Thread: MORGELLONS DISEASE - Border Disease!!!!

Subject: DRAFT CASE DEFINITION: MORGELLONS DISEASE

Submitted by: the Morgellons Research Foundation to the Centers for Disease Control and Prevention (CDC).

December 25, 2005

The following case definition of Morgellons disease has been developed by physicians on the medical advisory board of the Morgellons Research Foundation. This case definition is a preliminary and evolving document, now updated for review by the Centers for Disease Control and Prevention (CDC). This document will be refined as further information becomes available and as members of the medical advisory board deem necessary.

The Following Six Signs or Symptoms Are The Basis of Morgellons Disease

Skin lesions, both spontaneously appearing and self-generated, with intense itching. The former may initially appear as "urticarial-like", or as "pimple-like" with or without a white center. The latter appear as linear or "picking" excoriations. Even when not self-generated, lesions often progress to open wounds that heal abnormally and usually incompletely. (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.)
Crawling sensations, both within and on the skin surface. Often conceptualized by the patient as "bugs moving, stinging or biting" intermittently. Besides the general dermis, may also involve the scalp, nares, ear canal, and body hair or hair follicles. The sensations are at times related to the presence of easily seen insects, arthropods, and other human and non-human associated parasites that require serious attention from the observing clinician.
Fatigue significant enough to interfere with the activities for daily living.
Cognitive difficulties, including measurable short term memory and attention deficit, as well as difficulty processing thoughts correctly. Described by patients as "brain fog".
Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive Disorder. A minority do not show this pattern. Almost all, if previously seen by well-read physicians without prolonged observation, will have been labeled as "Delusional Parasitosis". Temporal relationship to skin lesion onset is not known.
"Fibers" are reported in and on skin lesions. They are generally described by patients as white, but clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under ultraviolet light (Wood's lamp). Objects described as "granules", similar in size and shape to sand grains, can occasionally be removed from either broken or intact skin by physicians, but are commonly reported by patients. Patients report seeing black "specks" or "dots" on or in their skin, as well as unusual 1-3 mm "fuzzballs" both in their lesions and on (or falling from) intact skin.
OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS

Change in visual acuity.
Numerous neurological findings. A variety of neurological symptoms have been reported. Some patients have been diagnosed with Amyotrophic Lateral Sclerosis, Multiple Sclerosis, and other well-known and recognized disorders, while others display significant symptoms not falling into any well-defined neurological category.
Gastrointestinal symptoms, which may include dyspepsia, gastroesophageal reflux, and/or changes in bowel habits often similar to Irritable Bowel Syndrome.
Neuropsychiatric symptoms and signs, ranging from mood or personality changes to diagnosed disorders including Attention Deficit Disorder, Bipolar Disorder, Obsessive Compulsive Disorder and occasionally frank psychosis. Temporal relationship to skin lesion onset is not known.
Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with an irregular texture and irregular hyperpigmentation pattern. The changes resemble age associated sun-exposure skin damage, but typically appear acutely.
Skin examination often reveals excoriated and/or crusted lesions which, on examination with lighted magnification, are seen to have inclusions of variously colored (white, blue, black, or red) fibers. Skin examination may also reveal multiple hyper-pigmented macules, and an increase of what appears to be villous hair on arms. and face.
Fibromyalgia has been diagnosed in a significant percentage of this patient population.
Arthralgias are reported by a significant percentage of this patient population.
OTHER COMMONLY REPORTED OBSERVATIONS

Most patients will have sought care from multiple medical care providers. A large number will have been diagnosed with Delusional Parasitosis likely because of the juxtaposition of unexplained skin lesions and sensations and psychiatric overlay. Unfortunately, almost none will have received an appropriate diagnostic physical examination (particularly a microscopic or biopsy examination of lesions), but will have been diagnosed by history alone with grossly incomplete observation.
Most of these patients feel abandoned by the traditional medical care system and have sought alternative care providers or have self medicated, seriously compounding an already difficult medical situation,
LABORATORY AND OTHER DIAGNOSTIC EVALUATION

To date, there have been no formal laboratory or imaging studies done in this patient group. There are some reasonably consistent clinical findings, however, that need further examination to corroborate or refute in controlled studies.

REVIEWED BY:

William T. Harvey, MD, MPH
Michael Ledtke, MD
Ginger Savely, RN, FNP-C
Raphael B. Stricker, MD
Gregory V. Smith, MD, FAAP

Medical Advisory Board
Morgellons Research Foundation

http://morgellonswatch.com/2006/05/20/border-disease/

http://www.personalconsult.com/articles ... tcase.html

http://morgellonswatch.com/2006/04/09/h ... -the-skin/

Just another disease that popped up in the last couple of years. It was brought up today in a conversation and I had to look it up. Does anyone know if this is something new being brought in from third world countries

http://morgellonswatch.com/2006/05/20/border-disease/

Border Disease!!!!
Published by Margellons at 4:40 pm under Uncategorized

I find it amazing that the media swallows the line that cases are centered in Texas, California and Florida.Some of the more fringe “mediaâ€

Morgellons study ordered; Threads sprout from sores, patients say

ATLANTA (AP) - It sounds like a freakish ailment from a horror movie: Sores erupt on your skin, mysterious threads pop out of them, and you feel like tiny bugs are crawling all over you.


Some experts believe it's a psychiatric phenomenon, yet hundreds of people say it's a true physical condition. It's called Morgellons, and now the government is about to begin its first medical study of it.

The U.S. Centers for Disease Control and Prevention is paying California-based health care giant Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons' bizarre symptoms. The one-year effort will attempt to define the condition and better determine how common it is.

The study will be done in northern California, the source of many of the reports of Morgellons (pronounced mor-GELL-uns). Researchers will begin screening for patients immediately, CDC officials said Wednesday. A Kaiser official expects about 150 to 500 study participants.

Morgellons sufferers describe symptoms that include erupting sores, fatigue, the sensation of bugs crawling over them and — perhaps worst of all — mysterious red, blue or black fibers that sprout from their skin. They've documented their suffering on Web sites.

Some doctors believe the condition is a form of delusional parasitosis, a psychosis in which people believe they are infected with parasites.

In the study, volunteers will get blood tests and skin exams, as well as psychological evaluations, said Dr. Michele Pearson, who leads a CDC task force overseeing the study.

Pearson suggested the study will help determine if Morgellons is the same as delusional parasitosis or something new.

Study participants will be drawn from Kaiser's 3.4 million health insurance customers living mainly in the Sacramento and San Francisco areas and as far south as Fresno.

CDC officials acknowledged the study is limited and the results won't give a complete picture of the problem.

Randy Wymore, an Oklahoma State University pharmacologist, who believes the condition is not a psychiatric one, says there is distrust by some Morgellons sufferers toward the new study.

Some of these patients who are Kaiser Permanente members have said they don't like the way they've been treated by Kaiser doctors and probably won't participate, said Wymore, who formerly was a research director for a patient group and hears constantly from Morgellons patients.

"They felt that Kaiser was particularly unreceptive to treating them for anything other than a psychiatric disorder," said Wymore.

A Kaiser official said he had not heard such complaints. No patient will be excluded from participation, even if a doctor previously determined the problem was psychological, said Dr. Joe Selby, director of research for Kaiser Permanente Northern California.

Kaiser researchers will look in their records for previous patients who in the last 18 months reported Morgellons-like symptoms. They will be asked to participate in more medical evaluations.

Any fibers or specks that are collected will be analyzed at the Armed Forces Institute of Pathology, Selby said. Doctors who believe the condition is psychiatric suspect fibers are likely just threads from clothing.

The CDC has been getting more than a dozen calls a week from self-diagnosed Morgellons patients for well over a year, and was urged to investigate by U.S. Sen. Dianne Feinstein of California and others.

Some say they've suffered for decades, but the syndrome did not get a name until 2002, when "Morgellons" was chosen from a 1674 medical paper describing similar symptoms.

http://newsok.com/article/3193520/1200516471

I google it some time ago also.
To me it seems that is some experience with water or air that developed this weird thing.
It's also weird the countries where you have the most incidence.

SOME MEDICAL PROFESSIONALS HAVE A VERY BAD HABIT OF TELLING PATIENTS THAT THEIR SYMTOMS ARE "ALL IN THEIR HEAD" WHEN THEIR SYMPTOMS DONT FIT NEATLY INTO AN ALREADY KNOWN ILLNESS. SO THEN THE DOCTOR DOESNT KNOW WHAT IT IS.....AND INSTEAD OF INVESTIGATING THEY WRITE OFF THE PATIENT AS HAVING PSYCHIATRIC PROBIES.

Originally Posted by redpony353

SOME MEDICAL PROFESSIONALS HAVE A VERY BAD HABIT OF TELLING PATIENTS THAT THEIR SYMTOMS ARE "ALL IN THEIR HEAD" WHEN THEIR SYMPTOMS DONT FIT NEATLY INTO AN ALREADY KNOWN ILLNESS. SO THEN THE DOCTOR DOESNT KNOW WHAT IT IS.....AND INSTEAD OF INVESTIGATING THEY WRITE OFF THE PATIENT AS HAVING PSYCHIATRIC PROBIES.

Did you google it to check how strange it is ?

UPDATE IN TODAYS NEWS


CDC Orders Study Into Morgellons Disease Wednesday, January 16, 2008


ATLANTA — It sounds like a freakish ailment from a horror movie: Sores erupt on your skin, mysterious threads pop out of them, and you feel like tiny bugs are crawling all over you.

Some experts believe it's a psychiatric phenomenon, yet hundreds of people say it's a true physical condition. It's called Morgellons, and now the government is about to begin its first medical study of it.

The U.S. Centers for Disease Control and Prevention is paying California-based health care giant Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons' bizarre symptoms. The one-year effort will attempt to define the condition and better determine how common it is.

The study will be done in northern California, the source of many of the reports of Morgellons (pronounced mor-GELL-uns). Researchers will begin screening for patients immediately, CDC officials said Wednesday. A Kaiser official expects about 150 to 500 study participants.

Morgellons sufferers describe symptoms that include erupting sores, fatigue, the sensation of bugs crawling over them and — perhaps worst of all — mysterious red, blue or black fibers that sprout from their skin. They've documented their suffering on Web sites.

Some doctors believe the condition is a form of delusional parasitosis, a psychosis in which people believe they are infected with parasites.

In the study, volunteers will get blood tests and skin exams, as well as psychological evaluations, said Dr. Michele Pearson, who leads a CDC task force overseeing the study.

Pearson suggested the study will help determine if Morgellons is the same as delusional parasitosis or something new.

Study participants will be drawn from Kaiser's 3.4 million health insurance customers living mainly in the Sacramento and San Francisco areas and as far south as Fresno.

CDC officials acknowledged the study is limited and the results won't give a complete picture of the problem.

Randy Wymore, an Oklahoma State University pharmacologist, who believes the condition is not a psychiatric one, says there is distrust by some Morgellons sufferers toward the new study.

Some of these patients who are Kaiser Permanente members have said they don't like the way they've been treated by Kaiser doctors and probably won't participate, said Wymore, who formerly was a research director for a patient group and hears constantly from Morgellons patients.

"They felt that Kaiser was particularly unreceptive to treating them for anything other than a psychiatric disorder," said Wymore.

A Kaiser official said he had not heard such complaints. No patient will be excluded from participation, even if a doctor previously determined the problem was psychological, said Dr. Joe Selby, director of research for Kaiser Permanente Northern California.

Kaiser researchers will look in their records for previous patients who in the last 18 months reported Morgellons-like symptoms. They will be asked to participate in more medical evaluations.

Any fibers or specks that are collected will be analyzed at the Armed Forces Institute of Pathology, Selby said. Doctors who believe the condition is psychiatric suspect fibers are likely just threads from clothing.

The CDC has been getting more than a dozen calls a week from self-diagnosed Morgellons patients for well over a year, and was urged to investigate by U.S. Sen. Dianne Feinstein of California and others.

Some say they've suffered for decades, but the syndrome did not get a name until 2002, when "Morgellons" was chosen from a 1674 medical paper describing similar symptoms.





http://www.foxnews.com/story/0,2933,323347,00.html

redpony353 wrote:
SOME MEDICAL PROFESSIONALS HAVE A VERY BAD HABIT OF TELLING PATIENTS THAT THEIR SYMTOMS ARE "ALL IN THEIR HEAD" WHEN THEIR SYMPTOMS DONT FIT NEATLY INTO AN ALREADY KNOWN ILLNESS. SO THEN THE DOCTOR DOESNT KNOW WHAT IT IS.....AND INSTEAD OF INVESTIGATING THEY WRITE OFF THE PATIENT AS HAVING PSYCHIATRIC PROBIES.

Did you google it to check how strange it is ?

YES IT IS STRANGE. THAT IS ASIDE FROM THE POINT. NO DOCTOR SHOULD EVER DISCOUNT SYMPTOMS WITHOUT DOING SOME TESTS. AND I HAVE BEEN READING ABOUT THIS. MANY MANY DOCTORS DISCOUNTED THESE SYMPTOMS WITHOUT SO MUCH AS A SKIN TEST, BIOPSY OR OTHER MEDICAL TEST TO SUPPORT THEIR "DIAGNOSIS". THEY DIDNT BOTHER TO INVESTIGATE.

IF YOU HAVE DONE SOME READING ON THIS YOU WILL FIND OUT THAT SOME HAVE COMMITTED SUICIDE OVER THESE SYMPTOMS.

THERE ARE ILLNESSES IN THE PAST THAT HAVE BEEN DISCOUNTED AS "ALL IN THE HEAD". ONE OF THOSE ILLENESSES WAS EPILEPSY. SYMPTOMS WERE DIREGARDED AS PSYCHIATRIC OR "POSSESSION" BY DEMONS. EPILEPTIC PATIENTS WERE LEFT IN ASYLUMS TO SUFFER. THEIR SYMPTOMS WERE NOT INVESTIGATED.

ANYTIME A PATIENT PRESENTS WITH SYMPTOMS...THOSE SYMPTOMS SHOULD BE INVESTIGATED.

MEDICAL PROFESSIONALS HAVE NO RIGHT TO ASSUME THAT SYMPTOMS ARE NOT REAL WITHOUT DOING A COURSE OF MEDICAL TESTS AND INVESTIGATING THOSE SYMPTOMS. THAT IS WHAT DOCTORS ARE FOR.

TOO OFTEN MEDICAL PROFESSIONALS THINK THEY KNOW EVERYTHING AND HAVE NOTHING LEFT TO LEARN. AND SOME ARE OUTRIGHT LAZY AND UNINTERESTED. SO WHEN A PATIENT PRESENTS WITH SYMPTOMS THAT ARE NOT ON THE DOCTORS SUMMARY OF KNOWN ILLNESSES, THEY DISREGARD THE SYMPTOMS AS IMAGINED OR NOT WORTH THE TIME TO INVESTIGATE. IN SOME CASES THEY EVEN THINK THE PATIENT IS JUST TRYING TO GET ATTENTION.