Saturday, June 27, 2009

What It Is and What It May Be

What it is, it still is, and that's Myalgic Encephalomyelitis. That's not some fancy long word to describe my illness, or a label with which doctors are trying to enslave me. If only the doctors would all accept that label!

Unfortunately the US CDC miscategorizes this illness as CFS. The WHO knows it as ME. US doctors are a bitch about accepting the WHO term, but here's info that makes it all clear:

The Australian treatment protocol: http://uk.geocities.com/me_not_cfs/myalgic-encephalomyelitis-chronic-fatigue-syndrome-guidelines.html

The Canadian description: http://uk.geocities.com/me_not_cfs/ME-CFS-canada-protocol.html

This is the stuff I need to get to my doctors and my kid's doctors. Meanwhile, we get a lot of bad advice and mistreatment from the medical establishment with their well-meaning but misguided approach to "CFS."

That said, whatever else I may or may not be able to eat, it looks like I might have to eat my words, or at least the ones that say "it's not gluten." Upon reintroducing gluten to my diet I immediately became ill in ways you would rather I didn't describe, but for the sake of any other ME/possible celiac sufferers in the audience I'll tell you anyhow: severe stomach cramps and diarrhea.

It turns out this is a predictable reaction if you have gluten intolerance (celiac disease) and you accidentally eat gluten.

It also turns out that you have to be including wheat in your diet when you take the blood test for celiac disease, or the results may be thrown off. So now the plan is, I'll either continue eating wheat and retake the blood test, perhaps get an endoscopy to check for healthy cilla in my intestinal tissue, or else do both.

Anyone concerned about celiac disease can find excellent information at the Mayo Clinic's site: http://www.mayoclinic.com/health/celiac-disease/DS00319

But here's the thing: I might have celiac disease, and if so I'll go off gluten again and my cilla will regrow within three years max, but that doesn't take away the ME, alas. That's just another, aggravating condition on top of the ME. So we still can't say, "Maybe it's gluten," or, "what you've got could be candida." We can only say that the ME may be aggravated by the additional presence of other illnesses.

And that's all I was trying to say in my last installment, "What It Isn't." I was trying to ask people not to try to explain away what I've got, as something else. It's like telling a cancer patient who has a cold that once they get rid of that post-nasal drip they'll be all well. Certainly she'll feel more well and better able to cope with cancer when she hasn't got a cold, and I imagine I will feel more well and better able to cope with ME if I'm able to eliminate any other aggravating conditions.

Finally, again, this is the Western view of things, and indeed, a Chinese herbalist may be able to successfully treat me with a thoroughly different set of diagnostic terms. I'm looking forward to an opportunity to try that out, some day. Meanwhile I do have acupuncture to help support my system and reduce my symptoms, praise be.

My hope is to be embraced by both Western and Eastern systems and above all by my friends and family, as I continue to cope with and counter this condition, whatever it is and may be. Call it what you will, the upshot is that I'm taking in every bit of advice I can, acting on as much of it as is humanly possible, and doing so in the face of physical pain, cognitive impairment, generally good humor, but also occasional lapses into despair from which I need you, my loved ones, to drag me back whole. Hang on tight, please, and don't let go.

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