Morgellons

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by Mary Leitao to a proposed infectious condition characterized by a range of cutaneous (skin) symptoms including crawling, biting, and stinging sensations; finding fibers on or under the skin; and persistent skin lesions (e.g., rashes or sores). Current scientific consensus holds that Morgellons is not a new disorder and is instead a new and misleading name for known illnesses. Most doctors, including dermatologists and psychiatrists, regard Morgellons as a manifestation of known medical conditions, including delusional parasitosis, although some health professionals say that an infectious cause could one day be found. Illnesses such as delusional parasitosis can be serious and debilitating, but tested and effective treatments exist.

Despite the lack of evidence that Morgellons is a novel or distinct condition and the absence of any agreed set of diagnostic symptoms, the Morgellons Research Foundation and self-diagnosed Morgellons patients have successfully lobbied members of Congress and the U.S. government's Centers for Disease Control and Prevention (CDC) to investigate the proposed condition. The CDC states that while it is not known at present whether the condition represents a new disease entity, or whether persons who identify themselves as having Morgellons have a common cause for their symptoms, share common risk factors, or are contagious, it has begun an epidemiological investigation of the "Unexplained Dermopathy (aka 'Morgellons')."

History

Mary Leitao and the MRF

In 2001, according to Mary Leitao, her then two-year-old son developed sores under his lip and began to complain of "bugs." Leitao, who graduated with a BS in Biology, and worked for five years at Boston hospitals as an electron microscopist and a immunohistochemist before becoming a stay-at-home mother, says she examined the sores and discovered red, blue, black, and white fibers. She states that she took her son to see at least eight different doctors who were unable to find any disease, allergy, or anything unusual about her son's described symptoms. Dr. Fred Heldrich, a Johns Hopkins pediatrician with a reputation "for solving mystery cases," examined Leitao's son. Heldrich found nothing abnormal about the boy's skin, wrote to the referring physician that "Leitao would benefit from a psychiatric evaluation and support," and registered his worry about Leitao's "use" of her son. Psychology Today reports that Leitao last consulted an unnamed Johns Hopkins infectious disease specialist who after reviewing her son's records refused to see him, suggesting Leitao herself might suffer from "Munchausen's by proxy, a psychiatric syndrome in which a parent pretends a child is sick or makes him sick to get attention from the medical system." This opinion of a potential psychological disorder, according to Leitao, was shared by several medical professionals she sought out:

"(Leitao) said she long ago grew accustomed to being doubted by doctors whenever she sought help for her son, who is now 7 and still suffering from recurring lesions. 'They suggested that maybe I was neurotic,' Leitao said, 'They said they were not interested in seeing him because I had Munchausen Syndrome by Proxy.'"

Leitao says that her son developed more sores, and more fibers continued to poke out of them. She and her husband, Edward Leitao, an internist with South Allegheny Internal Medicine in Pennsylvania, felt their son suffered from "something unknown." She chose the name Morgellons disease (with a hard g) from a description of an illness in the monograph A Letter to a Friend by Sir Thomas Browne, in 1690, wherein Browne describes several medical conditions in his experience, including "that endemial distemper of children in Languedoc, called the morgellons, wherein they critically break out with harsh hairs on their backs." There is no suggestion that the symptoms described by Browne are linked to the putative modern cases.

Leitao founded the Morgellons Research Foundation (MRF) in 2002 (informally) and as an official non-profit in 2004. The MRF states on its website that its purpose is to raise awareness and funding for research into the proposed condition, described by the organization as a "poorly understood illness, which can be disfiguring and disabling." Leitao stated that she initially hoped to receive information from scientists or physicians who might understand the problem, but instead, thousands of others contacted her describing their sores and fibers, as well as neurological symptoms, fatigue, muscle and joint pain, and other symptoms. The MRF claims to have received self-identified reports of Morgellons from all 50 US states and 15 other countries, including Canada, the UK, Australia, and the Netherlands, and states that they have been contacted by over 12,000 families.

Media coverage

In May 2006, a CBS news segment on Morgellons aired in Southern California, Here they renamed Morgellons to Jenkins Disease due to the ustable physciatric state of Jenkins who was suffering of this illness. The same day the Los Angeles County Department of Health services issued a statement saying, "No credible medical or public health association has verified the existence or diagnosis of 'Morgellons Disease'," and "at this time there is no reason for individuals to panic over unsubstantiated reports of this disease." In June and July 2006 there were segments on CNN, ABC's Good Morning America, and NBC's The Today Show. In August 2006, a segment of the ABC show Medical Mysteries was devoted to the subject. The disease was featured on ABC's Nightline on January 16, 2008, and as the cover story of the January 20, 2008 issue of the Washington Post Magazine.

The first article to propose Morgellons as a new disease in a scientific journal was a review article co-authored by V. R. Savely, M. M. Leitao, and R. B. Stricker, members of the MRF. It was published in July, 2006 by the American Journal of Clinical Dermatology. An article in the San Francisco Chronicle reported, "There have been no clinical studies" (of Morgellons disease). A New Scientist article in September 2007 also covered the mystery noting that people are reporting similar symptoms in Europe and Australia.

CDC investigation

A Centers for Disease Control and Prevention (CDC) task force first met in June 2006. In July 2006, Dan Rutz, MPH, a communications specialist for the CDC, said, "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it." By August 2006, the task force consisted of 12 people, including two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic diseases. In May 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz if he had any information about the nature of the fibers. At that time Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is [an infectious process], but our mind is open to everything, including that remote possibility." Since then, the CDC has launched a funded study (see below) that will include further examination of fibers taken from Morgellons lesions by the CDC.

In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka 'Morgellons')". By November 2007, the CDC had announced an investigation process, stating that, "The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors." Kaiser Permanente in Northern California was chosen to assist with investigation, which will begin when the scientific protocols and review board structure have been prepared and approved. Investigators will report on the geographic distribution of the illness and estimate rates of illness in affected communities. The investigation will involve skin biopsies from affected patients and characterization of foreign material such as fibers or threads obtained from patients to determine their potential source. In January 2008 it was reported that CDC was enlisting the aid of the U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology "to conduct 'immediate' and 'rigorous' research."

On January 2008 the CDC, in conjunction with Kaiser Permanente's Northern California Division of Research, launched a funded study of the unexplained skin condition known as Morgellons. A press conference was held on Jan 16, 2008 with Dr. Michele Pearson, principal investigator for the CDC, and Dr. Joe Selby, Director of Kaiser Permanente's Northern California Division of Research. During the press conference, Dr. Pearson stated: "What I can tell you is real is the suffering that these patients are experiencing. I cannot characterize this as a syndrome, as disease. I can tell you it's an unexplained illness." Clinical examinations for the study will be done in Oakland, California.

The CDC investigation follows a mailing campaign coordinated by the Morgellons Research Foundation in which "self-described sufferers clicked on the foundation Web site and sent thousands of form letters to members of Congress."

Symptoms and diagnosis

Morgellons is currently not recognized as a unique disorder, so there is currently no list of symptoms or differential diagnosis for Morgellons that is generally accepted by the medical community. Patients usually self-diagnose based on media reports and information published by the Morgellons Research Foundation. Symptoms usually include:

• Disturbing sensations of insect-like crawling, stinging or biting on or under the skin (i.e. formication)
• Skin rashes and lesions that do not heal
• Fiber-like filaments, granules or crystals that appear on or under the skin or that can be extracted from lesions
• Joint, muscle and connective tissue pain, including fibromyalgia
• Debilitating fatigue
• Cognitive dysfunction, including difficulty with concentration, short-term memory, and attention

Dr. William T. Harvey, director of the MRF medical advisory board, states in a 2007 letter to the editor of the Journal of the American Academy of Dermatology that Morgellons patients exhibit laboratory findings including increased levels of inflammatory cytokines, increased insulin, and antibodies to three bacterial pathogens, but did not provide evidence for these claims. Many Morgellons patients have symptoms that are also consistent with chronic fatigue syndrome, depression, obsessive-compulsive disorder, and attention deficit disorder. Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital, while working with the OSU-CHS Center for the Investigation of Morgellons Disease, noted all her Morgellons patients looked ill with neurological symptoms, which included confusion, difficulty walking and controlling their feet (foot drop), and a sagging mouth when speaking. The OSU Center has issued a list of symptoms similar to that of the MRF.

The Morgellons Research Foundation has adopted a case definition of Morgellons symptoms that has been referenced in other articles.

The 2007 Atlas of Human Parasitology covers the proposed condition in its section on "Pseudoparasites and Artifacts":

Many dermatologists refute the suggestion that this is an actual disease but instead indicate that many of these patients have psychological problems or other common skin disorders. Given the large numbers of individuals who feel that they have this affliction, it will be most helpful over the coming years to have a valid scientific assessment of Morgellons diesease and its possible etiology (or etiologies). One of the chief criticisms by many patients has been that they feel the medical community and other scientists consulted have not been open to the idea that there is possibly an as yet undescribed infectious or physiologic causation for the disease. However it is certainly true that in fact many expert parasitologists, medical entomologists and other microbiologists have in fact carefully examined fibers and other materials expressed or extracted from such patients and found that biological organisms are not present. Although an apparent association of the condition with the presence of Lyme disease has been reported (Savely et al, 2006, Am J Clin Dermatol, 7:1–6), further research will be needed to help resolve the validity of Morgellons disease. Until then, whether Morgellons disease is another name for delusional parasitosis or a real disease entity with a biologic or physiologic basis will remain up in the air.

Proposed causes and pathophysiology

Delusional parasitosis and other neuropsychological disorders

Many dermatologists, psychiatrists, and other medical professionals view Morgellons as a new name for an old condition, delusional parasitosis, also known as "delusions of parasitosis" (DP or DOP) and Ekbom's Syndrome: Morgellons is "a pattern of dermatologic symptoms very similar, if not identical, to those of delusions of parasitosis," and "the vast majority" (elsewhere, 95%) of Morgellons patients are diagnosed with delusional parasitosis or another psychosomatic illness. In delusional parasitosis, patients hold a delusional belief that they are infested with parasites. They may experience formication, the sensation that insects are crawling under the skin. Individuals suffering from this condition may develop elaborate rituals of inspection and cleansing to locate and remove parasites and fibers, resulting in a form of self-mutilation; they injure themselves in attempts to be rid of the "parasites" by picking at the skin, causing lesions, and then pick at the lesions, preventing them from healing. Patients with delusional parasitosis often present at the doctor's office with what MDs term the "matchbox sign" -- a medical sign characterized by the patient making collections of fibers and other foreign objects supposedly retrieved from the skin -- and, because of "unshakeable delusional ideation", strongly reject diagnoses that do not involve parasites. A significant minority of DP cases occur in groups of two, three, or more individuals in close proximity, even families, known by the French terms folie à deux, folie à trois, and folie à famille. Delusional parasitosis, with symptoms that have "extraordinary similarities" to Morgellons, has been described in the medical literature for over 75 years. Dr. Noah Craft, a dermatologist at the Harbor-UCLA Medical Center, Torrance, CA, has seen a handful of Morgellons patients and biopsied their skin lesions, but found only normal skin and inflammation, as one would find in a bump that has been picked at.

Some cases of delusional parasitosis have organic causes other than those associated with neurological/psychological conditions of unknown etiology. For example, formication, the sensation that bugs are crawling under ones' skin, can be caused by allergies, diabetic neuropathy, menopause, skin cancer, dermodex mites, or herpes zoster. Both dementia and mental retardation have been reported in association with DOP. Symptoms associated with delusional parasitosis, including urticaria (hives), paresthesia (unexplained tingling sensations in the skin), and pruritis (itching), are common side-effects of many prescription drugs or drug abuse. The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.

The MRF's William Harvey has written that non-healing "Morgellons lesions" have been found on infants' bodies in locations that the infants cannot themselves reach to scratch. In his letter to the editor, he does not provide evidence to support this claim.

Some cases of Morgellons have been diagnosed as "cutaneous dysaesthesia".

Role of the internet

In a 2006 report to the Journal of the American Academy of Dermatology, Waddell and Burke cite the influence of the internet on their self-diagnosed Morgellons patients: "physicians are becoming more and more challenged by the many persons who attempt self-diagnosis on-line. In many cases, these attempts are well-intentioned, yet wrong, and a patient's belief in some of these oftentimes unscientific sites online may preclude their trust in the evidence-based approaches and treatment recommendations of their physician." Dermatologist Caroline Koblenzer specifically faults the MRF website for misleading patients, "Clearly, as more and more of our patients discover this site (MRF), there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects."

The LA Times, in an article on Morgellons, notes that "(t)he recent upsurge in symptoms can be traced directly to the Internet, following the naming of the disease by Mary Leitao, a Pennsylvania mother." Robert Bartholomew, a sociologist who has studied the Morgellons phenomenon, states that the "World Wide Web has become the incubator for mass delusion and it (Morgellons) seems to be a socially transmitted disease over the Internet." According to this hypothesis, patients with delusions of parasitosis and other psychological disorders become convinced they have "Morgellons" after reading internet accounts of others with similar symptoms. A 2005 Popular Mechanics article stated that Morgellons symptoms are well-known and characterized in the context of other disorders, and that "widespread reports of the strange fibers date back" only a few years to when the MRF first described them on the internet.

The Dallas Observer writes that Morgellons may be spread via the Internet and mass media, and "(i)f this is the case, then Morgellons is one in a long line of weird diseases that have swept through populations, only to disappear without a trace once public concern subsides." The article draws parallels to several mass media-spread mass delusions.

Known skin conditions

It has been hypothesized that some cases of (self-diagnosed) Morgellons disease are actually other recognized skin disorders, including allergic dermatitis, contact dermatitis, and the parasite scabies.

Theories about the fibers

Randy Wymore, a former research director of the MRF and presently Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease, claims that Morgellons patients have masses of dark fibers visible at 60x magnification under the unbroken skin, while unaffected individuals do not. Wymore sent samples of fibers supplied by Morgellons patients to the Police Crime Lab in Tulsa, Oklahoma for analysis. A forensic scientist at the Tulsa Police Crime Lab in Oklahoma searched the FBI's national database, but the Morgellons sample did not match any known fiber in the database. Lab director Mark Boese said the fibers were "consistent with something that the body may be producing," adding, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."

Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital and part of the MRF research team at OSU, claimed that she has examined many patients' skin via a dermatoscope and performed biopsies on both lesions and apparently healthy skin, and that "she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin."

Dermatologists say any fibers are from clothing embedded in self-imposed sores, and the fibers patients bring in bags are textile in nature.

Bacterial hypothesis

Three members of the Morgellons Research Foundation, including Raphael Stricker, Director and former President of the International Lyme and Associated Diseases Society (ILADS), and Ginger Savely, also an ILADS member, authored an article about Morgellons published by the American Journal of Clinical Dermatology in early 2006. The authors wrote that "Morgellons disease may be linked to an undefined infectious process," and reported that many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease, and treatment with anti-bacterials appropriate for Lyme disease leads to remission of Morgellons symptoms in most patients. Dr. Harvey, another member of ILADS, has also stated there is serological evidence of bacterial pathogens in Morgellons patients, but did not provide any such evidence.

Stricker, along with Citovsky, MRF board member from the State University of New York at Stony Brook and a researcher on plant pathogens, reported in January, 2007, that Morgellons skin fibers appear to contain cellulose, and PCR screening of samples from five Morgellons patients produced evidence of DNA from Agrobacterium, a plant-infecting organism known to induce cellulose fibers at infected sites within plant tissues in all five while control samples from healthy subjects produced no evidence of Agrobacterium DNA. They stated that if confirmed, Agrobacterium could be the first instance of plant infecting bacteria involvement in human disease. However, Agrobacterium is already known to be responsible for opportunistic infections in humans with weakened immune systems, but has not been shown to be a primary pathogen in otherwise healthy individuals.

Environmental toxins

Richard Fagerlund, an entomologist who has a column titled "Ask the Bugman" in the San Francisco Chronicle and Albuquerque Journal, stated that he takes Morgellons disease seriously, and he receives letters from people with Morgellons symptoms daily. Twenty years ago, he got three to four letters like this a year. He believes the condition is reaching epidemic proportions and speculates only a small percentage of cases are delusional parasitosis, while the rest may be caused by something else, such as pollutants, especially pesticides.

Conspiracy theories

Some self-identified Morgellons sufferers and various conspiracy theorists provide their own origin hypotheses: "Perhaps it is caused by chemical spills or bio-terror or even alien abductions. On a radio program called Coast to Coast--popular among people who believe in UFOs and ghosts--a New Mexico doctor reports that a former CIA agent told him the disease was caused by the French. A botched government experiment, he says, contaminated the water. All Evian drinkers are at risk."

Treatment

Treatment for delusional parasitosis

Many dermatologists treat Morgellons as delusional parasitosis. After a thorough medical examination to rule out known organic causes for the symptoms, delusional parasitosis patients are typically prescribed one of several typical antipsychotic drugs. In the past, pimozide was the drug of choice; in addition to antipsychotic activity, it also has antipruritic activity, meaning it inhibits the sensation of itching. However, pimozide requires frequent electrocardiographic monitoring. Currently, atypical antipsychotics such as olanzapine or risperidone are used as first line treatment. Antipsychotics are effective at treating delusional parasitosis at doses as low as one-fifth to one-tenth the dose typically prescribed for schizophrenia. It is common for patients who believe they have Morgellons to reject a physician's diagnosis of delusional parasitosis. It has been suggested that the term Morgellons should be adopted by dermatologists to enhance their rapport with their patients, allowing them to overcome this resistance.

A Popular Mechanics article described a dermatologist who would not allow the use of his name, citing "concern for his safety." He said he has "diagnosed 50 or so Morgellons patients" with a disorder that can result in the sensation of insects, and "typically puts a cast over the lesions to prevent further irritation and after four weeks removes it." According to the doctor, the patients' lesions heal under the cast.

Treatment for infectious disease

People who say they have Morgellons frequently reject the diagnosis of delusional parasitosis, "report that their symptoms are not taken seriously," and refuse psychotropic medicine. Hypothesizing that Morgellons is the result of an infectious process, some medical practitioners associated with the MRF recommend the use of antibiotics, antifungals, antiparasitic medications, herbal supplements, and light therapy. Randy Wymore, a former MRF director, has claimed on his website that some Morgellons patients who test positive for Lyme disease obtain symptom relief using aggressive, long-term antibiotic treatment similar to what is used by some doctors to treat "chronic" Lyme disease, another proposed but medically disputed condition. Virginia Savely, a nurse with the MRF and member of the International Lyme and Associated Diseases Society (ILADS), claims to have similar unpublished results. The antibiotic treatment is not curative, because when it is discontinued, the symptoms return. Dermatologists say that these positive effects of antibiotic use for some patients are likely the result of a placebo effect or anti-inflammatory actions of the drugs. They advise against prescribing antibiotics, which may reinforce the patients' delusions instead of addressing what these doctors consider the core problem: delusional parasitosis. In addition, long-term antibiotic use can have serious side effects.

Self-treatment

Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for de-worming horses, and industrial insecticides.

See also

• Conspiracy theory
• Delusional parasitosis
• Munchausen Syndrome
• Psychosis