Morgellons

Once you get past the usualexplanation in which the patient is blamed, we have a clear case for exposureto micron sized fibers, likely from fabrics since we are also seeing colors.  It is most likely a specific fiber, as yetunidentified.  Importantly, it is inertto biological attack.  That is why itmust be eliminated from the body.

This sounds like modern technologyto me and possible someone cutting corners in China.  Perhaps not but it is necessary to determinethe nature of the material.

I would also suggest that normalfiber accumulations in house dust could easily produce a handy supply andhowever the body ingests such, if passing through the bowel is not an option,passing out through the skin is option.

Thus we explain the primarysymptom and its apparent modernity.

Anyone who has handled fiberglassknows the sensation felt on bare skin and this is a similar problem.  The fiber itself has become too brittle perhapswith age and oxidation and small shards get onto the skin and penetrate tooeasily.

This indicates that allsynthetics need to be tested for this risk under aging conditions.

Morgellons: A hidden epidemic or mass hysteria?

It's a mysterious condition that affects tens of thousands worldwide.But what is it?

Will Storr

The Guardian,Saturday 7 May 2011

Optical image of what sufferers are adamant are morgellons fibres inskin samples - are they made up of alien ­matter, or are ­everyday materialsthe more likely explanation? Photograph: Vitaly Citovsky/Suny at Stony Brook

http://www.guardian.co.uk/lifeandstyle/2011/may/07/morgellons-mysterious-illness

It all started in August 2007, on a family holiday in New England. Paul had been watching Harry Potter And The OrderOf The Phoenix with his wife and two sons, and he had started to itch.His legs, his arms, his torso – it was everywhere. It must be fleas in theseat, he decided.

But the 55-year-old IT executive from Birmingham has been itching ever since, andthe mystery of what is wrong with him has only deepened. When Paul rubbed hisfingertips over the pimples that dotted his skin, he felt spines. Weird, alienthings, like splinters. Then, in 2008, his wife was soothing his back withsurgical spirit when the cotton swab she was using gathered a curiousblue-black haze from his skin. Paul went out, bought a £40 microscope andexamined the cotton. What were those curling, coloured fibres? He Googled thewords: "Fibres. Itch. Sting. Skin." And there was his answer. It mustbe: all the symptoms fitted. He had a new disease called morgellons. The fibres were theproduct of mysterious creatures that burrow and breed in the body. As he readon, he had no idea that morgellons would turn out to be the worst kind ofanswer imaginable.

Morgellons was named in 2001 by an American called MaryLeitao, whose son complained of sores around his mouth and the sensation of"bugs". Examining him with a toy microscope, Leitao found him to becovered in unexplained red, blue, black and white fibres. Since then, workersat her Morgellons Research Foundation say they have been contacted by more than12,000 affected families. Campaign group the Charles E Holman Foundation states there are sufferers in"every continent except Antarctica".Thousands have written to Congress demanding action. In response, more than 40senators, including HillaryClinton, JohnMcCain and a pre-presidential BarackObama, pressured the CentresFor Disease Control And Prevention (CDC) to investigate; in 2006, itformed a special taskforce, setting aside $1m to study the condition. Sufferersinclude folk singer JoniMitchell, who has complained of "this weird incurable disease thatseems like it's from outer space... Fibres in a variety of colours protrude outof my skin: they cannot be forensically identified as animal, vegetable ormineral. Morgellons is a slow, unpredictable killer – a terroristdisease. It will blow up one of your organs, leaving you in bed for ayear."

So it's new, frightening and profoundly odd. But if you were to seekthe view of the medical establishment, you'd find the strangest fact about thisdisease: morgellons doesn't exist.

I meet Paul in a pub in a Birminghamsuburb. He shows me pictures he's collected of his fibres. On his laptop, agrim parade of images flicks past. There are sores, scabs and nasal hairs, eachmagnified by a factor of 200. In each photo there is a tiny coloured fibre onor in his skin.

"Is it an excrement?" he asks. "A byproduct? A structurethey live in?" A waitress passes with a tray of salad as he points toan oozing wound. "Is it a breathing pipe?"

Paul absent-mindedly digs his nails into a lesion just below the hem ofhis shorts. Little red welts pepper his legs and arms, some dulled to a waxymaroon, others just plasticky-white scar tissue.

He has seen an array of experts – GPs, allergy doctors, infectiousdiseases clinicians and dermatologists. Most end up agreeing with the skinspecialist to whom he first took samples of his fibre-stained cotton: his soresare self-inflicted and he suffers from delusionsof parasitosis(DOP), a psychiatric condition in which people falselybelieve themselves to be infested. This particular form of DOP is thought to beunique, in that it's spread through the internet. Whereas in the past,episodes of mass hysteria were limited to small communities – perhaps the mostfamous being the witch panic in Salem,Massachusetts in the 1690s – today, imagined symptoms can spread muchfarther on the web.

Paul is not convinced by this diagnosis. He carries an alcohol hand geleverywhere he goes, has four showers a day and steam-cleans his clothes. Thestress leaves him exhausted, short-tempered. He has difficulty concentrating orapplying himself at work. His lowest points have been "pretty much feelinglike ending it. Thinking, could I go through with it? Probably. It's associatedwith the times the medical profession have dismissed me. It's just… I can't seemyself living for ever with this."

Has he mentioned these thoughts to his doctor?

"No, because talking about things like that adds a mental angle –supports the prognosis of DOP. And it's absolutely a physical condition. Imean, look!"

The evidence on his computer does appear convincing. Much thinner thanhis body hair, the fibres seem to be protruding from his sores. But what arethey? And how did they get there? To find out, I'm heading to the 4th Annual Morgellons Conference in Austin, Texas,to meet a molecular biologist who doesn't believe the medical consensus.Rather, he argues, the forensic tests he's commissioned on the fibres point tosomething altogether more unworldly.

In spring 2005, Randy Wymore, associate professor of pharmacology atOklahoma State University,stumbled across an article about morgellons. Reading about the fibres sufferersbelieved were the byproduct of some weird parasite, but which were dismissed bydermatologists as humdrum environmental detritus, he thought, "But thisshould be easy to figure out." He emailed sufferers, requesting samples,then compared them with samples of cotton, nylon, carpets and curtains.Examining them under the microscope, he got a shock. The sufferers' fibreslooked utterly different.

Wymore arranged for fibre analysis at the Tulsa police department's forensiclaboratory. Moments into his tests, a detective with 28 years' experience ofthis sort of work murmured, "I don't think I've ever seen anything likethis." The morgellons particles didn't match any of the 800 fibres ontheir database, nor the 85,000 known organic compounds. He heated one fibre to600C and was astonished to find it didn't burn. By the day's end, Wymoreconcluded, "There's something real going on here. Something we don'tunderstand at all."

Last year, he approached several commercial laboratories to run furthertests, but the moment they discovered the job was related to morgellons, firmafter firm backed out. Finally, Wymore found a lab prepared to take the work.It is these results that will be revealed during the course of thetwo-day conference.

Dr Greg Smith is covered in waxy scars caused, he says, by morgellons:‘You feel the sensation of something that’s trying to come out of your skin.’Photograph: Bartram Nason for the Guardian

An hour south of Austin, in the lobby ofthe Westoak WoodsBaptist Churchconvention centre, morgellons sufferers from the US,UK, Spain, Germanyand Mexicogather by the breakfast buffet. Threads of conversation rise from the hubbub:"I mix Vaseline with sulphur and cover my entire body"; "Themore you try to prove you're not crazy, the more crazy they think youare"; "The whole medical community is part of this. I wouldn'tsay it's a conspiracy but…"

Many of the attendees have been diagnosed with DOP, a subject thatenrages one of the first speakers – Dr Greg Smith, a paediatrician of 28 years'experience. "Excuse me, people!" he says. "This is morally andethically wrong! So let me make a political statement, boys and girls." Hepulls off his jumper, to reveal a T-shirt reading, "DOP" with a redline through it. "No more!" he shouts above wild applause. "Nomore!"

Later, Smith tells me he's been a sufferer since 2004. "I put asweatshirt I'd been wearing in the garden over my arm and there was thisintense burning, sticking sensation. I thought it was cactus spines. I beganpicking to get them out, but it wasn't long before it was all over mybody." He describes "almost an obsession. You just can't stoppicking. You feel the sensation of something that's trying to come out of yourskin. You've just got to get in there. And there's this sense of incrediblerelease when you get something out."

Margot, a midwife from Ramsgate, takes regular saunas in an attempt torelieve her symptoms; in the past, she has gone so far as bathing in bleach.Photograph: Nick Ballon for the Guardian

Smith's exposed skin is covered in waxy scars. Although he stillitches, his lesions appear to have healed. If, as morgellons patients believe,the sores are not self-inflicted but caused by fibre-creating parasites, how isthis possible? "I absolutely positively stopped picking," he says.

That evening, at a nearby Mexican restaurant, I meet Margot, amidwife from Ramsgate who has resorted to bathing in bleach to rid herselfof morgellons. She describes how, armed with times-three magnificationspectacles, a magnifying glass and a nit comb, she scraped "blackspecks" from her hair and face on to sticky labels and took them to adermatologist. She was diagnosed with DOP. "I'm a midwife," she says."I take urine samples and blood specimens. So I was taking them aspecimen. That's what wrecked my life and career."

Next, I corner Randy Wymore. He is a slim man with a charcoal shirt,orange tie and neatly squared goatee. "We have not yet exactlyreplicatedthe exact results of the forensics people in Tulsa," he admits. So far, thelaboratory has found Wymore's various morgellons fibres to be: nylon; cotton;a blond human hair; a fungal fibre; a rodent hair; and down, most likelyfrom geese or ducks.

"That's disappointing," I say.

He leans his head to one side and smiles. "It is, for the most part,disappointing, but there was a bunch of cellulose that didn't make senseon one. And another was unknown." There's a pause. "Well,they said it was a 'big fungal fibre', but they weren't completelyconvinced."

The next day, nursing practitioner Dr Ginger Savely, who claims to havetreated more than 500 morgellons patients, leads an informal discussion in theconference room.

Around large circular tables sit the dismissed and the angry."I've seen a fibre go into my glasses," says one. "I've seen oneburrow into a pad," adds another. "One of my doctors thinks it'snanotechnology"; "I was attacked by a swarm of some type of tinywasps that seemed to inject parts of their bodies under my skin";"They have bugs on public transport. Never put your suitcase on the floorof a train."

A furious woman with a big scar on her jaw says, "I have Erin Brockovich's lawyer'snumber in my purse. Don't you think I'm not going to use it."

"But who are you going to sue?" asks a frail, elderly ladytwo tables away.

The morgellons believers look expectantly at the indignant litigant."I don't know," she says.

In a far corner, a woman with a round plaster covering a dry, pinklyscrubbed cheek weeps.

I retire to the lobby to await my allotted chat with Savely. I becomeaware of a commotion at reception. One of the attendees is complaining loudly:"It's disgusting! Bugs! In the bed. I've already been in two rooms…"

When she's gone, I ask the receptionist if, over the weekend, there hasbeen a surge in complaints about cleanliness. "Oh yeah." She leansforward and whispers conspiratorially. "I think it's part of theircondition."

Yet, when we speak, Savely is resolute. "These people are notcrazy," she insists. "They're good, solid people who have been dealta bad lot."

A woman approaches the vending machine behind Savely. Between her handand the handle of her walking stick is a layer of tissue paper.

There is an element of craziness, I suggest.

"OK, there is," she says, "but it's understandable. Forpeople to say you're delusional is very anxiety-provoking. Then they getdepressed. Who wouldn't? The next stage is usually an obsessive-compulsivething – paying attention to the body in great detail. But, again, I feelthis is understandable, in the circumstances."

I slip back into the conference room, where Margot is using her £700Wi-Fi iPad telescope to examine herself. I have an idea.

"Can I have a go?"

Pushing the lens into my palm, I immediately see a fibre. The grouparound me falls into a hush. "Did you clean your hand?" Margot asks.She fetches an antibacterial wet-wipe. I scrub and try again. I find an evenbigger fibre. I wipe for a second time. And find another one. Margot looks upat me with wet, sorry eyes. "Are you worried?" She puts a comfortinghand on my arm. "Oh, don't be worried, Will. I'm sure you haven't gotit."

Back in London, I find a 2008 paper on morgellons in the journalDermatologicTherapy that describes patients picking "at their skincontinuously in order to 'extract' an organism"; "obsessive cleaningrituals, showering often" and individuals going "to many physicians,such as infectious disease specialists and dermatologists" – allbehaviours "consistent with DOP". (For treatment, the authorsrecommend prescribing a benign antiparasitic ointment to build trust, andsupplementing it with an antipsychotic.) After finding "fibres" on myown hand, I'm fairly satisfied morgellons is some 21st-century genre of OCDspread through the internet and the fibres are – as Wymore's labs report –particles of everyday, miscellaneous stuff: cotton, human hair, rat hair and soon.

There is one element of the condition that's been niggling, though.Both Paul and Greg's morgellons began with an explosion of itching. Now it'saffecting me: the night after my meeting with Paul, I couldn't sleep foritching. I had two showers before bed and another in the morning. All throughthe convention, I am tormented; driven to senseless scratching. Why is itch soinfectious?

I contact Dr Anne Louise Oaklander, associate professor at Harvard Medical School and perhaps theonly neurologist in the world to specialise in itch. I email her describingmorgellons, pointing out it's probably some form of DOP. But when we speak, sheknows all about morgellons already. "In my experience, morgellons patientsare doing the best they can to make sense of symptoms that are real. They'resuffering from a chronic itch disorder that's undiagnosed. They have beenmaltreated by the medical establishment. And you are welcome to quote me onthat," she adds.

In 1987, German researchers found itch wasn't simply the weak form ofpain it had always been assumed to be. Rather, they concluded itch has its ownseparate and dedicated network of nerves. And while a pain nerve has a sensoryjurisdiction of roughly a millimetre, an itch nerve can pick up disturbances onthe skin over three inches away.

Oaklander surmises that itch evolved as a way for humans instinctivelyto rid themselves of dangerous insects. When a mosquito lands on your arm andit tickles, this sensation is not the straightforward feeling of its legspushing on your skin. It is, in fact, a neurological alarm system; one that cango wrong for a variety of reasons – shingles, sciatica, spinal cord tumours orlesions, to name a few. In some cases, it can be triggered, suddenly and severely,without anything touching the skin.

This, Oaklander believes, is what is happening to morgellons patients."That they have insects on them is a very reasonable conclusion because,to them, it feels no different from how it would if there were insects onthem. To your brain, it's exactly the same. So you need to look at what's goingon with their nerves. Unfortunately, what can happen is a dermatologist failsto find an explanation and jumps to a psychiatric one."

That's not to say there aren't some patients whose problem ispsychiatric, she adds. Others still might suffer delusions in addition to theirundiagnosed neuropathic illness. Even so, "It's not up to some primarycare physician to conclude that a patient has a major psychiatricdisorder."

The CDC is due to publish a long-delayed study on the condition and, ifit proves Oaklander's theory correct, this would explain a great deal. Why, forexample, Greg Smith's lesions stopped developing when he stopped scratching:because they were self-inflicted. Why I found fibres on my hand: because theyare picked up from the environment. What's more, if morgellons is not actuallya disease but a combination of symptoms that might have all sorts of differentmaladies as its source, this squares with something Savely said she's"constantly perplexed about… when I find a treatment that helps oneperson, it doesn't help the next at all. Every patient is a whole new ballgame."

I phone Paul and explain the itch-nerve theory.

"I can't see how that relates to the physical condition," hesighs. "I've got marks on my back that I can't even reach. I've notcreated those by scratching."

I ask how he has been. "Pretty crap, actually. Been forced out ofmy job. They said it's 'based on my engagement level', and that's down to thelack of energy I've got. I can't sign myself off sick or as having a degradedperformance because morgellons is not a diagnosis. There's no legitimate reasonfor me not to be operating at full speed."

There's a silence.

"Another thing has been destroyed by this disease," he saysfinally. "And all because morgellons isn't supposed to exist."