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."

Comments

I'd mod you up if I had poist

[Critical_]

I'd mod you up if I had points. I'm a medical student and I got the chance to take a history on a patient claiming to have this syndrome. It ended up that we gave him risperidone. If I'm not mistaken, pimozide has some fairly bad side effects and isn't normally prescribed these days. Then again, I'm only a med student.

These people are in need of attention

[SirFlakey]

..One way or another. Ok, so I laughed at the "Grow your own sweater" comment =) but let's face it Only two options here - it's fake an in their heads or it's real and it's a problem. In the latter case, there are a LOT of strange diseases out there, we have procedures and people to investigate this and so they should. In the former case they still need help, though arguably of a psychiatric nature.

The healthcare professionals (Doctors/etc) should really not be turning these people away quite so easily imho. Yep we have a lot of 'crazy people' out there but it probably doesn't help having them sit in the corner of their houses spraying themselves with Raid/Baygon.

Re:...or not

[Ohreally_factor]

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:Don't panic

[AndreiK]

Reading the article, of course it can. It's the placebo effect.

Re:...or not

[B3ryllium]

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 ... ;-)

/. morons - It could be a actual condition

[Vskye]

Mod me down, that's fine. First off, most of the comments here did'nt even RTFA and just looked at the pics. Yet most answers should be modded down to 0. Why is this far fetched? Never woke up getting bit, had a cockroach in you're mouth, (never lived down south heh?) or had other weird bug experiences? Some people have extreme reations to stuff, like.., trees, grass, anything non-concrete, mold, and insects. (list can go on and on.) So, why is so *ucking impossible? I used to think that carpal tunnel was bs, but a few months ago I had a sharp pain in my right arm, and now I'm due for surgery in June. Poof!

before calling the CDC...

[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?

Particularly Disturbing

[monoqlith]

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.

Mental Illness is a Real Illness

[reporter]

Though mental illness may prompt laughter from some quarters, mental illness is a serious issue.

In the issue at hand, there may be a common, tangible factor causing the numerous instances of Morgellon's Syndrome. Given the horrendous amount of chemicals that accumulate in non-organic foods, would anyone be surprised that these chemicals may be affecting the operation of the human brain?

Has anyone done an analysis of the types of food that victims (of Morgellon's Syndrome) eat? Is there a pattern?

Re:Mental Illness is a Real Illness

[orangesquid]

Something that used to cause bizarre delusions, hallucinations, and misperceptions in mideival times was tainted rye bread.

Some of these things _really_ sound like a bad acid trip to me. I'm not kidding---what if these people do have some bizarre infectious agent that causes rashes and secretes hallucinogenic agents into the bloodstream, making the rashes appear to be outlandish and twirl out of the skin and dance around inside your arms?

Hallucinogens as potent as LSD-25 are extremely difficult to detect. If this is a new, unusual, and very strong hallucinogen (perhaps one that doesn't cause the notorious pupil dilatation that would normally be a tip-off of a chemically-altered mental state) secreted by an infectious agent, it would all add up, at least in my eyes.

Has this possibility even been investigated? It would also be consistent with the disease being treatable with BOTH anti-infectious and anti-psychotic methods.

Of course, this doesn't entirely explain the pictures on the MRF website... but perhaps some of the things being labelled as Morgellons don't involve the same infectious agent at all.

Re:Mental Illness is a Real Illness

[lawpoop]

"Some of these things _really_ sound like a bad acid trip to me."

Actually, I think there's only one symptom that sounds like a bad acid trip, and that's Formication, or delusional parasitosis. It's the feeling of bugs crawling on your skin when there's actually not any bugs crawling on your skin.

I doubt it would be any kind of hallucinogenic drug. The main reason is that there are no other mind-altering symptoms, such as change of body perception (i.e. being a giant, having wings, etc), change of perception of time, hallucinations, other kinds of delusions, and so forth . I would be very surprised if there were some kind of chemical agent that *only* cause formication.

I actually suspect this could be a parasite. The thing about parasitic skin infections is that you actually feel like things are crawling inside your skin. The difference between delusional parasitosis and actually having parasites in your skin is that a delusional person doesn't really have parasites -- otherwise both feel that they have bugs crawling in their skin. Here in the relatively developed United States, people rarely get skin parasites, so the common perception is that the feeling of bugs on your skin is a a symptom of craziness.

The sores that open up on peoples' skin and the strands or fibers could be the method of reproduction. Similiar to how small pox spreads through the germ in small pox sores.

Re:...or not

[Anonymous Coward]

OK, if this whole disease is a viral marketing gag for ASD, I've got to hand it to the people who put it together. First they have you thinking it's a real disease, then you realize it's delusional in nature, then you realize it's deliberately delusional. Nifty.

Re:...or not

[B3ryllium]

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:Where's the story?

[Yehooti]

Maybe someone might benefit from my solutions to my various skin problems encountered over the years. Warts--CP Nitric Acid until it hurts, then soaked in a baking soda solution until it stops fizzing. Unknown reason lesions--soaked in a 50/50 mixture of 3% Hydrogen Peroxide/ 91% Isopropyl Alcohol until you get bored. These things have worked for me in the past. Maybe trying them next time will kill me, so if you want to try them consider that possibility (for you, not me).

Really, I believe that too many of the cures of old are considered considered as folk medicine today and discounted without further trial. If you can't get it via Rx, then it isn't valid. Bullspit! Sure no story in homebrewed solutions.

Who knows

[drgonzo59]

Some of people had the fibers that grow from their skin analyzed. They are cellulose but do not come from clothing. My hunch is that it is probably both mental and physical. There is something going on -- perhaps various species of scabies, skin mites (demodex foliculorum) and "friends", perhaps even some bacteria or fungi. Sometimes perhaps it has to be two of the factors at the same time.

. As for the mental part of the disease, it seems that humans over the thousands and thousands of years have developed a basic disgust and revulsion to small crawling things on the skin -- spiders, lice, bed bugs, centipedes, worms, scorpions and so on. There is a good reason for that, those things are associated with disease, poison bites, and un-cleanliness. On average, people would probably be less afraid of a wolf than of one of those creepy-crawly things. That is why it is not surprise that a good percentage of these cases are mental.

Mind you doctors still don't know that much about the human skin. There is no cure for rosacea -- some think it is the demodex mite that causes it, some think it is a bacterial infection, some suspect it is just genetic. Some antibiotics have been shown to work, sometimes lasers help too, but nothing definite. A lot of guess work. Doctors are not gods, they only know what other doctors may have published in a journal or by doing research themselves (rarely happens). So just because they haven't been able to find anything doesn't mean it is not there.

Better safe than sorry...

[Etcetera]

I'm not one for quackery or anything else, nor do I know anyone who's had this "disease", nor do I believe there is some Giant Government Conspiracy to infect the population with chemtrails designed by Karl Rove or other nonsense...

But rather than freakin' dismissing everything as paranoia, wouldn't it be a good idea to actually *investigate* this? The article, along with a writeup in the American Journal of Clinical Dermatology bring a very important point. When diagnosing something as psychosomatic, make sure that the pyschological symptoms are the primary cause of what's going on, not secondary in nature or being caused by something else.

See also an interesting study from the Oklahoma Dept. of Health I found with 2 minutes of Googling.

Is it a bioengineered weapon from evil crazed oil companies? No. But whatever the underlying medical cause(s) of some of this is, it deserves a legitimate medical investigation. Isn't that what science is about?

Re:Don't panic

[the_duke_of_hazzard]

I suffer from seborrhaic dermatitis. For years I had no success with doctors' treatments which generally had bad side effects. Then I gave up sucrose and junk food and was effectively cured. No doctor ever mentioned this and it turns out that there's a group of people on yahoo who advocate this treatment. It works pretty much 100% of the time, according to those guys. This has made me a lot more cynical about the medical profession and its relationship with business. It's in no-one's financial interest to advocate a cheap and simple cure that involves _not_ buying and consuming refined foods, except the patient - not the doctor, not the food industry, not the makers of creams etc..

Re:How to get attention;

[Anonymous Coward]

You likely won't get past step 1.

I have a rare medical condition (type of intersex condition). Visably androgynous patients tend to get treated pretty poorly by the medical profession (mostly due to anti-gay prejudice.) Although gay or HIV+ patients can usually find a doctor, even "gay-friendly" doctors don't want to deal with intersex patients.

The problem is 1) Most doctors don't want to deal with patients with rare conditions because they take up a lot of time, taking time away from other patients, 2) Doctors don't want to order lab tests, MRIs, etc for rare conditions because they fear insurance companies will deny it, 3) When they do order tests, they try to come up with a very vague diagnosis to see if they can sneak it by the insurance, and 4) Doctors never want to make a written statement that "Patient X has a rare disease" because they might have to defend it later.

So since you have no written diagnosis, and no evidence, no researcher will pay attention to you.

Re:Like all establishments, medicine is conservati

[technothrasher]

Modern medicine can provide sugar pills and distilled water just as well as any homeopath.

I've got to disagree with you there. Homeopaths do a much more creative and fascinating job of providing sugar pills and distilled water. Homeopathic websites have provided me with hours of entertainment. I guess in truth it should upset me, but I don't really get emotionally envolved until they start applying their nonsense to veterinary medicine. That makes me go ballistic. Poor little guys have no way to say no.

A few obvious issues... what a troll

[sirwired]

If it is consistently cured with antibiotics, then it ISN'T a parasite. And bacteria don't create little worms crawling out of your skin. (Note, however, that parasitical infections can go away on their own.)

The woman in the article mentioned she saw spaghetti-like things crawling out of her son's chest. She pulled, but "couldn't pull it out." That is a very convenient excuse for not being able to produce a sample. Has this woman never heard of scissors, or are these things as tough as steel too?

Parisitologists and infectious disease researchers LIVE to discover new interesting afflictions. Believe me, if we had a new genuine disease causing spectacularly impressive crap to crawl out of victims skin, there would be journal articles about it in a minute. Also, wouldn't such obvious symptoms make it pretty damn easy to diagnose?

Lyme disease, yeah, that was a toughie to initially diagnose because the symptoms are so varied and suble. But fiber-like-stuff crawling out of people is pretty unambiguous.

And, "black flecks coming from pimples"? Err... sounds like blackheads to me.

That website is pathetic. Several pages of pictures, most of which look like shredded yarn scraps. It would have been a lot more convincing if there were pictures of the yarn crap actually coming from people. We do have some blurry shots of skin-like-substance with something on them, but nothing in particular to identify. Have these folks ever heard of "macro" mode?

I have heard of nasty parasitical infections indeed causing a crawling sensation inside the skin, and likewise inexperienced doctors thinking it is psychosomatic. However, in none of those cases was the diagnosis difficult once the actual worm/bug was dug out of the skin.

Either this "syndrome" was concocted by a complete nutjob, or this is the job of some "performance artist" trying to get an articles written up in various places.

SirWired

Re:Don't panic

[fain0v]

Doctors are not some evil group that wants you to suffer with a disease. They are usually people that go into the profession to cure people. They dont develop the treatments either. They memorize what the symptoms and treatments are and act accordingly.

Now then, who develops the treatments? For the most part, drug companies do. They are also not evil people, but they ARE in it for the money because they have to be. They target chronic diseases where people will be treated for a long time, and acute diseases where they will make a lot of money. If during their research they discovered that say "Motion sickness pills cured migraines", the results would be completly ignored because there was no money to be made.

There are however other groups that do research into diseases. Academic and government labs. Many orphan diseases are researched by these groups and treatments have certainly come out from them.

Now whose fault is it that an easy cure is available that you know about, and it is not being used?

Its YOUR FAULT!

If you know how to cure a disease in a simple manner, dont just sit on your butt and bitch about the establishment. Make contacts with non-profit organizations in that area. Get them to give money to a lab that is qualified to test your treatment. Get them to publish the results. Until that time, no one will take it seriously. Science and medicine are full of stuborn people, but they will change their mind if presented with enough evidence.

Re:Don't panic

[thatiger]

I lived in Nigeria and actually had eczema as a child. My grandparents suggested a drink of a traditional coctail every morning which was composed of juice from a certain tree bark. About a week later, I was told to wash of my body with the same liquid. I was pleasantly suprised to see that I was eczema free about two days later. I've never had an eczema relapse since.