https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5811176/
History of Morgellons disease: from delusion to definition
History of Morgellons disease: from delusion to definition
Marianne J Middelveen,1 Melissa C Fesler,2 and Raphael B Strickercorresponding author2
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Abstract
Morgellons disease (MD) is a skin condition characterized by the presence of multicolored filaments that lie under, are embedded in, or project from skin. Although the condition may have a longer history, disease matching the above description was first reported in the US in 2002. Since that time, the condition that we know as MD has become a polemic topic. Because individuals afflicted with the disease may have crawling or stinging sensations and sometimes believe they have an insect or parasite infestation, most medical practitioners consider MD a purely delusional disorder. Clinical studies supporting the hypothesis that MD is exclusively delusional in origin have considerable methodological flaws and often neglect the fact that mental disorders can result from underlying somatic illness. In contrast, rigorous experimental investigations show that this skin affliction results from a physiological response to the presence of an infectious agent. Recent studies from that point of view show an association between MD and spirochetal infection in humans, cattle, and dogs. These investigations have determined that the cutaneous filaments are not implanted textile fibers, but are composed of the cellular proteins keratin and collagen and result from overproduction of these filaments in response to spirochetal infection. Further studies of the genetics, pathogenesis, and treatment of MD are warranted.
Keywords: Morgellons disease, dermopathy, Lyme disease, Borrelia burgdorferi, spirochetes
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Introduction
Morgellons disease (MD) is a disfiguring and perplexing skin condition associated with spirochetal infection and tick-borne illness.1–7 This poorly understood condition has a worldwide distribution, with estimated self-reported cases numbering over 14,000 in 2009.5 Since that time, there has been an increasing number of individuals reported to be afflicted with this disorder (C Casey, Charles E Holman Morgellons Disease Foundation, personal communication, 2017). The distinguishing diagnostic feature of MD is spontaneously appearing ulcerative skin lesions that contain unusual filaments lying under, embedded in, or projecting from the skin. The characteristic filaments are microscopic, visually resembling textile fibers, and are white, black, or a more vibrant color, such as red or blue.1–7 In addition to fiber production, some patients may experience formication, described as stinging, biting, creeping and crawling sensations. The symptoms of MD are not limited to the skin. MD patients experience a variety of systemic manifestations, such as fatigue, joint pain, cardiac complications, cognitive difficulties, and neuropathy, all symptoms that are commonly reported by Lyme disease (LD) patients.1–7
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History
The name “Morgellons” (pronounced with either a hard or soft “g”) comes from a letter written in 1674 by Sir Thomas Browne, an English physician. The letter contains a brief description of a skin disease in French children:
Hairs which have most amused me have not been in the face or head, but on the back, and not in men but children, as I long ago observed in that endemial distemper of little children in Languedock, called the Morgellons, wherein they critically break out with harsh hairs on their backs, which takes off the unquiet symptoms of the disease, and delivers them from coughs and convulsions.8
Browne’s description of “the Morgellons” and other historical accounts of similar maladies date from 1544–1884 and were found in Browne’s library in 1935 by Kellett, who then summarized and discussed them.8
The accounts by Browne and others were likely referring to a heterogeneous group of skin conditions that may have differed from the skin condition that we refer to as MD today. These early accounts describe primarily childhood illnesses, many of which were associated with convulsions. There is mention of hairs, worms (with black protruding heads), or comedones that protruded from the skin, primarily on the arms, legs, and back, and at that time there was much debate as to whether these objects were animate or inanimate.8 Ettmüller, for example, provided a drawing of infesting organisms that look like various arthropods, some resembling scabies mites, while the famous Dutch microscopist Leuvenhoeck concluded that such objects were inanimate.8 In 1894, Thibierge described patients who had erroneous and unshakeable beliefs of skin infestation by parasites, and proposed the name “acarophobia”.9,10 In 1946, Wilson and Miller suggested that “acarophobia” should be replaced by the name “delusions of parasitosis” (DOP).10,11
From 1902 to 1938, case studies describing “parasitophobias” or “dermatological hypochondriasis” that resulted in delusional interpretation of skin sensations were published sporadically.12–20 However, as early as 1935, an association between spirochetal infection and DOP was documented by the French physician Vié, who reported that six of eight of the subjects in his case studies had syphilis.18 In 1938, a pivotal narrative of DOP was published by Ekbom, a series of case studies describing patients who had sensations of movement and the belief that insects were crawling on or under skin. Ekbom felt that determining the underlying cause of the formication was important, stating that “it is the underlying illness that determines the overall presentation of the beliefs” and “it is perhaps too simple that the parasitophobias should be considered as mental illness and nothing more”.20 Interestingly, like Vié, Ekbom found that spirochetal infection was present in his patient cohort, and three of Ekbom’s seven patients had documented cases of syphilis. Despite the fact that syphilis was considered rare in Sweden, Ekbom did not believe that spirochetal infection was a contributing factor.20
Ekbom reported that the skin sensations consisted mostly of itching, but also that there was a feeling that something was crawling on or under the skin, and that stabbing and biting sensations could also occur. He mentioned that in such cases, “little animal” specimens were sometimes brought in by patients to show to physicians and that such collections consisted of “little hairs, little threads, grains of sand, and skin scales”. He noted that apart from delusional ideas of infestation, no consistent mental problems were present.20 Although Ekbom could not find any arthropods, parasites, or other microscopic animals, it is important to note that he found hairs, “little threads”, and “grains of sand” in patient specimens. His description is consistent with the findings of unusual hairs, fibers, and hardened comedo-like dermatological objects that we see in MD specimens.20 Such objects will be discussed in depth later in this report.
It is possible that patients in the case studies written by other physicians and mentioned by Ekbom had syphilis or other spirochetal infections. The causative agent of syphilis was first reported in 1905 by Fritz Schaudinn and Erich Hoffmann, who used dark-field microscopy and described spiral-shaped bacteria – Spirochaeta pallida – now called Treponema pallidum.21 The first test for syphilis was developed shortly afterward in 1906 by German physician and bacteriologist August von Wassermann. The Wassermann test was a complement-fixation test that detected antibodies reactive to the syphilis spirochete. The Wassermann tests performed in the 1920s and 1930s lacked accuracy,22,23 and cases of syphilis among patients with delusional parasitosis (DP) may have gone unacknowledged as a result.
Regardless of the test accuracy for syphilis, it is possible that some of the patients described in these historical case studies may have been infected with Borrelia spp., other treponemes or Leptospira spp. B. burgdorferi (Bb) is not a new organism: the earliest known case dates back 5,300 years in the mummy dubbed Ötzi,24 and Borrelia DNA was also detected in two museum specimens of the white-footed mouse, Peromyscus leucopus, collected in 1894.25 Spirochetes resembling Borrelia have also been found in amber-fossilized ticks from 15–20 million years ago.26 Therefore, spirochetal infections associated with MD may have occurred periodically hundreds or even thousands of years ago in human history, yet have gone unrecognized and unreported.
There is a brief mention of “the Morgellons” by Emslie-Smith in 1946, where he proposes that the condition was a form of myiasis caused by the larva of a Hypoderma species, although his account did not provide convincing evidence to support his theory.27 In a 1983 lecture, Lyell described a survey of several hundred dermatologists treating patients with DOP who reported that many of their patients exhibited specimens in matchboxes, baggies, scraps of paper, or photographs. Lyell labeled this practice the “matchbox sign”.28 The survey was reported in a short editorial in the Lancet,10 after which the “matchbox sign” was adopted by dermatologists as being proof of delusional mental illness.29–31 Likewise, the manipulation of skin to extract specimens for relief was also considered to be proof of having a delusional disorder, and this practice was labeled “the tweezer sign”.29
After Emslie-Smith’s mention of MD in 1946, there were no significant references to MD in medical literature until 2002. In 2001, biologist Mary Leitao noted nonhealing lesions on her young son, who complained that he had “bugs” under his skin. She removed a scab, and upon magnification she did not see arthropods or parasites, but she did see embedded blue and red filaments. Leitao searched the Internet looking for similar conditions, and Browne’s description bore a resemblance to her son’s condition, so she appropriated the name.1,2 Leitao subsequently founded the not-for-profit Morgellons Research Foundation (MRF). The MRF website included a database where those with the disorder could self-report their skin and systemic symptoms.5
Leitao did not get answers from the mainstream medical establishment. She had sought help from many doctors, including Fred Heldrich, a Johns Hopkins pediatrician, who arrived at the conclusion that Leitao should not use her son to “explore the problem” and that she could benefit from a psychiatric evaluation.32 Leitao gathered a group of patient advocates, medical practitioners, physicians, and nurses into a volunteer board of directors, which included Georgia-based pediatrician Greg Smith, Texas-based nurse practitioner Virginia Savely, patient advocates Charles E Holman and Cindy Casey-Holman, and former National Aeronautics and Space Administration (NASA) physician and researcher William Harvey32 (C Casey, Charles E Holman Morgellons Disease Foundation, personal communication 2017). Leitao also sought help from Randy Wymore, a pharmacology professor at Oklahoma State University.32
In 2006, Dan Rutz, a spokesman for the US Centers for Disease Control and Prevention (CDC) contacted Leitao and said that the CDC would form a task force to investigate MD, declaring that “these people deserve more than to be blown off”.32 The CDC published their study results in 2012, declaring that MD was “similar to more commonly recognized conditions, such as delusional infestation [DI]”.33 As of 2012, Leitao had withdrawn from the public eye and closed the MRF. The website run by the MRF is no longer active, and the domain name was taken over by others, now promoting fringe etiologic theories of MD.
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Diagnosing MD
In light of previous studies of MD,1–7 a case definition for MD is proposed: a somatic LD-like illness associated with spontaneously appearing, slowly healing, filamentous, ulcerative skin lesions, with the key diagnostic criterion being colored, white, or black filaments protruding from or embedded in skin. Patients diagnosed with MD, either by self-diagnosis or by a health care practitioner, are not a homogeneous group, thus highlighting the need for a universally accepted case definition.
Filaments in MD lesions usually require magnification of 50× or more to be seen, and at that magnification they can be mistaken for textile fibers. Health care providers need to be objective when viewing these fibers: a patient must have unusual filaments visible under 50× magnification or higher (as opposed to the magnification of 10× normally used in dermatology) and embedded in or extruding from skin to be diagnosed with MD. The filaments are relatively easy to see with proper visualization tools, and detectable fibers should not be automatically dismissed as “self-implanted” or composed of synthetic substances without an appropriate evaluation. Mental health status is not a diagnostic factor in MD cases, as outlined herein.
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Controversy
Unlike Ekbom, who was concerned about the underlying cause of DP,8 many modern-day practitioners and scientists have ignored the potential underlying causes responsible for formication and beliefs of infestation. It is easier to declare mental illness the exclusive etiologic cause, thus blaming the patient, when confronted with perplexing symptoms that the practitioner cannot explain. However, it is irresponsible to label a patient delusional without an appropriate psychiatric evaluation, and if mental illness is present a physician should bear in mind that an underlying infectious process can cause a pathological response resulting in mental illness.
A PubMed search using the keyword “Morgellons” yielded 58 articles, the earliest dating from 1946. From 2006 to present, medical literature is divided into two polarized points of view. One point of view is that MD is a form of delusional mental illness, and the other is that underlying spirochetal infection causes a filamentous dermopathy that is accompanied by an array of LD-like multisystem symptoms that may or may not include neuropsychiatric symptoms. There are approximately 40 papers in the medical literature proposing that MD is purely a delusional disorder, and only a quarter of that figure proposing that MD has an infectious etiology.
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Diagnosing delusional disorder
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM)-V makes no mention of a diagnosis of DOP. The closest diagnosis is Delusional disorder 297.1 (F22), somatic type, which is defined thus:
presence of one or more delusions with a duration of one month or longer
criteria for schizophrenia have never been met (note hallucinations if present are not prominent and are related to the delusional theme eg, the sensation of being infected with insects is associated with delusions of infestation)
apart from the impact of the delusion(s) or its ramifications, functioning is not markedly impaired, and behavior is not obviously bizarre or odd
if manic or major depressive episodes have occurred, these have been brief relative to the duration of the delusional periods
the disturbance is not better explained by another mental disorder, such as obsessive compulsive disorder, and is not due to the physiological effects of a substance or medication or another medical condition.34
Somatic-type delusional disorders manifest with core beliefs concerning bodily functions or sensations. Manschreck stated that the diagnosis of delusional disorder should be a diagnosis of exclusion, and he outlined three steps for evaluating patients with delusions. The first step is to establish if pathology is present. This step requires clinical judgment to distinguish among a true observation, a firm belief, an overvalued idea, and a delusion.35 He states that a comment that at first appears delusional can prove to be factual, and some reports that seem believable may later be found to be delusional. Therefore, he recommended that rather than the truth or falseness of a belief, the extremeness or inappropriateness of a patient’s behavior may be the determining factor leading to a diagnosis of delusional disorder.35,36 In other words, one must first establish that a belief is delusional, and not the result of an underlying somatic illness.
The second step involves determining if characteristics associated with delusions, such as confusion, agitation, perceptual disturbances, physical symptoms, and mood abnormalities are present.35 The third step is performing a systematic differential diagnosis, including a thorough history, mental status examination, and laboratory/radiological evaluation to rule out other medical and psychiatric conditions that present with delusions.35 The status examination, including cognitive status, is usually normal, except for the delusional beliefs: memory and cognition are intact.37 Auditory or visual hallucinations are indicative of more severe psychotic disorders, such as schizophrenia, and suggest exclusion of a delusional disorder.37 The differential diagnosis should exclude medical conditions that can cause delusions, such as neurodegenerative or other central nervous system disorders, vascular diseases, vitamin deficiencies, medications, metabolic and endocrine disorders, toxins, and infectious diseases.37 Note that spirochetal infections such as syphilis and LD could cause symptoms that fall into this category.
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Evidence supporting the hypothesis of DP
Among reports that promote a delusional etiology for MD, there are a number of review articles, opinion pieces, or editorial letters.29,30,38–53 These do not provide any new research or clinical evidence to support the claims that MD is a delusional disorder, but they do present common discussion themes that are frequently reiterated in case studies and research papers.54–76 Common discussion themes are:
MD is a delusional disorder29,30,38–76
MD is a variation of DOP, DP, or DI29,30,38–76
MD is defined as the fixed, unshakable belief, despite lack of medical evidence, of being infested with microscopic organisms or inanimate objects29,30,38–76
the presentation of specimens in or out of a container, whether it be a matchbox, small plastic bag, paper, pill container, or photographic image, etc, is diagnostic of DOP, DP, or DI29–31,52,55,59–62,64,66,70,71
patients with MD tend to have psychiatric comorbidities74,68
MD is a mass delusional mental illness afflicting primarily middle-aged Caucasian females68,69,74,76
delusions of infestation are spread from person to person and transmitted by the Internet30,39,41,51,52,54,58,60
antipsychotic drugs are the treatment of choice for MD29,30,38–62,64–76
electroconvulsive therapy is an acceptable treatment for MD30,52
establishing rapport to gain confidence and trust helps convince patients to take antipsychotic drugs30,39,41,49,54,58,60
using the word “Morgellons” in dialogue with patients can help establish rapport and trust30,39,41,54,58,60
it is acceptable for dermatologists to diagnose delusional disorder and prescribe antipsychotic medication51,56
use of deceptive dialogue and strategies aimed at convincing patients to take antipsychotic drugs is a justifiable practice41,50,54,60,65
if a patient’s friend(s) or family member(s) also observe a subject’s dermatological lesions and believe the evidence, then they too are considered to share the delusional belief, and the delusion is considered to have been transmitted from one individual to another;30,51,54,68 the belief shared by two people that there are organisms present in the skin is called folie à deux (madness of two); folie à trois, folie à quatre, or folie à cinq are shared beliefs by three, four, or five people, respectively; and shared belief in a family is folie à famille.30,51,54,68
A PubMed search using the keyword “Morgellons” identified 18 publications consisting of case studies of between one and six patients. Table 1 provides a summary of the case studies. Most of these patients clearly do not meet the case definition of MD. Case studies provide useful anecdotal evidence, but they have limitations. Of these case studies, the majority do not mention the observation of fibers being present in or projecting from the skin (the key defining criterion for MD), nor do they mention whether the attending health care professional looked for filaments in the skin at magnification of 50× or higher.54–56,59–68,70,73
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