Unexplained Dermopathy (Morgellons Disease)-The role of the intergrated psychocutaneous team to improve outcomes



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Morgellons SyndromeDi: Psychodermatology professionals and other healthcare disciplines working together a multidisciplinary approach may improve patient outcomes.

Dr Padma Mohandas 1, Dr Anthony Bewley ,1, 2 Dr Ruth Taylor ,2 Dr Reena Shah, 1,2



1Department of Dermatology, Whipps Cross University Hospital, London E11 1NR

2Department of Dermatology, The Royal London Hospital, London, E1 1BB

Background

In recent years healthcare professionals have reported an increase in the number of patients claiming afflictions of the skin with small fibres or other particles. Patients have described stinging, burning or crawling sensations of the skin, many with perceived extrusion of inanimate material. It has also been found that these patients often experience significant morbidity and reduction in quality of life. The condition described above is now referred to and generally known as Morgellons syndromedisease although this is not a formally recognised medical or psychiatric diagnosis. The descriptive term, “unexplained dermopathy” has also been suggested as a neutral, non-judgemental rapport-enhancing term.


Objectives

The study explored various clinical presentations, management strategies and outcomes employed over a period of time to treat Morgellons Disease more effectively and using resources efficiently.


Methods

The medical case notes of 29 patients were reviewed. These were patients that had presented at the Royal London Hospital, London between January 2003 and June 2015 who had been referred for treatment to the Multidisciplinary Psychodermatology Clinic.


Results

The majority of patients identified with the condition were women 71.4%, with a mean age of 54.6 years (26-80 years). Most, (71.4%) were living alone. The average duration of illness prior to presentation was 3.8 years (4 months-20 years). Many patients had precipitating factors (16) and often self-diagnosed (9). Psychiatric co-morbidities included 42.8% with depressive symptoms and 25 % with anxiety states. Substance misuse history was elicited in four patients. Treatment of patients by healthcare professionals included both the management of skin disease and the psychosocial co-morbidities. Out of 29 patients who attended the clinic, 13, 46.4% cleared or showed significant improvement. Thirteen patients were stable and under review. Of the remaining 3 patients, 1 patient declined treatment, 1 did not attend review and 1 died from a condition thought to be unrelated to her skin problem.


Conclusions

Morgellons Disease is a condition that is widely discussed via the Internet and other forms of social media and patients often self-diagnose their condition. The course of the disease may be chronic and debilitating. For a positive outcome, it is important that a strong physician/patient relationship is cultivated. It is demonstrated in this case study that robust arrangements employed to manage patient symptoms using a multidisciplinary team within a dermatology setting improves outcomes.



What is already known about Morgellons Disease?

  • It is rare and a chronic and debilitating disease for sufferers.

  • It is widely discussed on the Internet and other forms of social media and that many patients have self-diagnosed on presentation to healthcare professionals.

  • Patients with Morgellons Disease feel isolated from health care professionals.


What does this study add?

  • Healthcare professional must keep an open mind as to the aetiology of the condition.

  • The condition, in the majority of patients, will clear or improve significantly if a holistic multidisciplinary approach is used in treatment

  • Effective treatment includes concurrent skin treatment as well as and the psychosocial co-morbidities.

  • Low dose antipsychotics should be considered to treat the cutaneous sensations, which are a disabling symptom for Morgellons patients.


Introduction

Morgellons Disease is a poorly understood illness(1). The term Morgellons first became public via the internet in 2002(2). The “index” case was a child in the US with Atopic Dermatitis whose mother noticed fibres extruding from her son’s inflamed cheeks. The child was seen by numerous dermatologists and paediatricians without a meaningful diagnosis being reached. The mother, a biology graduate, undertook research and favoured the description of childhood cases that Sir Thomas Browne had seen in France (1674)(3), hence the term Morgellons. The word “Morgellons” appears to be derived from the Latin term “Morbus Pilaris” or sick hair and “Mafquelon”, French for a hook attached to a spindle.


Morgellons Disease can be associated with other psychosocial co-morbidities, including depression, bipolar disorder, schizophrenia and substance abuse(4). It has also been reported to have links with other illnesses including chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, obsessive compulsive disorder and those conditions, which can cause itching such as renal failure, lymphoproliferative disorders and psoriasis(5). There is a scarcity of literature and case study evidence of Morgellons Disease due to its relatively recent description in modern medical literature. This could be due to diagnostic uncertainties and a lack of understanding of the condition from health care professionals. Most patients would have usually seen at least three or four clinicians before they reach an appropriate service. Many patients are referred on the basis of their own efforts to reach a satisfactory diagnosis. In our case series a significant proportion (32.1%) attended clinic with information either from the Internet (24.1%), social media discussions or from articles in newspapers or other publications (6.9%). A seminal study was conducted to establish potential aetiology by Pearson et al(6) in 2012, which found no objective evidence of infestation in patients with Morgellons Disease. However , the results of the study have been disputed by patient organisations and others. Recently a study by M. Middelveen et al (2015) reported a strong association between Morgellons Disease and Borrelia spirochetes(7). We maintain an open mind approach, and believe that this is essential as, to date, there is no proven association with any particular infection or infestation and the subsequent development of Morgellons Disease the cohort of patients studied on this occasion.
Patients and methods

We conducted a retrospective study of the case notes of 29 patients seen in the specialist integrated Psychodermatology Clinic at the Royal London Hospital, London over a twelve-year period from January 2003 to June 2015. The presenting symptoms, demographics and co-morbidities were analysed and the resulting clinical outcomes were examined.


Results:

The majority of patients were women 71.4% (20/28) with a Female: Male ratio of 2.5:1. Their ages ranged from 26-80 years with the average being 54.6 years. The majority (68.9%), were living alone and single (60.7%), widowed (10.7%) or divorced (3.5%). 27.5% were in relationships as either married or cohabiting relationships. The duration of illness before attending the Clinic varied from 4 months to 20 years, the average being 3.8 years. This is in keeping with other case studies(7). Patients often had a clear precipitating illness prior to the onset of their Morgellons (see Table 1) which may indicate that stressful life events may be relevant in the generation of the disease.


Symptoms vounteeredshown by patients on presentation were a history of;, extrusion of fibres (including threads and hairs, see figure 1.1 & 1.2) from the skin (64.3 %), fungus (10.7%), dust (7.1%), bugs (3.5%), grains (3.5%), black dots (3.5%) and parasites (7.1%) all emerging from the skin. Six experienced odd sensations of “candle wax under the skin” (1), stinging (1) and movement under the skin (4). 20% believed that the cause was infectious(fungus, bugs or parasites) and so could be classified in the delusional infestation spectrum which many authors believe overlaps with Morgellons aetiologically. Two patients experienced both sensations of crawling bugs and extrusion of material from their skin. Psychiatric co-morbidities were common, 41.3% (12) had a diagnosis of depression and 24 % (7) anxiety. This is markedly above the national average of 19% and 16.6% respectively(8). A history of substance misuse was elicited in four (13.7%) patients. This may be relevant as taking certain drugs or withdrawing from them, particularly opiates and amphetamines can cause atypical cutaneous sensations. One patient had a peripheral neuropathy under the care of the neurologists and another had suffered an intracranial haemorrhage prior to onset of Morgellons Disease. This suggests a possible organic neurological link in these patients.
It is interesting to note that 2 of the 3 patients had partners who developed similar symptoms. However, on close questioning those partners were clear in their responses that they experienced ‘contamination’ or being ‘affected’ rather than ‘infected’ or ‘actively invaded’ by the perceived fibres from our patients.
All patients involved in the investigation had relevant swabs or scrapings of the skin or bodily fluid for bacteriology /mycological/parasitic infection. The results in all patients were negative for infectious agents or parasites. The results in 10 patients for the presence of Borrelia serology (ELISA) were negative.
Treatments included the use of an antiseptic wash/emollient (containing chlorhexidine) for all patients (even if no skin breaks – if so then I suggest no good clinical indication and one could suggest this is a form of collusion in my view), which we advised to use on all areas of the body on a once daily basis. This was well tolerated. Other topical treatments included emollient ointments and sprays for large affected areas, topical doxepin 5% cream and 2% ketoconazole shampoo for co-existing seborrhoeic dermatitis(table 1, figure 1.3). Phototherapy (TLO1) treatment was prescribed for itch symptoms in 48.2% (14/29) of patients. One patient declined this treatment because he felt he would not be able to attend review. The 13 patients who did continue with their treatment (twice weekly for 10 weeks, following initial MED testing and a typical psoriasis protocol, depending on skin type) responded well (figure 1.3). But, all patients treated with TL01 were concomitantly treated with ultra-low dose antipsychotic medication (see below) and emollient/antiseptic combinations. Systemic tetracyclines were given to 2 patients who had evidence of cutaneous bacterial infection (persistent crusting and weeping of the skin together with clinical evidence of acneiform lesions and/or folliculitis. Both patients had co-morbid depressive disease (diagnosed by a consultant liaison psychiatrist) and were treated with concomitant anti-depressants.
The most commonly prescribed medication to control sensations of itch, stinging, biting, burning and movement under the skin was Risperidone 51.7% (15/29). This treatment was prescribed for patients starting at 0.5mg and at an increased dosage according to the response. Olanzapine was also used as a similar indicative treatment in 10.3% (3/29) of patients. However, due to weight gain side effects of two patients the drug was switched to either Amisulpiride or Aripiprazole. In all, 18 patients were treated with antipsychotics in ultra-low dose (to control cutaneous symptoms), and of those, 10 (55.5%) showed resolution or near resolution of symptoms; the remaining 7 patients treated with ultra-low dose antipsychotic medication (38.8%) were found to have partly responded to treatment and are under review. Fluoxetine or Citalopram were used as a treatment in 8 (28.5%) patients diagnosed by a consultant liaison psychiatrist with co-morbid depression/anxiety. Other drugs or treatments which were tried according to patient symptoms, included Amitriptyline and Pregabalin.
Discussion

All patients were assessed by a Consultant Dermatologist and Consultant Liaison Psychiatrist at their first appointment, together with nursing colleagues, and, sometimes (needs to be clear how often), a clinical psychologist. The advantage of having psychiatric and psychological healthcare professionals in a dermatology setting is that holistic care can be offered to patients and any psycho-social co-morbidity are identified and treated concurrently. In our multidisciplinary model of care the dermatologist and psychiatrist are in the same consulting room with the patient(9). The Dermatology Nurse Specialist and other specialists are readily accessible and can be called upon to provide support if required. A non–confrontational approach by healthcare professionals in order to foster a positive relationship was crucial to the success of this approach. When laboratory tests did not show an identifiable infective source, we were very keen to validate the authenticity of patient skin sensations and physical signs. Patients with Morgellons disease, we found, had often been dismissed by health care professionals, and were very frustrated that their very clear physical symptoms and signs had not been taken seriously. Many of our patients reported that Health Care Professionals had not even examined their skin. In addition, many patients had gone to great lengths to research their condition. With regards to treatment, when prescribing anti psychotics, we are careful to explain that these medications were being used in ultra-low dose for dysaesthetic symptoms (rather than in anti-psychotic doses). In our series no patient responded to antibiotics in isolation, and patients whose disease successfully cleared or improved were all taking a concurrent combination of treatments for skin disease and psychosocial comorbidities.


The biopsychosocial impact of this condition must not be underestimated. Quite often the sensations reported and experienced by patients cause them considerable distress. The physical manifestations of excoriation due to skin sensations (biological effect), lead to patient self-consciousness and low self-esteem (psychological). This may result in relationship breakdown, loss of livelihood (social) and in turn lead to the exacerbation of underlying anxiety and depression(10). Morgellons Disease can overwhelm and debilitate a sufferer, underpinning the fact that a holistic multidisciplinary approach is crucial in managing the condition(11).
We found that combination therapy of ultra-low dose antipsychotics and TL01 was most beneficial to improve or stabilise symptoms (see fig 1.3). 13/29 or 44.8% of patients were managed in this way. Another group of patients (10/29) responded to low dose anti-psychotic/antidepressant therapy and topical antiseptics whilst 2 patients improved with the addition of oral antibiotics to this regime. One patient remains stable on topical therapy alone.
Tests for Borrelia spirochetes in our cohort were negative. However we recognise that other papers produced following studies have reported different results(12). It is noteworthy that no patient cleared with antibiotic therapy in isolation, rather it was a combination of topical, oral antipsychotics/anti-depressive agents, physical (TL01) and oral antibiotics which assisted our patients with their recovery.
Of the 29 patients who attended clinic (13) 44.8% showed a significant improvement in symptoms, which was evidenced by cessation of abnormal sensations on the skin. Thirteen patients were reviewed on a 3-6-month basis. Of all the therapeutic interventions our data demonstrated that a combination of topical antiseptic therapy, oral anti-psychotics and TL01 was the most beneficial (13/29). Topical antiseptics, low dose anti-psychotics/anti-depressants (10/29) were seen as an alternative treatment. Oral antibiotics were not used in isolation, although one patient was satisfied to continue with using topical anti-septics alone. Of the remaining three patients, one patient declined treatment but was recorded as a follow up, one patient died due to an unrelated illness and one did not attend her follow up appointment despite phone and text reminders inviting her to the Clinic.

Conclusions:

Morgellons disease is a condition which is widely discussed on the internet and other social media and patients often self-diagnose before presenting to a Dermatologist. Patients, when they present, are invariably armed with a list of potential causes and tests they require to be carried out. It is therefore the clinician’s duty to be appropriately informed regarding the condition and competent to conduct a conversation with the patients on the merits of their requests. The course of the disease is chronic and debilitating. For a positive outcome it is important therefore that a strong physician/patient relationship is cultivated. Our approach to address the physical and psychiatric aspects of Morgellons as demonstrated in this case series by using a multidisciplinary approach, has shown that managing patients in a specialist Psycho-dermatology Clinic setting improves outcomes compared to what???? – obviously better thatn a lone non-psychologically minded dermatologist but a lone psychologically-minded dermatologist may get similar or better outcomes – can only comment on what is found I suggest. Studies comparing outcomes with different approaches are desirable.




References:

1. Harvey WT, Bransfield RC, Mercer DE, Wright AJ, Ricchi RM, Leitao MM. Morgellons disease, illuminating an undefined illness: a case series. J Med Case Rep. 2009;3:8243.


2. L. M. Morgellons syndrome: a disease transmitted via the media (Article in French). Ann Dermatol Venereol. 2013;140(1):59–62.

3. Kellett CE. Sir Thomas Browne and the Disease called the Morgellons. Ann Med Hist. 1935;7:467–79.

4. 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.

5. Wallengren J, Dahlbäck K. Familial brachioradial pruritus. Br J Dermatol. 2005;153(5):1016–8.

6. Pearson ML, Selby J V., Katz KA, Cantrell V, Braden CR, Parise ME, et al. Clinical, epidemiologic, histopathologic and molecular features of an unexplained dermopathy. PLoS One. 2012;7(1).
7. Middelveen MJ, Bandoski C, Burke J, Sapi E, Filush KR, Wang Y, et al. Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients. BMC Dermatol [Internet]. 2015 Jan [cited 2015 Apr 20];15(1):1.
8. The Office for National Statistics Psychiatric Morbidity Report 2001.

9. Bewley A. WORKING PARTY REPORT ON MINIMUM STANDARDS FOR PSYCHODERMATOLOGY SERVICES 2012 Members of the Working Party Accessing Psychodermatology services. 2012.

10. www.morgellonsuk.org.uk.

11. Reichenberg JS, Michelle M. The Morgellons debate. In: Bewley A, Taylor RE, Reichenberg JS, Magid M, editors. Practical Psychodermatology. Wiley-Blackwell; 2014. p. 220–3.

12. Middelveen MJ, Burugu D, Poruri A, Burke J, Mayne PJ, Sapi E, et al. Association of spirochetal infection with Morgellons disease. F1000Research [Internet]. 2013;2:25.



Table 1-Patient perceived precipitating factors



Perceived precipitating factors

Number of patients

%




Infections










Fungal (Candida/Tinea)

3

10.7




Parasitic (Scabies/Lice)

4

14.2




Bacterial (Chest infection)

1

3.5




Travel to a developing country

2

7.1




Bereavement

2

7.1




Mechanical trauma (surgery/gardening)

3

10.7




Contamination (Genetically modified crops)
No clear cause

1
13

3.5
46.4





Table 1 Features of Morgellons patients seen at the Psychocutaneous clinic

Sex/Age/ Marital status

Duration of illness

Life events,

Trigger

Psychosocial factors

Treatment

Outcome

F/26/with partner

4 months

10-month old baby

Chest infection



Post-partum blues

Self-diagnosed –internet.



Quetiapine 400mg od

TLO1



Ongoing-stable

F/44/Single

12 months

Treated for fungal infections

In the past



Depression/

Anxiety


Self-diagnosed from the internet.


Fluoxetine 20mg od/Dermol 500 lotion/Risperidone 0.5mg od/Minocycline 100mg od

Improved

with RIFE machine

Discharged


M/45/Single

3 years

Nil elicited

Anxious /Low mood

Minocycline 100mg od

Citalopram 20mg od



Improved after 3months

F/45/

Married


5 years

Spinal surgery

Chronic pain



Depression

Risperidone 1mg od

TL01


Kelocote on lesions

Improved

Under review



M/47/Single

18 months

HIV+

Substance misuse

Alchohol dependency

Cervical disc disorder



Depression

Self-diagnosed-internet



Olanzapine 2.5mg od

Dermol 500



Improved under review.

F/47/Single

8 months

Iron deficient

Low mood
Self-diagnosed-internet

Risperidone 1mg nocte

Citalopram 40mg od

Dermol 500 as a wash


Ongoing-stable

M/48/with male partner-

both HIV ++who developed similar symptoms



7 months



Norwegian scabies

Substance abuse




Bipolar disorder

Poor concordance with medication



Olanzapine 15mg od

Dermol 500 as a

wash

Declined TLO1



(prev Rx with Permethrin and 4 course of Ivermectin –for scabies)

Improved and under review



F/48/

Widow


10 years

Intracranial bleed 1990s/

Epilepsy/

Psoriasis


Bereavement few months prior to referral.

Quetiapine 25mg bd

Paroxetine 40mg

Amitriptyline 10mg nocte

Zopiclone 7.5mg nocte

Topical Doxepin cream prn

TLO1


Ongoing -stable

F/48/Single

2 years

Nil elicited

Low mood

Hydroxyzine 25mg nocte

Citalopram 20 mg od



Under review stable

M/48/Single

12 months

Cannabis use

Severe Atopic eczema



Depression

Risperidone 1.5mg od

TL01 /CBT/

Clarithromycin 500mg bd


Improved

F/48/

Married


20 years

Morbid obesity-gastric banding

ME


Depression


Zopiclone 7.5mg nocte

Fluoxetine 40mg od



Under review

stable


F/49/Single

2 years

Possible bug infestation-house fumigated

Bereavement

Depression



Dermol 500

Fluoxetine 20mg od



Under review

stable


F/51/

Married


12 months

See below

Anxiety

Self-diagnosed –Daily Mail article.



Skin biopsy -neg

Citalopram 20mg od/Risperidone 0.5mg od

Dermol 500 lotion/TLO1

Pregabalin 200mg



Improved under review


M/52/

Married


12 months

Return from Thailand

Anxiety

Family problems

Self-diagnosed –Daily Mail article


Skin biopsy-negative

Risperidone 0.5mg od/TLO1

Dermol 500 lotion 2% Ketoconazole shampoo


Improved under review

F/55/Single

9 years

Small fibre

Neuropathy




Depression

Skin scrapings

Risperidone 1mg od –not tolerated

Olanzapine 2.5mg-wt gain

Aripiprazole 5mg od

Dermol 500 lotion

Pregabalin 25mg od

Diazepam 5mg nocte

Amitriptyline 25mg od

TLO1


Ongoing-stable


F/55/Single

5 years

ME

Amphetamine use



Anxiety/

Depression/

Suicidal

Self-diagnosed -internet



Risperidone 1mg od

Fluoxetine 20 mg od




DNA f/u

F/55/Single

12 months

Bipolar disorder

Spinal decompression

Chronic pain


Depression

Risperidone 1mg increased to 2mg daily after 3 months.

TLO1


Improved

and


discharged

M/57/Single

18 months

Nil elicited

Low mood

Risperidone 0.5mg od

Dermol 500

TL01


Improved

Under review



F/58/Single

6 months

Chronic pain due to endometriosis

Registered disabled


Risperidone 2mg od

Improved under review

F/58/Single

5 years

Nil

Low mood/

Depression



Olanzapine 5mg-wt gain/

Amisulpiride 50mg nocte/Dermol 500 as a wash /Synalar gel scalp/

TLO1


Improved under review

F/64/Widow

1 year

Bereavement of husband with cancer

Depression

Risperidone 1mg od/Pregabalin 100mg od /Dermol 500 lotion/TLO1


Ongoing -stable


F/64/Single

18 months

Infestation after gardening

Anxiety

Risperidone 1mg od/Emollin spray

Chlorhexidine mouth wash prn.

ongoing


Ongoing-stable

F/65/Single

12 months

? infestation cleared with Pest control

Nil elicited

Dermol 500

Betacap scalp solution



Under review

stable


F/67/

Divorce


20 years

Abusive marriage

Depression

Quetiapine 150mg od/Amisulpiride 5omg nocte

Citalopram 30mg



Improved under review


M/67/

Married


3 years

Contact with GM crops

Paranoid Schizophrenia

Self-diagnosed -internet



Declined medical intervention

Under review

stable


F/70y/Single

6 months

Stayed with a friend, patient’s sister also developed similar symptoms

Self-diagnosed on internet

Anxiety


Risperidone 0.5mg od,

Betacap scalp solution

Dermol 500 lotion


Under review

stable


M/70/

Married


3 years

Trauma to hand whilst gardening

Health anxiety

Intralesional steroid /TLO1/Risperidone 1mg nocte

Ongoing-stable

F/80/

Widow


1 year

Nil

No hx of depression or psychiatric illness.

Pregabalin 50mg bd/

Amisulpiride 50mg od/TLO1



Ongoing-stable



Figure 1.1-Sample of hair extruding from nasal cavity



Figure 1.2-Second sample from same individual

Fig 1.3 Flow diagram outlining management and outcomes.


Total number of

Morgellons patients*

n=29


straight connector 202

Other


n=3
straight connector 200 straight connector 201 straight connector 203

Stable


n=13

Improved /discharged n=13

N=

DNA-1


Declined Rx -1
straight connector 30 straight connector 209
Died -1


straight connector 31straight connector 193straight connector 197straight connector 198straight connector 205straight connector 206straight connector 210

Anti-psychotic and TL01-7



Anti-psychotic and TL01-6

Anti-psychotic or anti-depressant alone-6

Topical treatment only -1

Anti-psychotic or anti- depressant alone-4



Anti-psychotic /anti-depressant and oral antibiotic-2


*All patients were given topical therapy with an antiseptic wash (an emollient containing chlorhexidine).
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