Growing a Thicker Skin

About four months ago, I blogged about a patient -- likely an "altie" -- who subtly but, I believe deliberately, insulted me about my conventional views of Lyme disease. Two days ago I noticed a spike in my traffic. It turns out that someone at HealingWell.com discovered that I do not believe that there is such a thing as chronic Lyme disease, and blogged about it indignantly.

Needless to say, that didn't sit too well with their community. Despite the fact that the Infectious Diseases Society of America has this to say about chronic Lyme disease or post-Lyme disease syndrome:

Following an episode of Lyme disease that is treated appropriately, some persons have a variety of subjective complaints (such as myalgia, arthralgia, or fatigue). Some of these patients have been classified as having “chronic Lyme disease” or “post-Lyme disease syndrome,” which are poorly defined entities. These patients appear to be a heterogeneous group. Although European patients rarely have been reported to have residual infection (or perhaps reinfection) with Borrelia burgdorferi, this has yet to be substantiated either in a large series of appropriately treated European patients or in a study of North American patients. Residual subjective symptoms that last weeks or months also may persist after other medical diseases (both infectious and non-infectious). It has also been recognized that the prevalence of fatigue and/or arthralgias in the general population is greater than 10%.

In areas of endemicity, coinfection with Borrelia microti or the Ehrlichia species that causes human granulocytic ehrlichiosis (HGE) may explain persistent symptoms for a small number of these patients. Randomized controlled studies of treatment of patients who remain unwell after standard courses of antibiotic therapy for Lyme disease are in progress. To date, there are no convincing published data showing that repeated or prolonged courses of either oral or intravenous antimicrobial therapy are effective for such patients. The consensus of the Infectious Diseases Society of America (IDSA) expert-panel members is that there is insufficient evidence to regard “chronic Lyme disease” as a separate diagnostic entity.

apparently a group of patients and or doctors decided that they didn't agree, and so they began an organization called the International Lyme and Associated Disease Society. It is a non-profit organization, with voting membership limited to:

those persons who have earned a recognized Doctorate degree (MD, DO, or PhD) and who have an interest in the care of patients with Lyme and associated diseases and/or are involved in research related to Lyme and associated diseases.

How does one become a Fellow of the Society?

The special status of Fellow of the Society shall be earned by those members who have:

1. Completed the in-depth workshop on the diagnosis and management of Lyme and associated diseases
2. Taken the examination prepared by the faculty of the workshop
3. Demonstrated acquisition of the most up-to-date scientific knowledge as related to the care of patients with Lyme and associated diseases.

A certificate of accomplishment shall be given to members having achieved the special status of Fellow. To maintain the status of Fellow, the in-depth workshop and examination must be taken every two years.

Seems kind of circular. Furthermore, the ILADS Treatment Guidelines include things like this:

New Chronic Lyme Disease Presentations

A detailed history may be helpful for suggesting a diagnosis of chronic Lyme disease. Headache, stiff neck, sleep disturbance, and problems with memory and concentration are findings frequently associated with neurologic Lyme disease. Other clues to Lyme disease have been identified, although these have not been consistently present in each patient: numbness and tingling, muscle twitching, photosensitivity, hyperacusis, tinnitus, lightheadedness, and depression.

Most patients diagnosed with chronic Lyme disease have an indolent onset and variable course. Neurologic and rheumatologic symptoms are characteristic, and increased severity of symptoms on wakening is common. Neuropsychiatric symptoms alone are more often seen in chronic than acute Lyme disease. Although many studies have found that such clinical features are often not unique to Lyme disease, the striking association of musculoskeletal and neuropsychiatric symptoms, the variability of these symptoms, and their recurrent nature may support a diagnosis of the disease.

And this:

Physical findings are nonspecific and often normal, but arthritis, meningitis, and Bell’s palsy may sometimes be noted. Available data suggest that objective evidence alone is inadequate to make treatment decisions, because a significant number of chronic Lyme disease cases may occur in symptomatic patients without objective features on examination or confirmatory laboratory testing.

Factors other than physical findings, such as a history of potential exposure, known tick bites, rashes, or symptoms consistent with the typical multisystem presentation of Lyme disease, must also be considered in determining whether an individual patient is a candidate for antibiotic therapy.

And this:

Seronegative Lyme Disease

A patient who has tested seronegative may have a clinical presentation consistent with Lyme disease, especially if there is no evidence to indicate another illness.

Although many individuals do not have confirmatory serologic tests, surveillance studies show that these patients may have a similar risk of developing persistent, recurrent, and refractory Lyme disease compared with the seropositive population.

So basically, if a specially trained Lyme doctor (training available only from other doctors with the same training) says you have Lyme, that's all it takes to make a diagnosis. I wonder whether some of these folks would be diagnosed with "heavy metal toxicity" if they happened to consult one of the mercury-poisoning adherents instead of an "LLMD." Careful reading of the ILADS site reveals many other features consistent with Orac's definition of "Altie." (Edited: check out the definition of a fad diagnosis at Quackwatch.)

None of which, frankly, is my point. They -- the chronic Lyme community at HealingWell, ILADS and elsewhere -- are not going to change my mind, and I'm not going to change theirs. I accept that.

What surprised me wasn't so much the name calling ("moron"; "bully"; "turd"; "tool"; "A-hole"; "stupids" [sic]; "coward"; "Dr. Stone Age"; "Dr DinoSOUR"; "angry ugly old man") but how much it hurt.

I know. It's just the internet. I'm anonymous. They're anonymous. It's only words on a screen. What's to be hurt about? Chill. Why should I give a moment's thought -- much less get all mopey for an evening -- over comments by people who not only don't know me, but haven't bothered to read more than one post on my blog (and somehow succeed in taking that out of context, too.)

Here's why: I refuse to brush them off as "crazies", "alties", "nut-jobs" and so on. That kind of labelling is what allows us to de-humanize people, objectify them, and render their words "not worth getting upset about;" ie, not paying attention to. Even though I know I will never meet them face to face, I remain acutely aware that most of them have suffered -- often at the hands of my colleagues. It isn't rational, but I feel badly about that. I understand that many of them are too deeply invested in the idea that B.Burdorferi is the cause of their suffering to ever really hear what I'm saying, but that isn't as relevant as you might think. People are in pain, and I can't help them. They won't even accept my empathy, seeing it instead as condescending and insulting. That's what hurts.

So I did what I've learned to do when I feel badly about something I can't do anything about. I waited. I got a good night's sleep (at last.) As usual, things were better in the morning. They almost always are.