“I would lay in the bed and it felt like an army of ants
just crawling over the bed, all over my body”
(Anonymous Patient)
About Morgellons
Disease
What sounds like a science fiction horror movie is actually
real life for the unlucky people who have contracted the disease which leaves
painful sores all over the body. The sores ooze blue fibers, white threads and
little black specks of sand-like material. The worst part, patients say, is the
creepy and constant sensation of bugs crawling under their skin.
History of Disease
In 2001, according to Mary Leitao, her then
two-year-old son developed sores under his lip and began to complain of
"bugs." Leitao, who graduated with a Bachelor of Science in
Biology and worked for five years at Boston hospitals as a lab technician
before becoming a stay-at-home mother, says she examined the sores with her
son's toy microscope and discovered red, blue, black, and white fibers.
She states that she took her son to see at least eight
different doctors who were unable to find any disease, allergy, or anything
unusual about her son's described symptoms. Fred Heldrich, a Johns
Hopkins pediatrician with a reputation "for solving mystery
cases," examined Leitao's son. Heldrich found nothing abnormal about
the boy's skin, wrote to the referring physician that "Leitao would
benefit from a psychiatric evaluation and support," and registered his
worry about Leitao's "use" of her son.
Leitao says that her son developed more sores, and more
fibers continued to poke out of them. She and her husband, Edward Leitao,
an internist with South Allegheny Internal Medicine in Pennsylvania , felt their son suffered from
"something unknown." She chose the name Morgellons
disease from a description of an illness in the monograph A
Letter to a Friend by Sir Thomas Browne, in 1690, wherein Browne
describes several medical conditions in his experience, including "that
endemial distemper of children in Languedoc ,
called the morgellons, wherein they critically break out with harsh hairs on
their backs."
Leitao and their supporters claim that such unusual disease has
actually been around for centuries. In 1935, an English physician wrote a paper
about Morgellons including excerpts from medical journals from the 1600's,
describing the disease. Unfortunately, not much was known then about Morgellons
-- and not much has been learned in the more than 400 years since.
To attract public attention and funs for research, Leitao
started the Morgellons Research Foundation (MRF) in 2002, which became non-profit
in 2004. The MRF claims to have received self-identified reports of Morgellons
from all 50 US states and 15
other countries, including Canada ,
the UK , Australia , and the Netherlands , and states that they
have been contacted by over 12,000 families.
Signs and Symptoms
People who have Morgellons disease report the following
signs and symptoms:
- Skin rashes or sores that can cause intense itching
- Crawling sensations on and under the skin, often compared to insects moving, stinging or biting
- Fibers, threads or black stringy material in and on the skin
- Severe fatigue
- Inability to concentrate and short-term memory loss
- Behavioral changes
- Joint pain
- Vision changes
Morgellons disease shares characteristics with various
recognized conditions, including Lyme disease, liver or kidney disease,
schizophrenia, drug or alcohol abuse, and a mental illness involving false
beliefs about infestation by parasites (delusional parasitosis).
CDC Investigation
As many of the patients live in California ,
under the pressure of the state's U.S. senator, Dianne
Feinstein, in 2008, federal health officials began systematic investigation.
The results, released Wednesday, January 25, 2012, bring the
ultimate conclusion that Morgellons exists
only in the patients' minds.
"We found no infectious cause," said Mark
Eberhard, a Center for Disease Control and Prevention official who was part of
the 15-member study team.
Afflicted patients have documented their suffering on
websites and many have vainly searched for a doctor who believed them. Some
doctors believe the condition is a form of delusional parasitosis, a psychosis
in which people believe they are infected with parasites.
Last May, Mayo Clinic researchers published a study of 108
Morgellons patients and found none of them suffered from any unusual physical
ailment. The study concluded that the sores on many of them were caused by
their own scratching and picking at their skin.
The CDC study was meant to be broader, starting
with a large population and then went looking for cases within the group. The
intent was to give scientists a better idea of how common Morgellons actually
is.
They focused on more than 3 million people who lived in 13
counties in Northern California, a location chosen in part because all had
health insurance through Kaiser Permanente of Northern
California , which had a research arm that could assist in the
project. Also, many of the anecdotal reports of Morgellons came from the area.
Culling through Kaiser patients’ records from July 2006
through June 2008, the team found — and was able to reach — 115 who had what
sounded like Morgellons. Most were middle-aged white women. Roughly 100 agreed
to at least answer survey questions, and about 40 consented to a battery of
physical and psychological tests that stretched over several days.
Blood and urine tests and skin biopsies checked for dozens
of infectious diseases, including fungus and bacteria that could cause
some of the symptoms. The researchers found none that would explain the cases.
There was no sign of an environmental cause, either,
although researchers did not go to each person's house to look around.
They took fibers from 12 people, which were tested at the
Armed Forces Institute of Pathology. Nothing unusual there, either. Cotton and
nylon, mainly — not some kind of organism wriggling out of a patient's body.
Skin lesions were common, but researchers concluded most of
them were from scratching.
What stood out was how the patients did on the psychological
exams. Though normal in most respects, they had more depression than the
general public and were more obsessive about physical ailments, the study
found. However, they did not have an unusual history of psychiatric problems,
according to their medical records. And the testing gave no clear indication of
a delusional disorder.
The researchers prefer to call the supposedly psychological
disorder as "unexplained dermopathy" in their paper.
But clearly, something made them miserable. "The
absence of evidence is not evidence of absence," said Felicia Goldstein,
an Emory University neurology professor and study
co-author. She said perhaps the patients could be helped by cognitive
behavioral therapy that might help them deal with possible contributing
psychological issues.
The results of the study corroborated the previous
conclusions from a study conducted of 108 patients at the Mayo Clinic. This
study also failed to find evidence of skin infestation despite doing skin
biopsies and examining specimens provided by the patients. The study, which was
conducted between 2001 and 2007, concluded that the feeling of skin infestation
was a delusion, delusional parasitosis.
Contradiction
While the CDC has not found any physical sources for the
disease, it is still does not mean that they do not exist. For example National
Pediculosis Association in Boston ,
Massachusetts , teamed up with the
Oklahoma State Department of Health to study the creepy crawlers, and the
results were not zero. The researchers took skin samples from 20 patients who
claim they have the bugs, but were diagnosed by their doctors as delusional and
found collembolan, a microscopic critter, in 18 of the 20 patients.
Collembola feed on algae, bacteria and decaying matter. They
thrive in wet or damp surroundings, and can be found under leaky kitchen or
bathroom sinks, swimming pools, and the soil of potted plants. The official
report was published in the journal of the New York Entomological Association. However,
the CDC response was that the collembola was not a danger to humans, at least
there is no sufficient evidence that it can be any health danger.
Karjoo Phenomenon
While mostly, there
are no answers to Morgellons disease, mostly questions and suggestions, there
is at least one person who says that there is an answer! Dr. Rahim
Karjoo, a Fellow of The American Society of Clinical Pathology, claims that he
knows how to treat Morgellons disease.
Per Dr. Karjoo, this is a disease of the hair and the hair follicle, and may
also be characterized by severe lesions on the skin. This infection can spread
quickly if it is not controlled and treated in time. He also refers to Morgellons
disease as ‘Karjoo phenomenon,’ because Dr. Karjoo considers himself as
the one who could find solid answers with regard to what actually causes this
condition and how to treat it.
Sources and Additional
Information: