August 2007

Morgellons is by far the best known example of one of several similar conditions characterized by crawling sensations, skin problems (lesions and sores), and the finding of fibers on the skin. The more general term for a condition like this is a “Fiber Disease”. Mary Leitao discovered it on the internet in 2002, and decided it applied to her son’s eczema She called it “Morgellons”, and started an internet phenomena. But the exact same list of symptoms has been around for a lot longer.

Of course, as the Morgellons Research Foundation points out, since these conditions resemble Delusions of Parasitosis, then similar things must have been happening at least since DP was first described over a hundred years ago. What is relatively new is the formation of groups that band together in their insistence that their conditions are caused by some unidentified parasite, toxin, or infectious agent. There are various groups, and various theories, dating back many years.

The following is a brief time-line of various important points in the development of Fiber Disease organizations.

1947, in Skin Manifestations of Internal Disorders, Kurt Weiner describes DP patients who:

“persistently bring little follicular plugs, scales, or woolen fibers wrapped in paper or kept in a box to convince the doctor they have worms or insects in their skin”

1951, Feb – Jay Traver published her paper “Unusual Scalp Dermatitis in Humans Caused by the Mite, Dermatophagoides“. This describes her experiences since 1934 of her own belief in infestation, but inability to get doctors to concur. While she does not mention fibers, her account is often pointed to as validation by people with the fiber disease. Later examination of her evidence concluded the few mites she found were ordinary dust mites, and Traver was in fact suffering from delusional parasitosis (see: John O’Donel Alexander, 1984, Arthropods and Human Skin)

1995 – Approximate date of cases of “NCS” described by Amin in 2001, below.

1995 – Approximate date that NPA started recording cases of “an increasing number of individuals reporting lice or scabies but describing symptoms inconsistent with either of these parasites.”

1996 – Approximate start of popular usage of the internet. From 1996 to 2007, internet usage grows from 16 million to 1093 Million. The internet is a major factor in spreading knowledge of the fiber diseases.

1998, Dec – Oldest archived version of the NUSPA web site. States:

However, because the parasite appears to have so many different metamorphic features, many of which may resemble, human hair, fabric or lint (for example) turn of the century physicians wrongly assumed their patients must have been suffering from a psychosomatic illness rather than a disease.
Rashes, lesions, itching, burning sensations, track marks, scratches, and papules appear from nowhere on the surface of the skin, along with burrows under the skin, containing what the sufferer describes as “eggs”. Some people complain of having symptoms in only one spot on the skin ( i.e., scalp, face, rectum, groin area) while others are infested from head to toe. Acute insomnia can also be a symptom of this disease.
Black specks, iridescent crystals, microscopic hairs, wormlike creatures, hairlike creatures (the size of an eyelash to several inches long, and colors ranging from transparent to shinny black) “lintlike balls” bloody and/saltlike granules and threads, have all been described as emerging from the lesions. Often clothes, bedding, carpets, furniture and cars are heavily infested, again without remedy.

1999, Feb –Postings on parasite mailing list mention parasites that look like “lint” and “hairs”. (Posts byJules and Curtis W. King.)

1999, Oct – Posting on “Elliot’s Disease“, mentions involvement with the NPA.

2000, Feb – NPA has a “Reporting Registry” for Elliot’s Disease (or: “undetermined pathogens which may mimic lice and scabies“), listing the following symptoms:

Sores or lesions, Biting or stinging sensation, Itching, Lumps on head/scalp, Sticky residue on skin, Sparkly particles on skin, Scaling skin, Hair breaking off, White specks on skin, Black specks on skin, Problem in genital area, Itchy, watery eyes, Crawling sensation, Rash, Tracking marks on skin, Hard/crusty shell-like particles on skin, Fibers/lint/fuzzy artifacts, Hair-like dust particles, Symptoms worse at night, Tiny salt-like crystals on skin, Skin discoloration, Scarring

2001, Summer, Mary Leitao finds fibers on her son’s skin. She finds a “Scabies Forum” on the internet where people are discussing finding fibers.

2001, Nov – Neuro-cutaneous Syndrome (NCS): A New Disorder, published by Omar M. Amin in Discover Magazine.

2002, March – Morgellons.com and Morgellons.org domain names registered.

2002, July – Posting by Mary Leitao on medhelp.org mentions morgellons.org, and says:

The symptoms of this skin disease include stinging, pruritic (itchy), non-healing skin lesions. FIBERS of unknown origin are found deep within skin lesions, and are NOT the result of clothing or environmental fibers. Oils or lotions rubbed into the skin can cause many of these fibers to surface on clean skin.

2002, Dec – First Usenet mention of Morgellons, seems to be an excerpt from Rense.com linking Morgellons to chemtrails.

2003, Jun – The Morgellons Foundation, first recorded web site on archive.org, stating:

Individuals with the Morgellons experience itchy, inflamed, non-healing skin lesions. Stinging sensations are common. Unexplained hairloss is seen in a segment of the patient population, as well as a hardening or thickening of skin.
One of the most striking features of the Morgellons is the presence of fibers or filaments of unknown origin on or within skin lesions.

2003, Aug – NPA writes article on Collembola infestation based on digitally altered images, published May 2004.

2004, March, the first local TV News segment on Morgellons at KTVU, orchestrated by Ken Cowles. This is the start of a media campaign that culminates in the summer of 2006 with the ABC Medical Mysteries segment.

2004, May – Earliest mention of Morgellons on CherokeeChas.com (Later home of the NMO)

2004, Dec – Earliest Mention of Morgellons on Lymebusters.

2005, May – Oldest archived Morgellons post on Lymebusters message board.

2005, May – W. John Martin proposes “Alternate cellular energy pigments” as a cause of the Fiber Disease

2005, Aug – A mammoth single thread is started on biology-online.org, entitled “The Fiber Disease“, the thread runs around 7000 posts until Jan 2007, when it is locked.

2006, Apr – MorgellonsWatch.com earliest post, highlighting some inconsistencies on the MRF site.

2006, Aug – The MRF splits in two, and the NMO is formed.

http://columbiacitypaper.com/2007/8/19/science-friction

 It has been a year since the media storm surrounding Morgellons disease peaked and died. The news angles were essentially the same: an alarmist anecdotal lede like the one above, usually featuring a Morgellons sufferer in the reporter’s respective area; the story—or at least mention—of Pennsylvania-cum-Surfside Beach, S.C. resident Mary Leitao, a mother of three who discovered and named the affliction and who founded the Morgellons Research Foundation (MRF); the emerging science, some legitimate, some quackery and the medical community’s dismissal of the symptoms as psychosomatic; something about the CDC; the whole thing capped off with a tragic, cliffhanger-like ending: “For now, the only thing they can do is spread awareness and hope for a cure.” Fade out.

I did not really think many people take the various Morgellons videos seriously. Most of the time it’s pretty obvious what is in the video, and the rest of the time it’s not obvious what we are even looking at.

But it seems some people find these videos interesting, so I though I’d have a go at duplicating some. A couple of hours later, I came up with these three:

A Morgellons worm covered in various weird fibers:
http://video.google.com/videoplay?docid=9105798633025192447&hl=en

A Morgellons fiber with a life of its own, attacking my finger!
http://video.google.com/videoplay?docid=-8108284976579513990&hl=en

A live Morgellons worm, with something coiled inside of it, with fibers on its head.
http://video.google.com/videoplay?docid=8780637254219877005&hl=en

It just goes to show how things are open to interpretation.

If anyone has some other Morgellons video they would like me to duplicate, then please let me know.

Compare the second fiber video with this “real” Morgellons fiber from the former medical director of the MRF, Dr Greg Smith:
http://video.google.com/videoplay?docid=-987303669356961178&hl=en

The following email comes from George, a Morgellons Watch reader:

I am not a Morgellons sufferer, although I have closely followed the debate since 2005. What I have to say here is not meant to be inflammatory to either side of this issue. What I do have to say is important: If you go to a physician and they prescribe you a medication: YOU SHOULD TAKE IT. Just because *you* don’t think you have DOP and you’re prescribed ORAP-doesn’t mean you shouldn’t take it. Take the full course prescribed. If you don’t feel better after fully following your physician’s advice then return to him/her and say- I did what you told me to and I’m not better, what’s next? For people who have pseudomonas or MRSA if you don’t take your antibiotic medications these infections will eventually kill you. These are life threatening and extremely dangerous. MRSA is much more of a threat than “morgellons”. This prevalent attitude of “he gave me an anti-psychotic, therefore he thinks I’m crazy, so I just won’t listen to him” is not helping either the treating physician or the patient. This could be why physicians do not want to be involved in treating this disease.

Let me just give a personal, non-morgellons related antidote. I have had problems with mood swings and occasional depression my whole life. When physicians would suggest I was depressed I would get angry and not fill the prescriptions. It got to the point where I was occasionally contemplating suicide. I saw a psychiatrist finally and was put on an anticonvulsant that is also used for mood regulation. My life has changed. I could have continued locking myself in my room, ignoring work and my family, and I may have never known the difference. I was willing to trust this doctor’s opinion and it has made a change I wouldn’t have deemed possible.

My point is this: many of you are using horse wormer to try to get help. You have no idea what this may do to your overall health over time. This may actually worsen your health to the point that you are suffering from more than just “Morgellons”. The wormer may have ruined your liver, but you may believe the liver damage is caused by Morgellons. I think that if all of the patients went to their primary care physician, took whatever meds they prescribed no matter what their personal opinion on those meds is, and then went back to the SAME physician and told them, nope that didn’t work what can we try now? You have a better chance of returning to health than you do by dousing yourself in bleach, mosquito spray, lice treatments and the other non-prescribed ways you are trying to help yourself. Take the road with your physician all the way to the end and then if you still end up without relief, then and only then consider more non-traditional methodologies.

Lastly MANY medications are used for off label purposes. You may not know why the physician prescribed that medication because you are just looking at the typical patient information that is available to you. Seroquel is an atypical antipsychotic and can be used for primary sleep disorders. ASK the doc why they are prescribing it to you, it may not be for the reasons you assumed.

Randy Wymore (the Morgellons researcher at OSU, and a former director at the Morgellons Research Foundation) recently appeared on X-Zone radio (http://tinyurl.com/2azumk, about at 2:20), and here are some excerpts of what he said:

Question: What if the CDC concludes that Morgellons is Delusions of Parasitosis?

Wymore: That’s impossible from my perspective, and would be just completely irrelevant because the president of the medical school has in the last six months authorized a center for the investigation of morgelllons disease at, in Tulsa, at the Oklahoma State University Center for Health sciences.

Our physicians have seen, I don’t know the exact number, but, I’m a Phd, I’m a scientist, not a physician, and, er, they’ve seen somewhat on the order of around 30 patients, who claim to have Morgellons disease and only one of that group who came through who thought they had this most likely did not have Morgellons and might be suffering from DoP or another psychiatric disorder that does not have Morgellons as the cause of the behavioral changes. So, 29 out of 30 is a pretty high number, and just last week in fact, a couple came up from Texas, and the woman is a nurse and she was examined by Dr Rhonda Casey, a physician, assistant professor of pediatrics at the center at OSU, and right there, with a dermatoscope, that was being broadcast on an HDTV, she was able to find fibers under the skin of the person. In fact every single person who has claimed to have Morgellons disease, fibers have been found under the skin.

You know, the standard … comment is, well, the fibers are textiles, they’re clothing, they’re sticking to scabs, well our physician has completely avoided the open lesions areas and gone away from the lesions to what look like to the naked eye perfectly normal skin. And yet they (use) the dermatascope, which is basically just a hand held magnifying scope that is able to view smaller objects, they are underneath the superficial skin, are these unusual fibers.

Now, every person who claims to have Morgellons disease … have those fibers visible and zero percent of us, who don’t have Morgellons, when our skin’s been examined, not a single person in the sort of, you know, negative control population, which is basically some medical students, doctors, and so forth, … not one of us has had any of those fibers under their skin.

There is something physically different between individuals who have Morgellons disease and the rest of the population. So, you know, with those sorts of numbers, there is no question in, not only my mind, but our minds, collectively I would say, that Morgellons has a real physical pathology. So it’s impossible that they [the CDC] could come to the conclusion that it is a purely psychiatric disorder.
…

This is one of the problems with this population, there just has not been really adequate diagnostic testing. Now Dr Casey has, through her brilliance, or stumbling upon it, or whatever you want to call it, stumbled upon the fact that in the “normal” looking skin of Morgellons patient there are these fibers in the superficial layers of the skin that are not scarred or not, so there should not be any superficial, environmental textile fibers under the skin. Well, that’s great, but it would be nice if we could find some other diagnostic criteria. And, but you know, that, there you know you getting into some bigger bucks, but certainly a few hundred thousand dollars would be enough to make some very serious headway on this.

Why, if they have this 100% accurate diagnostic test, with no known false-positives or false-negatives, do they have to spend a “few hundred thousand dollars” to find another one?

From the paper:
“Diffuse Pruritic Lesions in a 37-Year-Old Man After Sleeping in an Abandoned Building“, by Jeffrey Dunn, M.D., Michael B. Murphy, B.A., Katherine M. Fox, B.A., Am J Psychiatry 164:1166-1172, August 2007:
http://ajp.psychiatryonline.org/cgi/content/full/164/8/1166

A controversial phenomenon possibly related to delusions
of parasitosis inspiring discussion and media attention
is Morgellons’s disease. As in delusions of parasitosis,
patients describe insects/parasites crawling on or under
the skin, are convinced they are infested and contagious,
and produce physical “evidence” of infestation. In particular,
though, patients complain of fibers extruding from the
skin; such particles produced for examination have been
variously identified as cellulose, fibers with “autofluorescence,”
fuzz balls, specks, granules, Strongyloides stercoralis,
Cryptococcus neoformans, “alternative cellular energy
pigments,” and various bacteria. In no case, however, has
an infectious etiology for these mysterious symptoms
been confirmed. Morgellons’s disease is largely regarded
in the dermatology literature as a manifestation of delusions
of parasitosis (and potentially a means of promoting
patient rapport through destigmatization), despite the efforts
of the Morgellons Research Foundation to promulgate
an infectious rather than a neuropsychiatric etiology.
Until a treatable infectious component is identified, patients
can continue to be treated with neuroleptics—pimozide,
risperidone, aripiprazole—which have been reportedly
effective

Also note eMedicine article by Noah S Scheinfeld, MD, JD, FAAD
http://www.emedicine.com/derm/topic939.htm

Savely et al introduced the term morgellons disease to describe a type of infestation characterized by fibers attached to the skin. The entity appears to be little more than a new designation for DP. Koblenzer and Waddell and Burke have discussed the utility of the term, with Murase et al finding the term useful for building a therapeutic alliance with patients with DP. The Centers for Disease Control and Prevention is currently investigating Morgellon disease.

See also similar sentiments in the Atlas of Human Parasitology, 2007
http://morgellonswatch.com/2007/07/24/morgellons-in-the-atlas-of-human-parasitology/

So it seems that Psychiatrists, Dermatologists and Parasitologists all agree somewhat.