
The Itch Nobody Can Scratch - Thevet
https://medium.com/matter-archive/the-itch-nobody-can-scratch-4d980e3ac519?src=longreads
======
throw_qXH0TQ
Several years ago my wife and I discovered we had bed bugs. We were early
twenties and had gotten married only nine months before. I started getting
bitten about a month before we discovered the infestation. My wife was never
bitten during the course of the infestation. We later learned that this is not
uncommon with bed bugs.

Now the relation to the story about Morgellons. Bed bug bites can be extremely
itchy and cause large welts on some people (not everyone as it is an allergic
reaction). This was true in my case. The welts tended to be about the side of
a silver dollar and last for about a week before subsiding.

We had contracted the bed bugs at a house party we had attended where I had
gotten a few bites. We assume they were mosquito bites and didn't think
another thing about them. About 2 weeks after that I started getting bites
while I was sleeping. Never having been exposed to bed bugs I first assumed
mosquito bites or perhaps spider bites. Neither of these cases turned out to
be true.

After two more weeks I began to feel very crazy for lack of a better word. The
itching from the bites was driving me wild and we could not figure out what
was biting me. (The infestation was never a large one, most likely it started
from a single insect). I went to the student health clinic (we were graduate
students at the time). They concluded bug bites but we were not sure because
we could not find any bugs!

I made an appointment with a private dermatologist. Now, before I got in to
see him we did more research. We did turn up bed bugs as a possibility and we
looked but not throughly enough and found nothing. (It turns out they are very
very good at hiding). The research turned up all kinds of crazy things like
the Morgellons disease and various mite related infestations, such as Bird
Mites. Having a bird we became alarmed at that particular possibility as bird
mites are tiny and very difficult to get rid of.

The internet research made my psychological condition rapidly deteriorate. I
worried constantly about the different possibilities. It effect my ability to
do research. It affected my ability to properly TA. I was becoming psychotic
in my search for the causing the itching that would not cease.

Finally, I got the private dermatologist. He suggested bed bugs and told us to
search again. This time, the infestation had grown and we found them. It was
such a relief to know the cause.

However, the cure is neither fast nor simple nor cheap for bed bugs.
Insecticides are ineffective as they only eat mammalian blood and the most
effect insecticides these days need to be ingested by the organism. The most
effect thing is physical removal of the insects, their eggs, and their larva.
The eggs and larva are tiny and it takes very careful searching to find and
clean them all.

We spent every night for months search with magnifying glasses and powerful
flash lights while washing and drying our bedding (heat treatment (or cold) is
the only sure fire solution to bed bugs). It took many months but eventually
we found them all and with the help the pest man's insecticides prevented the
infestation from growing out of control. Needless to say we moved and bought a
new bed when our lease was up!

Even today years later, I still fear unexplained itching. It think that for
me, I could have developed a psychosis where I believe I am being bitting by
invisible bugs if we had not found the infestation. It took a long time for my
mental state to recover and if it had gone on for 6, 12 months of unexplained
bites and itching I may have become very unstable. Itching is very difficult
to deal with.

I hope that someone can help these people find an effective way for them
individually to deal with the itching even if for some it is only in their
minds.

~~~
nodata
> We spent every night for months search with magnifying glasses and powerful
> flash lights while washing and drying our bedding

Why didn't you dispose of it and buy a new mattress and bedding?

~~~
rantanplan
Indeed. There are only 2 ways to get rid of them.

1) Throw away the bed. 2) Incinerate them; which is really hard, as you have
to make sure you got all their hidding places and left no prisoners. On top of
it, that method can't take place inside the house.

~~~
kaoD
A friend of mine had a case of bed bugs and throwing away the bed didn't work,
only hot steaming the whole house. The exterminators (is that the word? the
guys who get rid of infestations) found bugs hiding in the baseboards around
the house.

------
derefr
This reminds me quite strongly of the odd skin conditions people who are
addicted to stimulants (crack cocaine, meth) or needle drugs (heroin et al)
can get. Those are apparently mostly considered to be DOP as well—dopamine
spikes cause compulsive foraging; dopamine withdrawals cause itching.

But, having met my fair share of homeless addicts, some of them will indeed
have these very odd tiny, hard pustules on their skin, and claim there's
something sharp and grating within it which needs to be removed.

My naive hypothesis for this has always had to do with getting something like
kidney stones or gout—real little pointy crystals—due to deposits of these
foreign chemicals in the excretory system, which it can't manage to actually
excrete. If they were organic, this would result in a zit—but if they're weird
things like cutting agents, they might result in something much more painful.

My naive hypothesis here, then, is similar: these people have non-ejectable
foreign matter building up within their pores (either sweat out, or drifted
in), together with some biological process (maybe a fungus, maybe one of their
own proteins) that's sticking that foreign matter together into polymer
chains. There's no "bug" living in there; instead, the fibre itself is the
problem, and the irritation from it is what causes both the itching and the
initial skin sore.

~~~
cowpewter
Are you sure the tiny hard pustules aren't just keratosis pilaris[0]? I've
always had tiny, hard red bumps on my arms and thighs. It's genetic and
harmless. The body just overproduces keratin in the skin and it gets trapped
in the hair follicles, plugging them up. Keratin is hard - it's the same
protein that makes hair and fingernails.

[0]
[http://en.wikipedia.org/wiki/Keratosis_pilaris](http://en.wikipedia.org/wiki/Keratosis_pilaris)

------
DanBC
> Skeptics alike claim is actually at the root of Morgellons. They say that
> what people like him are really suffering from is a form of psychosis called
> delusions of parasitosis, or DOP. He is, in other words, crazy.

Fucking unhelpful to frame mental illness like this.

It is intensely frustrating to see people suffering - to the point where they
consider suicide - because of the stigma around mental illness.

~~~
cpncrunch
Yes, I completely agree. It would be better to talk about anxiety, chronic
itching, etc. and offer the patient some potential treatments. CFS,
fibromyalgia and IBS patients are in a similar situation.

~~~
michaelochurch
_It would be better to talk about anxiety, chronic itching, etc. and offer the
patient some potential treatments. CFS, fibromyalgia and IBS patients are in a
similar situation._

There's a disease called Hallucinogen Persisting Perception Disorder (HPPD)
that some people get after heavy use of psychedelics. The theory I subscribe
to is that they're actually overreacting (almost obsessively) to the defects
in perception that we all have. For example, if you stare at a bright white
screen, especially when tired, you'll eventually see "static" due to retinal
fatigue happening at uneven rates. The brain filters out a lot, but when that
filter is weakened or challenged, it can let "hallucinations" in. Most of us
aren't bothered by "white screen static" and hardly notice it. For some people
(such as those with HPPD, who may have strong emotional associations with
"tripping") that can be very distressing. In extreme cases, they can't go out
at night because they're bothered by (again) scotopic vision defects that all
of us have, but that (due to their anxiety) they can't tune out.

What I've noticed with anxiety is that there are things that are hard to un-
notice. For example, after reading that article, I itched like hell. I knew
why, so I didn't need other explanations (I basically know that reading any
article about health problems is going to be a bit masochistic) but there are
some distressing thoughts that are just very hard to banish, especially in a
state of fatigue (which is not uncommon in our overworked, bizarre society).
None of us is fully in control of our focus, and sometimes it's possible to
get into a feedback loop of anxiety producing weird symptoms (panic attacks,
for example, can throw all kinds of shit... even phantom smells) that produce
more intense focus and anxiety.

~~~
cpncrunch
I suspect that it might be low GABA that is causing the itching, as that is
the neurotransmitter that is reduced in alcohol withdrawal (actually, it's a
downregulation of GABA receptors), and it's GABA that reduces anxiety. As you
say, it's probably just a removal of the normal "anti itch" filter that causes
you to notice the itching.

I usually start itching when I read about fleas. There is an actual thing
called "contagious itching":

[https://en.wikipedia.org/wiki/Itch#Contagious_itch](https://en.wikipedia.org/wiki/Itch#Contagious_itch)

So there can definitely be a psychological trigger for itching. Add in some
anxiety and/or withdrawal and it's easy to see how something like Morgellons
could happen.

------
everyone
The sufferers extremely clean behaviour; having 3 showers a day, bathing in
bleach, having constantly clean clothes, using various lotions etc etc. is
probably going to wreck their skin and cause itching. Personally my skin is
very sensitive and tbh I'm much more comfortable when me, my clothes,
bedclothes etc are not cleaned so often. Also I have read that the cleanliness
of your average industrialised 1st world country house is far too clean and
this may have a role in causing people to develop allergies or have other
immune system related issues. We're not designed to live in medieval european
city style filth, but we are certainly not designed for hyper-cleanliness
either.

------
zoba
I suffered from an undiagnosed extreme itch condition which lasted over a
year. Thankfully, it was not Morgellons (though that was a hypothesis at one
point). I can't say whether the Morgellons folks are delusional or not, but I
can conclude that I was not (as I have been cured).

Aside from the itching/lack of sleep/depression, the most striking thing I
remember from that period is just how awful the medical system is. I started
visiting local dermatologists, then more renowned dermatologists, then finally
the guy who founded The International Forum For the Study of Itch. Once at the
top of the medical mountain, I was seen briefly, given a prescription which
may or may not work....and told to come back in 8 months!!!

I expected that our medical system, at the top, would be set up in such a way
that "special cases" would be passed off to people (labs, research groups) who
handle special cases and learn from it. This is not so.

What was also striking is how bound by rules doctors are - for the most part I
think a computer could do their decision making. If you don't fit into their
rules, then too bad. And yeah, they label you crazy which is such an awful
feeling (especially when, months later, I proved I was not).

In the end, I discovered I have some kind of uncommon mite which does not
affect most other people but which can be easily treated by ivermectin. I have
written more about my experience here:
[http://www.reddit.com/r/publichealth/comments/2ph9iy/xpost_m...](http://www.reddit.com/r/publichealth/comments/2ph9iy/xpost_my_interesting_story_how_i_solved_my_case/)

------
sebular
Great article. The strangest part for me was the sudden onset that people
experienced. When I think of psychological disorders, I think of how symptoms
usually start small and gradually get more severe.

Everybody gets small phantom itches from time to time. I think the idea of an
"itch nerve malfunction" makes the most sense. One could imagine some sort of
infinite loop of itch nerves triggering each other, exacerbated by constant
scratching.

Any strange psychological behavior, such as extreme cleanliness, or being
convinced that ordinary clothing fibers are the cause, would be an obvious
natural response if you couldn't figure out why you were suddenly so itchy.

Also, anyone who has to deal with contact lenses knows that our hands and
fingers always have tiny little fibers stuck to them.

~~~
yourad_io
FWIW, I can share my anecdotal periodic itching story:

Somewhat infrequently (a few times every year, for the past 11 years) I will
go into a "mode" where showering/bathing of any kind will invariably be
followed by itching afterwards. This lasts anywhere from a few days (no
scratching) to a couple of weeks (some scratching). The itch is concentrated
on my front body and legs (never face/arms, rarely back). Nothing helps much
except not scratching while it runs its course.

What I've found interesting is that this doesn't manifest during particular
stress / downs / whatever. It can be during an awesome holiday in the summer,
or over Christmas, or an ordinary work week. But the itching comes after every
shower, as if my body picks up some irritant from the water that doesn't
affect my hands/face at all. It also isn't "something in the water where I
live", as this has manifested in various parts of the UK and Greece.

On a scale of 0 to 10, I'm at 2 as to how manic I've gone about this: when it
manifests, I'll start using hypo-allergenic shower stuff, paste myself with
moisturising cream and just wait it out. Dermatologists have been the
expected/reputed amount of helpful: "sounds like you're sensitive to something
in the water", so they gave me a stronger cream, which also didn't reduce the
itching. What worked most was not picking/scratching, or at least not enough
to break skin/cause small wounds, etc. Depending on your "itch tolerance"[1]
takes a little bit of mental focus, so I wouldn't, say, shower before going to
bed, but showering and going out was easy.[2] Then, a few days later, I shower
-> all good.

I guess my point is, while mine could also be somewhat psychologically
induced, I don't think this is the case. Something seems to trigger an "itch
flare" which (a) isn't linked to my mood or stress levels, (b) always goes
away if I can "forcefully" ignore the urge to scratch and (c) is somehow water
related, but not to a particular water source. I feel like If I gave in to the
scratching urges, it would be a whole different kind of rabbit hole. So my
issue doesn't really compare in the least with what these folks are going
through - just a periodic experience of a similar thing at a lower intensity
level. You can't always "push aside" pain, so it stands to reason that you
can't always "push aside" the scratching urge, and that's when it takes up a
life of its own. I am very grateful for not having to deal with this full-
time. Not scratching while itching can be proper work, depending on the
intensity/duration of the itching spell(s).

As for what mine is, I have no clue, and as long as we stay on our current
terms, I'm somewhat content with that. Allergies and sensitivities can be
pretty hard to pin down.

PS: Another reason I don't think my itching is psychological - I just read the
article, then wrote this, and I'm not itching - yet ;)

[1] if "pain tolerance" is a thing, and itching has its own receptors and all,
...

[2] Except once in a while, in public/with friends/with people anyhow, the
itch will "win" and I'll forget that I shouldn't do my instead-of-itching-
last-measure, which is to hit/punch the itching spot rather than scratch (my
hand is already moving of its own accord, so something needs to happen). Not a
masochist in the least, but rather I've noticed that the little physical pain
takes away the edge of the itching. YMMV, not offering this as advice.
However, you do, you may want to avoid doing that in public, or at least don't
follow up any questions with a grunt like "it was that or flaying myself with
this steak knife", or you may stop being invited to dinner parties.

~~~
niyazpk
FWIW, I also have experienced a similar itch. Most of the symptoms also sound
very similar (never on the face etc). Haven't had one of those for a few
months, so I am not able to recollect more details about this though.

I too finally settled on trying to ignore the itch as much as possible. It
lasted for only like half an hour after the showers, so I was not motivated
enough to dive deep to figure out the root cause. Possible causes may include
- Chemical composition of the water you use, Soap/Shampoo etc.

It was suggested to me that the borewell water that we use may be the culprit,
but since we have multiple sources of water at home (well / borewell / public
supply) and since I did not bother going more in depth to figure this out, no
clues on this front yet. Also, I have had the same problem at least a few
times in another city as well.

~~~
niyazpk
Found something - May be related:
[http://en.wikipedia.org/wiki/Aquagenic_pruritus](http://en.wikipedia.org/wiki/Aquagenic_pruritus)

------
jrochkind1
This article is written so floridly and weirdly, it's like trying to be the
new yorker without meeting the new yorker's quality standards.

But it still kept me reading, so I guess it worked. But I feel dirty like
after reading a buzzfeed article.

"in classic hominin style" \-- I don't think that's a word. Does he mean "ad
hominem"? That still doesn't actually make sense in context. Classic what now?

"she said something that has been loitering in my mind ever since, wanting my
attention but not quite sure why or what it is doing there." Really? What?

"Poor Nick Mann, I think... To get some general sense of how unstable this man
could turn out to be, I try to discover a bit more about him." \-- how
terribly disrespectful to these people you are interviewing and who's lives
you are broadcasting to us.

~~~
InclinedPlane
Hominin is a valid word, it refers to the larger group of humans and proto-
human ancestors which are part of the homo genus.

~~~
jrochkind1
So the author meant... in the classic style of humans and their proto-human
ancestors? Uh...

~~~
jwmerrill
Yes, the author meant that searching for explanations is a basic human
instinct.

------
nateabele
> _“They can if they look. But they will not look!”_

'They will not look.'

This is the antithesis of empiricism and, IMO, typical of the anti-scientific
attitudes prevalent in the medical community. Even though medicine is often
thought of as a science, too often its practitioners simply operate on learned
dogma that seems to be based on outdated information, or emphasizes covering
for ignorance.

See: ADHD diagnoses in the 90's, 'autism spectrum' diagnoses today, or colic
diagnoses in infants — hand-wavy explanations which all amount to the same
thing: 'we have no idea, but we're way too proud to admit it'.

~~~
speeder
I have Hashimoto's Disease

I needed ten years, and countless doctors to get treatment, and still is a
crap treatment, given to me by a doctor that behaved more or less in the way
of "Lets try to humor the crazy person"

Before 1970s hypothyroidism was diagnosed mostly by symptomatic evidence, and
it was treated with natural hormones extracted from pigs.

Then there was the discovery of the TSH blood test, and the invention of
synthetic T4.

This resulted into the medics going into a strict dogma frenzy, they started
to diagnose hypothyroidism ONLY by the TSH test, and treat it only with
synthetic T4.

The first medic I went to, I was 15 years old, my mom took me to a
endocrinologist against my will, because she was bothered by the fact that
even with good diet and me being a active competition athlete I was still
overweight, I took offense then, I promptly told my mom that I hated the fact
that she was taking me to a "fat people doctor".

Upon arriving on the medic office, she weighted me, concluded I was fat (not
shit sherlock, I already knew that!), and that all my other problems was
because I was fat.

Many years went on, with the condition worsening, until a friend of my mom,
just by LOOKING at me, told my mom I had it.

My mother then took me to another endocrinologist, that made me take a TSH
test, that the result was 4.4, while the lab threshold was 4.5

But then I was used to google for things, and found out how to diagnose
hypothyroidism, also I asked around the family, and learned that my aunt had
thyroid cancer, my grandma took T4, the mother of my grandma took T4 too, and
some months later my mom found out she had hypothiroidism too and also started
to take T4, the only genetic condition with that behaviour, is Hashimoto's
Disease, that then I figured out how to diagnose.

I went to a string of doctors, that REFUSED to take the tests, many of them
told me I was crazy and that I had to seek help for my symptoms elsewhere
(symptoms that I had then: chronically fat, chronically high cholesterol,
brain fog, constant itching, enlarged neck, brittle hair, random muscle
pains... to the medics I went I needed to visit a dermatologist, a
psychiatrist, a gastroenterologist, and so on).

So, what I needed to diagnose my condition?

In that order:

Thyroid ultrasound, thyroid tissue analysis, blood test looking for the
antibodies that are created by Hashimoto's Disease.

This serves to diagnose the Hashimoto's Disease itself, not the
hypothyroidism.

Then to diagnose hypothyroidism, you either rely on the symptoms, or use TSH
test, but instead of the usual 4.5 threshold, the endocrynology association
recommends that in cases of high cholesterol and known thyroiditis to use 2.5
as threshold.

The first list of examinations I had to physically threathen a medic to order
the exams, and at every step she tried to misdiagnose me (example, after the
ultrasound showed my thyroid was damaged, she claimed I had a bacterial
disease, and made me take exams for that, THEN she claimed it was a calcium
disease, and made me take exams for that, THEN she agreed that it might be
cancer, and asked for the tissue sample, that showed that the damage was being
caused by the immune system... THEN she said it was a false positive, and only
asked for the anti-body blood test after I was VERY 'assertive' that I wanted
one).

After that, she STILL refused to treat me.

I went to several medics after her, looking for one willing to treat me, all
of them said the same thing: "your TSH is below 4.5, thus you are not even
subclinical, and so you are fine, your symptoms come from elsewhere, I suggest
you look for a psychiatrist).

The one day, my TSH went to almost zero in a hashitoxicosis episode. (and by
the way, the person that taught me that this existed, was a ophtalmologist).

I found one medic then willing to talk to me, seeing my almost zero TSH made
that medic conclude that 'something' was wrong, but NOT what I claimed it was,
after some stern arguing, she behaved like if I was crazy, but that she would
go along and give me T4.

And behold! My symptoms got better! (not much though :/ hair still brittle).

After she gave me T4, I finally got curious about the TSH lab ranges, I took
my blood test results, and read a note there saying the 4.5 threshold came
from a certain document from the endocrynologist association.

I went to read that document... and that very same document, that all doctors
without exception claimed to follow, cited the very same research articles I
cited to those doctors and was ignored, they kept telling me that "research"
for medics was irrelevant, until the association decided to make it into
standard practice, and there it was, the association document cite that
research, and suggest that although it is not strong enough yet to make it a
mandatory standard, it was sound enough to be a recommendation, and thus I
concluded that medics don't even read the rule books they claim to follow.

tl;dr; medics refused to examine me no matter how hard I pushed them to,
claimed to follow a rule book that they actually don't read.

~~~
jackwizzy
Having dated someone for 3 years with Hashimoto's and hypothyroidism, I
commiserate.

Most of her struggles were with, first, trying to convince her to get checked
out, and then getting a doctor to get her off of Synthroid and onto the
natural one from pigs. In her case, the former had devastating effects on her,
the latter was very effective.

Fortunately, she was eventually able to see a well-regarded endocrinologist in
town who actually worked with her on the treatment as opposed to brushing off
her insistence that the treatment that every other doctor she had seen had
prescribed wasn't working.

After a couple of years of battling, she finally had gotten back to
equilibrium in regards to her thyroid, and back in control of the symptoms
caused by hypothyroidism.

I only went through it secondhand, and her winding maze of medical malady
sounds like a microcosm of the torture you've had to endure just to get, as
you said, "a crap treatment".

I'm so sorry to hear about that, and hope for the best in the future.

------
cpncrunch
Itching is also a symptom of anxiety, so it could be that Morgellons patients
get into a vicious circle of anxiety causing itching, which then causes more
anxiety.

You can see an extreme example of this itching in alcohol and benzodiazepine
withdrawal - apparently it causes feelings of your skin crawling.

------
Sevrene
Anyone else feeling particularly itchy after reading this?

~~~
iopq
Yeah, but I don't scratch itches consciously at least. I do it without
thinking about it.

------
sliken
Wouldn't it help the patients if the doctor cleaned an area of their effected
skin, applied a large gauze pad, and taped it down. Let the patient go home
for a few days. If there's new strange threads under it, it's obviously coming
from the skin. If it's just threads from the environment, they should be
absent.

~~~
icelancer
They've done this with tons of patients. Not one reproducible case exists.

~~~
jcrites
So what do the patients say when the illness is mysteriously absent from that
area?

Though I guess if it was environment, like from some kind of insect, it could
genuinely continue in other areas while stopping there.

Seems like it should be easy to get this stuff on video:

> “You feel the sensation of something that’s trying to come out of your
> skin.” He is pacing back and forth now. He is becoming breathless. “You feel
> that. And when you try to start picking, sometimes it’s a little fiber,
> sometimes it’s a little hard lump, sometimes little black specks or pearl-
> like objects that are round and maybe half a millimeter across. When it
> comes out, you feel instant relief.

If I was a patient suffering from that, I'd absolutely capture it on video; or
I'd ask my doctor to admit me to a hospital briefly, or plan to show up when
it's happening. If it's real, it should be trivial to get hard evidence and
documentation showing that it's happening.

~~~
Someone
Come on, be creative. One of these things crawls out, finds the patch (or
smells it from below the skin), crawls back, puts on a notice/chemical marker
"this is not the way out", and none follow. Of course you won't find any when
you take a look after a day or two. It isn't that hard to procure a new
epicycles for every argument against your theory.

And yes, if _this_ is real, it should be easy to get hard evidence, but also:

\- sufferers will see evidence where others don't see it. That (IMO) is the
whole thing with this disorder.

\- if you look hard enough, you will find something with every sufferer. That
MD may actually have suffered a mite infection, somebody else will have lived
near a chemical plant, have been to some corner of the earth, will have some
very uncommon mix of genes, etc. that's what I read here, too. Every person
mentioned has his own variation of symptoms and his own snake oil way to
decrease the symptoms. I hope the organizer of these conventions isn't in it
for the money, but I fear otherwise.

------
ryanmcbride
The Stuff You Should Know podcast did an episode about this with some pretty
great info. Delusional parasitosis is some crazy stuff.
[http://www.stuffyoushouldknow.com/podcasts/how-morgellons-
di...](http://www.stuffyoushouldknow.com/podcasts/how-morgellons-disease-
works/)

------
chias
_" Finally, Wymore found a laboratory that was prepared to take the work.
Their initial analyses are now in, but the conclusions unannounced. More than
anything else, it is this that I am hoping to hear about over the coming
days."_

Surely nine months after this article was published, these results have come
in?

~~~
cthalupa
The results are listed later in the article.

All recognizable fibers, except for one that they were pretty sure was a
fungal spore, but weren't 100% convinced

------
Blackthorn
This one hits pretty close to home for me, because my dad had the "syndrome".
He also got it as he was going through withdrawal from a cocaine addiction, so
when the CDC report came out (it being a psychiatric condition) it made a lot
of sense to me.

I don't really have anything interesting to add to the discussion, just that
it's difficult to see a relative suffer like that.

~~~
hgezim
I hope you're implying that he's cured.

~~~
Blackthorn
He hasn't scratched his arms until they developed sores in several years, so
cured enough to function I suppose. He's still damaged mentally, but it's
taken a different form.

------
smrtinsert
I felt like the rat mite possibility was left open.

~~~
_greim_
I interpreted it as rat mites being more of a catalyst for the condition,
rather than them being the full explanation for the condition.

------
cLeEOGPw
There are countless ways how brain function can go wrong. Feeling things that
don't exist are one of them. But even for the smartest people it can be
extremely hard to convince himself that what he is feeling is not real.

Another problem with phantom feelings are that they can overlap with actual
feelings. That means the brain feels itch on hand, for example, and scratching
of that part triggers a relief response. This not only temporarily "fixes" the
itch, but also strengthens the belief that the itch is real. After countless
of these confirmations it can become near impossible to convince yourself that
it is not real.

~~~
jrockway
I kind of skimmed the end of the article, but what happened with the fibers
that were analyzed in the lab and wouldn't melt? The one that went _through_
glass also sounded interesting.

~~~
anigbrowl
No answer. The payload of the article turned out to be the journalist's
rumination on his existential anxieties, followed by a few loose ends tied
into a makeshift bow and a shoutout for his forthcoming book. Most
disappointing.

I don't believe in Morgellon's syndrome (or rather, I don't believe most of
the explanations that are offered for it), but I feel a lot of sympathy
towards people who are struggling with it, as I have an occasional recurring
OCD itch that is annoying both as a physical itch and a psychosomatic one. I
manage to stop scratching, the skin gradually heals, everything is fine, and
then some months or years later some casual micro-abrasion sets it off again,
the same way an exposed piece of velcro seems to actively pick up lint.

------
guard-of-terra
There is a problem of Psych Ward Paradox.

How would a normal, mentally healthy, person react to suddently being placed
into psych ward? Like a nut case they will. That's the healthy reaction.

Therefore, on putting a person into psych ward (or otherwise assuming they are
mentally ill), we can't deduct anything useful from their reaction, which is
expected.

------
dansingerman
This bothered me: "Morgellons seems to represent a mystery even deeper than
that of homeopathy."

There is no mystery to homeopathy; it's the placebo effect.

------
webnrrd2k
I just skimmed through an article (from HN, I think, but i can't seem to find
it) about using DNA and PCR to find animals in streams that are otherwise very
hard to find.

This seems like a perfect tool for diagnosing some of these sufferers. If
there is some sort of tick DNA that shows up, say, in the water after a
thorough scrubbing in a bath, then there's a good chance that a tick
infestation is the actual cause.

~~~
bglazer
The article you're referencing is detection of the notoriously secretive Idaho
giant salamander [1]. Your idea is particularly interesting because it has
already been used to detect and study the diversity of Demodex face mites in
humans [2].

[1]
[http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjourna...](http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0022746)

[2]
[http://www.plosone.org/article/info:doi/10.1371/journal.pone...](http://www.plosone.org/article/info:doi/10.1371/journal.pone.0106265)

A somewhat disturbing, but perhaps not surprising, fact is that 100% of people
studied in the Demodex article had detectable mite populations on their face.

------
shoover
_Smith tells me that a Morgellons patient who finds unusual fibers in their
skin will typically bring a sample to show their doctor. But when they do
this, they’re unknowingly falling into a terrible trap. It is a behavior that
is known among medical professionals as ‘the matchbox sign’ and it is used as
evidence against them, to prove that they are mentally ill._

The article suggests significant interplay between physiological and
psychological factors. Wouldn't a dermatologist understand such interplay and,
instead of leaping straight to a mental illness diagnosis, work with the
patient along those lines? "This matchbox contains cotton from your
environment. Something is making you itch and you're finding this on your
skin. Let's find the cause of the itch before it drives you crazy. Here's how
to look for bed bugs and dust mites. We'll test your blood for XYZ, maybe
biopsy this lesion."

------
lotsofmangos
I wonder how many of these people are just sensing the stuff that lives on us
anyway.

Everyone is a world for millions of mites. Everyone would be scratching all
the time if they always felt the creatures that live on them normally.

------
TimJRobinson
I still dont understand why he couldn't find a lab to test his skin. Surely
there are some labs that care about money more than if it's real or not and
happily scan his skin to find these things?

~~~
dsl
Think about how a medical lab works. A doctor orders a test, they run that
test as designed by the manufacturer, print out the results, fax them back to
the doctor, and the doctor interprets them.

When laymen contact a lab with a special request, they generally are asking
the lab to take on all the roles from test selection to interpretation. In our
medical example that would mean the lab employing a qualified doctor, instead
of just lab technicians and assuming the liability of the same.

------
cglace
My brother had a condition where he would develop a rash if his skin were
touched by anything. After a shower his entire body would be covered in raised
welts. Aftsr seeing multiple doctors and dermatologists he found someone that
specialized in that condition. Strangely part of the treatment was an
antidepressant or anti anxiety medication. So I wouldn't be surprised if a
large part of their condition is neurological.

------
toyg
Modern medicine and biology still haven't explained all about our world.

My father suffers by an unknown and unnamed skin condition which will surface
periodically, causing large red and itchy swollen patches all over his body.
Antihistaminic pills are effective at relieving symptoms, but of course you
cannot live on the stuff for months or years. He's tried everything and was
examined and followed by medical researchers for a while, but they simply
couldn't find a root cause and just gave up.

He started experiencing this about 30 years ago, when he was already 35, at
least once a year but often three or four times per year. Each resurgence can
last weeks or months, and will eventually subside on its own. Nobody else in
the family seems to be affected. The only theory we have is that someone must
have started releasing some sort of new chemical in the air in the late '80s
and my father's skin must be particularly sensitive to it, but it's just a
wild guess.

~~~
SEMW
> Antihistaminic pills are effective at relieving symptoms, but of course you
> cannot live on the stuff for months or years

Why not?

During pollen season, I take cetirizine once a day for hayfever. Outside
pollen season, I take it once every two days, since I get mild hayfever-like
symptoms (especially itchyness, though not nearly as bad as in pollen season)
all year round.

I saw my GP a few years ago. He said, sure, I could get tests to work out what
exactly I was allergic to, but given it likely wouldn't be anything I could
avoid, and that generic cetirizine is less than 8p a pill over-the-counter and
completely solves the problem, why not just go on taking it all year round? I
couldn't disagree.

~~~
toyg
He has to take them in combination with cortisone and in quantities that
severely affect his mood, blood pressure and energy levels. Living on the
stuff would likely deteriorate a number of other elements.

------
simonebrunozzi
Itching issues can be terrible to deal with.

Since I was a teenager (which means, for the last 20 years), I've had issues
with itchiness on arms and legs after having showers, especially with hot
water, and especially during hot days.

In some periods, the issues becomes quite irritating. Some other times, it
rarely bugs me at all.

I've never found a solution. The best thing to do is to put cold water on arms
and legs for a few seconds. This makes the pores close, and somehow reduces
the problem.

It's never been a serious condition, but sometimes I get itchiness for 10-20
minutes, and sometimes - especially if I start scratching - it can be almost
unbearable for several minutes.

------
lkrubner
The article raises an interesting question about delusions and the limits of
medical knowledge. But what does it really mean to be crazy? And who is to
hold doctors responsible when they dismiss patients who might have a real
illness?

First, let's acknowledge that many people complaining of Morgellons might
actually be crazy: they might be suffering some kind of OCD.

With that out of the way, we should ask ourselves, what if some of the people
suffering are suffering from some real, physical illness? That is, what if the
illness is real and simply can't be diagnosed? For the sake of argument, let's
say that Morgellons is actually a rare manifestation of the varicella zoster
virus (in the USA, this is referred to as "chicken pox" though it has nothing
to do with chickens). VZV can cause shingles, which leads to agonizing nerve
pain, so, as a thought experiment, lets imagine that Morgellons represents the
rare case when VZV manifests as itching instead of pain.

Let us further suppose that in 10 years research proves the that VZV explains
Morgellons.

My concern, in this hypothetical scenario, is the lack of accountability that
the doctors face (or rather, don't face). They will never have to apologize to
the people who they labeled as crazy. We invest doctors with great social
powers, and in some situations doctors can act as agents of the state (for
instance, in the USA, regarding a patients mental state, if a doctor says you
represent an immediate threat to yourself or others, they can have you locked
up for up to 72 hours, pending a psychiatric examination).

The laziest diagnosis is "You are crazy." A doctor who can not find an answer
for your problem can simply dismiss you as delusional. And yet, a diagnosis of
delusions should only be made after a psychiatric examination, and then, if
positive, treatment should begin for the delusions. We need to put in place
policies that keep doctors from dismissing patients with a diagnosis of
"delusions". Right now, it is too easy for doctors to dismiss patients with
that diagnosis. If the patient has not been through a psychiatric examination,
then a diagnosis of "delusions" or "obsessive compulsive disorder" should be
forbidden.

------
gima
I have unfortunately also experienced first-hand the doctor's mechanical way
of working.

In my opinion doctors who cannot program shouldn't be allowed to be doctors.
If you are presented with a problem, you logically prod at it until you can
understand it. But then again, I'm sure it's more cost-effective to treat 80%
of the patients successfully by following a check-list, than to get personal
with the patient to identify the real problem.

------
emmanueloga_
When there are strange disease cases like this I wonder whether computers
could find commonalities between sufferers that the naked eye just couldn't
see.

If you scrutinized, say, all of the social netw ork, public records, and of
course.... the most comprehensive repository: surveillance data :), a couple
of interesting commonalities or patterns could surface. (BTW, I don't condone
surveillance but the data is already there right...)

------
abandonliberty
The Internet has enabled us to connect and collaborate more than ever before.

In the case of mental illness, this is very unfortunate. It is very easy to
find other suffers and mutually reinforce everyone's condition.

An extensively studied example of this online disease promotion is pro-
anorexia: [http://en.wikipedia.org/wiki/Pro-
ana](http://en.wikipedia.org/wiki/Pro-ana)

~~~
bglazer
Do doctors have any incentive to connect with these communities? Is it ethical
or reasonable to monitor and attempt to intervene in cases of Morgellons or
anorexia that present themselves?

------
throwawaykf05
Another article related to pathological itching (probably has been discussed
here previously): [http://www.newyorker.com/magazine/2008/06/30/the-
itch](http://www.newyorker.com/magazine/2008/06/30/the-itch)

The patient in this one ended up in an even more alarming situation.

------
abandonliberty
You wouldn't believe what itching made this woman do! [0]

Itching is an extremely powerful sensation.

[0] [http://www.newyorker.com/magazine/2008/06/30/the-
itch](http://www.newyorker.com/magazine/2008/06/30/the-itch)

tl;dr & spoiler:

A woman slowly scratches through her skull and reaches her brain.

------
pombrand
Keep in mind that it can be flea bites, as they only start to itch after
several hours, you'd usually feel it when you wake up in the morning (and
suspect it was bed bugs). A great way to test for this is to get a flea bite
trap from amazon.

Def something to look into this if you have animals.

------
beaner
I don't understand how you can literally have a picture of colored fibers
produced in the skin by this phenomenon, and also blame it on a mental issue.

Am I missing something or is the author totally writing off the very empirical
evidence he talks about?

~~~
rspeer
How are you so sure those brightly-colored fibers were produced _in_ someone's
skin, when the prior probability strongly favors the explanation that they
were rubbed off _on_ someone's skin?

For a similar example, think about navel lint. Where does it come from, and
why is it approximately the color of the shirts you've been wearing recently?

------
abecedarius
_The authors recommend prescribing a benign anti-parasitic ointment to build
trust, then topping it up with an anti-psychotic._

This could be read more charitably, but this sure sounds like deceiving the
patient. Is that what they mean?

~~~
bronson
If the patient is flat unwilling to believe the truth then maybe it's not such
a bad idea?

There isn't much of a line between deception and placebo.

~~~
abecedarius
The one patient in this story who got a prompt and serious investigation was
found to not be delusional. Was this because anything about his story was more
credible? No, it was because he was his own doctor, and strangely not
satisfied with deceiving himself. If any other person with the magic doctor
bit has had to deal with the problem personally, we aren't told.

This story depicts desperate people who have probably-wrong ideas about their
condition, and a medical profession with probably-oversimplified overconfident
ideas about it which it has no interest in improving -- they're the opposite
of desperate, and so much the less excusable. Put yourself in the shoes of
this guy, with his doctor bit erased: if he tries to get help, and explains
his whole problem, he _knows_ he'll get classed as delusional, his doctors
won't even try to figure the thing out, they'll say "You're very anxious" and
get insistent about anti-anxiety drugs, NSAIDs, and seeing a psychiatrist. (If
he's lucky like someone I know, after a few years of persistence and ignoring
the drug prescriptions he'll find someone who can diagnose an underlying
cause, which in that case -- not about itching -- was not mites but gut flora,
manageable with a diet change.) He should worry about deliberately mislabeled
drugs too? I _hope_ my question was over-cynical.

------
pi-err
It's easy to laugh off those freaks, I did it too before I became one.

TL,DR: OCD behaviors are boosted by physiological stress, we can redesign our
world for less stress, and there is in fact a big risk that medicine doesn't
help you in non-emergencies situation.

I relate the Morgellons story to candida as you can see people on curezone
talking about it
([https://en.wikipedia.org/wiki/Candida_albicans](https://en.wikipedia.org/wiki/Candida_albicans)).
People on this board sound as desillusional as in the story, looking at their
poops for hours and trying all kind of enemas and diets in giant waves of
pseudoscience. It's also the same notion that something wrong is hidden in
you, an evil invisible root cause.

\---

Long story short, after years of various strange affections on an otherwise
healthy body, I found information online on candida. Symptoms matched to a
point and so I spent some time on blogs and boards and eventually landed on
curezone. I ended up looking at my poop like so many others there. Doubt
really is infectious, everything becomes blurry and so I started watching for
the tell-tell sign of candida, just in case. Still surprised that I ended up
doing this.

After a few weeks (months?) I realized I was getting OCD with that and needed
to move on to a better obsession. Doctors had also told me that it didn't make
any sense and everything on the net was just BS. My problems were somatic and
so I found a better obsession.

The funny thing is that years later, after symptoms got worse, a stool test
did diagnose me with candida along with other parasites that I had gotten as a
kid in Africa. I got cured and never felt better since then. It did change my
life. I still feel that I was a loony when I try to auto-diagnose - it was
just a coincidence that candida was involved, my method was all wrong. Candida
is not visible to the naked eye, and there's next to no chance to auto-
diagnose and auto-cure from it without coaching.

I take from this that our medicine system is designed around emergencies and
clear symptoms and does not deal with many new "blurry" pathologies born out
from stressful lifestyles. Challenges:

\- those guys (and I) need care designed around empathy, listening and being
coached into healthier lifestyles. There's next to no offer for that.
Psychiatrists and mental specialists are siloed into talking and/or meds.
There are real physiological and practical aspects that need to be added and
followed up for it to be effective.

\- I was lucky to be able to afford a holistic nutritionist working with
leading labs to perform expensive stool tests that finally helped me.
Including treatment, it cost me above £1500, 0% supported by healthcare (it
was in the UK, would have been the same in France or anywhere else, I bet).
For most, most doctors are still siloed in their discipline and provide
neither empathy nor a convincing bridge between info found online and their
own expertise.

\- our lifestyles are inducing high level of physiological stress that our
human organisms can't deal with. Work, food, cities, that goes way beyond
medicine: redesigning all those things to limit stress levels is _the_
opportunity for our generation.

~~~
mattgreenrocks
The comments on stress are spot-on.

Persistent, low levels of stress are extremely unhealthy. Looking back at my
life, I ended up maladapting to these in _every_ scenario, hurting myself and
wasting years of my life in the process. If something isn't right, it needs to
change, and you can't delay. The failure to enact change creates a feedback
loop that makes you more passive, which sucks you of hope, which makes you
less likely to create change.

Again: to anyone reading this, do not just put up with long-term, 'smaller'
stresses. At least try to work on them. We do not do well with stress +
uncertainty combined.

------
connie_lingus
i cant help but be reminded of the support-group addicts from Fight Club while
reading the article.

------
michaelochurch
_They say that what people like him are really suffering from is a form of
psychosis called delusions of parasitosis, or DOP. He is, in other words,
crazy._

This is one of the problems in our society, even in psychiatry. (The OP deals
with the binary nature we apply to such things, but could have gone deeper.)
This idea that there are "crazy" people who have all kinds of mental illness,
in full cinematic severity, all of the time, and "sane" people who have none
isn't accurate. About 30 to 50% of the population will have diagnosable mental
illness at some point in life. (We use our brains for so many things; that
we'd have problems with them, over an 80-year life, shouldn't surprise
anyone.) Likewise, most people with MH diagnoses are normal most of the time.
It doesn't define one as a person, any more than heart disease or fibromyalgia
does. This parasitosis is shocking people because it's occurring in relatively
normal individuals, but that's actually the truth for most of these diseases.
Most people with panic attacks or depression don't seem "insane", because
(although they have mental illnesses) they're not.

We need to stop thinking of these as alien, stigmatized conditions and start
viewing them as "boring" chronic health problems that, while they are painful
and deserve compassion and treatment, don't merit treating someone as if his
life is already forfeit (like a cancer patient in the 1940s, an AIDS patient
in the 1990s, or a schizophrenic in the 2010s). Panic disorder, for one
example, is more like a milder version of epilepsy than a typical "mental
illness". It doesn't impair judgment or cause delusions; it's just very
upsetting and difficult.

Most people with mental illness are mostly sane most of the time. In our
society, we tend to focus on the highly visible and extreme cases, not on the
"boring" and often treatable ones that are more common. Major depression
doesn't mean that a person is always miserable; it means that a person is
unusually prone to attacks of negative mood, often unprovoked. You can have
MDD and still be happy most (say, 80%) of the time. In fact, quite a large
number of people with anxiety and mood disorders are more functional than the
general population when unaffected by the disease (which can be anywhere from
30 to 90% of the time; trust me that if you have two weeks of mania and two
weeks of major depression per year, you're still bipolar and need help).

 _“In my experience, Morgellons patients are doing the best they can to make
sense of symptoms that are real. These people have been maltreated by the
medical establishment. And you’re very welcome to quote me on that. They’re
suffering from a chronic itch disorder that’s undiagnosed.”_

This seems likely. Even if the disease is "psychological", it's still real
pain that they're suffering. I understand that it may require more attention
from psychiatrists than dermatologists, but that doesn't invalidate the
disease and the importance of treating it.

It can be called enigmatic because it seems (from what I've read) to be
psychiatric and is popping up in "normal" people, but the fact is that _most_
mental illnesses (panic, anxiety, depression, OCD) pop up in otherwise normal
people.

 _But, she adds, that is not to say there aren’t some patients whose major
problem is psychiatric. Others still might suffer delusions in addition to
their undiagnosed neuropathic illness._

I'm not altogether convinced that there's a difference between neurological
and psychiatric illnesses. I've often thought that panic disorder is a non-
lethal (albeit distressing and sometimes just weird) cousin of epilepsy
(generally classified as neurological) and that the "Asperger's syndrome"
(neurological) often observed in highly intelligent young people is actually a
mild, subclinical cyclothymia (bipolar) disorder. (People with true
neurological social disabilities, such as with autism or head injuries, don't
grow out of them in their mid-20s; but people with mild bipolar disorders have
a social experience deficit that would match that pattern. Being 20% behind at
age 15 is catastrophic; at 30, it's quirky; at 40, it's a non issue.)

Anyway, fuck the people who say that a disease being "psychiatric" means that
it shouldn't be treated. It reminds me of the claims adjuster in _Memento_
(ignoring issues of unreliable narration and the question of what really
happened) who wanted to weasel out of covering treatment for amnesia because
it was "psychological".

------
gloomypenguin
I shouldn't have read that... lol.

------
Smaug123
If this really is entirely psychosomatic, then sharing this article is
probably one of the worse things you can do with the information.

~~~
ryanmcbride
I feel like if people read an article about how it's all in their head, it
might get ahead of the fake info about it being real. Once people think it's
real, it's hard to convince them it's not.

~~~
ars
I can't be the only one who started itching while reading it.

And it's an unfortunate fact that scratching causes itching, and knowing that,
I didn't not scratch the psychosomatic itches, but if I had not I could have
given myself real itches.

~~~
tux3
This article got me scared over the possibility that I might go nut and get
those itches. It's disturbing how easily those things can get to you. Even
with the blatant conspiracy theories and references to aliens in the middle.
I'm grateful that my brain is not an asshole and listens to reason sometimes,
wouldn't want to end up with phantom itches.

My sympathy goes to those people.

------
wallaceowen20
This disease is "documented and described" in the online (then made into a
book then made into a movie) "John dies at the end", as an interdimensional
goo:
[http://en.wikipedia.org/wiki/John_Dies_at_the_End](http://en.wikipedia.org/wiki/John_Dies_at_the_End)

