Dr Dustin Ballard/Kaiser ER MD in San Rafael

[kmar]

Dr. Dustin Ballard: When illness is real and when it's 'contested' - Marin Independent Journal

From the Marin Independent Journal
Novato, CA

Dr. Dustin Ballard: When illness is real and when it's 'contested'

by Dr. Dustin Ballard
Posted: 08/29/2010 07:07:05 PM PDT

Some years ago, a sinewy chap sought my help for an aggravating condition. He was convinced microscopic bugs were crawling over and under his skin, and it had driven him to a frenzy of restlessness. His arms and legs were covered with excoriated sores and fingernail-induced streaks of scarlet. I inspected him head to toe and couldn't find evidence of insects or parasites.

As I silently puzzled the situation, he handed me a smudged envelope and asked me to carefully look inside. I removed a half-dozen pieces of tape, each holding a spattering of blackish specks that, he declared, were the bugs that were tormenting him. I was doubtful, but nonetheless took a close look under a microscope. While I didn't see signs of movement or anatomic structure, I wasn't sure what the specks were or where they'd come from.

After several minutes of debate, during which he wanted answers and I challenged his theory but failed to offer an alternative explanation, I noticed something. His fingernails were crusty. Along the nail bed and under the nail tips were a blackish substance.

He was a painter, and it seemed clear to me that he was mistaking paint chips for parasites. But, he remained dubious. I thought he probably had a psychiatric condition called "delusional parasitosis;" he was certain that he had a treatable infestation.Ê

Years later, I wonder whether he and I were meeting at the intersection of a contested illness known as Morgellons syndrome. Morgellons received some media attention around the time that the Centers for Disease Control and Prevention (CDC) announced it was partnering with Kaiser Permanente to study the syndrome (I am not part of the Kaiser Permanente team involved with Morgellons research).
But, first, what exactly is a "contested illness"?

To define contested illness, let's start with the concept of "medicalization" - the process by which aspects of the human situation are described and treated as medical conditions or illnesses. For example, bad breath is diagnosed as halitosis, and excessive sweating transforms into hyperhidrosis.

Lately, the medicalization of society has been driven forward by several dynamics - the insatiable market and marketing of personal health and beauty products, and the Internet-enabled organizing capability of condition-specific support groups. When advocacy groups, arguing that they are suffering from a treatable medical condition, collide with skeptics within conventional medical institutions, the result is a contested illness such as Morgellons.

Nearly 10 years ago, biologist Mary Leitao's 2-year-old son developed a strange skin condition. He scratched at himself incessantly, creating sores that, upon close inspection, contained bundles of multicolored fibers. The physicians Leitao consulted were either baffled or skeptical. Frustrated, Leitao set out to educate herself and, in the process, discovered that her son's symptoms had been described before, as far back as the 1500s. In fact, she found a name for the problem in Thomas Browne's "A Letter to a Friend" (1690) in which it described a "distemper of children É called the Morgellons, wherein they critically break out with harsh hairs on their backs."

Determined to help her son and others like him, Leitao created the Morgellons Research Foundation and a website to disseminate information about the condition. She was surprised when thousands of strangers with similar symptoms contacted her. Pretty soon, Leitao's frustration had transformed into an advocacy movement.

But, experts in dermatology and psychiatry were not convinced - the overwhelming opinion from the medical community was that Morgellons was a variant of delusional parasitosis, a well-described psychiatric condition.

As Morgellons became more contested, the CDC, at the behest of some members of Congress, got involved. The CDC chose a middle ground in nomenclature - calling the condition "unexplained dermopathy," and partnered with Kaiser Permanente to enroll and study patients suffering from "symptoms including crawling, biting and stinging sensations; granules, threads or black specklike materials on or beneath the skin; and/or skin lesions."

And so here we are, several years later, waiting for the results and a peer-reviewed publication.

The CDC website states that data collection for the study -- (which included skin samples from affected patients) is complete and under review by an expert panel. A press officer at the CDC confirmed this status; an inquiry to the Morgellons Research Foundation was not answered.

Whatever the CDC reports, the Morgellons story illuminates two distinct points. First, patients' symptoms should always be taken seriously and symptomatic treatment offered if available.

In the case of Morgellons-type symptoms, this means a thorough exam to look for an explanation and recommendations to alleviate symptoms such as hydrocolloid dressings, low-dose steroid creams and anti-itching medications.

Second, the medicalization of the human condition contributes to the development of contested illnesses and this is not healthy.

Is Morgellons the medicalization of a psychiatric condition or is it an unexplained illness? We don't know. But while it is clear that those with an "unexplained dermopathy" do not feel well, it is also very unclear whether modern medicine is capable of a definitive solution to their problem.

Whatever the answer to the mystery of Morgellons, ---
the dynamics that have made it a contested illness are not going away.

I have a feeling that those dynamics will be bugging us for some time.

Dr. Dustin W. Ballard is an emergency physician at Kaiser Permanente San Rafael and the author of "The Bullet's Yaw: Reflections on Violence, Healing and an Unforgettable Stranger." His Medically Clear column appears every other Monday.


THE END

[jonsi]

Thank you kmar!

This letter is a brief but good summary of what we have been facing. I think it is good read, especially for the newbies to this site.

itwl,
~jonsi

[Bustercat]

The Lord knows I make excuses every day, for my procrastinations, responsibilitys, and general ego fits of self importance. The bus has run over these people with morgellons and the doctors ask is it real? The bodys are stacking up, the stuff has become more invasive, while the people who are in the know, scratch their beards, pick their nose, in awe, is it real? Morgellon female victims have lipstick thats full of disease, and they still wonder, wonder, who?

Wake up California, it use to be you were not so afraid, to take social risks and bally who,from your peers. The medical coummity is on a slow boat to China. Mabey they should start there with the geno-nano-mutations, that will unravell into mutant zombies like Hollywood puts.

Publish the pathology pictures, of those who have died. Hollywood cant even reach the expertise of the fungal infestation in the horror show. Tear apart a tube of lipstick of a morgellons person, its mind boggleing. Scratch, its a wonder that they dont cut their heads off, now thats in need of a shrink.

Thanks for the post, also the doctor, who I am sure was quaking in his boots about his approval rating among his budy's.

[jpdonnelly@iprimus.com.au]

Yes thank you and thanks to the Doctor who has been big and humane enought to admit he was sooooo incredibly wrong, how many other negligent Drs do you think will come forward, to redeem themselves from their sadistic, torturous and life threatening (and taking) behaviour to so many of us.

God bless

Jodie

[belle9]

There are very few doctors who are brave enough to come out and say that there may be something to this disease. Money should not be the bottom line of the medical profession. Morgellons is not a quick fix, so a doctor who sees a patient every 15 minutes to make a lot of money cannot treat this. I do wish the CDC would s*&^ or get off the pot. It may be time to write our Congress persons again.

[sojii]

15 minutes is a leisurely visit. A lot of doctors are limited to 7 minutes by managed care companies. We can thank our HMO's and group insurors for that. And if a nurse practitioner can do it instead, you may not see the doctor. Doctors have to produce like rabbits to keep their managed care contracts.