A mysterious skin problem is erupting all over the country and it’s caught the CDC’s attention. It’s been called Morgellons disease, and health officials don’t know what to make of it.

More than 11,000 people in the U.S. and elsewhere have reported the same symptoms: itchy, severe skin sores with strange fibers “growing” out of them. There are creepy-crawly sensations, like insects crawling beneath their skin. Fatigue, difficulty concentrating, memory loss, and visual disturbances have also been reported.

The CDC is about to launch a study investigating this illness and has contracted with Kaiser Permanente of Northern California as its location.

In California, both the San Francisco Bay area and Los Angeles are considered “hot spots,” with a large concentration of self-reported cases of the symptoms, reports Michele Pearson, the CDC study’s principal investigator.

Initially, Texas and Florida also had large numbers of “self-reports,” says Pearson, but now they’re coming from all 50 states as well as Canada, the United Kingdom, and Australia.

“Exactly what this means, we don’t really know,” Pearson tells Todo en Medicamentos. “We hope to look at this critically. Are these true clusters of illness or are there more cases because these are large population centers?”

Patients Are Desperate

“There’s a lot of speculation about this,” Pearson says. “We don’t know if this is a new problem or newly recognized problem. We don’t know if it’s infectious. We don’t have any good evidence that it’s communicable. However, there are good reports of clustering within families and within households. We are going to look at true clustering in regions and in households.”

What she does know, Pearson says, is that “patients are fairly desperate. They are suffering. Many have felt so alienated from the traditional care system that they are seeking some alternative therapies.”

Many doctors are similarly frustrated, says Pearson. “They don’t feel they have anything to offer patients. Patients feel they are fairly quickly dismissed as having a delusional disorder or psychiatric disorder as a primary cause for their symptoms. When that occurs, they tend to drop out of traditional care systems and look at alternative treatments.”

“It’s clear that this is a complex disorder and is likely due to multiple factors,” she explains. “Some common conditions may be causing the symptoms diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation.”

Kaiser Permanante was chosen for the study because of its electronic search system, Pearson says. “We can query their database for certain diagnoses and symptoms, complaints. We can try to identify people who came in with fibers, threads, and other symptoms. It’s a good way to identify patients who are potentially eligible.”

Case Study of Morgellons

Mary Leitao, a biologist in Pittsburgh, was spreading cream on her 2-year-old son’s arm when she noticed something very unusual. “I saw this material, this fibrous material, come out of his skin. … It was balls of fiber, like they were all bound together. When I applied the cream, they came out of his skin.”

He soon began itching — a lot — and developed “pretty severe skin lesions,” Leitao tells Todo en Medicamentos. “He would wake up with bloody bed sheets and was very, very uncomfortable. It was frightening.”

Most frightening, and frustrating, was the dearth of information on this condition. “I’m a scientist. I did literature searches, and nothing could be found.” But online she quickly met people with the same condition.

It was Leitao who called the condition “Morgellons” in 2002, naming it after a seemingly similar illness first described centuries ago. She then launched the Morgellons Research Foundation web site. It provides a registration service for people to report their symptoms.

Since 2002, up to 11,059 families have registered on her site, says Leitao. In November 2007, Leitao notified the CDC that 37% of those families had multiple family members with the symptoms.

Difficult Investigation

“It’s going to be a difficult investigation,” says Pearson. “We’re trying to figure out this unexplained condition for which we don’t have a blueprint. The symptoms are complex. We’ll be looking at the range of symptoms and the extent to which it overlaps with other conditions.”

Patients in the study will get comprehensive exams — a general medical exam, dermatological exam, blood tests, chest X-rays, urine samples, and skin biopsies. “They also will get a mental health exam, so we can screen for common psychiatric disorders — and for real evidence of cognitive deficits,” Pearson says.

“It’s clear that this is a complex disorder and is likely due to multiple factors,” she says. “Some common conditions may be causing the symptoms — diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation.”

As for Leitao’s son, “he’s much improved, although we’re not sure why,” she says. “We tried antibiotics, other medications. We’re not exactly sure what helped.” However, her older children have developed the skin symptoms as well, though not to the extent her youngest son had them.

“They have more fatigue, which is very, very typical for adults who develop this,” says Leitao. “The fatigue can be pretty life-altering. Their fatigue has not improved, and it’s a big concern to me.”

More information at Todo en Medicamentos.

The itchy, red, and silvery skin patches that are the hallmark of psoriasis were constant companions for Maria Anichini from the age of 6.

At times they covered almost every inch of her body, causing her to choose long sleeves and pants even in the broiling heat of summer so people wouldn’t stare.

But that all changed when Anichini, now age 20, began taking the injectable biologic agent Enbrel several years ago after entering the first large study to examine the drug’s effectiveness in children and teens with moderate to severe plaque psoriasis. The most common type of psoriasis is plaque psoriasis.

Anichini’s lesions started to clear up almost immediately, and these days the Columbia College junior is mostly free of them.

“It really is amazing,” she tells Todo en Medicametnos. “I have some flare-ups now and then, especially in the winter. But it is nothing like it was.”

Her response to the drug was not unusual.

In the newly reported study in which she took part, 57% of children and teens treated with Enbrel showed a 75% or greater improvement in skin lesions and other symptoms after 12 weeks of treatment, compared with just 11% of kids who got placebo treatments.

Three out of four Enbrel-treated patients showed less dramatic, but still significant, improvements in lesions, compared with one in four placebo-treated patients.

The study appears in the Jan. 17 issue of The New England Journal of Medicine.

“We were surprised at how good the responses were because we used pretty low doses [of Enbrel],” says Northwestern University dermatology and pediatrics professor Amy Paller, MD, who led the study, which was funded by Enbrel makers Amgen and Wyeth Pharmaceuticals.

Enbrel and Psoriasis

Approved by the FDA in the spring of 2004 for the treatment of psoriasis in adults, Enbrel blocks a key chemical messenger in the immune system linked to inflammation known as tumor necrosis factor-alpha (TNF-alpha).

It is now believed that inflammation plays a major role in a host of immune system diseases, including psoriasis.

Enbrel has been approved for the treatment of juvenile rheumatoid arthritis, but it had not been studied in children with psoriasis until now, Paller tells Todo en Medicametnos.

The study included 211 children and teens from 42 sites in the U.S. and Canada treated during the first 12 weeks with either once-weekly injections of placebo or up to 50 milligrams of Enbrel, depending on body weight.

After the initial 12 weeks of treatment, all the patients were treated with Enbrel for the following 24 weeks; then patients were again randomly assigned to treatment with either Enbrel or placebo for an additional 12 weeks to examine the effect of withdrawal.

The researchers reported that 68% of patients initially treated with Enbrel and 65% of those initially treated with placebo showed 75% improvement in lesions and other symptoms at week 36 of the trial.

Withdrawal from the drug was associated with a significant return of psoriasis lesions in 42% of patients.

“Our responses were as good as those seen in studies in adults with about half the dosage,” Paller says. “We really don’t know why that is.”

More information at Todo en Medicamentos.