morgellons disease and delusions of parasitosis

6
Morgellons Disease and Delusions of Parasitosis David T. Robles, 1 Jonathan M. Olson, 1 Heidi Combs, 2 Sharon Romm 2 and Phil Kirby 1 1 Department of Medicine, Division of Dermatology, University of Washington School of Medicine, Seattle, Washington, USA 2 Department of Psychiatry, University of Washington School of Medicine, Seattle, Washington, USA Abstract Morgellons disease is a controversial and poorly defined symptom cluster of skin lesions and somatic symptoms, most notably ‘fibers’ in the skin. Because of widespread coverage in the media and on the Internet, there are an increasing number of patients presenting to dermatologists. We present three patients who believed that they had fibers in their skin. We offer a discussion of delusions of parasitosis to de- monstrate similarities between these conditions. It has been suggested by a limited number of healthcare providers that an unknown infectious agent underlies this symptom complex yet no available evidence supports this assertion. Laboratory values that would be reflective of an infectious process (e.g. elevated white blood cells, sedimentation rate, C reactive protein) are routinely normal and biopsies often reflect only nonspecific findings such as acute and chronic inflammation with erosion or ulceration. Patients with Morgellons disease generally lack insight into their disease and reject the need for psy- chiatric help. The goal is to build trust and refrain from minimizing what the patient experiences. Attentive examination of the patient’s skin and fragments they present is necessary to rule out a true underlying pathologic process and to establish a trusting relationship. A supportive, non-confrontational approach is ideal. The patient is best treated by a team of practitioners of several specialties, including dermatologists, psychiatrists, and counselors. Morgellons disease gained widespread attention following a report in a Pittsburg newspaper about biologist Mary Leitao, who described thin fibers emerging from a wound on the face of her 2-year-old son. [1] Morgellons disease has rapidly received extensive attention as a result of news publications, television, and dissemination through the Internet. Currently, the term ‘Morgellons’ retrieves about 188 000 hits on the Google Ô search engine (Google, Ô accessed 28 October 2010). In con- trast, a PubMed search accessed on 28 October 2010 using the keyword ‘Morgellons’ returned only 22 documents. [2-23] Be- cause of the controversial nature of this condition and given the multiple and various symptoms, a scientific agency, the US Centers for Disease Control and Prevention, is in the process of undertaking a study to answer questions about this dermo- pathy. The goals are to identify patients and the factors that contribute to their illness. The study also includes assessment of skin biopsies and characterization of the foreign materials obtained. [24] We present three patients treated in our clinic and discuss the differential diagnoses and suggested treatment of this condition. 1. Case Reports 1.1 Case 1 The patient was a 60-year-old man who had experienced severe, chronic, facial ulcerations for 25 years. He had a fixed belief that ‘‘unusual fiber material’’ was embedded in his skin, which he believed stemmed from ‘‘nickel poisoning’’ following a work-related chemical exposure to his face and torso 2 de- cades earlier. He reported having consulted approximately 20 physicians for this condition. Enraged with the medical system, he spent 3 years writing a 3000-page unpublished book about his ‘‘terrible experiences’’ with doctors. He expressed frus- tration that no physicians had been able to determine the exact nature of his condition. He denied a history of illegal drug use and did not believe that he was infested with parasites. On examination, he had irregularly shaped ulcerations on his chin (figure 1a). He used tweezers to pull out what he described as ‘‘hard hair bulbs,’’ ‘‘cartilage,’’ and ‘‘unusual fiber material.’’ The lesions frequently became secondarily infected with Staphylococcus aureus from chronic manipulation. The patient CURRENT OPINION Am J Clin Dermatol 2011; 12 (1): 1-6 1175-0561/11/0001-0001/$49.95/0 ª 2011 Adis Data Information BV. All rights reserved.

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Page 1: Morgellons Disease and Delusions of Parasitosis

Morgellons Disease and Delusions of ParasitosisDavid T. Robles,1 Jonathan M. Olson,1 Heidi Combs,2 Sharon Romm2 and Phil Kirby1

1 Department of Medicine, Division of Dermatology, University of Washington School of Medicine, Seattle, Washington, USA

2 Department of Psychiatry, University of Washington School of Medicine, Seattle, Washington, USA

Abstract Morgellons disease is a controversial and poorly defined symptom cluster of skin lesions and somatic

symptoms, most notably ‘fibers’ in the skin. Because of widespread coverage in the media and on the

Internet, there are an increasing number of patients presenting to dermatologists. We present three patients

who believed that they had fibers in their skin. We offer a discussion of delusions of parasitosis to de-

monstrate similarities between these conditions. It has been suggested by a limited number of healthcare

providers that an unknown infectious agent underlies this symptom complex yet no available evidence

supports this assertion. Laboratory values that would be reflective of an infectious process (e.g. elevated

white blood cells, sedimentation rate, C reactive protein) are routinely normal and biopsies often reflect only

nonspecific findings such as acute and chronic inflammation with erosion or ulceration.

Patients with Morgellons disease generally lack insight into their disease and reject the need for psy-

chiatric help. The goal is to build trust and refrain from minimizing what the patient experiences. Attentive

examination of the patient’s skin and fragments they present is necessary to rule out a true underlying

pathologic process and to establish a trusting relationship. A supportive, non-confrontational approach is

ideal. The patient is best treated by a team of practitioners of several specialties, including dermatologists,

psychiatrists, and counselors.

Morgellons disease gained widespread attention following a

report in a Pittsburg newspaper about biologist Mary Leitao,

who described thin fibers emerging from awound on the face of

her 2-year-old son.[1] Morgellons disease has rapidly received

extensive attention as a result of news publications, television,

and dissemination through the Internet. Currently, the term

‘Morgellons’ retrieves about 188 000 hits on the Google�

search engine (Google,� accessed 28 October 2010). In con-

trast, a PubMed search accessed on 28 October 2010 using the

keyword ‘Morgellons’ returned only 22 documents.[2-23] Be-

cause of the controversial nature of this condition and given the

multiple and various symptoms, a scientific agency, the US

Centers for Disease Control and Prevention, is in the process of

undertaking a study to answer questions about this dermo-

pathy. The goals are to identify patients and the factors that

contribute to their illness. The study also includes assessment

of skin biopsies and characterization of the foreign materials

obtained.[24]

We present three patients treated in our clinic and discuss

the differential diagnoses and suggested treatment of this

condition.

1. Case Reports

1.1 Case 1

The patient was a 60-year-old man who had experienced

severe, chronic, facial ulcerations for 25 years. He had a fixed

belief that ‘‘unusual fiber material’’ was embedded in his skin,

which he believed stemmed from ‘‘nickel poisoning’’ following

a work-related chemical exposure to his face and torso 2 de-

cades earlier. He reported having consulted approximately

20 physicians for this condition. Enraged with the medical system,

he spent 3 years writing a 3000-page unpublished book about

his ‘‘terrible experiences’’ with doctors. He expressed frus-

tration that no physicians had been able to determine the exact

nature of his condition. He denied a history of illegal drug use

and did not believe that he was infested with parasites. On

examination, he had irregularly shaped ulcerations on his chin

(figure 1a). He used tweezers to pull out what he described as

‘‘hard hair bulbs,’’ ‘‘cartilage,’’ and ‘‘unusual fiber material.’’

The lesions frequently became secondarily infected with

Staphylococcus aureus from chronic manipulation. The patient

CURRENT OPINIONAm J Clin Dermatol 2011; 12 (1): 1-6

1175-0561/11/0001-0001/$49.95/0

ª 2011 Adis Data Information BV. All rights reserved.

Page 2: Morgellons Disease and Delusions of Parasitosis

responded transiently to antibacterials but believed they be-

came ineffective or intolerable due to adverse effects. A punch

biopsy revealed nonspecific changes including ulcerations

associated with acute inflammation.

We treated the patient with desonide ointment for inflamma-

tion and doxycycline 100mg twice daily for staphylococcal

coverage and applied a hydrocolloid dressing (DuoDERM�

Extra Thin; ConvaTec, Skillman, NJ, USA) to cover the lesion.

He reluctantly agreed to a consultation with a psychiatrist in

our multidisciplinary team but he terminated the interview

prematurely and refused further psychiatric follow-up. The

patient was seen in the dermatology clinic at close intervals

(every 2–4 weeks) and was called weekly by a dermatology

resident to ensure that he was continuing to cover the lesions

and to avoid further manipulation. Following 9 weeks of this

regimen it was noted that his lesions had resolved and the pa-

tient was no longer obsessed about fibers emanating from his

skin (figure 1b).

1.2 Case 2

The patient was a 35-year-old woman with a long history of

facial lesions and resultant scars. Her frequent facial ulcer-

ations caused her to lose her job as a waitress. She reported that

‘‘something’’ was irritating her skin and described ‘‘black fi-

bers’’ that she had extracted from facial skin. She stated that she

could twist her neck until she heard a ‘‘pop’’ that relieved an ill-

defined ‘‘tension’’ in her skin. She was adamant that parasites

were not responsible for her skin problems and denied feeling

any organism crawling in her skin. She had a contracted scar in

the glabellar area from previous ulcerations (figure 2a). Both

cheeks had areas of hypo- and hyperpigmentation from pre-

vious excoriations and inflammation (figure 2b). On her chin

she had an erythematous, eroded plaque with a thin, honey-

colored, hemorrhagic crust. She was treated with the applica-

tion of a hydrocolloid dressing and oral doxycycline 100mg

twice daily for 2 months for S. aureus secondary infection. At

the 2-month follow-up her erosions were almost completely

healed. The patient was then referred to a psychiatrist in our

multidisciplinary team for further evaluation regarding issues

of depression and anxiety centered on her chronic skin problems.

1.3 Case 3

This was a 50-year-oldwomanwith a 30-year history of skin-

picking behaviors. She had a fixed delusion that she had

‘‘rocks’’ and ‘‘fibrous threads’’ under her skin and ingrown

hairs over her face extending to the submandibular region. She

felt compelled to pick them out using needles and tweezers. She

had caused significant facial scarring, which had worsened in

the previous 3 years. Physical examination revealed numerous

scattered, irregularly shaped, depressed scars in a semi-symmetric

distribution. There was no evidence of an underlying derma-

tologic condition or secondary infection. She consulted a psy-

chiatrist from September 2003 through June of 2005 during

which time she received medication treatment including esci-

talopram, trazodone, risperidone, and nortriptyline. She also

engaged in cognitive behavior therapy focused on reducing her

a

b

Fig. 1. (a) A patient with irregularly shaped ulcerations on his chin frommanipulation with tweezers to get rid of ‘fibers’ from his skin. (b) Follow-up after 9 weeks

of conservative wound-care measures and antibacterial treatment to control secondary staphylococcal infection.

2 Robles et al.

ª 2011 Adis Data Information BV. All rights reserved. Am J Clin Dermatol 2011; 12 (1)

Page 3: Morgellons Disease and Delusions of Parasitosis

skin-picking behavior. With treatment she reduced her skin-

picking behavior from a peak of 10 hours per 24 hours to a

minimum of 30 minutes per 24 hours. She was not able to

completely cease this activity.

2. Discussion

Morgellons disease has been the recent focus of attention in

the lay press and a source of controversy among the medical

community. Physicians should be aware of the content on the

Internet regarding this topic since many patients come in with

copies of content from websites and self-diagnose their symp-

toms. One website that we have seen patients refer to is the

Morgellons Research Foundation (MRF) [http://www.

morgellons.org/]. Mary Leitao, the founder of the MRF, used

the term ‘Morgellons’ to describe fibers emanating from her

son’s skin, after seeing Sir Thomas Browne’s 1674 description

of ‘‘mysterious fibers’’ and ‘‘harsh hairs’’ coming from the skin

of children.[4] Most physicians, including the authors of this

article, reject the notion that Morgellons disease represents an

‘‘emerging infectious disease’’ as labeled by the MRF.[25] Some

authors suggest that it is simply delusional parasitosis by an-

other name.[6] According to the MRF, patients with Morgel-

lons disease have a constellation of signs and symptoms: skin

lesions that are both spontaneous and patient generated, sen-

sations of movement, ‘filaments’ of varying colors and textures

removed from the skin that may ‘auto-fluoresce’ or glow when

viewed under a microscope with UV light, muscle and joint

pain, chronic fatigue, cognitive dysfunction, and emotional

effects ranging from depression to mania.[25] Virginia Savely,

family nurse practitioner and member of the medical advisory

board of theMRF, believes that an unknown infectious agent is

the underlying and unifying cause of this condition.[11] This

claim has not been substantiated. The MRF disparage the

notion that the cause is psychologically driven. Savely et al.[11]

claim that, with the aid of a 60· hand-held digital microscope,

‘‘a network of blue fibers under the skin was visualized, as well

as blue and white fibers protruding from their lesions.’’ We

have carefully evaluated the skin and skin fragments of all our

patients reporting symptoms consistent with Morgellons dis-

ease using a hand-held 7· Bausch& Lomb� magnifier (Bausch

& Lomb, Rochester, NY, USA), a 10·DermLite II PRO HR�

(3Gen, LLC, San Juan Capistrano, CA, USA) and a 100· and

400· microscope but have been unable to identify fibers other

than hair and fabric. Savely et al.[11] have hypothesized a

possible tick-borne disease or plant etiology of Morgellons

a b

Fig. 2. (a) A patient with a disfiguring contracted scar in the glabellar area from previous manipulation to extract ‘fibers’ from the skin. (b) Both cheeks have

areas of hypo- and hyperpigmentation from previous excoriation and inflammation.

Morgellons Disease and Delusions of Parasitosis 3

ª 2011 Adis Data Information BV. All rights reserved. Am J Clin Dermatol 2011; 12 (1)

Page 4: Morgellons Disease and Delusions of Parasitosis

disease but this has not been substantiated by available evi-

dence or corroborated by physicians outside of the MRF.

We propose that Morgellons disease is similar to delusions

of parasitosis (DP). In DP the delusional focus is on being in-

fested with parasites, whereas patients with Morgellons disease

believe that unusual fibers or other material is in their skin

(table I). Similar to patients with DP, patients self-mutilate by

picking and digging at their skin to extract offending substances

resulting in chronic wounds and scars. In our experience, since

patients withMorgellons disease are concerned about ‘fibers’ in

their skin, they commonly use tweezers to pull the ‘fibers’ from

their skin, demonstrating the so-called ‘tweezer sign.’[22] How-

ever, this finding is not entirely specific for Morgellons disease

as patients with DP frequently use tweezers to extract ‘bugs’ or

‘eggs’ from their skin. A common explanation is that removing

the ‘fibers’ or ‘unusual material’ provides a sense of ‘relief,’

which is reminiscent of hair pulling in trichotillomania. Lesions

may become secondarily infected and require topical and sys-

temic antibacterial therapy.

The fixed belief that fibers or other debris are buried within

the skin is similar to DP. DP is a condition characterized by a

fixed, false belief of cutaneous infestation with parasites not

secondary to another psychiatric illness.[26] Similar to those

with Morgellons disease, patients are convinced that they have

a dermatologic, not a psychiatric problem.[27,28] For patients

withDP, lack of insight and the unshakeable belief that they are

infested despite evidence to the contrary is what distinguishes

it from formication, in which patients experience symptoms

of infestation such as a crawling or burrowing sensation in

their skin but are able to accept the absence of infection when

evidence demonstrates otherwise.[29] Although the disorder is

uncommon, many dermatologists treat at least one patient

with DP.

Patients with DP may perform ritualistic purifications in-

cluding medicated baths, and application of antibacterial

cleansers and disinfectants. They frequently and vigorously

clean or manipulate their skin. Patients with Morgellons dis-

ease deny the existence of parasites. They focus on ridding

themselves of distressing subcutaneous substances. Both

groups may seek multiple medical consultations and present

lint, fibers, dried blood, hair, and other skin fragments spuri-

ously thought to represent the parasites (DP) or ‘fibers’

(Morgellons disease). This classic finding is commonly referred

to as the ‘matchbox sign,’ named for the container in which

patients bring material to physicians.[25] Clinical appearance

may include excoriations, ulcerations, areas of lichenification,

or prurigo nodules from self-manipulation following attempts

to rid themselves of organisms and/or inorganic materials.[28]

Laboratory values are normal and biopsies often show non-

specific findings such as acute and chronic inflammation with

erosion or ulceration.

3. Treatment

Similar to patients with DP,[26] patients with Morgellons

disease lack insight into their disease and reject the need for

psychiatric help. As a result, dermatologists may be more than

the primary caregiver; they may be the only physician from

whom patients will accept treatment. Only about one in seven

dermatologists use a pharmacologic intervention, typically

sedatives and anxiety-relieving drugs, for patients with DP.[27]

For DP, pimozide has long been considered the antipsychotic

medication of choice.[27-29] Pimozide is a dopamine D2 receptor

blocker with a unique ability to antagonize the central opioid

receptor system, which can help with pruritus and for-

mication.[27] It may lead to a prolonged QT interval, like other

antipsychotics. Adverse effects such as hypotension, ven-

tricular arrhythmias, and sudden cardiac death have been re-

ported, but are rare, and associated only with higher doses.[30]

Some authorities recommend both pre- and post-treatment

ECGs. Pimozide is usually started at 1–2mg/day with gradual

increases titrated to clinical response. Efficacy is foundwith low

dosages ranging from 2 to 4mg/day; these dosages are unlikelyto cause cardiac or significant neurologic adverse effects.[29]

Table I. Similarities and differences between Morgellons disease and de-

lusions of parasitosis

Morgellons disease Delusions of parasitosis

Fixed false belief of ‘fibers’ or

‘unusual material’ in the skin

Fixed false belief of infestation with

parasites

Convinced that they have a

dermatologic problem, not a

psychiatric disease

Convinced that they have a

dermatologic problem, not a

psychiatric disease

Typically reject psychiatric

intervention

Typically reject psychiatric

intervention

Typically see multiple physicians

from multiple disciplines; ‘physician

hopping’

Typically see multiple physicians

from multiple disciplines; ‘physician

hopping’

Often present lint, fibers, dried blood,

hair, and other skin fragments

spuriously thought to represent the

‘fibers’ or ‘unusual material’

(‘matchbox sign’)

Often present lint, fibers, dried blood,

hair, and other skin fragments

spuriously thought to represent the

parasites (‘matchbox sign’)

Demonstrate the ‘tweezer sign’ when

they dig at their skin in an attempt to

get rid of the ‘fibers’ in their skin

Frequently use disinfectants,

elaborate cleansing rituals, and

topical scabicides to rid themselves

of parasites

4 Robles et al.

ª 2011 Adis Data Information BV. All rights reserved. Am J Clin Dermatol 2011; 12 (1)

Page 5: Morgellons Disease and Delusions of Parasitosis

At higher dosages, pimozide has been associated with extra-

pyramidal adverse effects, which may require treatment with

antiparkinsonian medications.[31]

Because of the adverse effect profile of pimozide, some

experts recommend newer atypical antipsychotics, such as

olanzapine and risperidone.[32] Dosages as low as olanzapine

1mg/day and risperidone 1mg/day have been shown to be ef-

fective for treating somatic delusions[33] but higher dosages

(5–10mg/day for olanzapine and 2–4mg/day for risperidone)

have also been reported for the treatment of DP.[28,34-37] In

addition, Mercan et al.[38] reported benefit from intramuscular

risperidone at a dosage of 37.5mg given every 2 weeks. These

medications carry risks, including hyperlipidemia, diabetes

mellitus, QT interval prolongation, and weight gain. Med-

ication non-compliance is a significant obstacle, given the lack

of insight patients demonstrate.

4. Approach to the Patient

4.1 Terminology

Diagnosing patients with DP is difficult since, by definition,

they have a fixed, false belief that they are infested with para-

sites, thus telling them they have ‘delusions of parasitosis’ is

unacceptable. Some authors suggest the term ‘pseudoparasitic

dysesthesia’ instead of ‘delusions of parasitosis.’[39] Several

editorials point out the advantage of the term ‘Morgellons

disease’ over themore pejorative term ‘delusions of parasitosis,’

both as ameans of enhancing rapport[4-6] and as a starting point

for a discussion with the patient. Koblenzer[7] takes this idea

one step further, suggesting the symptom complex should be

referred to as ‘Morgellons syndrome,’ rather than ‘disease,’

thereby side-stepping the issue of etiology and focusing on

treatment. One may argue that using a term such as ‘Morgel-

lons’ when talking to a patient with a delusion of parasites or

fibers in his/her skin may validate the content of websites such

as the MRF. It is certainly a slippery slope and we try to avoid

using ‘Morgellons’ as a diagnosis when talking to a patient. In

our experience, offering this label or agreeing with a patient’s

self-diagnosis is not necessary in building trust. However, it is

important to be aware of these websites and their content.

4.2 Building Trust

The goal in approaching a patient for the first time is to build

trust. It cannot be overstated that, regardless of etiology, the

patient’s suffering is genuine and physician empathy is vital.

Direct confrontation will irreparably damage the therapeutic

alliance, especially if done early before a trusting relationship

has been established. Careful examination of the skin and

fragments that the patient brings in is an important part of

building trust. We encourage patients to bring in their collections

of skin or hair that they believe to contain ‘fibers’ or ‘parasites.’

We show the patient thatwe are providing a careful and thorough

examination of their contents and in some cases we examine them

microscopically together with the patient. Other diagnoses to

consider include scabies, body or hair louse infestation, insect bite

reactions, substance abuse, and folliculitis.

Since many patients will have already consulted multiple

physicians and will report that no-one ‘has taken them seri-

ously,’ we perform a skin biopsy in nearly all of our new

patients with symptoms of DP or Morgellons disease. The skin

biopsy serves multiple purposes: (i) other diagnostic possibil-

ities can be eliminated; (ii) it shows the patient that, since they

are coming to you for a ‘dermatologic problem’ and not a

‘psychological problem,’ you are truly trying to investigate their

problem seriously; and (iii) for a subset of patients, when con-

fronted with negative findings, it is a starting point for a dia-

logue on the possibility that ‘fibers’ or a parasitic infestation

may not be present. Some patients, when confronted with

findings that do not support their delusion will assume that the

correct area of the lesion was not biopsied, thus we ask our

patients before the biopsy to help us identify the area likely to be

of highest yield. This involves them in the process and helps

eliminate the chance of disregarding negative results on account

of inaccurate sampling.

Establishing a positive doctor-patient relationship may en-

able the patient to accept medications. The physician should

state that although the cause of their symptoms is unknown,

there are other patients with similar complaints that have

benefited frommedications that help with unusual experiences.

Even with the paucity of data, antipsychotics appear to offer

the best pharmacologic treatment.

5. Conclusions

Patients often present to dermatologists with reports of skin

disorders consistent with psychiatric illness. The classic exam-

ple is DP. In reviewing our clinical cases as well as the current

literature, we find that patients withMorgellons disease andDP

share a similar symptom complex. The fixed beliefs of the pa-

tient and their presentation of ‘proof’ in Morgellons disease

parallel those in DP. Although there is a paucity of reliable

literature, clinicians have found a supportive, non-confrontational

approach with reassurance and medication helpful in working

with this challenging patient group.

Morgellons Disease and Delusions of Parasitosis 5

ª 2011 Adis Data Information BV. All rights reserved. Am J Clin Dermatol 2011; 12 (1)

Page 6: Morgellons Disease and Delusions of Parasitosis

Acknowledgments

No sources of funding were used to prepare this article. The authors

have no conflicts of interest that are directly relevant to the content of this

article.

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Correspondence: Dr David T. Robles, Division of Dermatology, University

of Washington School of Medicine, 1959 NE Pacific St, Box 356524, Seattle,

WA 98105-6524, USA.

6 Robles et al.

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