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

[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: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.