Delusions
of Parasitosis versus Morgellons Disease: Are They One and the
Same?
By
Ginger Savely, RN, FNP-C and Mary Leitao, Director of the Morgellons
Foundation
(www.morgellons.org)
This
article will be published in ADVANCE for Nurse Practitioners
Primary
Author:
Ginger Savely, FNP-C
South Austin Family Practice Clinic
4534 Westgate Blvd Suite 108
Austin, TX 78745
Fax: (512) 899-8460
Email: savely@austin.rr.com
Ginger
Savely is a family nurse practitioner working in a family practice
clinic in Austin, Texas. She has bachelors degrees in both Psychology
and Nursing and graduated summa cum laude in her nursing class
at the University of Texas where she was named Outstanding Graduating
Senior. She has masters degrees in both education and nursing.
Ginger has a special interest and training in the treatment
of tick-borne diseases and is recognized nation-wide for her
work in this area. She is a member of ILADS, a prestigious group
of world experts on the treatment of Lyme and other tick-borne
diseases. Ginger was honored by her peers by being selected
to receive the 2004 Texas Nurse Practitioner of the Year Award.
Secondary
Author:
Mary M. Leitao, BS
Executive Director Morgellons Research Foundation
101 Cedar Brook Ct McMurray, PA 15317
Email: morgellons@aol.com
Mary
Leitao is the founder and Executive Director of the Morgellons
Research Foundation. This foundation is dedicated to her six
year old son, Drew who has Morgellons Disease. She graduated
Magna Cum Laude from the University of Massachusetts at Boston
with a BS in Biology. She has worked at Massachusetts General
Hospital and the University of Massachusetts Medical Center
as an Electron Microscopist and an Immunohistochemist.
Introduction:
Delusions
of Parasitosis (DOP), also know as Delusional Parasitosis (DP),
or Eckbom’s Syndrome, is a psychiatric disorder in which
patients mistakenly believe they are infested with a parasite.[1,2]
When two people both describe symptoms of DP, the condition
is termed Folie à deux (madness of two).[3] There is also Folie
à trios (madness of three), and Folie à quatre (madness of four).
Delusional Parasitosis affecting all members of a family is
considered Folie à Famille (madness of family).[4]
Patients
often refuse to accept a psychiatric diagnosis for their skin
symptoms and findings, continuing to insist they are infested.
In medical school, physicians learn of the “matchbox sign”
of DP, so-called because patients carry samples of “hair,”
“lint,” or “fuzz” to the physician in a
matchbox, in a desperate attempt to provide evidence of the
agent responsible for their torment. Antipsychotic medications
such as Pimozide (Orap) are often prescribed for these patients.[5]
The
Problem:
The philosopher
Thomas Kuhn proposed that scientific communities operate within
a rigid set of assumptions and therefore are not susceptible
to a paradigm shift when confronted by an anomaly.[6]
In medicine we form differential diagnoses based on what we
already know and when unusual symptoms do not fall within those
boundaries we doubt both the symptoms and the patient. Suppose
that we in the medical world are overlooking an important and
previously unrecognized skin condition, dooming patients to
unending frustration and suffering by not validating or attempting
to treat a devastating infection? The few medical professionals
who have become involved with the diagnosis and treatment of
this disorder are becoming increasingly convinced that these
patients have been unfairly treated and are actually suffering
from a puzzling disease, which causes horrific symptoms and
psychiatric sequelae in some individuals.
I first
began seeing patients with symptoms of DOP in my clinical practice
in 2002, when several patients with chronic, debilitating illnesses
alerted me to their non-healing skin lesions. These patients
also experienced crawling and stinging sensations under the
skin, as well as the presence of fiber-like strands and granule-like
objects associated with skin lesions. With a hand-held digital
microscope I was able to visualize a network of blue fibers
under the skin of these patients, as well as blue and white
fibers protruding from their lesions. On several occasions I
attempted to remove the tough white filaments that I saw protruding
from the lesions, and found these to be quite resistant to extraction.
A colleague
informed me that the Morgellons Research Foundation had described
a disease matching what I had observed in my patients. I contacted
the foundation and was informed that my state, Texas, was second
only to California, in the number of reports of this bizarre
disease, which they had chosen to call Morgellons Disease.
History:
The name
“Morgellons Disease” was based on a disease described
in the 1600s by Sir Thomas Browne. Dr. Michel Ettmuller’s
later microscopic drawings of objects, associated with what
was then believed to be a worm infestation of children, appear
similar to microscopic views of fibers from present-day sufferers
of this disease.[7]
The Morgellons
Research Foundation began accepting registrations from people
with symptoms of this unrecognized disease in 2002. The original
focus of the foundation was on skin symptoms, but it soon became
evident that other consistencies within this patient group,
such as disabling fatigue, life-altering cognitive decline,
joint pain, and mood disorders, were of much greater concern.
Symptoms:
Patients
with Morgellons Disease typically have symptoms which include
insect-like sensations: i.e. crawling, stinging, and biting
sensations, as well as skin lesions, which can be minor to disfiguring
in their appearance. Fiber-like material can often be removed
from skin lesions as either single strands or what appear to
be balls of wound fibrous material. Patients frequently describe
this material as “fibers,” “fiber balls,”
or “fuzz balls.” Granules removed from the skin of
patients can often be seen microscopically to have one or more
fibers attached at the ends. Patients often describe these granules
as “seeds,” “eggs,” or “sand.”
Many individuals report material described as “black specks,”
or “black oil.” Some patients have no observable skin
lesions, and have intact skin, with the skin sensations and
fibrous, granular or black material being the only visible indicator
of this disease.
According
to statistics from the Morgellons Foundation, the majority (95%)
of patients report symptoms of disabling fatigue and self-described
“brain fog,” or problems with attention. Patients
report a high incidence (50%) of Fibromyalgia, joint and muscle
pain, as well as sleep disorders. Other symptoms reported frequently
are hair loss, rapid visual decline, neurological disorders
and occasionally teeth which, despite the lack of caries or
gingivitis, appear to disintegrate. Most patients are unable
to continue working, and those who do work report that they
do not function optimally.
The vast
majority of patients with this disease have been diagnosed with
a psychosomatic illness. Typically, patients have sought help
from between ten and forty physicians and report that their
symptoms are not taken seriously. Patients report that physicians
do not even do a thorough exam but make an instant diagnosis
of DOP, and attribute the obvious open sores on patients’
skin as attempts at self-mutilation. One patient described his
experience with this disease in this way: “I have had this
disease for twenty years. I spent the first ten years going
from doctor to doctor for help. I spent the last ten years just
living with it, knowing that no one would ever help me.”
The high
incidence of psychopathology, which appears to be directly attributable
to this disease, confounds the clinical picture for these patients,
as they seek validation for an insidious infectious disease
that defies logic, while sometimes exhibiting obvious symptoms
of mental illness. It appears that the underlying infectious
disease, which has been unrecognized and untreated, can cause
psychopathology in many patients.
Epidemiology
and transmission:
The states
of California, Texas and Florida appear to have the highest
number of reports of this disease, with primary clusters noted
in Los Angeles, San Francisco, Houston, Dallas, and Austin,
Texas. All fifty states and fifteen nations, including Canada,
the UK, Australia and the Netherlands report cases of Morgellons.
The total number of registrations to the Morgellons Research
Foundation website is presently 1200, which is believed by the
foundation to be a fraction of the actual number of cases.
The two
main occupational groups reporting symptoms of Morgellons are
nurses and teachers. Nurses outnumber teachers 3:1, but both
occupational groups represent a significant percentage of patients
with this disease. It is unclear what the risk factors for these
two occupational groups might be, but the possibility of casual
transmission of infectious agents has been entertained.
There is
some evidence to suggest that skin lesions and fibers may not
be readily apparent on all individuals with this disease, as
family members of patients often report similar systemic disease
symptoms, without skin symptoms. Whether the disease is transmissible
by human contact remains unclear. Although most sufferers are
fearful of infecting family members, families where all are
affected are ones where simultaneous mutual exposure is suspected.
Patients
have also reported symptoms of this disease in their pets. The
majority of reports involve dogs, but cats appear to be increasingly
affected. There have also been recent reports of horses with
skin lesions fitting the description of Morgellons lesions.
Several horse owners have observed fibers associated with skin
lesions on their animals, by using lighted 30x handheld microscopes.
Pathophysiology:
what little we know
Skin biopsies
of patients typically reveal nothing specific, or describe an
inflammatory process with no observable pathogens. Several biopsies
have shown fibrous material along with skin tissue. In general,
pathologists are looking for signs of known diseases, and thus
may miss clues of this disease in biopsies.
There is
preliminary information that the fibers are made of cellulose,
but this information has neither been formally studied, nor
confirmed. Studies by Hall, et al identified fibers, composed
of a cellulose-protein complex, as a minor constituent of mammalian
connective tissue. Hall found increased amounts of these fibers
in tissue from patients with Scleroderma and other pathological
skin conditions.[8]
Co-infection
of Lyme Disease?
Many patients
with Morgellons Disease have positive Western Blots for Borrelia
burgdorferi, the causative agent of Lyme Disease. It appears
that there may be a connection between the two infectious diseases,
with one agent possibly predisposing the individual to the second
agent. Whether all patients with Morgellons Disease also have
Lyme borreliosis remains to be seen. There is some recent information
that the fibrous, and other, material associated with skin lesions
may be caused by an unknown viral agent or agents.
What
next?
Until a
formal study of Morgellons Disease is instituted, the cause,
transmission, and treatment of this disease are uncertain. The
Texas Department of Health (TDH) was alerted by the foundation
to the occurrence of this disease in Texas first in 2002. The
TDH dialogued with the Executive Director of the foundation
in 2004, at which time the TDH conferred with the CDC (Centers
for Disease Control and Prevention). To date, neither the TDH
nor the CDC has initiated a program or study to investigate
this disease. As the number of documented cases rises, it is
the hope of the authors that governmental health authorities
will begin to take note and support investigation into the cause
and epidemiology of the disease.
I now have
25 patients in my practice that fit the criteria for Morgellons
disease. These patients have come to me from all over the state
of Texas, desperate for answers and willing to go anywhere to
be treated with dignity and taken seriously. I continue to be
impressed with the consistency of their stories. All but one
of these patients have tested positive for Lyme borreliosis
by Western Blot through IGeneX Laboratories in Palo Alto, California.
When I treat these patients with antibiotics for their Lyme
disease, I am seeing remission in Morgellons symptoms in most.
The Hungarian
physician, Ignaz Semmelweiss, was ridiculed in the 1850’s
in Vienna for suggesting that childbed fever was caused by an
infectious agent. Syphilis patients were put in straight jackets
in mental institutions before it was realized that they were
suffering from an infectious disease. Throughout history the
medical world has been reluctant to adopt new paradigms, or
conceptions, of disease. We must strive to look beyond what
we have been taught when confronted with new and puzzling symptoms
in patients. Rather than being quick to pigeonhole these patients
into a psychiatric diagnosis, we owe it to them to take their
complaints seriously and investigate the cause of their symptoms.
Sir William
Osler, one of the greatest physicians, humanitarians and teachers
of the 19th century taught that “Medicine is learned by
the bedside and not in the classroom.” Recognition of Morgellons
disease will serve as a reminder to us in the medical world
that we have much to learn by really listening to the patient.
References:
- Ait-Ameur,
A, Bern, P, Firoloni, M. P, Menecier, P. Delusional parasitosis
or Ekbom’s syndrome. La Revue de Medecine Interne. 2000;
21:182-186.
- Koo
J, Lee CS. Delusions of parasitosis. A dermatologist’s
guide to diagnosis and treatment. Am J Clin Dermatol 2001;2:285-90.
- Bourgeois
ML, Duhamel P, Verdoux H. Delusional parasitosis: folie a
deux and attempted murder of a family doctor. Br J Psychiatry
1992;161:709-711.
- Daniel
E, Srinivasan TN. Folie a Famille: Delusional parasitosis
affecting all the members of a family. Indian J Dermatol Venereol
Leprol 2004;70:296-297.
- Koo
J, Gambla C. Delusions of parasitosis and other forms of monosymptomatic
hypochondriacal psychosis. General discussion and case illustrations.
Dermatol Clin. 1996 Jul;14(3):429-38.
- Kuhn
TS. The Structure of Scientific Revolutions. 2nd ed. Chicago:
University of Chicago Press; 1970.
- Kellett
CE. Sir Thomas Browne and the Disease Called the Morgellons,
Annals of Medical History, n.s., VII 1935; 467-469
- Hall
DA, et al. Oriented Cellulose as a Component of Mammalian
Tissue. Proceedings of the Royal Society of London. Series
B, Bological Sciences, 1960. 151 (945): 497-516.
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