Ekbom Syndrome: the Challenge of “Invisible Bug” Infestations

Ekbom Syndrome: the Challenge of “Invisible Bug” Infestations

ANRV397-EN55-05 ARI 1 November 2009 10:18 Ekbom Syndrome: The Challenge of “Invisible Bug” Infestations Nancy C. Hinkle Department of Entomology, University of Georgia, Athens, Georgia 30602-2603; email: [email protected] Annu. Rev. Entomol. 2010. 55:77–94 by University of Georgia on 01/05/10. For personal use only. Key Words First published online as a Review in Advance on parasitosis, delusion, invisible bug, infestation, formication August 11, 2009 The Annual Review of Entomology is online at Abstract Annu. Rev. Entomol. 2010.55:77-94. Downloaded from arjournals.annualreviews.org ento.annualreviews.org Ekbom Syndrome is synonymous with delusory parasitosis, a belief that This article’s doi: one’s body is infested by invisible bugs. Persons suffering from this syn- 10.1146/annurev.ento.54.110807.090514 drome often claim to feel dermal sensations and to visualize the bugs, Copyright c 2010 by Annual Reviews. although no one else can see them. Ekbom Syndrome is a delusional All rights reserved condition; it is intractable and cannot be corrected by argument or evi- 0066-4170/10/0107-0077$20.00 dence. Ekbom Syndrome sufferers exhibit a range of predictable behav- iors in their attempts to eliminate their infestations, including seeking identifications and treatment from physicians and entomologists. Fre- quently they also experience comorbid psychological conditions. Be- cause this is a delusional affliction, successful treatment typically re- quires neuroleptic medications, necessitating intervention by medical professionals. 77 ANRV397-EN55-05 ARI 1 November 2009 10:18 INTRODUCTION Those afflicted with ES often experience visual and tactile hallucinations perceived as Ekbom Syndrome (ES) is the clinical term for bugs crawling in or on the skin (46, 119). ES: Ekbom Syndrome the condition variously called delusory para- These perceptual delusions may be monosymp- sitosis (DP), delusions of parasitosis, delusion DP: delusory tomatic pathological elements, with individuals parasitosis of infestation, psychogenic parasitosis, or der- otherwise appearing unremarkable (19, 30, 57). matozoenwahn (dermatozoic delusion) (21, 30, Because this review deals with these individ- 102, 106, 117). ES is characterized by the per- uals in nonmedical contexts, they are referred ception that one’s body is infested by invisi- to as “sufferers,” not “patients.” References to ble mites or insects, despite evidence to the “bugs” are used in the sense that Ekbom suf- contrary (24, 120). These infestations are per- ferers use the word, as a catchall term for the ceived as tactile sensations (e.g., stinging, burn- parasites, mites, insects, and larvae with which ing, itching, or crawling) and visualized in a they label the organisms they perceive infesting variety of forms. ES should not be confused them (43). with Wittmaack-Ekbom Syndrome, the med- While ES has repeatedly been characterized ical term for restless legs syndrome; nor should as rare by the medical community (19, 65), it is it be confused with entomophobia, the fear of a condition regularly encountered by pest con- insects, or acarophobia, the fear of mites, al- trol staff and entomologists (32, 38, 89). Trabert though one of the earliest discussions of the (106) estimated that at any given time there are condition was published in French as “Les over 25,000 ES sufferers in the United States acarophobes” by Thibierge (105). (Figure 1). Because ES sufferers do not con- A similar condition called Morgellons Syn- sider themselves ill, but rather infested with drome is said to involve putative infestation of bugs, they are disinclined to accept psychiatric the skin by fibers (96). Because Morgellons does referrals (30, 41, 103, 106, 119). Ekbom himself not involve insects, it is not synonymous with (30) noted that “it is quite common for mentally DP but likely is a variant within the same delu- ill people to believe they have creatures in (or sional complex (27, 58, 75, 95) (see sidebar, on) the body.” Morgellons). MORGELLONS CHARACTERIZATION OF SUFFERERS by University of Georgia on 01/05/10. For personal use only. Morgellons, also known as the fiber disease, is a condition in Primary or autochthonous DP occurs indepen- which individuals have an unshakable conviction that they have dently of any medical condition. In contrast, fibers emerging from their skin (84). The name derives from a secondary DP accompanies a physiological sit- 1674 description of children experiencing “harsh hairs on their Annu. Rev. Entomol. 2010.55:77-94. Downloaded from arjournals.annualreviews.org uation that produces paresthesia, pruritus, ery- backs,” which the author termed Morgellons (96). thema, rash, or other symptoms that are then People who think they have Morgellons compare symptoms misinterpreted as invisible bugs in the skin (37). and discuss self-treatments on thousands of Web sites, and these Although individuals may feel actual dermal individuals are now presenting to physicians with self-diagnoses sensations, the hallucination is a result of the of Morgellons (27, 58, 75, 84, 111). Along with the dermal symp- brain attempting to identify the proximal cause, toms, people exhibit disabling fatigue, life-altering cognitive de- leading to their interpretations of skin debris cline (brain fog), arthralgia, and mood disorders (58, 96). Like as organisms producing the stings, prickling, ES, Morgellons is psychologically contagious, with families and bites, or crawling sensations (102). Pruritus is work groups frequently sharing the condition (111). Although the most commonly reported sensation, typi- Morgellons has been widely covered in the popular press, this cally found in over 80% of sufferers (121), with condition is not recognized by the medical community (84). other feelings described as crawling, burrow- ing, and biting (6, 44). 78 Hinkle ANRV397-EN55-05 ARI 1 November 2009 10:18 Figure 1 Lesions produced by an Ekbom Syndrome sufferer attempting to remove bugs from under her skin. Of course, there is a difference between feel- invisible bugs, traveling the world seeking a ing strange sensations in or on the skin and cure, unable to practice his profession. One concluding that they are produced by invisi- of the best first-person accounts of the condi- ble bugs. Similarly, while sufferers respond log- tion was published by Traver(108), a prominent ically by attempting to view and collect the zoologist who suffered from the condition for causative agent, their adamant assertions that over 31 years (22, 88). Both a chemist and a scabs and hairs are indeed insects is indicative biologist claimed to have acquired their infes- of delusion (27, 28). tation from yak wool sweaters and were unwill- ing to consider a psychopathological cause (98). by University of Georgia on 01/05/10. For personal use only. Similarly, a psychologist given a diagnosis of ES DEMOGRAPHICS refused to accept her physician’s assessment (3). Common attributes can typify ES sufferers but A scientist of some distinction claimed to have Annu. Rev. Entomol. 2010.55:77-94. Downloaded from arjournals.annualreviews.org these individuals are not characterized by so- discovered a new insect from Central America cioeconomic level, nationality, or any other de- that had infested him as he handled fruit from mographic, including education (24, 26, 63, Guatemala; he presented detailed drawings of 94). Many ES sufferers appear to be quite nor- the insect and its copulation as observed under mal except for their obsession about bugs in the microscope (117). the skin differentiating them from other peo- Although young people can experience ES ple (26, 61, 65, 74). Not infrequently, they are (63), the majority of sufferers typically are older high-functioning, intelligent, productive indi- and female (11, 65, 81, 106), although this gen- viduals (36, 76, 109). Physicians and other med- eralization does not capture the diversity of ical professionals can suffer from ES (115), and sufferers. There tends to be an equal distri- in one survey the majority were professionals bution by sex under the age of 50, but above (65). Lyell (65) recounts the case of a middle- that age females predominate by a ratio of 2:1 aged physician who suffered for a decade from (94). www.annualreviews.org • Ekbom Syndrome 79 ANRV397-EN55-05 ARI 1 November 2009 10:18 The average age at clinical presentation is sharing many similarities. Because of the 72 years (81). The elderly may be dispropor- difficulty in recruiting patients, patient lack tionately represented among ES sufferers due of compliance, and challenges of follow-up Polypharmacy: simultaneous use of to senile pruritus (9, 109), increased incidence (6, 11, 50, 116), research studies are few. multiple medications of diabetes mellitus–associated diabetic neu- For instance, patients experiencing parasitic ropathy (8), reduced visual acuity (30, 61, 109), delusions due to illegal drug use are frequently and other medical conditions (26). Reduced incarcerated and unavailable for interview (28). blood flow due to arterial stenosis can also pro- This is a self-defined group and those willing duce paresthesia (61). Additionally, advancing to submit to neuroleptic agents may be more age brings with it loss of autonomy, leading to prone to successful treatment, thus biasing any feelings of declining self-worth and depression, investigation (24). which have been linked with DP (42, 67). In ad- dition, polypharmacy (simultaneous use of mul- BEHAVIORS tiple medications) with concomitant side effects Sufferers attempt to remove parasites by pick- and potential drug interactions (7, 24, 38) may ing and digging into the skin, producing ex- account for ES prevalence in the elderly. Older coriation, scarification, lacerations, and other people frequently take over-the-counter drugs, lesions (59, 65). Self-mutilation to remove the supplements, and herbal remedies, which may parasites is inflicted by fingernails or teeth (28), interact with or potentiate other medications as well as mechanical implements such as nee- (16, 25, 31, 54). In at least one case, delusions dles (26), tweezers, knives (71), razor blades, of parasitosis were precipitated by prescription and other sharp instruments (6, 46, 65).

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