Thursday, January 26, 2012

Morgellons Disease – on the Skin or in the Head?

“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.


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:

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