The Itch Nobody Can Scratch

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.

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.

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.

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...

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.

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.

'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'.

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

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

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

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.

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.

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

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.

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."

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.

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.

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.

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.

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.

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...)

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

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

Itching is an extremely powerful sensation.

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

tl;dr & spoiler:

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

Def something to look into this if you have animals.

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

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

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). 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.

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".