Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I just got my levels back from doc. Igg was 474, it has been 2 weeks since my last infusion. Would these levels be considered normal for two weeks out?
I have Fibro as well, and I can tell you, whenever a doc says something about 'feeling tired or drowsy', I snap and describe it this way: Ever feel the heat radiate off of a radiator? Travels away from its source to warm everything in the immediate area? The EXHAUSTION is kinda like that-I can feel it in my bones, radiating to my muscles and everywhere else in my body. It nearly feels crippling at times. Barb can tell you, I am not exaggerating.
I am still waiting to find out if my total protein levels have risen or not. Very nervous about that.
And to add a laugh....I was chatting with our landlord/neighbor today before heading out, and she commented, "You have to stop losing weight like this. It's not healthy for you." It took less than 1/4 of a second before we both bust up laughing-she knows about the cvid and fibro. She just hadn't seen me in about two weeks, and I still lost 3 pounds since then.
shoshi
> IgG and still have antibodies,
The term "antibodies" refer to the Y-shaped proteins that make up your "humoral" immune system. "Immunoglobulins" are a synonym for "antibodies".
Immunoglobulins have been divided into 4 types -- G, A, E, and M. The types {G,A,M} contribute to your body's ability to defend itself against invaders, while type E is usually triggered by allergic response.
Some people -- mostly of northern European descent -- have absolutely no IgA. (It's called "selective IgA deficiency".) It's actually quite common, and is believed to occur at a rate of about 1 in 500 or so. IgA has been found in the mucous linings. We don't have the ability to synthesize it or extract it from donated blood, nor do we know exactly how to inject it and get it into patients. So this is one example of someone who has no antibodies of a particular type, but may still have normal levels of other types.
That said, type A doesn't really appear to do all that much in the grand scheme of things. It's a deficiency in the 'G' type which CVID patients have, since G is closely associated with:
(1) 'tagging' invaders for destruction
(2) 'memory' from previous invasions (conferring protection in the future)
> and other people can have
> non-existent IgG and have NO antibodies? I have never been
> tested for a reaction to a vaccine. "
If the 'G' type of antibody is below an experimentally-observed threshold -- usually around 7 g/L (700 mg/dL), or 2 standard deviations below average levels -- those patients tend to get sick. i.e., Frequent pneumonias, brachiactisis, decreased life expectency (due to lung damage), increased cancer rates -- these are all symptoms of decreased 'G' antibody levels.
It is, indeed, very possible for someone to have no IgG. For medical purposes, if the G levels are 2 standard deviations below normal, they are "non-existent" for statistical purposes. Many CVID patients have trace levels of G (my last measurement was around 1.9 g/L , or 190 mg/dL), but this is hardly comforting, because it is believed that this level confers absolutely no protection. I have completely undetectable levels of A and M types. (I suspect that the latter has more to do with my European heritage.)
Kris
Sometimes forgotten, the additional necessary criteria for CVID
also include a proven lack of specific IgG antibody production,
which is usually demonstrated by lack of IgG responses (not
attaining laboratory-defined protective levels) to 2 or more protein
vaccines, such as tetanus or diphtheria toxoids, Hemophilus
conjugate, measles, mumps, and rubella vaccines, and also by a
lack of response to pneumococcal polysaccharide vaccines. Other
options for protein antigens include hepatitis A or B vaccines or
varicella, either after vaccination or disease exposure. Examining
blood for pertinent isohemagglutins is another a common means of
testing (mostly) IgM anticarbohydrate antibody production in older
children and adults.
Although extensive antibody testing is not as important for
subjects with very low serum IgG (potentially 150 mg/dL), those
with greater levels of serum IgG (450-600 mg/dL), and especially
those with only minimally reduced serum IgA, require more
extensive evaluation. It is more likely that these subjects have
preservation of IgG antibody production and are therefore less
likely to benefit from Ig therapy.
Ours is a mysterious disease isnt' it? I wish they would do more than a "highlight" of PIDD's in medical school :(
> and do research so we have something to back it up with,
As an aside ... I am (technically) a doctor -- just not a medical doctor. :) But point well-taken. I do a lot of research, and I hope that I can help by sharing what I've learned.
> most people are not diagnosed without the vaccine
> challenge so its odd your doctor didn't do it.
Another aside -- this isn't the case in Canada. The vaccine challenge was optional for me. (My immunologist was fine with accepting a history of measurements showing hypogammaglobulinemia -- but we still did a few humoral immune response tests, because it doesn't hurt to know completely.)
Kris
> insurance plans?
Can't ... tell ... if that's sarcasm. (My bad?)
Out of respect, I don't really want to get into a debate on the pros/cons of the Canadian healthcare system. But with respect to my CVID, I will pay $0 for tests and treatments for the rest of my life. And that seems pretty good to me. :)
BTW, I'm a pretty straight shooter so if I ever have an issue with anyone, I will address it respectfully ;)
But what I want to know is this. My results were this:
IgG: