Alternative Medicine and Anaphylaxis Don’t Mix

Yesterday The Guardian ran a piece about actor Gerard Butler, who needed emergency room care for anaphylaxis after an injection of bee venom. Bee venom is used as an alternative medicine therapy in some circles. Butler found out afterward that he had reacted after getting about ten times the normal dose so he returned for a second injection and needed emergency care a second time.

Kudos to Jeff Goldblum for the comment, “I’ve done some cockamamie things in my time but that is crazy, I think we should trust science.”

Dermatologist Jeannette Graf uses more measured tones: “The science isn’t really there yet.”

In one sense this surprises me; in another it doesn’t. The alternative medicine world does not have a great track record of rational risk-benefit assessment when it comes to anaphylaxis. No, that’s putting it too mildly. They tend to be ignorant, overconfident, and unprepared.

I write this as someone who has lived with anaphylaxis for thirty years.

The general public often lumps anaphylaxis together with alternative health fads. I happen to have an anaphylactic case of Oral Allergy Syndrome. Most cases of OAS are mild, a few are life threatening, and I drew the short straw.

So let’s follow Goldblum and Graf’s advice and take a quick detour for the science. OAS belongs to a subclass of allergies known as heat labile: the proteins that cause OAS reactions denature under normal cooking temperatures. Some food allergies are heat labile, others aren’t, and the subtopic is complex. If a given allergy is heat labile, an allergic person might be able to eat the cooked version if their allergy is mild enough or if the food is cooked enough. For an anaphylactic case like mine that also requires a host of other precautions against cross-contamination with the raw version of the food. OAS anaphylaxis turns ordinary fruits and vegetables into deadly poisons; it’s the same underlying biochemical mechanism as an allergy to bee stings.

If your eyes are glazing over from that, here’s the bottom line: I don’t eat any raw fruits or vegetables unless I prepare them at home — otherwise I could need an ambulance to an ER just like Gerard Butler after his bee venom.

This puts a dent in one’s dining habits: the last time I dared eat a restaurant salad was 1994.

So…what do you suppose a new friend with a penchant for health trends tries to advise? The raw foods diet!

facepalm

A week later, what do you suppose the algorithm at a major social media site recommends? Here’s the screen shot:

Facebook, are you trying to kill me?

So if you’re wondering at Gerard Butler and thinking unflattering things about him, bear in mind that people who live with anaphylaxis are inundated with similar nonsense. Even when Butler accepted a second bee venom treatment he was newly diagnosed and apparently hadn’t been fully briefed on how anaphylaxis works. Obviously the whole thing was a bad idea. Less obviously, there’s an industry filled with people who think natural = good and who lack the training to recognize the contraindications or to respond to the adverse reactions.

Most of the people who live with anaphylaxis steer clear of alternative medicine and health fads. And if we don’t do that at first, we soon learn to.

So let’s take a little of Jeff Goldblum’s vigor and direct it at the dispensers of reckless advice:

You out there, you know who you are: you’re into aromatherapy and you’ve dabbled with low carb diets. I have a deadly immune disorder. One of these things is not like the other. Don’t even try to dish out dietary advice unless you show me your up to date CPR certification card because you may need it; anaphylaxis can cause heart failure. Are you prepared to back up your confidence by covering the cost of a new set of epinephrine auto-injectors and an insurance copayment? It’s a plus if you have experience performing an emergency tracheotomy. Otherwise keep your mouth shut.