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.
Sorry to hear about your bug hunt ordeal. I have had a similar bed-bug problem once; albeit on a smaller scale. Catching them turned out to be simple in my case. Hopefully this will be useful to someone:
I used a mosquito net which tied on top of the bed and wrapped around the edges of the mattress. I left the net always wrapped around the mattress even when I was not sleeping-in. I found that the bed-bugs would eventually accumulate at the top of the net. Everyday, a couple of them would be found there and I just had to eliminate those.
After about a month, they had all been trapped and exterminated, and the infestation had died.
Nice tip. Can you elaborate on how you setup the net though? Was it hanging from the ceiling when you say "tied on the top of the bed", forming a tent like structure and the bugs would crawl to the pinnacle? What time of day would you find them and kill them?
I don't accurately remember the time of day that I would find them (it was about a decade back). My vague memory is that it was in the morning, after waking up.
Yes, I found the primary torture of having bedbugs is psychological. The slightest movement on your skin sets you off on a panicked bug hunt when it's really just an errant hair, or maybe a loose thread. Unfortunately, since we are hairy mammals and as the hair on our head tends to fall off all the time, and because hair tends to find its way inside our clothes and stick to our skin, there are hundreds of these sensations every day. The other problem is, hair is fine and we tend not to see it and assume it was just a bug that got away. This quickly makes you paranoid, and soon interferes with your ability to sleep soundly, which soon makes you irritated and eventually starts affecting your work. One of the first things to do when discovering an infestation is to realize this psychological problem and actively deal with it.
As for dealing with the bedbugs themselves, search for "the Missouri Method". It essentially consists of making it impossible for the bugs to reach you as you sleep, which 1) gives you instantaneous relief from bites, 2) avoids having to hunt all their hiding places, and 3) disrupts their lifecycle, which over a period of few weeks, kills them. Keeping them away typically involves the use of plastic or other smooth surfaces where their legs can't get a grip.
Note that the online tutorials go somewhat overboard, in my experience: you don't need airtight seals everywhere. I managed to treat the problem successfully simply by covering my mattresses and bed with a plastic sheet ($10 roll at Home Depot) and running packing tape horizontally along the walls (to keep them from getting onto the ceilings and dropping on to you; yes, they do that). A bed-sheet on top of the plastic sheeting provides little comfort, and the crackling of the plastic is really annoying, but the peace of mind knowing that bugs can't get to you will give you the best sleep you've had in weeks.
“It turns out my psyche has been irrevocably warped by this experience. I'd call it PTSD, but that insults everyone who has experienced worse shit than mere bedbugs. Instead, I'll draw on my years of psychological training (seriously) to bullshit a new name: PBI, or post-bedbug insanity.”
This is an excellent non-crinkly mattress encasement. I use it all the time, with pillow encasements too. Using these encasements and washing all of my bedding with hot water every week cured my mite allergy symptoms.
My girlfriend dealt with bed bugs once with a "steamer" she bought off craigslist. It's kind of like an iron, basically it blows steam. She steamed the whole room, carpet, bed, sheets, pillows. Apparently the temperature kills them. It worked... they disappeared. No chemicals.
I found a bug on me one morning upon awakening and became convinced I had bed bugs. After some googling, I built a cheap bed bug detector out of sugar solution and yeast, which produced a steady stream of CO2 for several days. Bed bugs are attracted to the CO2 we emit, and the detector lures them in, and then they drop into some soapy water for collection. After a few nights of nothing in the trap, I went back to the bug I had found that morning. I had wrapped it with a tissue and thrown it in a jar. On careful examination, it was not the right shape for a bedbug.
Several years ago I woke up with a big welt on my back, about the size of a quarter and quite tall. It didn't hurt, but it was a strange shape: hard, white, conical, with a red dot in the middle.
The next few days I woke up with itchy bumps on my skin. I thought they were mosquito bites. I became obsessive about keeping the windows closed.
Through the next few months it got worse. Huge swaths of them would appear across my arms and legs. But when I went to show them to someone, they would be gone! I discovered that they could come and go within a matter of hours.
At its worst, it would look like I was mauled by a tiger. The mosquito bites would take winding paths down my legs, following veins and arteries in spidering patterns almost like red claw marks.
I went to a doctor, and they sent me to an allergy specialist. They gave me an allergy panel, but only the pure histamine gave the bumpy itchy response. The diagnosis: chronic idiopathic urticaria. No cure. Just hope it stops happening eventually. Give it two years.
Well, it took two years to go away, but it's gone now, I think. It shows up again sometimes though, randomly, especially when I'm stressed. The worst part is that it makes it harder to notice when I have other reasons to be itchy, which I've had many: pinworms, lice, jock itch.
Fortunately no bed bugs though! That was one of our fears during this whole thing.
That's not a diagnosis; that's a lack of diagnosis. "Chronic urticaria" is the symptom you reported; "idiopathic" means "we have no idea what is causing this."
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.
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.
For my infestation, no way was I going to toss an otherwise nice expensive mattress. Took only about half an hour with a shop vac to inspect every inch of the mattress and dispose of all bugs. Or at least I wasn't bitten again.
From first hand experience I can tell you this might not work because sometimes (as it was in my case) the bedbugs hide far away from the bed, then do their daily pilgrimage at night onto your bed.
There's another way, that doesn't require heat or cold, which worked for me when we ended up with bed-bugs.
Wrap everything that could be infected in polyethylene sheeting - and include a few sachets of ascorbic acid in there - you can get it online or from a pharmacy typically. Make it air-tight - like, really, really air-tight. Cling-film around the plastic sheeting can make an extra barrier.
Leave it for a few months. When you unwrap, you'll end up with soft pitter-patter of little asphyxiated carcasses, and your infestation is over.
I had a small bedbug problem once. I created a perimeter around my room and bed with diatomaceous earth for a few weeks. Since my bed had legs, it was easy, I could just put the legs in bowls with the stuff. I never saw them again.
When we come back from a high risk country/hotel, we use the same treatment around the bed legs as a preventive measure. We also put the stuff in the luggage for a few days before opening them.
The good thing about this stuff is, it's inert, also it's super cheap. It kills them mechanically and it's safe for us humans, unless you snort the whole bottle. That means you can use the powder directly on your mattress if they infested the bed directly.
However, this also mean they won't die immediately, so they can bite you once before dying. Also, you don't find the corpses easily.
They don't "believe" they are ill. They actually are ill, just not from a parasite infection. The itch is real and causes distress.
There is an ethical problem in offering lab tests to people when you know that most of them do not have parasite infestations. And it doesn't matter what the results are - they will only serve to strengthen the delusion. A negative result will just be interpreted as "science doesn't know how to test these fibres".
We see this very clearly in people with "health anxiety". Imagine a fit and healthy young man who walks into an ER department and says that he's having a heart attack. Traditionally some doctors would have steapped that man to a bunch of machines and talked anout the results, and then said "see? You're not having a heart attack." This attempt at reassurance is distorted hy the mental health problem into "they wouldn't use all these machines and order these blood tests if there was nothing wrong".
The modern method would be to let the person sit with their thoughts for a few moments - "yes, you might be having a heart attack"; to examine the evidence for that and how strongly they feel it ("I am out of breath and my chest feels a bit tight and I'm a bit dizzy"); then to examine other stuff ("I don't have any pain, now that I have been carefully breathing I don't feel as bad. I know that I have an anxiety disorder that can cause me to panic. Maybe this is not a heart attack but a panic attack.")
This sounds trivial but it is strongly effective for a variety of mental health problems.
The problem here being that people who become ill from a real parasite infection are the most likely people to acquire a delusion that exaggerates and extends their symptomatic distress; The feeling of 'formication' is both caused by insects crawling on the skin, and caused psychogenically by the self-reinforcing expectation that insects are crawling on the skin, an expectation that is entirely rational in anyone who has been subject to an infestation. Detecting parasite infection is non-trivial and error-prone.
A family member has enduring beliefs and anxiety about head lice, which drove them to psychosis for a period of six months, causing all sorts of little false beliefs and reactive rituals that persist several years later as a sort of PTSD. The fact that they quite likely had lice at one point that triggered this whole thing, is no longer provable, but if examined without this case history, we would dismiss it as some kind of waste of physician time. It is very hard to convincingly reassure a patient that they 'no longer' have an infestation that they once had, but are still feeling the symptoms of.
The modern method seems a bit irresponsible to me.
It puts the burden on the patient to prove his claim leaving the doctor only well prepared for the most standard of cases.
I just makes me wonder how many people died of real heart attacks because the doctor felt the need to 'leave them with their thoughts' in a time where every second could make the difference between life and death.
I don't doubt there are people that confuse heart attacks with panic attacks and people who are perfectly fine but feign illness in a desperate attempt to seek attention.
There are all kinds of people however that still doesn't justify ignoring people.
You should be doing anything and everything possible to determine if he is really having a heart attack as he claims and once you determine there is no danger with 99.9% certainty and all the tools at your disposal you can ignore him.
This psychoanalysis and profiling bullshit is the last thing you should have to deal with when you honestly believe your life is in danger.
It's not ignoring them, it's providing a more useful and very cheap diagnostic test to handle the likely case where the patient is suffering from something which can respond better to time and patience than poking and prodding.
If the patient was old, morbidly obese, had a history of heart attacks, was scratching at an tingly left arm, or something like this, I'm sure the doc would go ahead with the other tests.
If the patient is young (as stated in the hypothetical) and otherwise in good shape, giving them a second to baseline is completely reasonable and better for them.
It's really easy to tell the differnece between someone having a heart attack and someone having a panic attack.
> There are all kinds of people however that still doesn't justify ignoring people.
You are not ignoring them. You are avoiding unnecessary and potentially harmful diagnostics and treatments, and providing effective appropriate treatment. You are improving the quality of care.
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.
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.
> 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.
It's an account of the author who writes honestly about his thought process, and in the end finds out that his prejudice was wrong on one count, and may have been wrong in others.
The whole article in entirety is more helpful than anything I've read about this kind of condition. I'm not sure, and I think the author isn't sure, whether it should be called a mental illness at all. I think that was the point of the article.
So in cases like this, isn't it good to write plainly of one's past prejudices?
And it's a fine point but I would rather people speak plainly when giving accounts of how their prejudices were wrong. It is helpful for us to make fun of our past failings.
Right. Delusional parasitosis is very much a real disease. The only thing that's not real are the parasites, but that's trivial: There is a real disease, it does need to be treated, and the fact the treatment isn't a delousing or similar is not what we need to focus on.
I remember when I had the same realization about chronic fatigue and fibromyalgia. Whether or not they are "real" doesn't matter at all - the people experiencing them are obviously sick in one way or another.
> and the fact the treatment isn't a delousing or similar is not what we need to focus on
Except that's exactly what the patients focus on. When offered an antipsychotic, most refuse it, and become incensed that the doctor thinks they are (to use the afflicted's terms) crazy.
I am saying that using words like "crazy" makes people refuse to consider using the right doctor and right treatment. Those patients start using words like "real" - "it's not all in my head, it's a real illness".
I'm not sure I understand your post in the context of my post.
Oh, if you mean specifically that the word 'crazy' makes people get stubborn and make bad decisions, sure I guess that's true. I don't have a whole lot of sympathy for people being stubborn though, even though I'm quite sympathetic to the problems and suffering they experience.
"This is an excerpt from The Unpersuadables: Adventures With The Enemies of Science by Will Storr. Reprinted by permission of Overlook Press. All rights reserved."
The last line of the text. The whole post is almost like a troll disguised as reportage. Don't lose sleep over it. If the text started with this line, I wouldn't have even bothered to read it much less comment on it.
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.
How do you offer a patient a treatment for something they don't believe they have?
The patient believes they have a parasite, or nanotechnology.
Medicine suggests they may have a psychological disorder.
Asking the patient to see a psychologist is not going to work because the patient isn't going to go and is going to feel (perhaps correctly?) they are being fobbed off.
I think you have to either get the patient before they get sucked into the delusional illness belief, or concentrate on the patients who are open to the treatment option. I had CFS myself, and I was very open to the idea that it was caused by stress. I've also have IBS. Doctors didn't have any useful suggestions, but I was able to eventually figure it out by myself. I think one of the problems is that doctors don't really have the time necessary to deal with conditions like these. Certainly for conditions like CFS and IBS there are a lot of patients like me who are interested in finding the actual cause of their illness. I've never talked to any Morgellon's patients, so I'm not sure what the ratio of open-minded to nutty patients is for that condition.
The last time I saw this story come up (if I recall correctly it was on 60 minutes a few years back), it was mentioned that antipsychotics worked to alleviating the symptoms; the real problem is that most of the patients experiencing these symptoms didn't _want_ to be told that it was mental, and would refuse to take antipsychotics as a potential solution.
How else could the doctors informing the patients of the real problem, and pointing them at a real solution to the problem?
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.
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":
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.
That's funny, now that you mention it I realize that if I had read this article a year ago I would have started itching and spent hours hallucinating an infestation in my skin - as it is I read it, was intrigued, then moved on. My combination of SSRIs and intense self-care is working. There is hope :)
Most of the time "pop Skepticism" devolves into a lot of "I'm smarter than you." At its worst it sometimes dabbles in the same logical fallacies that are routinely present in the "woo" it attempts to debunk. I call it "fundamentalist positivism," and like most fundie ideologies has its own brand of holier-than-thou.
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.
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...
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.
I was diagnosed with Chronic Idiopathic Urticaria a little while back. It's a histamine imbalance. It sounds similar to the article in that over a couple of days I spontaneously broke out in incredibly itchy hives. The itching was incessant and lasted for months. Even with a diagnosis I found myself getting frustrated and despondent with living with it day to day. Thankfully medicine has answers for me; via constant doctors appointments and $1,000-per-session shots that mask the symptoms.
A couple years ago, I realized that I was constantly itchy and rash-y. My family has a history of allergies and mild skin conditions (my Dad calls it the "crud"). After some time, I figured out that it must be dermatographism—an allergy to skin pressure, essentially. Since then I've taken a Zyrtec a day and alleviates the itchiness from the chronically-unable-to-concentrate-craze-inducing level to the acute and mildly annoying. I should probably explore a real diagnosis and treatment at some point, but I very much sympathize with anyone plagued by ceaseless itching. It's pretty horrible.
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.
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.
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.
While I largely agree with you in the context of this article, I don't really like a similar trend to this sentiment I've been seeing in HN comments recently. There seems to be a devoted core of people who hate long-form journalism and storytelling writing styles. Every time a New Yorker or Aeon article shows up here there will be multiple comments to the effect of "What's all this bullshit about random people? Get to the point!"
I really don't get it. Do these people want dry newswire articles to be the only form of nonfiction writing that exists?
Also, "ad hominem" is both misspelled and used grammatically incorrectly in this article, but it does apply in that case. The author is attempting to say that mainstream medical researchers attack the character of Morgellons "patients" rather than their arguments.
Or, assuming he did mean 'ad hominem', was he instead saying that the Morgellon's conference attendees were assuming that the government study wasn't going to be legit, just based on who was funding and carrying out the study, not on the substance of the study.
> There is a widespread acceptance at this conference that the American authorities have already decided that Morgellons is psychological and — in classic hominin style — are merely looking for evidence to reinforce their hunch.
It's unclear. And made even more confusing by the weird mis-wording.
I like some long-form journalism a lot, but don't like bad writing. Still, even I'm surprised by how annoying I find this writing, I'm not entirely sure why, it somehow seems bad in an especially compelling 'clickbaity' way. I can't explain exactly what I mean.
Actually I think he is referring to the tendency of humans (and presumably our close evolutionary ancestors, aka hominins) to discount evidence which doesn't fit their existing beliefs.
It's still a bizarre and unwieldy sentence, though.
> he American authorities have already decided that Morgellons is psychological and — in classic hominin style — are merely looking for evidence to reinforce their hunch.
This makes total sense.
It's a classic human psychological flaw to jump to a conclusion and then filter all evidence through that conclusion, rejecting evidence that doesn't fit your preconceived notion.
So, there are ideas loitering in his mind that want his attention but aren't sure why? His ideas... have ideas of their own? Wait, or what is it that wants his attention but isn't sure why? Huh? I think it was an attempt at a metaphor that completely broke down, but I'm not certain.
> “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'.
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.
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.
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.
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.
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.
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.
"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?
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.
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.
Yeah and that most of the commenters here have missed that point completely. It's an eerie feeling. Or maybe people just don't read articles in their entirety.
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.
Be careful in how you approach chronic issues like this. Saying the "feeling is not real" is just as dismissive as the doctors in the article. The feelings are real. There just may be no physical cause for them. They are real feelings, perhaps with a psychological or neurological basis.
These people need real help. And that help may be psychological in nature. Don't shame people because of it - support them so they can stand up and accept the help they need.
In general I think the distinction between physical, neurological and psychological is peculiar. It suggests that the mind is not physical but a metaphysical entity that can be be analysed separately from the body and vice versa.
My experience with both mental illness and physical disease is that a systemic perspective is important if we are to avoid fixating on finding a specific diagnosis and instead focus on quality of life.
The mind, at least from our perspective, does not operate like any physical thing. So until neurobiology can explain the psychological phenomena, we need to make the distinction.
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.
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.
Those reports (fiber that wouldn't melt, fiber going through glass) were second-hand reports from the sufferers themselves. They claimed that these things happened. The only actual lab report found that the fibers were normal household things of the variety you'd expect: cotton, human hair, rat hair, etc.
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.
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.
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].
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.
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."
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?
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.
Any tests re-inforce the delusion no matter what the results are.
If skin is sent off and tested and nothing at all is fou d the delusion will make people think things like "science just doesn't know the right test"; "the bugs live in a deeper layer of skin"; "the test wasn't looking for the right things"; "it's a conspiracy of the medical establishment to deny the existence of these parasites so they can push drugs".
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.
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.
> 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.
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.
The chemical need not be novel. I know someone who became sensitive to a specific chemical in their 30s or 40s (tartrazine, Yellow #5, it's in many foods, which aided in identifying the culprit, the reactions often followed eating).
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.
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.
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.
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...)
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?
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.
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?
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?
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.
What? You are rambling past the facts. This very PHYSICAL manifestation of fibers and mites and other things they claim have ZERO - and I repeat for effect, ZERO - scientific evidence backing it. Not any. Not even a little bit. Just anecdotal stories from people who want a solution.
Are these people sick? Absolutely. But the diagnosis is close to delusional parasitosis, whether or not they want to believe it. And there are ways to mitigate the symptoms. It's just that most Morgellon's sufferers don't want to believe it - which, might I remind you, is not uncommon with mental illness patients.
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). 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.
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.
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".
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.
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.
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.
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
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.