Subject: Morgellons. Part 2. May
13, 2011.
This talks about a convention of people who have and study
Morgellons.
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Many of the attendees have been diagnosed with DOP, a subject
that enrages one of the first speakers - Dr Greg S-ith, a
paediatrician 28 years' experience. "Excuse me, people!" he
says. "This is morally and ethically wrong! So let me make a
p-litical statement, boys and girls." He pulls off his jumper,
to reveal a T-shirt reading, "DOP" with a red line through it.
"No more!" he shouts above wild applause. "No more!"
Later, Sm-th tells me he's been a sufferer since 2004. "I put a
sweatshirt I'd been wearing in the garden over my arm and there
was this intense burning, sticking sensation. I thought it was
cactus spines. I began picking to get them out, but it wasn't
long before it was all over my body." He describes "almost an
obsession. You just can't stop picking. You feel the sensation
of something that's trying to come out of your skin. You've just
got to get in there. And there's this sense of incredible
release when you get something out."
Smit-'s exposed skin is covered in waxy scars. Although he
still itches, his lesions appear to have healed. If, as
morgellons patients believe, the sores are not self-inflicted
but caused by fibre-creating parasites, how is this possible? "I
absolutely positively stopped picking," he says.
That evening, at a nearby Mexican restaurant, I meet Margot, a
midwife from Ramsgate who has resorted to bathing in bleach to
rid herself of morgellons. She describes how, armed with times-
three magnification spectacles, a magnifying glass and a nit
comb, she scraped "black specks" from her hair and face on to
sticky labels and took them to a dermatologist. She was
diagnosed with DOP. "I'm a midwife," she says. "I take urine
samples and b-ood specimens. So I was taking them a specimen.
That's what wrecked my life and career."
Next, I corner Randy W-more. He is a slim man with a charcoal
shirt, orange tie and neatly squared goatee. "We have not yet
exactly replicated the exact results of the forensics people in
Tulsa," he admits. So far, the laboratory has found Wy-ore's
various morgellons fibres to be: nylon; cotton; a blond human
hair; a fungal fibre; a rodent hair; and down, most likely from
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 sense on one. And another was unknown." There's a
pause. "Well, they said it was a 'big fungal fibre', but they
weren't completely convinced."
The next day, nursing practitioner Dr Ginger S-vely, who claims
to have treated more than 500 morgellons patients, leads an
informal discussion in the conference 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 one burrow into
a pad," adds another. "One of my d-ctors thinks it's
nanotechnology"; "I was attacked by a swarm of some type of tiny
wasps that seemed to inject parts of their bodies under my
skin"; "They have bugs on public transport. Never put your
suitcase on the floor of a train."
A furious woman with a big scar on her jaw says, "I have Erin
B-ockovich's lawyer's number 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 lady two
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,
pinkly scrubbed cheek weeps.
I retire to the lobby to await my allotted chat with Sav-ly. I
become aware 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 has been a surge in complaints about cleanliness. "Oh
yeah." She leans forward and whispers conspiratorially. "I think
it's part of their condition."
Yet, when we speak, Savel- is resolute. "These people are not
crazy," she insists. "They're good, solid people who have been
dealt a bad lot."
A woman approaches the vending machine behind -avely. Between
her hand and 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. For people
to say you're delusional is very anxiety-provoking. Then they
get depressed. Who wouldn't? The next stage is usually an
obsessive-compulsive thing - paying attention to the body in
great detail. But, again, I feel this is understandable, in the
circumstances."
I slip back into the conference room, where Margot is using her
3700 Wi-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
group around 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 even bigger fibre. I wipe for a second
time. And find another one. Margot looks up at me with wet,
sorry eyes. "Are you worried?" She puts a comforting hand on my
arm. "Oh, don't be worried, Will. I'm sure you haven't got it."
Back in London, I find a 2008 paper on morgellons in the
journal D-rmatologic Therapy that describes patients picking "at
their skin continuously in order to 'extract' an organism";
"obsessive cleaning rituals, showering often" and individuals
going "to many physicians, such as infectious disease
specialists and dermatologists" - all behaviours "consistent
with DOP". (For treatment, the authors recommend prescribing a
benign antiparasitic ointment to build trust, and supplementing
it with an antipsychotic.) After finding "fibres" on my own
hand, I'm fairly satisfied morgellons is some 21st-century genre
of OCD spread through the internet and the fibres are - as
Wy-ore's labs report - particles of everyday, miscellaneous
stuff: cotton, human hair, rat hair and so on.
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's affecting me: the night after my meeting
with Paul, I couldn't sleep for itching. I had two showers
before bed and another in the morning. All through the
convention, I am tormented; driven to senseless scratching. Why
is itch so infectious?
I contact Dr Anne Louise O-klander, associate professor at
Harvard M-dical School and perhaps the only neurologist in the
world to specialise in itch. I email her describing morgellons,
pointing out it's probably some form of DOP. But when we speak,
she knows all about morgellons already. "In my experience,
morgellons patients are doing the best they can to make sense of
symptoms that are real. They're suffering from a chronic
disorder that's undiagnosed. They have been maltreated by the
me-ical establishment. And you are welcome to quote me on that,"
she adds.
In 1987, German researchers found itch wasn't simply the weak
form of pain it had always been assumed to be. Rather, they
concluded itch has its own separate and dedicated network of
nerves. And while a pain nerve has a sensory jurisdiction of
roughly a millimetre, an itch nerve can pick up disturbances on
the skin over three inches away.
Oak-ander surmises that itch evolved as a way for humans
instinctively to rid themselves of dangerous insects. When a
mosquito lands on your arm and it tickles, this sensation is not
the straightforward feeling of its legs pushing on your skin. It
is, in fact, a neurological alarm system; one that can go wrong
for a variety of reasons - shingles, sciatica, spinal cord
tumours or lesions, to name a few. In some cases, it can be
triggered, suddenly and severely, without anything touching the
skin.
This, Oaklan-er 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 on them. To your brain, it's exactly
the same. So you need to look at what's going on with their
nerves. Unfortunately, what can happen is a dermatologist fails
to find an explanation and jumps to a psychiatric one."
That's not to say there aren't some patients whose problem is
psychiatric, she adds. Others still might suffer delusions in
addition to their undiagnosed neuropathic illness. Even so,
"It's not up to some primary care physician to conclude that a
patient has a major psychiatric disorder."
The CDC is due to publish a long-delayed study on the condition
and, if it proves Oakland-r's theory correct, this would explain
a great deal. Why, for example, Greg Smi-h's lesions stopped
developing when he stopped scratching: because they were self-
inflicted. Why I found fibres on my hand: because they are
picked up from the environment. What's more, if morgellons is
not actually a d-sease but a combination of symptoms that might
have all sorts of different maladies as its source, this squares
with something S-vely said she's "constantly perplexed about
when I find a treatment that helps one person, it doesn't help
the next at all. Every patient is a whole new ball game."
I phone Paul and explain the itch-nerve theory.
"I can't see how that relates to the physical condition," he
sighs. "I've got marks on my back that I can't even reach. I've
not created those by scratching."
I ask how he has been. "Pretty c-ap, actually. Been forced out
of my job. They said it's 'based on my engagement level', and
that's down to the lack of energy I've got. I can't sign myself
off sick or as having a degraded performance because morgellons
is not a diagnosis. There's no legitimate reason for me not to
be operating at full speed."
There's a silence.
"Another thing has been destroyed by this di-ease," he says
finally. "And all because morgellons isn't supposed to exist."
Some names have been changed.
Source: The Guardian
http://www.guardian.co.uk/lifeandstyle/2011/may/07/morgellons-mysterious-illness
Part 2.
John Winston. johnfw@mlode.com