What the hell do I have now…

February 19, 2007 at 4:37 am 5 comments

“… 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.

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Entry filed under: Chronic Urticaria, Common Variable Immunodeficiency(CVID).

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5 Comments Add your own

  • 1. Diane Sistern  |  March 1, 2007 at 9:20 am

    Hi you seem to have had all the same problems as me before diagnosis, I am 41 but have been diagnosed with cvid for about 20 years, i had shingles at sixteen, Thrombocytopenia (low platelets ) at 19 diagnosed with cvid at 20 with all the complications you mention i saw your message on the pia web discussion forum where you were talking about your itching, by talking to others and by my family members who also have cvid it seems that this itching that drives us crazy is very common but seems to come second to the repeated infections that can be more life threatning, but it certainly does drive you mad the next post on the pia forum was talking about this and there was some helpful information on there, hope you get this problem resolved, and getting your immunoglobulins may help with the itching. Diane

    Reply
  • 2. Kiley Powell  |  September 15, 2007 at 5:38 am

    Hi –

    Just came across this website. I too am suffering from 4 months of hives and not a single doctor that can figure it out. I am really going insane. It seems to get worse every day. My upper lip is swollen today and the hives and just becoming burning red patches.

    I am on 180mb of Allegra during the day, 10mg of Zyrtec in the evening and Zantac 180 on top of that. I am also trying an Ultra Clear cleanse, cutting out wheat, dairy and sugar. I use everything free and clear – I have for years.

    I am really starting to get very depressed. It just seems like it will never go away and I am so scared that it is something much more serious. I have been to my primary physician, an allergist, a dermatologist and a homeopathic doctor. They all just keep telling me to take these drugs and wait. I hate to wish bad things on people but I wish they would try living with these things even for a week. Maybe they would be more attentive in helping me to find a solution.

    I know it’s not stress or hot/cold or pressure. In fact, all of these doctors have told me that it doesn’t seem to be environmental. Whatever it is in my system is making me sensitive to everything.

    Should I go see an immunologist? Has anyone had any recent success here? I am so desperate to get rid of this. I am really losing it.

    Reply
  • 3. Kathy King  |  October 11, 2007 at 12:38 am

    Thank God I am not CRAZY. I have CVID am 42 and have been itching for 2 months non stop. I thought I had bugs so I have poisoned myself 5 times now with scabie mite cream and my husband thinks I am crazy because I have made him do it twice. and we have washed everything in the house 3 times ( and we are very clean already!). Now I am breaking out in small blisters on my head on one side and round bumps on my neck……At least ow I will tell my immunologist. FYI…. I get SUBQ IVIG infusions every Monday and I have been getting my life back.

    Good Luck ALL

    KKing

    Reply
  • 4. Carol Carlsen  |  January 15, 2008 at 7:42 pm

    Kiley,
    I an a Nurse Practitioner. Yes, get to an immunologist or hemotologist and get tested for PIDD’s. I was just diagnosed last month and I am 50. . I have suffered not hives so much but Staph Impetigo for years. Just prior to my first IVIG infusion I broke out horribly all over my face with Strep Impetigo. With the Strep Impetigo you get little tiny blisters that both burn and itch and spread and bleed and leave scars. I have never seen anything clear so quickly on my face as that Strep did with the IVIG infusion. Go see an immunologist quickly.
    Carol

    Reply
  • 5. t bllski  |  June 18, 2012 at 3:46 pm

    I ahave urticaria (hives) with some kind of edema (swelling) in the colon, and eventually anaphylactic shock (subsiding with meds). Most severe episode involved my whole digestive tract. Benedryl, claritan, chlorpheniramine, and ranitadine (prescribed), all helped in various amounts/orders. Ranitadine the last one I have added. If I go into shock or stop breathing, I am to take an epi shot, I think my periods are kicking it off. So wierd…

    Reply

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