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

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:...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 ... ;-)

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.

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: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: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.