Common Variable Imm.Def?

Sonia Vohnout vohnout at wormhole.mmsi.com
Fri Sep 15 12:24:14 EST 1995


Thomas Hastings (Bummer at cris.com) wrote:
: A relative of mine has been diagnosed with <quoted from phone 
: conversation> "Common Variable Immune Deficiency". The condition was 
: preceded by several years of susceptibility to infections, particularly 
: of the respiratory tract, and migraine headaches (though it is unclear to 
: me if the headaches are thought to be related to the deficiency). 
: Laboratory results, I am told, indicated lowered levels of several of the 
: immunoglobulins, and either lowered numbers or lowered activity (I'm 
: getting this second-hand, remember) of the t-cell population.

Thomas:

I have Common Variable Immune Deficiency (CVID).  I have been diagnosed since
1991.  I did not get many problems and lived fine without gammaglobulin
infussions until last year.  Now I get infussions once a month and have
chronic sinusitis.  I have had sinus surgery once, and it looks like I might
need it again.  I haven't been able to be without antibiotics for more then
2-3 weeks in the last year and a half.  

I am deficient in IgG (230), have no IgA, and few IgM.  I am 31 years old.
That is why I suffer from so many sinus infections and bronchitis.  I haven't
had pneumonia yet!!  And I don't have lung damage, but I do cough alot every
morning.  Everyone knows when I arrive at work!

: The internal medicine person reports seeing only 2-4 of these per year.

CVID is not that common.  IgA deficiency is.

: Could anyone add some information to what little I have now?

Several things are working for me.  I am having difficulties coping with
accepting my deficiency, living with infections and surgeries.  I have found
that the following helps me face the problems:

1.  Education:  find out the most you can about the illness.  Contact the
                Immune Deficiency Foundation in Maryland.  They will send you
		all the information, books, publications and newsletter you
		need.  Their phone number is:  410-321-6647.  They have also
		provided me with names of people for support.
2.  Talking with other patients.  Since I posted news in this newsgroup, I have
    already contacted 5 patients with the same illness or simular problems.
    Just talking about it and exchanging ideas, recipes, and coping skills
    has help me more then anything.  I have also gotten many papers on the
    illness.
3.  Exercise:   helps me release some of my fears, anger and anxienties (stress)
4.  Diet:       reduce caffeine, increase fibers, yogurts (for intestinal
                flora), minimal junk food and minimal alcohol
5.  Look at the good things life has offered you.  I have 2 beautiful children
    and a supportive husband and family.  They also suffer and you all have
    to work in making it.  In other words, a positive outlook is "very" 
    important.  Like someone once told me:  Have Fun!!

: Thanks, Tom Hastings
: bummer at cris.com 

I am going through rough times now.  I have heard the sometimes you go through
periods of lots of illness and some periods of being very healthy.  I hope
I will soon get healthier.  I still don't take care of myself as much as I 
should (I want to live as normal as possible), so I expose myself to viruses
(my sons preschool), I travel a lot (Mexico and other countries), and go out
for dinner as often as I can (this is sometimes hard on the digestive system).
One of the problems with patients with CVID is malabsorption.  I get sick
very often.  Don't ask me why, but Cat's Claw (from Peru) has helped me with
my GI track quite a bit.  With so much antibiotic, you need to eat lots of
yogurt.

If there is anything I can do to help, please let me know.  Send me e-mail
or call.

Sonia Vohnout

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