Morgellons

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a 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).

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.^[1] A majority of health professionals, including most dermatologists, regard Morgellons as a manifestation of other known medical conditions, including delusional parasitosis.^[2][3] According to the Mayo Clinic, health professionals are divided in their attitudes about Morgellons: some believe it is a specific condition and expect it to be confirmed by research in the future; some believe it is not a separate condition, rather its symptoms result from other conditions, often psychological; and some don't acknowledge Morgellons disease at all or reserve judgment until more is known about the condition.^[4] CDC has begun an epidemiologic investigation of the "Unexplained Dermopathy" (aka "Morgellons").^[5]

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History

In 2001, biologist Mary Leitao's 2-year-old son developed sores under his lip and began to complain of "bugs."^[6] Leitao examined the sores and discovered red, blue, black and white "bundles of fibers." She took her son to see at least eight different doctors who were unable to find any disease, allergy, or other explanation for the symptoms, but her son developed more sores, and more fibers continued to poke out of them.^[7][8] 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 he 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."^[7][9] There is no suggestion that the two are linked.

Leitao founded the Morgellons Research Foundation (MRF) in 2002. The MRF states on its website that its purpose is to raise awareness and funding for research into the condition, described by the organization as "a newly emerging infectious disease".^[10] 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.^[7] The MRF has now received claimed reports of Morgellons from all 50 US states and 15 nations, including Canada, the UK, Australia, and the Netherlands, and states that they have been contacted by over 10,000 families.^[10]

In May 2006 there was media coverage in Southern California,^[11] leading Los Angeles County Department of Health services to issue 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".^[12] In June and July 2006 there were segments on CNN^[13], ABC's Good Morning America^[14], and NBC's The Today Show. In August 2006 a segment of the ABC show Medical Mysteries^[8] was devoted to the subject.

The first journal article to discuss Morgellons was co-authored by V. R. Savely, M. M. Leitao, and R. B. Stricker, members of the MRF, and was published July, 2006 by the American Journal of Clinical Dermatology.^[15] An article in the San Francisco Chronicle reported, "There have been no clinical studies" (of Morgellons disease).^[16] A New Scientist article in September 2007 also covered the controversy noting that it extends to Europe and Australia.^[17]

CDC investigation

A Centers for Disease Control and Prevention (CDC) task force first met in June 2006.^[18] As of August, 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.^[19] In July of 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."^[20] In May, 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz "Do you have any idea what the fibers are?" 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."

In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka "Morgellons")", stating, "CDC is working with public health and other medical professionals to identify potential sites for the epidemiologic investigation. CDC also is working with task force members to develop a scientific protocol, including an initial screening case definition for the epidemiologic investigation."^[1] On July 31, 2007, the CDC issued a formal Request for Quotations for an epidemiologic investigation of Morgellons, with a view to establishing whether it is in fact a distinct condition. The CDC plans to identify a database of potential cases (study cohort) by November 30, 2007.^[21]

On November 1, 2007, the CDC updated their website with information about the 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."^[5] They state that 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. A description of the geographic distribution of the illness and estimated rates of illness in the community will be developed. 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.^[5]

Symptoms and diagnosis

Morgellons is currently not recognised as a unique disorder and 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:^[15][22]

• Disturbing sensations of insect-like crawling, stinging or biting on or under the skin (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 that Morgellons patients also exhibit laboratory findings including increased levels of inflammatory cytokines, increased insulin, and antibodies to three bacterial pathogens.^[23] Many Morgellons patients have symptoms that are also consistent with Chronic Fatigue Syndrome, depression, obsessive-compulsive disorder, and attention deficit disorder.^[24] 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 foot (foot drop), and a sagging mouth when speaking^[7]; the OSU Center has issued a list of symptoms similar to that of the MRF.[1]

The Morgellons Research Foundation has adopted a draft Case Definition developed by their Medical Advisory Board that is intended to be refined as new information is available.^[25]

The 2007 Atlas of Human Parasitology states:

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.^[26]

Proposed causes and pathophysiology

Delusional parasitosis

A majority of dermatologists view Morgellons as a new name for an old condition, Delusional parasitosis.^[27] 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.^[3] Patients with delusional parasitosis often present at the doctor's office with what MDs term the "matchbox sign"^[28] -- a medical sign characterized by the patient making collections of fibers and other foreign objects supposedly retrieved from the skin.^[3] Delusional parasitosis, with symptoms that have "extraordinary similarities" to Morgellons, has been described in the medical literature for over 75 years.^[29] 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.^[7]

Some cases of delusional parasitosis may have organic causes. For example, formication, the sensation that bugs are crawling under ones' skin, can be caused by allergies, diabetic neuropathy, menopause, skin cancer, or herpes zoster. 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.^[30] The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.

Advocates from the MRF counter that non-healing Morgellons lesions have been found on infants' bodies in locations that the infants can not themselves reach to scratch.^[23] The symptoms of Morgellons are broader than those reported for delusional parasitosis, including chronic fatigue and muscle pain and cognitive disfunction. In a letter to the MRF dated June 11, 2003, the California Department of Health and Human Services stated that, "After reviewing your website to gain some information about the patients…the patients appear to have a constellation of symptoms that do not fit any currently definable disease, infectious or otherwise."^[31]

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.^[2][29]

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.^[2] Wymore sent samples of fibers supplied by Morgellons patients to the Police Crime Lab in Tulsa, Oklahoma for analysis. After checking the fibers against known fibers in the FBI's national 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."^[8]

Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital and part of the MRF research team at OSU, reported 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."^[7]

Dermatologists say any fibers are from clothing embedded in self-imposed sores, and the fibers patients bring in bags are textile in nature.^{[7] [32]}

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),^[33] 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.^[15] Dr. Harvey has also stated there is serological evidence of bacterial pathogens in Morgellons patients.^[23] The underlying data for these claims have not been published and the findings have not been independently confirmed.

Dr. Stricker, along with Dr. Citovsky, MRF board member from the State University of New York at Stony Brook and an expert on plant pathogens, reported in January, 2007, that Morgellons skin fibers appear to contain cellulose. Five skin samples of Morgellons patients contained evidence of DNA from Agrobacterium, a plant-infecting organism which is known to produce cellulose fibers at infection sites within plant host tissues.^[34] Agrobacterium can 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.^[35]

According to the Morgellons Research Foundation website, MRF board member, Dr. Ahmed Kilani CEO of Clongen Laboratories, and a microbiologist with a Ph.D. from Stanford University Medical School, observed structures from a number of Morgellons patients microscopically, along with their clinical profiles. He believes this organism is not a bacteria, and hypothesized this organism "is a more complex fungus, algae or a novel parasite." The fibers resemble "aerial hyphae observed in many fungal species". The webpage also states, "The information available today is limited and does not provide an answer to what the causative agent of Morgellons could be."^[36]

Environmental toxins

Richard Fagerlund, an entomologist who has a column titled "Ask the Bugman" in the San Francisco Chronicle, 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 theorizes only a small percentage of cases are delusional parasitosis, while the rest may be caused by something else, such as pollutants, especially pesticides.^[37]

Treatment

Treatment for Delusional Parasitosis

Many dermatologist 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.^[38][39] 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.^[40] However, pimozide requires frequent electrocardiographic monitoring.^[39] Currently, atypical antipsychotics such as olanzapine or risperidone are used as first line treatment.^[39] Antipsychotics are effective at treating delusional parasitosis at doses as low as one-fifth to one-tenth the dose typically prescribed for schizophrenia.^[39] 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.^[41]

Treatment for infectious disease

People who say that they have Morgellons will frequently reject the diagnosis of delusional parasitosis^[42] and, "report that their symptoms are not taken seriously."^[15] There are medical practitioners that hypothesize Morgellons is an infectious process, including several associated with the MRF, who will listen to patient's symptoms, examine them, order laboratory tests, and treat Morgellons symptoms accordingly, including the use of antibiotics, antifungals, antiparasitic medications, herbal supplements, and light therapy.^{[43][16][44][42][6][17][45]} Physicians associated with the Morgellons Research Foundation have reported that some Morgellons patients who test positive for Lyme disease obtain symptom relief using aggressive, long-term antibiotic treatment for chronic Lyme disease. However, if the treatment is discontinued the symptoms return.^[23][15][24]

Self-treatment

Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Such treatments may include vitamins, herbs, epsom salt baths, vinegar, antifungal soaps and shampoos, and natural oils [2]. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for de-worming horses, and industrial insecticides.^[19] There is no proof that any of these treatments are effective.

See also

• Medically unexplained physical symptoms

References