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

Where's the story?

[xtal]

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.

News?

[Bieeanda]

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.

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

[djSpinMonkey]

"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?

I am a dermatologist, and I see patients with this

[NXIL]

This is referred to as "delusions of parasitosis".

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

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/

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.

The one that really scares me...

[rdmiller3]

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.

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 ... ;-)

Don't worry

[DoubleRing]

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

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:Don't panic

[Demoulous]

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: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]

What if there are other undiscovered disease agents? It's immensely hubristic to assume modern medicine has everything figured out yet.

This is the classic 'argument from ignorance'. To a some degree, you are correct- Lack of evidence is not the same as evidence of lack. However, this is only an argument of the possibility of something existing, not that something does actually exist. That's a pretty weak argument. It can be equally applied to almost any claim. Heck, it can be applied to Santa Claus existing.

just look at the battles the homeopathic community has to fight; some of them are wackos perhaps, but many of them have treatments superior to those of "modern" medicine.

Ah, now here you make a definitive argument: Homeopathic medicine is effective. However, you don't back it up with any evidence at all (and you've infected it with the old 'modern' medicine is ridgid strawman).

To anyone who thinks Morgellon's must necessarily be a load of nonsense

You've got it backwards. People aren't saying it "must necessarily" be nonsense. They're saying the evidence is weak, so it's not necessarily what the victims say it is. There are lots of possibilities about what is going on, from it being exactly what the victims claim to it being nothing at all, to a whole rainbow of things in between. So don't just accept it so readily. That's really showing a pretty closed mind. (And this goes for Homeopathy too, btw)

Re:Like all establishments, medicine is conservati

[SQL Error]

Doctors and medical researchers, like those in any other scientific field, have been taught a certain paradigm for understanding health and disease.

Yes, and that paradigm is: Examine the evidence.

Anything not explainable within that framework tends to be overlooked or ignored

Yep. When there's no evidence, doctors and medical researchers tend to ignore you, as do scientists and indeed all sane people.

just look at the battles the homeopathic community has to fight; some of them are wackos perhaps

And the remainder are frauds.

but many of them have treatments superior to those of "modern" medicine.

No. Modern medicine can provide sugar pills and distilled water just as well as any homeopath.