About

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.

 I’m a 42 year old high tech worker who lives in the Northern California, no one special, no one in particular. I do have a very unusual problem…

“… 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 mycoplama 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 hive 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.

13 Comments Add your own

  • 1. Shawne  |  January 20, 2008 at 12:48 pm

    Just wanted to say hello. I was on the IPOPI forum and came across the link to your blog. I’m 45, I was diagnosed with hypogammaglobulinemia (low IgG – all 4 subs, everything else was okay) in April, 2006. I had a recurrent rash for for the last couple of years prior to diagnosis. My immunologist thought it was a reaction to an infection. It went away about six months after I started IVIG, coincidentally around the same time my dentist found and pulled a tooth that turned out to have some major infection under it.

    I now use Gamunex subq and I love it. I have heard that men have more trouble than women with subq, though – less fat to work with. It does give you more freedom, and keeps the levels in your system more stable – none of the peaks and valleys of IVIG.

    Reply
  • 2. liz  |  May 21, 2008 at 10:27 am

    I’m sitting here in hospital receiving IGIV and came across your post. I don’t know what I have – although I’m sure it’s related to the IgG levels – but I have had chronic urticaria, angeodema, uveitis & pernicious anemia for over 20 years. I got my first IVIG immunoglobin treatment last April. It worked for about 8 months – (despite me getting aspetic menigitis as an immediate reaction). But 8 months of no symptons was worth it and now I’m back. Do you still have symptons? What treatment have you received?
    Liz

    Reply
  • 3. Susan  |  June 19, 2008 at 11:45 am

    Hi, I found your blog, and wanted to say, I have just been diagnosed CVID and have had two IVIG infusions. I am not “stable” as my numbers are still low. I am 38, took me ten years to get someone to listen. Just moved to Pittsburgh in the last year, moved from Colorado, and have a wonderful almost three year old. Life is good except getting constant sinus infections, etc. I too have suffered with ailments my entire life, and mainly just found myself tired. Hope you are doing well, and the move to New York has been good for you.

    Reply
  • 4. Elizabeth Hughes  |  August 3, 2008 at 10:51 am

    Hi! I, too have been diagnosed (Spring 2008) with CVID with IgA deficiency. After 7 years of spleen pain, swollen glands, recurrent sinus/bladder/kidney infections and now a rash on my arms and legs, a doctor finally listened and had me do a bunch more tests (PET scan, CT scan, bone marrow biopsy and LOTS of blood tests). After finally being sent to an immunologist, I just had my first IVIG in July, and getting my 2nd one tomorrow.

    First infusion was a little rough,… pretty severe reaction with muscle spasms, chillls and shaking and racing heart during infusion. It slowed down once they stopped and then restarted. Doctor told me later it was “normal”!! YIKES!

    I live in Salem, Oregon, but symptoms first appeared while living in Northern California (not that I think location is related). I’d REALLY like to get connected to others with this “disease”. My immunologist told me I am his ONLY patient with CVID and he thinks between he and his partner there are only about a dozen of us in all Portland Metro area!

    Please write me back! I want to learn more from other folks who have this!!
    Elizabeth 😉
    mandehughes@yahoo.com

    Reply
  • 5. Jay  |  October 15, 2008 at 7:48 pm

    While doing some research on CVID, I came across your site. Thought it never feels good to say this, it is nice knowing I am not the only one with these issues.

    Best of luck with your infusions and career changes. Pray health care in the US becomes more affordable or better suited for those with a condition such as this.

    Reply
  • 6. Kristen Anstett  |  November 6, 2008 at 12:12 pm

    Hi there,

    I live in NY and have Chronic Idiopathic Urticaria. I have been to a few different doctors and they all give me the same story…”we may never find the cause”. I have had them my whole life and I am 37. They aren’t horrible but they aren’t great either so I have learned to just deal with them. Do you know of any doctors in NY that are Urticaria specialists? I have been looking for one…or a few…and haven’t had much luck. Thanks for any help you can give me. I wish you the best of luck on your journey….

    Kristen Anstett
    kristenanstett@msn.com

    Reply
  • 7. Melanie Mendez  |  December 15, 2008 at 3:48 pm

    I too suffer from chronic hives. Mine became so severe I was hospitalized and kept sedated for 3 days. I have been suffering since May 2007. I have seen every doctor you can imagine. I finally went to an internal medicine doctor who saved my life. Up until I went to him I had been given every med you can think of. Including Valume. Nothing worked.This new doctor put me on PROZAC! I have been hive free since. I see him once a year just for a check up and to renew my precription.

    Reply
  • 8. donna  |  April 8, 2009 at 6:43 am

    My son has been recently diagnosed with cvid. He has insurance but will need to pay $3200 a month out of pocket. What do people do that can’t afford the treatments?

    Reply
  • 9. tnk  |  April 20, 2009 at 7:41 pm

    Hi,
    I was diagnosed with CVID when I was 19, at the same time my younger sister was also diagnosed, about 7 years ago and have been on IVIG treatments on and off for years. When I was getting them regularly I ended up having to get a port and now after moving over seas and kinda just pretending that I’m not sick I’m back in the states and just started getting tested for splenomegaly and all sorts of related autoimmune fun……. I just wanted to say congrats on moving towards your dream city and keeping trying. I’m trying to do the same, starting my PhD in the fall but the new blob in my stomach is not really pepping me up. Nice to know I’m not a freak case and that maybe it will actually all be ok. Hope you’re still hanging on out there and good luck with everything.

    Reply
  • 10. Polly Jones  |  August 11, 2009 at 9:06 pm

    I also have CVID…I am looking forward to reading your past entries but am curious if you intend to start blogging again…?

    Reply
  • 11. Sara  |  February 19, 2010 at 7:24 am

    Hey!

    I represent a client that has a child diagnosed with CVID. Her music is featured in this video:

    I just thought you would appreciate it and enjoy this video. Thanks!

    Reply
  • 12. Ipopi forums | KiberMed  |  December 31, 2010 at 6:14 am

    […] About « The IdiopathI was on the IPOPI forum and came across the link to your blog. I'm 45, I was diagnosed with hypogammaglobulinemia (low IgG – all 4 subs, everything else … […]

    Reply
  • 13. Ann Walton  |  June 5, 2012 at 12:45 pm

    I’m looking for the doctors in the Portland area that prescribe IgG for CVID.
    Any help out there?

    Reply

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