007, and "not just from those who are affected [horizontal ellipsis] but from providers who see them and don't know what to do and [from] public health officials."
Proliferating theories. Sebold has theories about the cause of her Morgellons: a fungus, perhaps, or genetically modified food. Or maybe it's connected to Lyme disease: back in 1989 she had the bulls-eye rash that often signals infection, and soon afterward the first night sweats appeared.
Pearson notes that the questions of what's causing Morgellons and how to treat it are "rife with speculation." Theories have proliferated, as they have with other conditions of unclear etiology and nonspecific symptoms, such as multiple chemical sensitivity and chronic fatigue syndrome. "A lot of people want to draw a straight line," says Pearson. "They want to see a causal relationship."
A cursory Internet search for "Morgellons" reveals theories of nanotechnology gone awry, an immune disorder, an infectious agent, mass psychogenic hysteria, the effects of airline contrails (known as "chem-trails"), illegal immigrants, Lyme disease, and others. Whether the Internet has brought attention to something that always existed or has given rise to a self-sustaining, self-defining phenomenon, or both, is still an unanswered question.
Advocacy for sufferers. The Morgellons Research Foundation (MRF) has 12,033 registered families on its Web site (http://www.morgellons.org), each with at least one family member who has the condition. Mary Leitao, the nonprofit group's founder and executive director, noticed fibers growing from a persistent sore near her then-two-year-old son's lower lip in 2002. She happened upon a description of a similar condition from an obscure text by the 17th-century English author Sir Thomas Browne, and she applied the name to what her son was experiencing.
When Leitao began posting about the condition on the Internet, the responses came pouring in. While she believes the MRF's letter-writing campaigns played a large role in motivating the CDC investigation, Leitao seems ambivalent about the fact that the name she assigned to this condition has gained such widespread acceptance among sufferers. "It's just a placeholder," she says, admitting that much about the condition remains unknown.
While the jury's out. In the meantime, what can nurses do when patients come to them with these symptoms? Without clear diagnostic criteria and treatment protocols, says Pearson, nurses and physicians "should be looking for infectious etiologies, chronic illnesses such as diabetes or renal insufficiency that may manifest themselves" with similar nonspecific symptoms.
Is the condition communicable? So far, says Pearson, there's "no evidence." Is it infectious? There's "no strong evidence" for that either. But Leitao might question that cautious assertion: as this article was going to press, she told AJN that she'd just heard from two wound care nurses in Texas who had developed a "sudden onset" of Morgellons symptoms a little more than a week after performing wound care on a patient who said she had the condition. (For more on this case, go to http://links.lww.com/A426.)
Sebold has tried soaking in a vinegar-and-water solution and applying raw honey to affected limbs and wrapping them in plastic wrap, among other treatments she's found through her research or had suggested to her by physicians and others. Most did not help. (The one thing that alleviated her itching, she admits ruefully, was animal flea shampoo.)
Herself a member of the board of nursing at the MRF, Sebold has this advice for nurses when patients come to them and say they have Morgellons: "Approach patients with an open mind. Treat at least the symptoms; build up the immune system [horizontal ellipsis] at least until you get the answers."
While "there will be individuals with psychological problems, others are being shooed away" by the medical system. Over time, she says, they come to feel abandoned and increasingly desperate for answers-or, as Sebold puts it, "like a leper."
Jacob Molyneux, senior editor