The Facts Behind The Medical Mystery Of Morgellons

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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LymeEnigma
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Re: The Facts Behind The Medical Mystery Of Morgellons

Postby LymeEnigma » Fri 16 May 2008 19:47

Many patients with Morgellons Disease have positive Western blots doe [sic] Borrelia Burgdorferi, the causitive [sic] agent of Lyme Disease.

Interesting how reliable the blood tests are when we want them to be....

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Re: The Facts Behind The Medical Mystery Of Morgellons

Postby Martian » Fri 16 May 2008 20:01

LymeEnigma wrote:
Many patients with Morgellons Disease have positive Western blots doe [sic] Borrelia Burgdorferi, the causitive [sic] agent of Lyme Disease.

Interesting how reliable the blood tests are when we want them to be....

Clever remark! Yeah, interesting indeed.

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Re: The Facts Behind The Medical Mystery Of Morgellons

Postby LymeEnigma » Sun 15 Jun 2008 19:28

Morgellons

Morgellons (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms including crawling, biting, and stinging sensations; finding fibers on or under the skin; and persistent skin lesions (e.g. rashes or sores).

It is not known at present whether the condition represents a new disease entity, or whether persons who identify themselves as having Morgellons have a common cause for their symptoms, share common risk factors, or are contagious.[1] A majority of health professionals, including most dermatologists, regard Morgellons as a manifestation of other known medical conditions, including delusional parasitosis.[2][3] According to the Mayo Clinic, health professionals are divided in their attitudes about Morgellons: some believe it is a specific condition and expect it to be confirmed by research in the future; some believe it is not a separate condition, rather its symptoms result from other conditions, often psychological; and some don't acknowledge Morgellons disease at all or reserve judgment until more is known about the condition.[4] CDC has begun an epidemiologic investigation of the "Unexplained Dermopathy" (aka "Morgellons").[5]

In 2001, biologist Mary Leitao's 2-year-old son developed sores under his lip and began to complain of "bugs."[6] Leitao examined the sores and discovered red, blue, black and white "bundles of fibers." She took her son to see at least eight different doctors who were unable to find any disease, allergy, or other explanation for the symptoms, but her son developed more sores, and more fibers continued to poke out of them.[7][8] She chose the name Morgellons disease (with a hard g) from a description of an illness in the monograph A Letter to a Friend by Sir Thomas Browne, in 1690, wherein he 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."[7][9] There is no suggestion that the two are linked.

Leitao founded the Morgellons Research Foundation (MRF) in 2002. The MRF states on its website that its purpose is to raise awareness and funding for research into the condition, described by the organization as "a newly emerging infectious disease".[10] Leitao stated that she initially hoped to receive information from scientists or physicians who might understand the problem, but instead, thousands of others contacted her describing their sores and fibers, as well as neurological symptoms, fatigue, muscle and joint pain, and other symptoms.[7] The MRF has now received claimed reports of Morgellons from all 50 US states and 15 nations, including Canada, the UK, Australia, and the Netherlands, and states that they have been contacted by over 10,000 families.[10]

In May 2006 there was media coverage in Southern California,[11] leading Los Angeles County Department of Health services to issue a statement saying, "No credible medical or public health association has verified the existence or diagnosis of "Morgellons Disease", and "at this time there is no reason for individuals to panic over unsubstantiated reports of this disease".[12] In June and July 2006 there were segments on CNN[13], ABC's Good Morning America[14], and NBC's The Today Show. In August 2006 a segment of the ABC show Medical Mysteries[8] was devoted to the subject.

The first journal article to discuss Morgellons was co-authored by V. R. Savely, M. M. Leitao, and R. B. Stricker, members of the MRF, and was published July, 2006 by the American Journal of Clinical Dermatology.[15] An article in the San Francisco Chronicle reported, "There have been no clinical studies" (of Morgellons disease).[16] A New Scientist article in September 2007 also covered the controversy noting that it extends to Europe and Australia.[17]

CDC investigation

A Centers for Disease Control and Prevention (CDC) task force first met in June 2006.[18] As of August, the task force consisted of 12 people, including two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic diseases.[19] In July of 2006, Dan Rutz, MPH, a communications specialist for the CDC, said "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it."[20] In May, 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz "Do you have any idea what the fibers are?" Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is [an infectious process], but our mind is open to everything, including that remote possibility."

In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka "Morgellons")", stating, "CDC is working with public health and other medical professionals to identify potential sites for the epidemiologic investigation. CDC also is working with task force members to develop a scientific protocol, including an initial screening case definition for the epidemiologic investigation."[1] On July 31, 2007, the CDC issued a formal Request for Quotations for an epidemiologic investigation of Morgellons, with a view to establishing whether it is in fact a distinct condition. The CDC plans to identify a database of potential cases (study cohort) by November 30, 2007.[21]

On November 1, 2007, the CDC updated their website with information about the investigation process, stating that "The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors."[5] They state that Kaiser Permanente in Northern California was chosen to assist with investigation, which will begin when the scientific protocols and review board structure have been prepared and approved. A description of the geographic distribution of the illness and estimated rates of illness in the community will be developed. The investigation will involve skin biopsies from affected patients, and characterization of foreign material such as fibers or threads obtained from patients to determine their potential source.[5]

Symptoms and diagnosis

Morgellons is currently not recognised as a unique disorder and so there is currently no list of symptoms or differential diagnosis for Morgellons that is generally accepted by the medical community. Patients usually self-diagnose based on media reports and information published by the Morgellons Research Foundation. Symptoms usually include:[15][22]

* Disturbing sensations of insect-like crawling, stinging or biting on or under the skin (formication)
* Skin rashes and lesions that do not heal
* Fiber-like filaments, granules or crystals that appear on or under the skin or that can be extracted from lesions
* Joint, muscle and connective tissue pain, including fibromyalgia
* Debilitating fatigue
* Cognitive dysfunction, including difficulty with concentration, short-term memory, and attention

Dr. William T. Harvey, director of the MRF medical advisory board, states that Morgellons patients also exhibit laboratory findings including increased levels of inflammatory cytokines, increased insulin, and antibodies to three bacterial pathogens.[23] Many Morgellons patients have symptoms that are also consistent with Chronic Fatigue Syndrome, depression, obsessive-compulsive disorder, and attention deficit disorder.[24] Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital, while working with the OSU-CHS Center for the Investigation of Morgellons Disease, noted all her Morgellons patients looked ill with neurological symptoms, which included confusion, difficulty walking and controlling their foot (foot drop), and a sagging mouth when speaking[7]; the OSU Center has issued a list of symptoms similar to that of the MRF.[1]

The Morgellons Research Foundation has adopted a draft Case Definition developed by their Medical Advisory Board that is intended to be refined as new information is available.[25]

The 2007 Atlas of Human Parasitology states:

Many dermatologists refute the suggestion that this is an actual disease but instead indicate that many of these patients have psychological problems or other common skin disorders. Given the large numbers of individuals who feel that they have this affliction, it will be most helpful over the coming years to have a valid scientific assessment of Morgellons diesease and its possible etiology (or etiologies). One of the chief criticisms by many patients has been that they feel the medical community and other scientists consulted have not been open to the idea that there is possibly an as yet undescribed infectious or physiologic causation for the disease. However it is certainly true that in fact many expert parasitologists, medical entomologists and other microbiologists have in fact carefully examined fibers and other materials expressed or extracted from such patients and found that biological organisms are not present. Although an apparent association of the condition with the presence of Lyme disease has been reported (Savely et al, 2006, Am J Clin Dermatol, 7:1–6), further research will be needed to help resolve the validity of Morgellons disease. Until then, whether Morgellons disease is another name for delusional parasitosis or a real disease entity with a biologic or physiologic basis will remain up in the air.[26]

Proposed causes and pathophysiology

Delusional parasitosis

A majority of dermatologists view Morgellons as a new name for an old condition, Delusional parasitosis.[27] In delusional parasitosis, patients hold a delusional belief that they are infested with parasites. They may experience formication, the sensation that insects are crawling under the skin. Individuals suffering from this condition may develop elaborate rituals of inspection and cleansing to locate and remove parasites and fibers, resulting in a form of self-mutilation; they injure themselves in attempts to be rid of the "parasites" by picking at the skin, causing lesions, and then pick at the lesions, preventing them from healing.[3] Patients with delusional parasitosis often present at the doctor's office with what MDs term the "matchbox sign"[28] -- a medical sign characterized by the patient making collections of fibers and other foreign objects supposedly retrieved from the skin.[3] Delusional parasitosis, with symptoms that have "extraordinary similarities" to Morgellons, has been described in the medical literature for over 75 years.[29] Dr. Noah Craft, a dermatologist at the Harbor-UCLA Medical Center, Torrance, CA, has seen a handful of Morgellons patients and biopsied their skin lesions, but found only normal skin and inflammation, as one would find in a bump that has been picked at.[7]

Some cases of delusional parasitosis may have organic causes. For example, formication, the sensation that bugs are crawling under ones' skin, can be caused by allergies, diabetic neuropathy, menopause, skin cancer, or herpes zoster. Symptoms associated with delusional parasitosis, including urticaria (hives), paresthesia (unexplained tingling sensations in the skin), and pruritis (itching), are common side-effects of many prescription drugs.[30] The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.

Advocates from the MRF counter that non-healing Morgellons lesions have been found on infants' bodies in locations that the infants can not themselves reach to scratch.[23] The symptoms of Morgellons are broader than those reported for delusional parasitosis, including chronic fatigue and muscle pain and cognitive disfunction. In a letter to the MRF dated June 11, 2003, the California Department of Health and Human Services stated that, "After reviewing your website to gain some information about the patients…the patients appear to have a constellation of symptoms that do not fit any currently definable disease, infectious or otherwise."[31]

Known skin conditions

It has been hypothesized that some cases of (self-diagnosed) Morgellons disease are actually other recognized skin disorders, including allergic dermatitis, contact dermatitis, and the parasite scabies.[2][29]

Theories about the fibers

Randy Wymore, a former research director of the MRF and presently Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease, claims that Morgellons patients have masses of dark fibers visible at 60x magnification under the unbroken skin, while unaffected individuals do not.[2] Wymore sent samples of fibers supplied by Morgellons patients to the Police Crime Lab in Tulsa, Oklahoma for analysis. After checking the fibers against known fibers in the FBI's national database, lab director Mark Boese said the fibers were "consistent with something that the body may be producing," adding, "These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism."[8]

Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital and part of the MRF research team at OSU, reported that she has examined many patients' skin via a dermatoscope and performed biopsies on both lesions and apparently healthy skin, and that "she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin."[7]

Dermatologists say any fibers are from clothing embedded in self-imposed sores, and the fibers patients bring in bags are textile in nature.[7] [32]

Bacterial hypothesis

Three members of the Morgellons Research Foundation, including Raphael Stricker, Director and former President of the International Lyme and Associated Diseases Society (ILADS),[33] authored an article about Morgellons published by the American Journal of Clinical Dermatology in early 2006. The authors wrote that "Morgellons disease may be linked to an undefined infectious process," and reported that many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease, and treatment with anti-bacterials appropriate for Lyme disease leads to remission of Morgellons symptoms in most patients.[15] Dr. Harvey has also stated there is serological evidence of bacterial pathogens in Morgellons patients.[23] The underlying data for these claims have not been published and the findings have not been independently confirmed.

Dr. Stricker, along with Dr. Citovsky, MRF board member from the State University of New York at Stony Brook and an expert on plant pathogens, reported in January, 2007, that Morgellons skin fibers appear to contain cellulose. Five skin samples of Morgellons patients contained evidence of DNA from Agrobacterium, a plant-infecting organism which is known to produce cellulose fibers at infection sites within plant host tissues.[34] Agrobacterium can be responsible for opportunistic infections in humans with weakened immune systems, but has not been shown to be a primary pathogen in otherwise healthy individuals.[35]

According to the Morgellons Research Foundation website, MRF board member, Dr. Ahmed Kilani CEO of Clongen Laboratories, and a microbiologist with a Ph.D. from Stanford University Medical School, observed structures from a number of Morgellons patients microscopically, along with their clinical profiles. He believes this organism is not a bacteria, and hypothesized this organism "is a more complex fungus, algae or a novel parasite." The fibers resemble "aerial hyphae observed in many fungal species". The webpage also states, "The information available today is limited and does not provide an answer to what the causative agent of Morgellons could be."[36]

Environmental toxins

Richard Fagerlund, an entomologist who has a column titled "Ask the Bugman" in the San Francisco Chronicle, stated that he takes Morgellons disease seriously, and he receives letters from people with Morgellons symptoms daily. Twenty years ago, he got three to four letters like this a year. He believes the condition is reaching epidemic proportions and theorizes only a small percentage of cases are delusional parasitosis, while the rest may be caused by something else, such as pollutants, especially pesticides.[37]

Treatment

Treatment for Delusional Parasitosis

Many dermatologist treat Morgellons as delusional parasitosis. After a thorough medical examination to rule out known organic causes for the symptoms, delusional parasitosis patients are typically prescribed one of several typical antipsychotic drugs.[38][39] In the past, pimozide was the drug of choice; in addition to antipsychotic activity, it also has antipruritic activity, meaning it inhibits the sensation of itching.[40] However, pimozide requires frequent electrocardiographic monitoring.[39] Currently, atypical antipsychotics such as olanzapine or risperidone are used as first line treatment.[39] Antipsychotics are effective at treating delusional parasitosis at doses as low as one-fifth to one-tenth the dose typically prescribed for schizophrenia.[39] It is common for patients who believe they have Morgellons to reject a physician's diagnosis of delusional parasitosis. It has been suggested that the term Morgellons should be adopted by dermatologists to enhance their rapport with their patients, allowing them to overcome this resistance.[41]

Treatment for infectious disease

People who say that they have Morgellons will frequently reject the diagnosis of delusional parasitosis[42] and, "report that their symptoms are not taken seriously."[15] There are medical practitioners that hypothesize Morgellons is an infectious process, including several associated with the MRF, who will listen to patient's symptoms, examine them, order laboratory tests, and treat Morgellons symptoms accordingly, including the use of antibiotics, antifungals, antiparasitic medications, herbal supplements, and light therapy.[43][16][44][42][6][17][45] Physicians associated with the Morgellons Research Foundation have reported that some Morgellons patients who test positive for Lyme disease obtain symptom relief using aggressive, long-term antibiotic treatment for chronic Lyme disease. However, if the treatment is discontinued the symptoms return.[23][15][24]

Self-treatment

Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Such treatments may include vitamins, herbs, epsom salt baths, vinegar, antifungal soaps and shampoos, and natural oils [2]. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for de-worming horses, and industrial insecticides.[19] There is no proof that any of these treatments are effective.

See also

* Medically unexplained physical symptoms

References

1. ^ a b Unexplained Dermopathy (aka "Morgellons") Centers For Disease Control, June 12, 2007
2. ^ a b c Mysterious 'Morgellons disease' prompts US investigation, Emma Marris, Nature Medicine, 30 August 2006
3. ^ a b c Dunn J, Murphy MB, Fox KM. Diffuse Pruritic Lesions in a 37-Year-Old Man After Sleeping in an Abandoned Building. Am J Psychiatry 2007. 164:1166–1172. PMID 17671278 Full text link
4. ^ Morgellons disease: Managing a mysterious skin condition. Mayo Clinic (2007-05-02). Retrieved on 2007-08-04.
5. ^ a b c Unexplained Dermopathy (aka "Morgellons"), CDC Investigation Centers For Disease Control, November 1 2007
6. ^ a b Harlan, Chico. "Mom fights for answers on what's wrong with her son", Pittsburgh Post-Gazette, 2006-07-23. Retrieved on 2007-08-04.
7. ^ a b c d e f g DeVita-Raeburn, Elizabeth (March/April 2007). The Morgellons Mystery. Psychology Today. Retrieved on 2007-08-04.
8. ^ a b c Morgellons Mystery. ABC News Primetime (Aug 9, 2006). Retrieved on 2007-08-14.
9. ^ A Letter to a Friend Sir Thomas Browne, 1690.
10. ^ a b Morgellons Research Foundation web site
11. ^ McDade, Mary Beth (May 22, 2006). Mysterious Disease Plagues More Southlanders. CBS Broadcasting Inc. Retrieved on 2007-12-04.
12. ^ LADHS Statement on Morgellons Disease, Los Angeles Department of Health Services, May 2006
13. ^ Medical Mystery, CNN PAULA ZAHN NOW, Aired June 23, 2006 - 20:00 ET
14. ^ Mysterious Skin Disease Causes Itching, Loose Fibers, Morgellons Has Plenty of Skeptics, By Cynthia McFadden, Good Morning America, July 28, 2006
15. ^ a b c d e Savely VR, Leitao MM, and Stricker, RB. The mystery of Morgellons disease: infection or delusion? Am J Clin Dermatol. 2006;7(1):1–5 PMID 16489838
16. ^ a b Nasty disease? Or is it delusion? Erin Allday, Chronicle Staff Writer,San Francisco Chronicle, June 2, 2006.
17. ^ a b Morgellons disease: The itch that won't be scratched Daniel Elkan, New Scientist, Magazine issue 2621, 12 September 2007.
18. ^ "CDC considers Texas for Morgellons study", My San Antonio News, posted Jun 26, 2006, accessed Jun 26, 2006.
19. ^ a b "CDC Probes Bizarre Morgellons Condition", ATLANTA, Aug. 9, 2006, By MIKE STOBBE AP Medical Writer.
20. ^ Itching for Answers to a Mystery Condition, TIME, July 28, 2006
21. ^ Investigation of an Unexplained Dermopathy, California, Reference-Number-2007-Morgellons. fbo.gov, Federal Business Opportunities government internet portal. “Centers for Disease Control and Prevention (PGO) Acquisition & Assistance Branch B, Request No. 2007-Q-09877, Requisition/ Purchase Request No. 000HCVCH-2007-46765”
22. ^ Savely G, Leitao MM. Skin lesions and crawling sensations: disease or delusion? Adv Nurse Pract. 2005 May;13(5):16–7. PMID 15898309
23. ^ a b c d Harvey WT. Morgellons disease. J Am Acad Dermatol. 2007. 56(4):705–6. PMID 17367622 Full text link
24. ^ a b Paquette M. Morgellons: disease or delusions?. Perspectives in Psychiatric Care. 2007. 43(2):67–8. PMID 17388848
25. ^ Morgellons Case Definition Morgellons research Foundation, 2007
26. ^ Ash. L.R., Orihel, T.C. 2007. Atlas of Human Parasitology, 5th Edition. American Society for Clinical Pathology Press, Chicago, Illinois, pp. 386–387 ISBN 0891891676
27. ^ A Medical Mystery: Delusional parasitosis Frank X. Mullen Jr, Reno Gazette-Journal, May 8, 2004.
28. ^ Koo, Lebwohl. Psychodermatology: The Mind and Skin Connection. American Family Physician, Vol. 64/No. 11 (December 1, 2001)
29. ^ a b Koblenzer, CS. The challenge of Morgellons disease. J Am Acad Dermatol. 2006. 55:920–922. PMID 17052516
30. ^ Hinkle, NC. Delusory Parasitosis. American Entomologist 2000. 46:17–25. Full text link
31. ^ Letter from Stan Husted, Supervising Public Health Biologist, California Department of Health Services, to Mary Leitao, dated Oct 31, 2003
32. ^ Elaine Monaghan. "All in the head?", The Times, May 19, 2006. Retrieved on 2007-08-14.
33. ^ International Lyme and Associated Diseases Society (ILADS)
34. ^ Stricker RB, Savely VR, Zaltsman A, Citovsky V. Contribution of Agrobacterium to morgellons disease. J Invest Med. 2007. 55 (1): S123-S123 Suppl. S. (Abstract)
35. ^ Hulse M, Johnson S, Ferrieri P. Agrobacterium infections in humans: experience at one hospital and review. Clin Infect Dis. 1993 Jan;16(1):112–7. PMID 8448285
36. ^ Kilani, A. Investigation of Novel Organism Implicated in Morgellons Disease. Research proposal published on the [http://www.morgellons.org/clogen1.htm MRF web site.
37. ^ Persistent scabies-like condition may not be all in people's heads, Richard Fagerlund, San Francisco Chronicle, December 30, 2006
38. ^ Koo J and Lee CS. Delusions of Parasitosis: A Dermatologist's Guide to Diagnosis and Treatment. Am J Clin Dermatol. 2001. 2(5):285–290. PMID 11721647
39. ^ a b c d Meehan WJ, Badreshia S, Mackley CL. Successful treatment of delusions of parasitosis with olanzapine. 2006. Arch Dermatol. Mar;142(3):352–5. PMID 16549712 Full text link
40. ^ Koblenzer CS. Pimozide at least as safe and perhaps more effective than olanzapine for treatment of Morgellons disease. 2006. Arch Dermatol. 142(10):1364. PMID 17043201
41. ^ Murase JE, Wu JJ and Koo J. Morgellons disease: A rapport-enhancing term for delusions of parasitosis. J Am Acad Dermatol. 2006. 55(5):913–914. PMID 17052509 Full text link
42. ^ a b Morgellons Disease Baffles Patients And Doctors By Benjamin Chertoff, Popular Mechanics, Published in the June 2005 issue
43. ^ Disease: Real or state of mind? By Melissa Healy, Los Angeles Times, 2006-11-13
44. ^ Doctors Make Progress With Mysterious Disease KTVU-TV, Bay area, 2006-6-23
45. ^ Vital Signs: Bugs Are Crawling In My Skin, by Claire Panosian Dunavan, Discover, 2006-11-20
http://www.bionity.com/lexikon/e/Morgellons

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LymeEnigma
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Re: The Facts Behind The Medical Mystery Of Morgellons

Postby LymeEnigma » Sun 15 Jun 2008 19:42

So, it’s fine for Stricker and Savely to sell expensive long term antibiotic treatments to people who think they have Morgellons? Treatments have have NO SCIENTIFIC EVIDENCE of efficacy. Treatments that are based on a theory that Morgellons is related to chronic Lyme, and treatments that are so far out of the mainstream that Savely was forced out of her Texas practice for prescribing them? It’s fine for Wymore’s friends to do things that even he says are not workable in an academic setting? Why? Because they care?

http://morgellonswatch.com/?s=wymore

Morgellons also makes money for the more serious practicioners of medicine. It was reported on Lymebusters that Nurse Practicioner Ginger Savely charges $500 for a session. Upon seeing a patient with persistent unexplained pruritus and/or neurotic excoriations, she can refer them to a dermatologist who is qualified to make a specific diagnosis, or she can diagnose them with the catch-all “Morgellons”, and begin a course of unconventional treatments that takes several months, at $500 per session, followed by very expensive “phone visits” . For the latter, she was effectivley expelled from Texas by the Texas Medical Board.

http://morgellonswatch.com/2006/07/10/m ... kes-money/

From Dr. Ahmed Kilani (Ph.D), president of Clongen Labs:

Morgellons Disease is an emerging infectious disease that infects thousands of people in the United States with major concentrations of patients in California, Texas, Florida and Oregon. The etiology of the disease is unknown and so is the treatment. The most debilitating aspect of the disease is its effect on the central nervous system. Patients who suffer from Morgellons describe similar symptoms and have difficulties with mental concentration, short term memory and brain fog. In addition, the disease can lead to depression and there are reports on the connection between Morgellons and autism in children.

Morgellons is a fairly new disease but there are many institutions that are forming teams to study this disease. The descriptions of symptoms by many Morgellons patients (as described on http://www.morgellons.org/symptoms.html) are frightening. This is an quote taken from www.morgellons.org website:
..report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures.

I have personally listened to detailed descriptions of the symptoms of this disease and something has got to be done. Our laboratory has adopted the task of studying this disease. Below are some pictures that we took in our laboratory for skin scab samples that we received from a Morgellons patient (anonymous). The autofluorescence of fibers seen in Morgellons disease has been reported by many researchers and it is unknown what these fibers are made off. Disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures.
Our Role:

Our main mission at Clongen Laboratories is to work towards improving human health. We continue to do so using our extensive experience in assay development, microbiology, virology and molecular diagnostics.

Based on many discussions we had with Morgellons patients and on literature reviews of Morgellons cases, we are in the process of establising several molecular detection assays for possible causes of Morgellons disease. We will be posting a questionnaire that asks specific questions that we would like answers for from Morgellons patients in order to assist us direct our research. We are open to collaborations with other researchers who are interested in disease cause investigations.

We expect to start a nationwide project in the coming few months that would test samples from Morgellons patients for several possible pathogens (a panel) in order to establish possible connections between Morgellons disease and a causative agent. We are in the process of studying the logistics for this project and trying to allocate resources as we do not have any outside funding for this project yet.

In the meantime, I personally believe that the answer lies in the definitive identification of the source of the fibers that are observed in Morgellons disease and genetic analyses of DNA extracted from lesion sites. We are also working on soliciting government grants to finance this project.

A clarification for those that need it, we do not have the answer to what causes Morgellons although we have our hypotheses on what the cause can be. We have no evidence nor do we claim that we isolated the causative agent of the disease. Our investigations on Morgellons are NON-PROFIT. We will announce when we can start accepting patient samples (with a doctor's request) and will NOT charge patients for this investigation.

In order to assist us in this project, please send your questions, comments, recommendations or information to Morgellons@clongen.com or call Dr. Ahmed Kilani at 301-916-0173.

http://www.clongen.com/morgellons_disease.php

I'd like to know how the good "doctor" can assert so much "information" without offering one single source. Morgellon's is "an emerging infectious disease"? Based on what proof? And he's developing blood tests based on patient questionnaires? Give me a break....

Morgellon's has become a bigger circus than Lyme....

Martian
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Morgellons disease: Analysis of a population

Postby Martian » Thu 13 May 2010 13:54

More to add to the credibility of the ILADS (and Lymeland in general)...


Source: http://www.dovepress.com/morgellons-dis ... ticle-CCID (full-text article available, click "Download article"-button)

Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology

(109) Article views
Authors: Virginia R Savely, Raphael B Stricker
Published Date May 2010 , Volume 2010:3
Journal: Clinical, Cosmetic and Investigational Dermatology

Virginia R Savely [1], Raphael B Stricker [2]

1. TBD Medical Associates, San Francisco, CA, USA;
2. International Lyme and Associated Diseases Society, Bethesda, MD, USA

Background: Morgellons disease is a controversial illness in which patients complain of stinging, burning, and biting sensations under the skin. Unusual subcutaneous fibers are the unique objective finding. The etiology of Morgellons disease is unknown, and diagnostic criteria have yet to be established. Our goal was to identify prevalent symptoms in patients with clinically confirmed subcutaneous fibers in order to develop a case definition for Morgellons disease.

Methods: Patients with subcutaneous fibers observed on physical examination (designated as the fiber group) were evaluated using a data extraction tool that measured clinical and demographic characteristics. The prevalence of symptoms common to the fiber group was then compared with the prevalence of these symptoms in patients with Lyme disease and no complaints of skin fibers.

Results: The fiber group consisted of 122 patients. Significant findings in this group were an association with tick-borne diseases and hypothyroidism, high numbers from two states (Texas and California), high prevalence in middle-aged Caucasian women, and an increased prevalence of smoking and substance abuse. Although depression was noted in 29% of the fiber patients, pre-existing delusional disease was not reported. After adjusting for nonspecific symptoms, the most common symptoms reported in the fiber group were: crawling sensations under the skin; spontaneously appearing, slow-healing lesions; hyperpigmented scars when lesions heal; intense pruritus; seed-like objects, black specks, or “fuzz balls” in lesions or on intact skin; fine, thread-like fibers of varying colors in lesions and intact skin; lesions containing thick, tough, translucent fibers that are highly resistant to extraction; and a sensation of something trying to penetrate the skin from the inside out.

Conclusions: This study of the largest clinical cohort reported to date provides the basis for an accurate and clinically useful case definition for Morgellons disease.

Keywords: Morgellons, subcutaneous fibers, pruritus, delusions of parasitosis, Lyme disease, skin lesions


Nice how Lyme disease is being associated with Morgellons.


Also see thread: Morgellons: Figments of the Imagination?


edit: added: (full-text article available, click "Download article"-button)
Last edited by Martian on Thu 13 May 2010 17:40, edited 1 time in total.

rlstanley
Posts: 1637
Joined: Mon 3 Dec 2007 2:53

Re: The Facts Behind The Medical Mystery Of Morgellons

Postby rlstanley » Thu 13 May 2010 17:09

from Discussion ( see full text):

...Of the 122 study subjects, most were from California and
Texas, possibly due to the fact that these are the two states where the first author had lived and practised.


I'd say that's about right.

However, the MRF maintains that California, Texas, and Florida are the
states where Morgellons disease is most prevalent, based upon registrants on the MRF web site.(2)


Oh yeah, great source that #2.
(2) Morgellons Research Foundation (MRF) web site. Accessed June 30,
2009 at http://www.mrf.com.


A common feature shared by these states is that they have the most mileage of coastline, prompting speculation that the putative infectious agent of Morgellons disease could be water-borne.


You gotta admit that's weird to begin with. However, using that 'logic', did anyone check Alaska? Florida? Hawaii? Louisiana? http://www.infoplease.com/toptens/longe ... lines.html

Didn't think so.

California and Texas are also two of the states with the highest number of Hispanic immigrants....


FAIL.

The association between Morgellons diseae and Lyme disease
merits further study.


Not. At. All.

from the Summary

...Other significant findings in the study sample that warrant
further investigation are the association with tick-borne
diseases and hypothyroidism, high numbers from two states
(Texas and California), high prevalence in middle-aged
Caucasian women, and a higher-than-average history of
substance abuse....


Overall grade: muy malo

Published by Dove Press ...Hmmmm...Who are they? Check check check...

OKay. Got it: http://docs.google.com/viewer?a=v&q=cac ... PM-itCo7ng
.

Martian
Posts: 1942
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: The Facts Behind The Medical Mystery Of Morgellons

Postby Martian » Sat 15 May 2010 0:55

Source: http://scienceblogs.com/whitecoatunderg ... ts_bad.php


Bad science, done badly. It's bad.
Posted on: May 13, 2010 6:02 PM, by PalMD


The article, entitled, "Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology" was published this month in the Journal of Clinical, Cosmetic, and Investigational Dermatology. I would give you a PMID or DOI, but the journal is not indexed by PubMed. The publisher describes it as "open access" and emphasizes that, "[t]he journal is characterized by the rapid reporting of clinical studies, reviews and original research in skin research and skin care." The journal even has a "testimonials" page. That's unique. I'm pretty sure most of the journals I read don't have that. All of the testimonials agree that the service is excellent.



The article starts with this:

Morgellons disease is a poorly understood multisystem illness characterized by stinging, biting, and crawling sensations under the skin.


That is an unfounded assertion. Morgellons is simply a label used by some for a set of symptoms. There is not, as of yet, any agreed-upon disease called "morgellons". And where do they get their data? From the Morgellons Research Foundation, an organization founded by the person who named the disease. This foundation has not yet done any real science, and is not a valid source of epidemiologic data. Quoting MRF should be easy for Stricker, who is on their board.

The article then goes on to assert that morgellons is characterized by mysterious fibers under the skin. They make the same somewhat mystical assertion that is common on morgellons websites:

this material is often labeled as "textile fibers" on pathologic examination. However, a more thorough analysis of the fibers performed by the Federal Bureau of Investigation forensics laboratory has revealed that the fibers do not resemble textiles or any other manmade substance. In fact, the fibers are virtually indestructible by heat or chemical means, making analysis difficult by conventional methods.[6]


The citation for this rather bold and unusual assertion?

6. Wymore R. Personal communication. May 4, 2009.


Yeah. Wymore is this guy in Oklahoma who is supposedly doing all sorts of groundbreaking research into morgellons, but somehow none of it gets published. He doesn't happen to be a dermatopathologist or materials scientist or anything else relevant to the field, so maybe he's just in over his head.

So apparently the purpose of this study was "to identify prevalent symptoms in patients with clinically confirmed subcutaneous fibers in order to develop a case definition for Morgellons disease." Is it just me, or is that a bit circular? So how did they identify cases?

The convenience sample included all patients seen in the first author's San Francisco medical office who met the inclusion criterion. The subject inclusion criterion was a positive examination for microscopic subcutaneous fibers as visualized by the first author using a 60 × handheld lighted magnifier. There were no exclusion criteria for the sample group because the inclusion criterion was narrowly defined to promote a homogeneous sample.


So the author, who works at a clinic that specializes in, among other things, morgellos as she defines it chose subjects who she thought had fibers in their skin. I look at skin every day. I'm no dermatologist---and I know it. I know that if I see something under the scope that looks funny to me, I need to call a dermatologist. I wonder if she sent any of these fibers to an expert (other than Wymore or TEH FBI!!!)? No?



Also see this analysis of: Savely, V., Leitao, M. (2006). The Mystery of Morgellons Disease: Infection or Delusion?. American Journal of Clinical Dermatology, 7(1), 1-5.

rlstanley
Posts: 1637
Joined: Mon 3 Dec 2007 2:53

Re: The Facts Behind The Medical Mystery Of Morgellons

Postby rlstanley » Sat 15 May 2010 3:51

Martian:
...The publisher describes it as "open access" and emphasizes that, "[t]he journal is characterized by the rapid reporting of clinical studies, reviews and original research in skin research and skin care." The journal even has a "testimonials" page. That's unique. I'm pretty sure most of the journals I read don't have that. All of the testimonials agree that the service is excellent.


from: http://docs.google.com/viewer?a=v&q=cac ... PM-itCo7ng

Dove Press
Dove Press (the name also appears as Dovepress and Dove Medical Press) publishes “Open access peer-reviewed biomedical and scientific journals.” It lists 76 titles. The Contact Us page lists two office locations, one in Macclesfield, U.K. and one in Memphis, Tennessee; the domain name, however, is registered in Auckland, New Zealand.

We believe that Dove Press is one of two brands of the company that also owns Libertas Academia (discussed later in this article). The journals all list editors and editorial boards. The titles all have ISSN numbers but not DOIs. Unlike most of the other publishers described here, this one boasts full-color figures and tables in its articles, and the articles have a very professional look to them.

Dove Press boasts a rapid submission to publication time. The site states, “We have one of the fastest turnaround times of any medical publisher in the world. Generally peer review is complete within 2-3
weeks and the editor’s decision within 24 hours of this.” The site offers a simple search box that searches its entire content, including the articles, but it doesn’t work very well. When we tested this search box, we found that some searches returned articles that did not contain our search term.

This publisher made the news recently when it was revealed that murder suspect and University of Alabama Huntsville professor Amy Bishop had published an article in the Dove Press publication Inter-
national Journal of General Medicine
. The paper has since been removed from the publisher’s site. According to a report in the Wall Street Journal, the “… article was published in May 2009 and names her husband and three of her four children, all of whom are under 19 years of age, as co-authors”.1.

It’s clear that Dove Press, like the other publishers we review here, are mere vanity presses.

--------

1. Esterl, Mike, and Chris Herring. 2010. “After Slayings, University
Tries to Regroup,” The Wall Street Journal [Online], February 18.
http://online.wsj.com/article/SB1000142 ... theadlines


rlstanley
Posts: 1637
Joined: Mon 3 Dec 2007 2:53

Re: The Facts Behind The Medical Mystery Of Morgellons

Postby rlstanley » Thu 24 Mar 2011 16:30

up since this topic is currently being discussed.


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