October 24, 2006

How can the doctors say your illness is only in your head...

... if stuff that looks "like large flecks of black pepper" is coming out of your skin?

24 comments:

Dave said...

Selection bias.

Or perhaps confirmation bias.

In any event, it sounds, like so many "clustering" stories, like bullshit.

These people may have some disease but basing a diagnosis off a 17th century French "medical" text is as smart as basing observations of the planets on pre-Copernican astronomical models.

The vast capacity of man to be seduced by stupidity boggles the mind.

Pogo said...

I have been expecting the onslaught of Morgellons patients since seeing the USA today article on it this past summer.

The non-dermatolologic symptoms are nonspecific. The dermatologic findings are debatable.

The key question, Is this something, or nothing? remains unanswered. Which is really quite strange if, in fact, people are exfoliating skeins of yarn every day.

This will most likely have the same arc as hypoglycemia, chronic yeast infection, chronic Lyme disease, and multiple chemical sensitivity. After two or three years, only the true believers will diagnose it anymore.

That's my prediction. But I remain open, and skeptical, for now.

Dave said...

Wikipedia has an interesting discussion, here.

Ann Althouse said...

Pogo: Lyme disease is fake (in chronic form)?

WhatsAPundit said...

I have a high resistance to local anaesthetics.

I recently told that to a doctor prior to a fertility procedure involving a local anaesthetic.

He said "this always works".

Ten minutes after the shot, he comes in, I say "I'm not numb."

He says, "You're just nervous."

He does the testicular biopsy.

Afterwards he says "next time we'll bring in an anaesthesiologist".

I hate doctors.

bearing said...

Well, let's look at the possibilities here:

(1) There exists a physical cause or pathogen that will be identified before the CDC gives up trying to find it.

(2) There exists a physical cause or pathogen, but it will not be identified before the CDC gives up trying to find it.

(3) The symptoms are psychological in origin.

I see no reason to call the sufferers "stupid." If the outcome is (1), then they're sick and perhaps can be cured with drugs or diet or some other "physical" means. If the outcome is (3), they are mentally ill, and perhaps antidepressants or psychotherapy will help.

And God save them if the outcome is (2), because their doctors will suggest antidepressants and psychotherapy until the cows come home, but it won't help.

(Is anyone else not too impressed with the logic of "If it's a new bug... we'll find it?" Hubris. A better statement is, "We can do nothing for you unless we find a bug.")

Dave said...

Bearing: relying on 17th century medical texts to diagnose an illness is stupid.

PatCA said...

I remember during the silicone implant lawsuit days that women said silicone was seeping out of their skin in various places.

Do toxins seep out of our skin, or is this a common manifestation of neurosis (or wanting a big settlement?)

NSC said...

I am not sure, but wasn't all the "silicone implant is causing women to get sick" ultimately proven (proved?) to be wrong?

George said...

Perhaps these poor folks have been swallowing pepper grinders....

Morven said...

I don't think they're basing a diagnosis off a 17th century text; simply that in searching for their symptoms, one of them came across that text.

Something's up with these people. Maybe it's a disease; maybe it's parasites; maybe it's a wierd allergy thing, and maybe it's mental illness. At this point, nobody really knows, it seems.

It's also uncertain whether all these people are in fact suffering from the same unknown whatever. We always strive to classify things, and people feel better ascribing a condition to their symptoms, even wrongly.

The problem with the It's all in your head diagnosis is that mental illness is not often taken seriously by anyone - doctor or patient. People feel dismissed and insulted if a doctor tells them that, and doctors seem likely to decide that anything unresponsive and unobvious is 'all in the head'.

It's not any less of a problem for these people if it's indeed psychosomatic; they're still really having things happen to them.

TMink said...

We often forget that the placebo effect is MEASURABLE. It exists, it is an actual phenomenon. It is called the placebo effect because medical and psychological science do not yet fully understand the mind/body connection. It is not just mentally ill people who effect their body through their thoughts, we all do to a greater or lesser extent. People with amazing physical symptoms that are psychogenic may just be talented in this area.

This is different from faking or malingering. But it helps if we remind ourselves that the "placebo" effect is a measurable, repeatable manifestation of the mind body connection. Not skullduggery, it is good science.

Trey

Goesh said...

I think they are all on statins. It sounds reasonable to me. They were probably told to eradicate any cholestrol they had in their veins.

Pogo said...

Ann,
There is a subset of sufferers of medically unexplained symptoms (fatigue, numbness, foggy thinking, chronic pain) that attribute their symptoms to "Chronic Lyme Disease".

This group differs from post-Lyme disease syndromes of focal neuropathies, headache, achiness, and fatigue which can persist for six months after treatment. Subtle cognitive changes can also occur, suggesting a subclinical central nervous system infection at onset in certain patients.

However, there is little to suggest a "chronic" appelation to most such symptoms after a typical course and serologic tests prove negative. For example, chronic Lyme arthritis more often occurs among the untreated or inadequately treated.

The majority of patients with early features of Lyme disease will be cured by antibiotic therapy. But quite often a "Lyme disease" diagnosis is made based on improper serologic testing, novel diagnostic tests (mostly bogus), misinterpretation of the literature, or clinician "personal experience".

There is usually no evidence of an ongoing symptomatic infection with live organisms in "CLD", which means they have something else, or just "Medically Unexplained Symptoms".

P.S. I just addressed Morgellons(among other MUSs) in a talk this morning for about 400 MDs.

mikeyes said...

It is not impossible, although unlikely, that a brand new disease is being described but the most likely explanation is that the CCD will find a variety of problems when they study the patients who suffer from this set of symptoms.

There is a well known disease, known as Delusional Parasitosis, in which a patient believes that he or she has mites crawling under their skin and will even take baths in bug killer to get rid of them. When studied (by dermatologists, they never see a psychiatrist) they always have no infestation and the "bugs" that they bring to the doctor are always "fomites" or little bits of skin and debris. This is clearly a psychiatric illness and almost impossible to treat because a) the patient does not think they have a mental illness and b) because it is almost impossible to treat anyway as medications are not that effective. This is "in your head" only in that it is a brain disease and not normal.

On the other hand, there have been a number of illnesses that have been thought of as being in the realm of mental illness only because they are not testable or proveable by means of testing and later on discovered to have a physical cause. Some have been shown to be due to parts of the brain being different (such as Panic Disorder) and others may be due to abnormal (in the sense of not statistically average) receptors. One of the latter conditions is hypersensitivity to medications, a condition which is inherited and manifests itself by the patient having prominent and often rare side effects to usual doses of medications. In this case the patient may respond to very low (1/3rd to 1/10th of the usual dose) doses of medications to get the theraputic effect.

Physicians are always skeptical of new diagnoses, mostly because it has been engrained into our brains that we should have evidence to diagnose and treat disease. After all, the tools we use are powerful and dangerous, that's why the state regulates medicine, and we still adhere to the "First do no harm" adage. But we also are trained to listen to our patients and to help them become comfortable with their illnesses if not cured of them.

I realize that anyone can come up with individual cases of insensitive or incompetent physicians (they are not always the same) but that is true of any profession. Human suffering has a way of attracting "experts" who promulgate all sorts of solutions whether there is proof of efficacy or not. Anyone who suffers wants a quick and easy answer to their pain. Unfortunately, there often are no complete answers. And there are often no good reasons that we can discern as to why people suffer (not that it stops people, doctors included, from speculating or pronouncing.)

I hope those who suffer from these problems find relief. In my experience, malingering is rare.

HaloJonesFan said...

Heh. I referenced this in the Multiple Chemical Sensitivity post!

The thing that we're seeing here is the power of anecdotal evidence and the human desire for explanations. These people know that they have seen things. It doesn't matter what other people say about it--they saw things, and they know. Things happened--you can't tell me that this is a little bit of skin, have you ever seen skin that looks like that? This must be something else.

Heh, here's an amusing study--correlation between Morgellon's "sufferers" and people who believe that the US government was behind the WTC attacks.

peter hoh said...

Human Botfly larva -- it really was all in her head.

http://www.vexman.com/botflyremoval.wmv

The video is not for the squeamish.

ed said...

Hmmmm.

1. There are a multitude of unknown diseases that infest small geographic areas of the world that aren't generally known to medical science because the afflicted are rarely people from countries wealthy enough to expend the funds necessary to do the research.

2. There's an enormous amount of human migration going on right now of people entering Western countries from poor remote areas, and thus bringing their local afflictions with them.

3. A large number of American soldiers in Iraq are under medical care at any single point in time due to the variety and virulence of largely unknown local ailments.

4. This was once previously called "Gulf War Syndrome".

5. Sir Richard Burton described a number of very odd diseases in his search for the source of the Nile.

6. As someone who suffers from ESRD I've encountered enough jackass doctors to write a book. If I had to choose between people with demonstrable symptoms and overly smug doctors, I'll take the patients.

I'll point out that the single greatest cause of hospital infections are the unwashed hands of doctors. As someone who has spent a great deal of time in hospitals I can't count the number of times I've had to yell at doctors, and nurses, to wash their hands prior to examining me.

And to wash their hands again after they fiddle with their ties, pens, labcoats and clipboards.

7. As someone with ESRD, and who was initially diagnosed with **emphysema**, how on earth is THAT possible, I'm frankly unimpressed by the ability of doctors to accurate diagnose anything short of a common cold. In most cases the "diagnoses" is little more than a wild ass guess followed by medication. If medication works then diagnoses is correct and the doctor applaud's himself.

If medication doesn't work then try different medications until it does.

And yes. I'm not all that impressed with the medical profession.

Atticus said...

I came in late, but if this is a doctors-cause-more-trouble-than-they-cure thread, count me in. Prescribing medication is a way for doctors to feel good, not necessarily a way for them to help the patient. "Hmmm...don't know what's going on here, but if I prescribe something, they'll think I know something..."

Pogo said...

So a fallacious argument is again proposed.
"Doctors-cause-more-trouble-than-they-cure ", therefore people can knit sweaters under their skin.

Nuts to that. Ed discusses the misdiagnosis of his ESRD. How does that happen? If dyspnea was present at that visit, emphysema would have been in the differential. But since ESRD is purely a medical term and responds to a limited array of very high tech medical devices, I think Ed's complaint has not soured him on MDs entirely. Heck, even Osama is alive (if he is) by the grace of modern medical treatment for ESRD.

"Prescribing medication is a way for doctors to feel good, not necessarily a way for them to help the patient."
Sort of.
There's a demand side to that equation (try refusing a mom antibiotics for her screaming kid with ear pain at 10 p.m.). And then there's empiric trials to treat symptoms. Since the majority of prescriptions are written for hypertension, diabetes, lipid-lowering, asthma, heartburn, allergies, and depression (i.e. testable conditions), I think you are way off base. It sounds more like anecdotal experience by you and close friends.

Yes, much as in law, policework, government, and universities, there are some real idiots in medicine. But since there's hardly a shortage of practitioners, fire the idiots, and find a better one.

And if you yourself know that much more than the MDs, get a degree and share your expertise. A PA can write prescriptions after just 2 years training.

Atticus said...

Hey, there, Pogo. Slow down just a tad. My post had nothing to do with sweaters under skin. You said, "It sounds more like anecdotal experience by you and close friends." You would have gotten genius points if you'd left off the part about my close friends. My post was not meant as something ready for publication in JAMA--it was meant as a flip me-too response to others who are frustrated with doctors who refuse to hear what patients are saying. Instead of getting all huffy and stuffy about me criticizing doctors, perhaps you should notice that MANY people are frustrated with doctors. It's a noble profession, yes, but that fact does not protect doctors from criticism. Even flip criticism.

Pogo said...

Re: "Even flip criticism."
Point taken.
Criticism is in fact warranted. I have my own family horror stories, and harbor no illusions about the general ability of MDs, PAs or NPs. There are some frighteningly smart folks, and some criminally stupid ones. I think our national average is 'mediocre'.

Michael Porter in his new book Redefining Health Care: Creating Value-Based Competition on Results goes into this in detail. In short, the lack of reward or punishment for doing good or bad work leads to generally mediocre care.

As a result, doctors who refuse to hear what patients are saying don't get paid any less than doctors who fulfill that demand, and they stay in business to boot. So if I spend 2 hours with a patient to ferret out why they have chronic pain, and eliminate potentially serious disorders missed in the past, I get paid the same as when I spend 45 minutes and do much less work.

What if hotels operated that way?
Any other business would go under. But our current structure rewards de minimus and punishes detail.
Guess which approach becomes dominant?

Atticus said...

It is a frustrating topic for me. I'm watching my elderly mother get lost in the medical mess--and she has family who is working hard to guide her care. Still, we're tired of doctors who spend a few minutes with her and think of yet another medication she should try.

Frustrating as the medical world is, it might be worse to think of what solutions could be suggested to fix it. Just because HillaryCare looked awful doesn't mean it couldn't get worse.

ed said...

Hmmmm.

Ed discusses the misdiagnosis of his ESRD. How does that happen?

Because the doctor concentrated on a symptom rather than the cause.

Symptoms: anemia, coughing up a pint of blood a day, tremendous difficulty in breathing, low blood count.

Of all these the doctor zeroed in on the "tremendous difficulty in breathing" and pretty much ignored everything else. It wasn't until my blood count was at a near fatal low that he finally stopped treatment for emphysema and had me rushed to the emergency room. Where they accurately diagnosed me with ESRD with a stupid blood test.

How long did this treatment for emphysema take? 3.5 months! 3.5 months of having lung function under 25% and my fingernails blue from a lack of oxygen. 3.5 months of various medicated inhalers and having to walk around with a tank of oxygen.

Not overly impressive IMHO.

Does this mean I damn all doctors? Not at all. But this does mean that I view all doctors as complete incompetents until they prove otherwise.