Archive for February, 2007

How you feel when you find out

From a CVID forum

I couldn’t have said it better myself.

February 28, 2007 at 3:58 pm 2 comments

Definition

id·i·o·path [id-ee-uh-path]:

1. n. One who suffers from symptoms of an unknown cause or origin.

2. n. One’s unique journey to explain symptoms for which no cause or origin has been determined.

February 19, 2007 at 9:25 am Leave a comment

What the hell do I have now…

“… it’s quite rare, actually. It’s a condition that affects only about one in 50,000 people in the United States.” I was dizzy, trying to focus on my bloated midday email in-box, putting the finishing touches on a PowerPoint presentation, stuffing forkfuls of chow mein into my mouth and listening to my allergist suddenly inform me that I was afflicted with an incurable syndrome. “It’s called Common Variable Immunodeficiency(CVID). Basically, your body doesn’t produce immunoglobulin…at all.” I was stunned; I had weaseled my way into one of the top allergy clinics on the West Coast two weeks earlier because I had been having recurrent unexplainable hives . I thought I was allergic to shellfish or grapes or maybe dreaded sulfites. I wanted to get one of those magic skin tests where they prick your back about a thousand times and watch welts appear. “You have hypersensitivities to day boat scallops, red snapper and white zinfandel,” I expected her to say. Instead, she calmly, clinically informed me that it was actually impossible for me to have a true allergic reaction because I didn’t produce the necessary antibodies to begin histamine release. Instead of giving me prescriptions for some really great antihistamines and telling me to stay away from tree nuts and dairy, my doctor was giving me the news that I was born without half of my immune system.

It’s hard to describe how I felt, as my specialist listed the common symptoms and the diseases associated with CVID. I was somewhat relieved; finally, I had an explanation for almost every serious illness I had ever had, recurrent herpes, shingle, bacterial and mycoplasma pneumonia, chronic bronchitis, sinusitis, chronic irritable bowels, and swollen nodes in my neck. It was a nice, neat, objective, empirical diagnosis rubber stamped by the medical profession, it was a wrapper I could tie around the past 42 unhealthy years of my life and call my own. I felt a certain sense of serenity.  I was also freaked out. Was this a death sentence? Did I need to “get my affairs in order?” Did I need to take some sort of energy-sapping drug cocktail? Or was I destined to become a bubble man, living in a hermetically sealed environment the rest of my life?

And there was another nagging question, “why the hell do I have these hives?!” I mean, if I can’t be allergic to anything then why am I experiencing this insanely itchy rash over my entire body?

“It could be any number of things.” Ironically, according to my doctor, people with CVID also tend to have autoimmune disorders. The body actually attacks its own tissue. Or it could be some sort of pseudo-allergen that I have become sensitive to, like sulfites or MSG.

“We don’t really know; we will have to do some more investigating. Right now, you have what we call Chronic Idiopathic Urticaria.  Basically, this means I have unexplained hives. Thanks for the insightful diagnosis doc.

And thus begins my journey; I have been diagnosed with CVID for just over four weeks. I have had chronic, unrelenting hives over most of my body almost all the time for four months. I take every possible over the counter allergy medication at several times their recommended dosages. I itch like crazy, always. My pregnant wife, the saint that she is, cares for me the best that she can at four in the morning with my eyelids puffed almost completely shut and my incessant scratching shaking the bed for hours at a time. There may be answers out there but no one has them right now and no one cares about this as much as I do. I am my primary caregiver; I search day and night on the Internet, call my doctors and friends to solicit feedback about half-baked medical theories and to discuss obscure immunology studies. I live this, I dream this, I am obsessed.

But it’s the journey that my wife says is therapeutic and I think she is getting sick of my chronic worrying. If I didn’t keep searching for answers, I think I would go insane. So I will continue to look, no matter how long it takes, until I find some peace…

The Idiopath abides.

February 19, 2007 at 4:37 am 5 comments


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