Parasitic Infection Flummoxes Victims and Doctors

Toxictoy writes "Imagine having a disease that is so controversial that doctors refuse to treat you. Individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin. Sound like a bad plot for a Sci-Fi channel movie? Think again - it could be Morgellon's Syndrome."

Where's the story?

[xtal (49134)]

If you have strange sores, or another infection, a biopsy will reveal abnormalities. The fact the CDC has not been sent any sample by a trained medical professional (or so the article claims), leads me to question the validity of the claims. There -are- procedures in place to deal with undiagnosed infections.

I'm not seeing the story here, and I'm reluctant to believe there is a grand conspiracy keeping a single sample from making it to the CDC.

before calling the CDC...

[by Anonymous Coward]

Partially off topic: I have an undiagnosed skin infection that's flummoxed more than a dozen real doctors in real clinics and hospitals for more than a year. BUT it's not spreading, only verly slowly leaving soem ugly scarring on the affected skin. I've been through viral id and fungal tests (all negative) but since they determined only by elimination that the cellulitis must be bacterial, I can't get any of the GP or dermatologists to do anything but throw antibiotics at me. More than 10 courses of antibiotics later (including Cipro and topical Clindamyacin), I'm basically just containing the infection and slowly accumulating more scar tissue.

...But I can't seem to get anyone to do a damn culture. I've never before been refused a referral, but I get the brush-off or referral to unavailable doctors when I request the one thing that could simply identify the problem. Short of calling the CDC and sounding like a kook, what's a guy to do when the local medical resources just aren't interested in your weird condition because you're neither particularly interesting, nor actively dying?

How to get attention;

[xtal (49134)]

Step 1: Get a written statement from one, two, or perferably, three GP's or dermatologists you have an undiagnosable skin condition or other aliment that is not psychological in nature.

Step 2: Get a phone book or google and find out the nearest university medical research center in your geographic area.

Step 3: Armed with the affadavits in Step 1, contact professors at the university specializing in pathology, dermatology, biology.. just about any -ology except geology, or phrenology, haha. You might have to try a couple, but you WILL find someone interested in your case. Those people have the training, resources, and credentials to find out if there is something novel about your condition. They will pay you no mind without Step 1.

Good luck.

...or not

[EvilMagnus (32878)]

Or it could be the crazies have found one of the internets again.

My local hospital had a patient reporting something very similar - claimed that bugs were eating her and her son, and she was itching all over. Examination showed she did, in fact, have rashes - from direct self-inflicted skin irritation - and the 'bugs' she'd captured in a little baggy were most definitely lint.

She got told to stop scratching and put some cream on it, and she got a nice friendly psych consult.

Never, ever underestimate how many crazies there are. Just ask anyone in retail or another customer-facing industry if you don't believe me.

Re:...or not

[Ohreally_factor (593551)]

I've known people with this "disease" for almost 20 years. You know what else these people had in common? They were all speed freaks, crystal meth addicts. These people need a visit to the rehab (or puzzle palace, if they're not on drugs), not the dermatologist.

It's also in the opening chapter of A Scanner Darkly, by Philip K. Dick.

Once a guy stood all day shaking bugs from his hair. The doctor told him there were no bugs in his hair. After he had taken a shower for eight hours, standing under hot water hour after hour suffering the pain of the bugs, he got out and dried himself, and he still had bugs in his hair; in fact, he had bugs all over him. A month later he had bugs in his lungs.

Having nothing else to do or think about, he began to work out theoretically the life cycle of the bugs, and, with the aid of the _Britannica_, try to determine specifically which bugs they were. They now filled his house. He read about many different kinds and finally noticed bugs outdoors, so he concluded they were aphids. After that decision came to his mind it never changed, no matter what other people told him . . . like "Aphids don't bite people."

They said that to him because the endless biting of the bugs kept him in torment. At the 7-11 grocery store, part of a chain spread out over most of California, he bought spray cans of Raid and Black Flag and Yard Guard. First he sprayed the house, then himself. The Yard Guard seemed to work the best.

As to the theoretical side, he perceived three stages in the cycle of the bugs. First, they were carried to him to contaminate him by what he called Carrier-people, which were people who didn't understand their role in distributing the bugs. During that stage the bugs had no jaws or mandibles (he learned that word during his weeks of scholarly research, an unusually bookish occupation for a guy who worked at the Handy Brake and Tire place relining people's brake drums). The Carrier-people therefore felt nothing. He used to sit in the far corner of his living room watching different Carrier-people enter--most of them people he'd known for a while, but some new to him--covered with the aphids in this particular nonbiting stage. He'd sort of smile to himself, because he knew that the person was being used by the bugs and wasn't hip to it.

"What are you grinning about, Jerry?" they'd say.

He'd just smile.

In the next stage the bugs grew wings or something, but they really weren't precisely wings; anyhow, they were appendages of a functional sort permitting them to swarm, which was how they migrated and spread--especially to him. At that point the air was full of them; it made his living room, his whole house, cloudy. During this stage he tried not to inhale them.

Most of all he felt sorry for his dog, because he could see the bugs landing on and settling all over him, and probably getting into the dog's lungs, as they were in his own. Probably--at least so his empathic ability told him--the dog was suffering as much as he was. Should he give the dog away for the dog's own comfort? No, he decided: the dog was now, inadvertently, infected, and would carry the bugs with him everywhere.

Sometimes he stood in the shower with the dog, trying to wash the dog clean too. He had no more success with him than he did with himself. It hurt to feel the dog suffer; he never stopped trying to help him. In some respect this was the worst part, the suffering of the animal, who could not complain.

"What the fuck are you doing there all day in the shower with the goddamn dog?" his buddy Charles Freck asked one time, coming in during this.

Jerry said, "I got to get the aphids off him." He brought Max, the dog, out of the sh

Re:...or not

[B3ryllium (571199)]

Ah HAH. The movie Scanner Darkly is coming out soon. It's a viral marketing gag. Although I guess in this case it's a parasite, not a virus ... ;-)

Re:...or not

[B3ryllium (571199)]

Both of the websites I've been linked to today, morgellons.org and morgellonsusa.com, are registered by anonymous DNS-by-proxy companies.

It reeks to high heaven of marketing hoopla.

Re:...or not

[B3ryllium (571199)]

I've noticed that at least one of the supposed links are dead. As for how they got the media to buy in ...

The wikipedia article was created in Feb of 2005. It contained a one-sentence summary and a link to the website. The website is registered by a dns proxy company, so there's no DNS contact information. Ooh, another bizarre coincidence - the supposed "national news broadcast" has been postponed until "june or july"; release date of the movie is July 7th. When looking at it in a paranoid mindset, lots of things on the site are curious. Including the DISTINCT lack of decent contact information. I've found only a few email addresses so far. Ironically, the only person whose domain I've been able to nail down as non-anonymous is the supposed webmaster. And his site is cheesily amusing in its own right. :)

The Scanner Darkly had its recent release date, September 16th, pushed back to some time in March, 2006." [canmag.com] - as you can see, it's been bumped around a fair amount.

News?

[Bieeanda (961632)]

More like tinfoil-hat bullshit. Sorry folks, but Morgellons is a particularly sad expression of schizophrenia, not a strange space-age malady that makes you break out in deep-pile shag.

It's particularly telling that the 'big' sites that 'cover' this 'malady' don't actually show pictures of symptomatic sufferers or anything noteworthy like that. No, instead we get useless SEM photos of fibres, bits of dust and ECU shots of cat scratches.

New story title ...

[icepick72 (834363)]

Grow Your Own Sweater.

So, is that a race or a specific space tyrant?

[djSpinMonkey (816614)]

"Morgellan's Syndrome?" Dude, that still sounds like the plot of a bad sci-fi movie. Do they cure it by reversing the polarity of Jordie's visor and routing a graviton particle beam through Data's knee?

Re:So, is that a race or a specific space tyrant?

[B3ryllium (571199)]

I think it's a viral campaign for an upcoming Robert Downey Jr movie ... :)

I am a dermatologist, and I see patients with this

[NXIL (860839)]

This is referred to as "delusions of parasitosis".

http://www.emedicine.com/derm/topic939.htm [emedicine.com]

The *sensation* they have is "real", not to sound like Morpheus: feels like bugs in skin. The sensation goes away quickly when Pimozide is prescribed.

It's not all that uncommon.

It's very hard to convince patients that they need Pimozide, and not a can of "Raid" to spray on themselves.

There's another web site that has been around longer relating to the same issue:

http://www.skinparasites.com/ [skinparasites.com]

They misinterpret lint, fibers, dust, and other debris as parasites; sort of a variant of hearing voices/OCD/other disorders where sensations are spurious or can't be correctly decoded.

Re:I am a dermatologist, and I see patients with t

[blincoln (592401)]

The *sensation* they have is "real", not to sound like Morpheus: feels like bugs in skin.

Yes, this is (IMO) one of the more bizarre aspects of psychosis - it's not just the the people suffering from it *believe* in things that aren't true, they actually experience some of them directly.

I've known a couple of people with schizophrenia, and while it's a terrible condition, it gave me a lot of respect for the power of our minds.

Don't worry

[DoubleRing (908390)]

Don't worry, I have mod points! Oh, wait...

hoax

[dan14807 (162088)]

It's a hoax. Notice how all of the images of exotic multi-colored fibers are close-ups where you can't see the person or the sores they talk about. The pictures of people with sores on them show people with plain sores.

The one that really scares me...

[rdmiller3 (29465)]

One of the links for this "disease" talked about a woman who was taking her two-year-old son to the doctor because she thought he had it.

Since these fibers are obviously ordinary textile fuzz and lint, that means that the poor kid's delusional mom is inflicting the condition upon him. I hope that their doctor had the sense to contact someone in Social Services.

Particularly Disturbing

[monoqlith (610041)]

This isn't surprising at all. As someone who has been misdiagnosed with schizophrenia with affective symptoms(schizoaffective disorder) because I brought myself into the emergency room with tachycardia, panic, and what appeared to me to be some kind of neurodegenerative illness(I literally could not think), I doubt that the patients in this story are making up what they feel. They certainly must feel the sensation of itching, scratching - it is just as real to them as the breakfast they eat. In my case, it was neurological Lyme disease, which the doctors in question failed to test for and failed to diagnose, prescribing an antipsychotic medication - claiming I was delusional - which made my symptoms much, much worse. However, after seeking out the help of a psychiatrist and neurologist, I was offered correct treatment for the Lyme disease that I was originally diagnosed for in 1989 - when I was six years old - and for which I had been treated inadequately. After intravenous treatment with antibiotics and immune-modulating drugs, my brain became sharp again - indeed, sharper than it has been since I was a small child, before my brain had fully developed. Schizophrenia doesn't go away with antibiotics, and usually neither does severe cognitive decline - Lyme disease does.

In this case, there's a suspicious connection reported on multiple web sites about people with this disease being co-diagnosed with Lyme disease. While this "Morgellons" parasite-disease may be a delusion, it probably has a neurologic, organic cause, due to suddenness of onset and other factors. I wouldn't be surprised if the cause turned out to be Lyme disease, which can have a wide range of neuropsychiatric effects including delusions, hallucinations, memory problems, suicidal and homicidal ideation, thought disorder, and severe cognitive deficits . One quote from TFA is quite telling:

Ginger Savely, a nurse practitioner in Austin, Texas, says she has treated 35 patients with symptoms. "Everyone tells the exact same story," she says. "It's just so consistent." Savely prescribes her patients a course of broad-spectrum antibiotics. "If I knew what I was dealing with," she says, "it would be easier to treat." Yet, she says, her patients--including Lawrence--improve within weeks.

. The fact that it may respond to antibiotics may indicate some relation to a bacterial illness, in particular Lyme. It's truly an insidious disease that can go undetected and undiagnosed for many years while patients' lives deteriorate - and no doctors are literate enough in the treatment of this disease to treat it adequately.

In any case, the medical establishment is often too quick to diagnose a patient with a complaint it does not understand as a primary-onset psychiatric disorder. By doing this, they cause a great deal of harm by delaying treatment in the case that the disease is *not* a psychiatric disorder. In order for medicine to be able to heal people, it needs to stop this trend and start taking earnest, persistent reports of people's pain seriously - even if it is delusional. If all of the possible organic causes have been researched and exhausted, only then is it time to take out the prescription pad for anti-psychotic or other psychiatric medication.

Re:Don't panic

[arivanov (12034)]

The success will be similar to what dermatology proper can achieve anyway. Modern dermatology cannot cure eczema. Most varieties of psoriasis are uncurable as well. Add in neurodermatitis and a few other skin conditions and you get a fairly long list of conditions which the doctors cannot deal with. They poke at it from different angles like tribal shamans and the success rate is about the same. The reality is that we know so little about the human skin, it is not even funny. Just take Pimecrolimus and eczema. Nobody has even the faintest idea why it works. Staph and eczema? What is the cause and what is the effect? So on so fourth. I read the RTFA and I can understand some of the patients described in it who are taking a gun to a dermatologist appointment. I have wanted to do that on couple of occasions myself.

Re:Don't panic

[70Bang (805280)]

Good points! Incredible how important the human body's largest organ is and we know so little.

Isn't leprosy still on the "uncurable" list? Is it even on the "containable"; i.e., halt it where it is, point? akin to tuberculosis. My mom got it when she was young and as a school teacher, has to get x-rays of her lungs every year to show it's still dormant.

One other area to touch on is rehashed so often you'd think people catch on: misuse of anti-bacteria related issues...yet there are a lot of peabrains running loose in an unorganized conspiracy to sink modern medicine. You'd think all of the parties involved were backwoods hillbillies with no educations, IQs smaller than their shoe size, and fewer teeth than toes.[1]
There are three guilty parties: 1) patients; 2) doctors; 3) people in general.
1. Patients are guilty because they think doctors are just quoting a pamphlet when they tell them, "take all of the pills, don't stop just because you start feeling better." And what do people do? that's a rhetorical question. Boom. Compromised antibiotic.

2a. Doctors are guilty because patients come to them when they are ill and it's a cold. The patients harangue them into giving them an antibiotic because they think it'll make them feel better, despite Dr. Quack telling them antibiotics don't work with viruses. Finally, the script pad comes out and voila! Compromised antibiotic!

2b. Doctors are also guilty because each hospital has at least one group where the medical staff and pharmacy administration interact; e.g., "P&T" (Pharmacy & Therapeutics). Issues such as what the formulary items should be, how to deal with non-formulary items, and importantly: what drugs can be administered when. It's supposed to be binding, but doctors don't work for hospitals, so they'll basically do what they want when it comes to that type of thing. The policy can be to only use some new antibiotic for specific patients or diseases|cases and doctors will be more concerned if their shoe is untied when they place the script for the brand new bug-killer and can proudly tell the patient, "We've got somoething brand new and it's going to make you feel a lot better very soon." Shazam! The beginning of the end of that antibiotic. Another compromised antibiotic.

3. Society in general and the marketing departments of various household goods: all of the various soaps & cleansers which promise to kill bugs when you use them. You're only supposed to use soap to clean your hands off - remove the stuff which doesn't belong there - remove as in get it off of your hands, not kill some of the bugs and leave a small number of immune ones in place. Eugenics takes over and we begin breeding superbugs.


[1] Wait. Isn't that a description of NASCAR fans? Sorry for the mixup.

Re:Don't panic

[Demoulous (325692)]

Sounds very similar to what I did to cure mine. Avoid all shampoos with parfum/perfume, same with soaps and the like. I use a dead sea mud soap which my skin loves and it kills my fungal psoriasis dead. I also use Pears transparent soap on my face and let myself dry in a towelled dressing gown. As a result my skin is in the best state its been in, in years. My dermatologist hadn't the time to be arsed, so I did this all myself with trial and error like the above poster.

Re:Don't panic

[Propaganda13 (312548)]

House would have had this cleared up during one of his clinic duties. It wouldn't even warrant a full show.

Re:Attention! Attention!

[chiller2 (35804)]

No problem mate. I'm off down the Winchester ;)

By the way, you've got red on you!

Re:These people are in need of attention

[blincoln (592401)]

The healthcare professionals (Doctors/etc) should really not be turning these people away quite so easily imho.

It's very difficult to properly treat someone who is delusional. In most of the US, patients cannot be forced into treatment unless they are actively suicidal or homicidal. In my experience, it's not that doctors turn them away, it's that they refuse to accept what's really going on and leave on their own.

Re:A new low

[xstonedogx (814876)]

Even the article makes it abundantly clear that an infection is not the problem. The real story here is the stigma attached to anything relating to mental health. That is not to say these people are not suffering. The problem is they refuse the professional's opinion out of hand. These people are so frightened of being considered "delusional" that they act in ways that make the rest of us think they are nuts:

When Miles Lawrence sped to the hospital, he was told he had delusional parasitosis and that the weird spines were "just dirt." But over the next week his symptoms got worse. He scratched at his elbows and noticed more fibers, and little black specks. "It was like they were fighting back," he says.

It is more important to Lawrence to insist he is not delusion (or perhaps there are some other incentives, such as being special enough to be written into a Popular Mechanics article, or the attention one receives when one has a scary-sounding disease such as "Morgellons Syndrome") than to end his suffering through several apparently effective cures. Those that allow treatment see the alleviation of symptoms within weeks!