morgellons: disease or delusions?

2
Perspectives in Psychiatric Care Vol. 43, No. 2, April, 2007 67 Blackwell Publishing Inc Malden, USA PPC Perspectives in Psychiatric Care 0031-5990 © 2007 Blackwell Publishing Ltd. ?? 2007 43 2 EDITORIAL Editorial Editorial Editorial Morgellons: Disease or Delusions? Is Morgellons a disease or a state of mind? Patients say it is an infection and they need medical treatment for the disturbing symptoms. Some dermatologists contend it is a case of delusional parasitosis, and the antipsychotic Orap relieves symptoms (Healy, 2006). Other physicians believe that the patients’ wounds are self-inflicted. Either way, Morgellons disease has recently become a media headliner for TV, newspapers, and the Internet. The cause of Morgellons disease is currently a medical mystery. After several requests to the Centers for Disease Control and Prevention (CDC) by patients and politicians, the CDC initiated an investi- gation for potential causes in January 2006. Public health officials hope to rule out some unseen environmental toxin or new strain of infection. The epidemiologic investigation includes examining patients and collect- ing and analyzing tissue samples and strange fibers that seem to emerge from the flesh. Symptoms The symptoms of Morgellons read like horrifying science fiction that is not real or possible. Ask 46-year- old Donna Grace about her symptoms and she will tell you that they began in 2002 after receiving a flu shot and the injection site developed an infection. Itching and crawling sensations under her skin began and would not abate no matter what she did. In July 2006, Grace says she felt a mass rumbling beneath her scalp and a few weeks later she felt a hatching of hundreds of thousands of tiny bugs that crawled around her head and down her back. “I felt like I was going crazy, and I knew I wasn’t” (Healy, 2006, p. F8). Individuals with this disease report disturbing sensations of bugs or worms crawling, stinging, and biting as well as nonhealing skin lesions, rashes, and wounds. “I am not crazy,” patients proclaim when describing symptoms of fiber-like fila- ments that emerge from the flesh and the presence of black speck-like material and crystal-like granules under the skin. Nearly all people with this illness also report extreme difficulty with mental concentration and short- term memory. Patients often suffer chronic fatigue and what appear to be symptoms of depression, obsessive– compulsive disorder (OCD), and attention deficit dis- order (ADD) (Morgellons Research Foundation, 2006). Is It Delusional Parasitosis? As in the DSM-IV-TR (APA, 2000) Delusional Dis- order criteria, Morgellons patients are functioning in society, have no obvious signs of mental illness, and appear to have a nonbizarre somatic delusion. Many dermatologists say patients have been complaining of these symptoms for years and it is a dreadful, painfully real delusion. What are new are the name Morgellons and the online community that has developed and reinforces the reality of this psychotic condition (Healy, 2006). The prevailing conviction among most dermatologists that this is a delusion rather than a real disease results in patients not being taken seriously and further investiga- tion being neglected. The physician fears reinforcing and making the patient’s delusion worse. Adding to the con- fusion is that over half of all individuals with Morgellons disease also suffer from mood disorders such as depression and bipolar disorder. It is estimated that 65% of children with Morgellons have some form of psychiatric illness such as attention deficit/hyperactivity disorder, oppositional defiant disorder, mood disorders, or autism (Morgellons Research Foundation, 2006). Dermatologist Mark Horowitz has treated patients with these symptoms for over 30 years and believes they have a “psychological disorder that’s very limited in its spectrum” (Healy, 2006, p. F8A). Horowitz says that the recent upsurge in the disease and all the media attention can be directly traced to the Internet and information circulating widely online. Web sites have become a meeting place for patients who cannot find adequate medical help and turn to others with the same symptoms in hopes of finding relief from the nightmarish disease. Sociologist Robert Bartholomew, with the Australian government, says that the World Wide Web has become the incubator for mass delusion and it seems to be a socially transmitted disease over the Internet (Healy).

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Page 1: Morgellons: Disease or Delusions?

Perspectives in Psychiatric Care Vol. 43, No. 2, April, 2007 67

Blackwell Publishing IncMalden, USAPPCPerspectives in Psychiatric Care0031-5990© 2007 Blackwell Publishing Ltd.?? 2007432

EDITORIAL

EditorialEditorial

Editorial

Morgellons: Disease or Delusions?

Is Morgellons a disease or a state of mind? Patients sayit is an infection and they need medical treatmentfor the disturbing symptoms. Some dermatologistscontend it is a case of delusional parasitosis, and theantipsychotic Orap relieves symptoms (Healy, 2006).Other physicians believe that the patients’ wounds areself-inflicted. Either way, Morgellons disease has recentlybecome a media headliner for TV, newspapers, and theInternet. The cause of Morgellons disease is currentlya medical mystery. After several requests to theCenters for Disease Control and Prevention (CDC) bypatients and politicians, the CDC initiated an investi-gation for potential causes in January 2006. Public healthofficials hope to rule out some unseen environmentaltoxin or new strain of infection. The epidemiologicinvestigation includes examining patients and collect-ing and analyzing tissue samples and strange fibersthat seem to emerge from the flesh.

Symptoms

The symptoms of Morgellons read like horrifyingscience fiction that is not real or possible. Ask 46-year-old Donna Grace about her symptoms and she will tellyou that they began in 2002 after receiving a flu shotand the injection site developed an infection.

Itching and crawling sensations under her skin beganand would not abate no matter what she did. In July 2006,Grace says she felt a mass rumbling beneath her scalpand a few weeks later she felt a hatching of hundredsof thousands of tiny bugs that crawled around her headand down her back. “I felt like I was going crazy, and Iknew I wasn’t” (Healy, 2006, p. F8). Individuals with thisdisease report disturbing sensations of bugs or wormscrawling, stinging, and biting as well as nonhealing skinlesions, rashes, and wounds. “I am not crazy,” patientsproclaim when describing symptoms of fiber-like fila-ments that emerge from the flesh and the presence ofblack speck-like material and crystal-like granules underthe skin. Nearly all people with this illness also reportextreme difficulty with mental concentration and short-term memory. Patients often suffer chronic fatigue and

what appear to be symptoms of depression, obsessive–compulsive disorder (OCD), and attention deficit dis-order (ADD) (Morgellons Research Foundation, 2006).

Is It Delusional Parasitosis?

As in the

DSM-IV-TR

(APA, 2000) Delusional Dis-order criteria, Morgellons patients are functioningin society, have no obvious signs of mental illness, andappear to have a nonbizarre somatic delusion. Manydermatologists say patients have been complaining ofthese symptoms for years and it is a dreadful, painfullyreal delusion. What are new are the name Morgellons andthe online community that has developed and reinforcesthe reality of this psychotic condition (Healy, 2006). Theprevailing conviction among most dermatologists thatthis is a delusion rather than a real disease results inpatients not being taken seriously and further investiga-tion being neglected. The physician fears reinforcing andmaking the patient’s delusion worse. Adding to the con-fusion is that over half of all individuals with Morgellonsdisease also suffer from mood disorders such asdepression and bipolar disorder. It is estimated that65% of children with Morgellons have some form ofpsychiatric illness such as attention deficit/hyperactivitydisorder, oppositional defiant disorder, mood disorders,or autism (Morgellons Research Foundation, 2006).

Dermatologist Mark Horowitz has treated patientswith these symptoms for over 30 years and believesthey have a “psychological disorder that’s very limitedin its spectrum” (Healy, 2006, p. F8A). Horowitz saysthat the recent upsurge in the disease and all the mediaattention can be directly traced to the Internet andinformation circulating widely online. Web sites havebecome a meeting place for patients who cannot findadequate medical help and turn to others with thesame symptoms in hopes of finding relief from thenightmarish disease. Sociologist Robert Bartholomew,with the Australian government, says that the WorldWide Web has become the incubator for mass delusionand it seems to be a socially transmitted disease overthe Internet (Healy).

Page 2: Morgellons: Disease or Delusions?

68 Perspectives in Psychiatric Care Vol. 43, No. 2, April, 2007

Editorial

Is It a Disease?

The more than 5,000 sufferers of this malady believethat there is a new type of infection caused by a parasite,a worm, or a virus, and its source is still unknown. Morgel-lons disease is also referred to as the fiber disease andis, as yet, unrecognized by the medical community. Fibersare reported in and on skin lesions and are usuallywhite, but clinicians also report seeing blue, green, red,and black fibers that fluoresce when viewed underultraviolet light. As many as 94% who have Morgellonsalso test positive for Lyme disease (Morgellons ResearchFoundation, 2006). Preliminary evidence suggests thatMorgellons disease is not delusions of parasites, accordingto Randy Wymore (2006), assistant professor of pharma-cology and physiology, who has taken on the researchchallenge of Morgellons in his academic research.Wymore empathizes with the patients and believes thathe and his team will find the etiology that will hopefullylead to successful treatment options. Dr. William Harveyof Houston (Fowler, 2004) says one parasite filament isconfirmed as the infectious yeast

Candida tropicalus

. Othersseem to be algae or mold, all common in moist areas.

Treatment

Very few medical practitioners recognize this diseaseor understand what the patients are going through.Today Ginger Savely, a nurse practitioner in San Franciscowho specializes in this disorder and Lyme disease, istreating Donna Grace, who lives in southern California.After treating about 100 patients with Morgellons disease,Savely has developed several cocktails of antibiotics,antifungal, antiparasitic medications, and herbal sup-plements. She has even tried light therapy (Savely &Leitao, 2005). Savely says, “Whatever is causing this isextremely resistant or very adaptable” (Healy, 2006, p. F8).Her protocols mostly provide symptomatic relief forall patients afflicted with the condition rather than apermanent cure. Aggressive, long-term antibiotic therapyhas provided significant symptom relief in chronic Lymepatients, and is also being used with Morgellons patients.

This seems to help some patients; however, if they arestopped the symptoms come back (Wymore, 2006).

Role of Psychiatric APRNs

It is important to note that a family nurse practitionerplays a significant role in treating Morgellons diseaseand providing real empathy toward a group of patientswho have few places to turn to except the Internet forunderstanding. As psychiatric nurses we need to be awareof this disease so we are not too quick to side with theskeptics just because the symptoms are bizarre, like somany delusional symptoms we see in the mentally ill.Even though there is no evidence yet of what causes thesestrange and unrelenting symptoms, the CDC and otherreputable scientists have taken on the challenge to uncoverthe mystery and provide answers for both patientsand providers of care. Attention needs to be drawn toMorgellons so physicians and nurses are informed andable to make accurate diagnosis the first time the patientshows up for help. When we simply dismiss patients’painful symptoms as delusional when there is no physicalevidence of fibers, granules, rashes, and unhealed wounds,we need to question our ability to shift our paradigmswhen reality challenges our educated beliefs. We needto be willing to believe in the unbelievable when itpresents itself to us in the form of a suffering human beingwho has come to us for help with strange symptoms.

Mary Paquette, PhD, APRN-BC

[email protected]

References

American Psychiatric Association. (2000).

Diagnostic and statistical manualof mental disorders

(4th ed., text revision). Washington, DC: Author.Fowler, J. (2004). Segment 2: Mysterious parasite striking bay area

residents. KTVU—FOX. San Francisco, CA April 30, 2004. RetrievedJanuary 2, 2007, from http://www.ilads.org/mysterious_parasite.htm

Healy, M. (2006, November 13). Disease: Real or state of mind?

LosAngeles Times

,

Health Section

, pp. FA, 8A.Morgellons Research Foundation. (2006).

Case definition

. RetrievedDecember 21, 2006, from http://www.morgellons.org/

Savely, G. R., & Leitao. M. (2005). Skin lesions and crawling sensations:Disease or delusion?

ADVANCE for Nurse Practitioners

,

May

, 16–17.Wymore, R. (2006).

Morgellons research

. Retrieved December 21, 2006, fromhttp://www.healthsciences.okstate.edu/morgellons/research.cfm