Case Reports Morgellons Disease Presenting As an Eyelid Lesion Rasanamar K. Sandhu, M.D., M.P.H.*, and Eric A. Steele, M.D.*† Abstract: Morgellons disease is characterized by complaints of uncomfortable skin sensations and fibers emanating from nonhealing skin lesions. Morgellons disease is well-known in the dermatology and psychiatry literature, where it is typically considered a subtype of delusional parasitosis, but it has not yet been described in the ophthalmology literature. A patient with self-reported Morgellons disease is presented, who was referred for evaluation of left lower eyelid ectropion. She reported that her skin was infested with fibers that were “trying to get down into the eyelid.” On examination, she had ectropion of the left lower eyelid, broken cilia, and an ulcerated left upper eyelid lesion concerning for carcinoma. Biopsy of the lesion was consistent with excoriation. Treatment of her ectropion was deferred out of concern for wound dehiscence, given the patient’s aggressive excoriation behavior. This case is presented to make the ophthalmologist aware of this disorder and to highlight the appropriate clinical management.
M
orgellons disease is a newly described syndrome wherein patients complain of crawling skin sensations associated with multicolored fibers emerging from poorly healing skin lesions.1,2 Most dermatologists and psychiatrists believe that this syndrome is actually a subset of delusional parasitosis.2–4 Supporting this theory, investigators at the Centers for Disease Control and Prevention recently found that the fibers collected from Morgellons patients were mostly consistent with cotton or superficial skin, and that skin lesions were attributable to excoriation, solar elastosis, or other known entities.1 Several reports of Morgellons disease and its associated lesions have been described in dermatology, ENT, and oral surgery literature, but, to the authors’ knowledge, this is the first case to be reported in the ophthalmology literature.5,6 Given the rising prevalence of self-reported Morgellons disease over the last decade, possibly related to discussion of the disease on the internet, ophthalmologists should be aware of this syndrome, its presentation, and its differential diagnosis. This Health Insurance Portability and Accountability Act-compliant case report was exempt from institutional review board review and was performed in accordance with the tenets of the Declaration of Helsinki.
CASE REPORT A 65-year-old Caucasian woman was referred to the Oculofacial Plastic and Reconstructive Surgery service for evaluation of left lower eyelid ectropion. She reported a history of Morgellons disease, without history of psychiatric disease or substance abuse. However, the patient’s chief complaint related to a lesion at her left medial canthus area that had been present Accepted for publication June 11, 2014. The authors have no financial or other conflicts of interest to disclose. *Casey Eye Institute, Oregon Health Sciences University, Portland, Oregon, U.S.A.; and *†Veterans Affairs Medical Center, Portland, Oregon, U.S.A. Address correspondence and reprint requests to Eric A. Steele, m.d., Casey Eye Institute, Oregon Health Sciences University, 3375 SW Terwilliger Ave, Portland, OR 97239-4197. E-mail: [email protected] DOI: 10.1097/IOP.0000000000000258
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
for at least 4 years. The patient reported that she had been diagnosed in the past with Morgellons syndrome. She complained of substances, described as “wormy things” and “creamy white stuff,” tracking over from her hair and various parts of her face, and emerging from the OS. She reported rubbing her eyes with a tissue and “trying to pull them out of her” due to the pain she felt that was caused at the left medial canthus. At 1 visit, the patient brought 2 small bags full of the substance, one of which is depicted in Figure A. She complained that this was the substance that was “hell bent on getting into the (left medial canthus) sore.” An attempt was made to submit the material in the bags for pathologic inspection, but it dissolved when placed in the formalin. The patient admitted that she often tried to treat the area with an antimicrobial cream, and it is presumed the whitish material represented the dried solution that she subsequently peeled off of her skin. A chart review showed multiple prior visits to other providers, including ophthalmology, dermatology, and the emergency room, with similar complaints. A physical examination revealed a 15 mm × 6 mm ulcerated lesion at the left medial canthus with a pearly appearing border (Fig. B). Multiple excoriations were noted on the forehead. The hair above her forehead appeared to have been shaved (Fig. C), and most of the cilia along her left lower eyelid were broken or removed. There was bilateral lower eyelid ectropion, worse on the left (Fig. D). Aside from a whitish, flaky material on her skin (Fig. C), no unusual fibers were seen on slit lamp examination. Given the concerning appearance of the left medial canthal lesion, biopsy was performed to rule out carcinoma. According to pathology report, the biopsy showed epidermal hyperplasia and fibrosis, suggestive of a traumatized seborrheic keratosis, without evidence of basal cell carcinoma or other malignancy. The authors felt that these findings were consistent with the patient’s self-excoriating behavior. Repair of the ectropion was deferred out of concern for wound dehiscence with the patient’s history of aggressively rubbing the eyelids. She was instructed to use maxitrol ointment over the lesion and to avoid manipulation of the area. She was referred to psychiatrist and dermatologist, but lost to follow up. The patient continued to experience symptoms, and returned to the oculoplastic surgery clinic 2 years later requesting that the medial canthus area, “including the sinuses,” be surgically removed to alleviate the problem. A physical examination showed numerous excoriations over the nose, cheeks, and forehead. The left medial canthus lesion had healed, and the lower eyelid ectropion had significantly improved. It was explained to the patient that there was no role for surgery in this situation, and the patient’s primary care provider was asked to help arrange a referral to Psychiatry and Dermatology.
DISCUSSION Morgellons disease began to enter the medical lexicon after 2002, when Mary Leitao, a former laboratory technician from Pittsburg, coined the term to describe multicolored fibers that she observed emerging from a wound on the face of her 2-year-old son. She subsequently contacted the Morgellons Research Foundation to investigate what her family felt was an infectious process that physicians had been unable to diagnose, garnering significant media attention and lobbying successfully for legitimate scientific study of the disease. Since then, the diagnosis of Morgellons disease has become increasingly prevalent, especially in California, Texas, and Florida.2 Patients typically complain of multicolored fibers emerging from nonhealing wounds, associated with itching,
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Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
Case Reports
A, A small bag full of what was most likely dried, flaked antimicrobial cream. The patient brought this bag into clinic, complaining that this substance was “hell bent on getting into” her left medial canthus sore. B, A close-up photograph of a 15 mm × 6 mm ulcerated lesion at the left medial canthus, with a pearly appearing border. Multiple excoriations are present above the brows. C, A photograph demonstrating broken hairs on the patient’s forehead consistent with shaving. Also note the whitish flaky material present on the forehead skin similar to what the patient had gathered and brought in plastic bags at her initial appointment. D, Bilateral lower eyelid ectropion, worse on the left. Also note the lesion in the left medial canthus and multiple excoriations above the brows.
biting, or crawling sensations of the skin. In the most comprehensive epidemiologic study to date, the Centers for Disease Control and Prevention found the prevalence of Morgellons disease to be about 3.65 per 100,000 people.1Most of those affected were middle-aged, Caucasian women. The majority of patients began to experience symptoms after 2002, roughly corresponding to the time when internet postings regarding Morgellons disease began to emerge. There is some evidence in the literature that Morgellons disease might be related to a spirochete infection, specifically Lyme disease.7,8 However, the Centers for Disease Control and Prevention found no such association with Lyme disease or several other known parasites and infectious entities. They found that most of the fibers were consistent with cotton or superficial skin, and that skin lesions were attributable to excoriation, solar elastosis, or other known entities. These findings would seem to support the theory that the unexplained dermatopathy known as Morgellons disease may represent a wider recognition of symptoms associated with delusional parasitosis. While Morgellons disease is typically considered to be within the realm of psychiatry and dermatology, the ophthalmologist also needs to be aware of the signs of this disorder. Patients with Morgellons disease may seek care from a number
e2
of different providers, including an ophthalmologist, in an attempt to gain relief and validation of their distressing symptoms.3 It is essential not to dismiss any skin lesion as benign without considering a thorough differential diagnosis, including carcinoma that may mimic the nonhealing wound of chronic self-excoriation. After proper evaluation of any skin lesions, the physician may want to consider what else he can do to ease patient suffering. Dermatology referral can be helpful in evaluation of any skin lesions that may be treatable. While delusional parasitosis is sometimes a stand-alone diagnosis, it is more often comorbid with other psychiatric disorders or it may be present as a symptom of a single broader diagnosis such as schizophrenia or psychotic depression.1,3,9 Therefore, the physician who encounters patients with Morgellons disease should work with the primary care provider to encourage a psychiatric evaluation, bearing in mind that many patients may be resistant to this idea. Although most providers consider Morgellons disease to be a subset of delusional parasitosis, some have suggested that using the term “Morgellons” with patients can be useful in enhancing patient rapport, given that many of these patients are frustrated by perceived dismissal of symptoms by physicians. Morgellons disease presents several challenges to ophthalmologists, one of which is a lack of understanding of this
© 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.
Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
increasingly prevalent disorder. Equipped with knowledge, and through cooperation with other providers, the ophthalmologist can help to provide the best possible care for patients with Morgellons disease.
REFERENCES 1. Pearson ML, Selby JV, Katz KA, et al.; Unexplained Dermopathy Study Team. Clinical, epidemiologic, histopathologic and molecular features of an unexplained dermopathy. PLoS One 2012;7:e29908. 2. Savely VR, Leitao MM, Stricker DRB. The mystery of Morgellons disease: infection or delusion? Am J Clin Dermatol 2006;7:1–5. 3. Foster AA, Hylwa SA, Bury JE, et al. Delusional infestation: clinical presentation in 147 patients seen at Mayo Clinic. J Am Acad Dermatol 2012;67:673.e1–10.
Case Reports
4. Vila-Rodriguez F, Macewan BG. Delusional parasitosis facilitated by web-based dissemination. Am J Psychiatry 2008;165:1612. 5. Grosskopf C, Desai B, Stoopler ET. An oral ulceration associated with Morgellons disease: a case report. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2011;112:e19–23. 6. Bhandary SK, Peter R, Bhat S. Delusional parasitosis in ENT. Indian J Otolaryngol Head Neck Surg 2008;60:387–9. 7. Middelveen MJ, Stricker RB. Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease. Clin Cosmet Investig Dermatol 2011;4:167–77. 8. Savely VR, Stricker RB. Morgellons disease: analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology. Clin Cosmet Investig Dermatol 2010;3:67–78. 9. Murase JE, Wu JJ, Koo J. Morgellons disease: a rapport-enhancing term for delusions of parasitosis. J Am Acad Dermatol 2006;55:913–4.
© 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.
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Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
M
orgellons disease is a newly described syndrome wherein patients complain of crawling skin sensations associated with multicolored fibers emerging from poorly healing skin lesions.1,2 Most dermatologists and psychiatrists believe that this syndrome is actually a subset of delusional parasitosis.2–4 Supporting this theory, investigators at the Centers for Disease Control and Prevention recently found that the fibers collected from Morgellons patients were mostly consistent with cotton or superficial skin, and that skin lesions were attributable to excoriation, solar elastosis, or other known entities.1 Several reports of Morgellons disease and its associated lesions have been described in dermatology, ENT, and oral surgery literature, but, to the authors’ knowledge, this is the first case to be reported in the ophthalmology literature.5,6 Given the rising prevalence of self-reported Morgellons disease over the last decade, possibly related to discussion of the disease on the internet, ophthalmologists should be aware of this syndrome, its presentation, and its differential diagnosis. This Health Insurance Portability and Accountability Act-compliant case report was exempt from institutional review board review and was performed in accordance with the tenets of the Declaration of Helsinki.
CASE REPORT A 65-year-old Caucasian woman was referred to the Oculofacial Plastic and Reconstructive Surgery service for evaluation of left lower eyelid ectropion. She reported a history of Morgellons disease, without history of psychiatric disease or substance abuse. However, the patient’s chief complaint related to a lesion at her left medial canthus area that had been present Accepted for publication June 11, 2014. The authors have no financial or other conflicts of interest to disclose. *Casey Eye Institute, Oregon Health Sciences University, Portland, Oregon, U.S.A.; and *†Veterans Affairs Medical Center, Portland, Oregon, U.S.A. Address correspondence and reprint requests to Eric A. Steele, m.d., Casey Eye Institute, Oregon Health Sciences University, 3375 SW Terwilliger Ave, Portland, OR 97239-4197. E-mail: [email protected] DOI: 10.1097/IOP.0000000000000258
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
for at least 4 years. The patient reported that she had been diagnosed in the past with Morgellons syndrome. She complained of substances, described as “wormy things” and “creamy white stuff,” tracking over from her hair and various parts of her face, and emerging from the OS. She reported rubbing her eyes with a tissue and “trying to pull them out of her” due to the pain she felt that was caused at the left medial canthus. At 1 visit, the patient brought 2 small bags full of the substance, one of which is depicted in Figure A. She complained that this was the substance that was “hell bent on getting into the (left medial canthus) sore.” An attempt was made to submit the material in the bags for pathologic inspection, but it dissolved when placed in the formalin. The patient admitted that she often tried to treat the area with an antimicrobial cream, and it is presumed the whitish material represented the dried solution that she subsequently peeled off of her skin. A chart review showed multiple prior visits to other providers, including ophthalmology, dermatology, and the emergency room, with similar complaints. A physical examination revealed a 15 mm × 6 mm ulcerated lesion at the left medial canthus with a pearly appearing border (Fig. B). Multiple excoriations were noted on the forehead. The hair above her forehead appeared to have been shaved (Fig. C), and most of the cilia along her left lower eyelid were broken or removed. There was bilateral lower eyelid ectropion, worse on the left (Fig. D). Aside from a whitish, flaky material on her skin (Fig. C), no unusual fibers were seen on slit lamp examination. Given the concerning appearance of the left medial canthal lesion, biopsy was performed to rule out carcinoma. According to pathology report, the biopsy showed epidermal hyperplasia and fibrosis, suggestive of a traumatized seborrheic keratosis, without evidence of basal cell carcinoma or other malignancy. The authors felt that these findings were consistent with the patient’s self-excoriating behavior. Repair of the ectropion was deferred out of concern for wound dehiscence with the patient’s history of aggressively rubbing the eyelids. She was instructed to use maxitrol ointment over the lesion and to avoid manipulation of the area. She was referred to psychiatrist and dermatologist, but lost to follow up. The patient continued to experience symptoms, and returned to the oculoplastic surgery clinic 2 years later requesting that the medial canthus area, “including the sinuses,” be surgically removed to alleviate the problem. A physical examination showed numerous excoriations over the nose, cheeks, and forehead. The left medial canthus lesion had healed, and the lower eyelid ectropion had significantly improved. It was explained to the patient that there was no role for surgery in this situation, and the patient’s primary care provider was asked to help arrange a referral to Psychiatry and Dermatology.
DISCUSSION Morgellons disease began to enter the medical lexicon after 2002, when Mary Leitao, a former laboratory technician from Pittsburg, coined the term to describe multicolored fibers that she observed emerging from a wound on the face of her 2-year-old son. She subsequently contacted the Morgellons Research Foundation to investigate what her family felt was an infectious process that physicians had been unable to diagnose, garnering significant media attention and lobbying successfully for legitimate scientific study of the disease. Since then, the diagnosis of Morgellons disease has become increasingly prevalent, especially in California, Texas, and Florida.2 Patients typically complain of multicolored fibers emerging from nonhealing wounds, associated with itching,
e1
Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
Case Reports
A, A small bag full of what was most likely dried, flaked antimicrobial cream. The patient brought this bag into clinic, complaining that this substance was “hell bent on getting into” her left medial canthus sore. B, A close-up photograph of a 15 mm × 6 mm ulcerated lesion at the left medial canthus, with a pearly appearing border. Multiple excoriations are present above the brows. C, A photograph demonstrating broken hairs on the patient’s forehead consistent with shaving. Also note the whitish flaky material present on the forehead skin similar to what the patient had gathered and brought in plastic bags at her initial appointment. D, Bilateral lower eyelid ectropion, worse on the left. Also note the lesion in the left medial canthus and multiple excoriations above the brows.
biting, or crawling sensations of the skin. In the most comprehensive epidemiologic study to date, the Centers for Disease Control and Prevention found the prevalence of Morgellons disease to be about 3.65 per 100,000 people.1Most of those affected were middle-aged, Caucasian women. The majority of patients began to experience symptoms after 2002, roughly corresponding to the time when internet postings regarding Morgellons disease began to emerge. There is some evidence in the literature that Morgellons disease might be related to a spirochete infection, specifically Lyme disease.7,8 However, the Centers for Disease Control and Prevention found no such association with Lyme disease or several other known parasites and infectious entities. They found that most of the fibers were consistent with cotton or superficial skin, and that skin lesions were attributable to excoriation, solar elastosis, or other known entities. These findings would seem to support the theory that the unexplained dermatopathy known as Morgellons disease may represent a wider recognition of symptoms associated with delusional parasitosis. While Morgellons disease is typically considered to be within the realm of psychiatry and dermatology, the ophthalmologist also needs to be aware of the signs of this disorder. Patients with Morgellons disease may seek care from a number
e2
of different providers, including an ophthalmologist, in an attempt to gain relief and validation of their distressing symptoms.3 It is essential not to dismiss any skin lesion as benign without considering a thorough differential diagnosis, including carcinoma that may mimic the nonhealing wound of chronic self-excoriation. After proper evaluation of any skin lesions, the physician may want to consider what else he can do to ease patient suffering. Dermatology referral can be helpful in evaluation of any skin lesions that may be treatable. While delusional parasitosis is sometimes a stand-alone diagnosis, it is more often comorbid with other psychiatric disorders or it may be present as a symptom of a single broader diagnosis such as schizophrenia or psychotic depression.1,3,9 Therefore, the physician who encounters patients with Morgellons disease should work with the primary care provider to encourage a psychiatric evaluation, bearing in mind that many patients may be resistant to this idea. Although most providers consider Morgellons disease to be a subset of delusional parasitosis, some have suggested that using the term “Morgellons” with patients can be useful in enhancing patient rapport, given that many of these patients are frustrated by perceived dismissal of symptoms by physicians. Morgellons disease presents several challenges to ophthalmologists, one of which is a lack of understanding of this
© 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.
Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
Ophthal Plast Reconstr Surg, Vol. XX, No. XX, 2014
increasingly prevalent disorder. Equipped with knowledge, and through cooperation with other providers, the ophthalmologist can help to provide the best possible care for patients with Morgellons disease.
REFERENCES 1. Pearson ML, Selby JV, Katz KA, et al.; Unexplained Dermopathy Study Team. Clinical, epidemiologic, histopathologic and molecular features of an unexplained dermopathy. PLoS One 2012;7:e29908. 2. Savely VR, Leitao MM, Stricker DRB. The mystery of Morgellons disease: infection or delusion? Am J Clin Dermatol 2006;7:1–5. 3. Foster AA, Hylwa SA, Bury JE, et al. Delusional infestation: clinical presentation in 147 patients seen at Mayo Clinic. J Am Acad Dermatol 2012;67:673.e1–10.
Case Reports
4. Vila-Rodriguez F, Macewan BG. Delusional parasitosis facilitated by web-based dissemination. Am J Psychiatry 2008;165:1612. 5. Grosskopf C, Desai B, Stoopler ET. An oral ulceration associated with Morgellons disease: a case report. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2011;112:e19–23. 6. Bhandary SK, Peter R, Bhat S. Delusional parasitosis in ENT. Indian J Otolaryngol Head Neck Surg 2008;60:387–9. 7. Middelveen MJ, Stricker RB. Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease. Clin Cosmet Investig Dermatol 2011;4:167–77. 8. Savely VR, Stricker RB. Morgellons disease: analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology. Clin Cosmet Investig Dermatol 2010;3:67–78. 9. Murase JE, Wu JJ, Koo J. Morgellons disease: a rapport-enhancing term for delusions of parasitosis. J Am Acad Dermatol 2006;55:913–4.
© 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc.
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Copyright © 2014 The American Society of Ophthalmic Plastic and Reconstructive Surgery, Inc. Unauthorized reproduction of this article is prohibited.
