William Wright - living with CVID
My name is William and I live in Wellington, New Zealand with my wife and two sons.
I was diagnosed with CVID in November 1997 at age 38 after suffering from chronic sinusitis problems for over 12 years. I was also diagnosed as having the early stages of bronchiectasis in my left lung.
I first started getting sinus problems about 1985 when I was in my mid-20's. These sinus infections at first occurred maybe once a year and a treatment with antibiotics from my GP would clear them up.
Gradually the sinus infections became worse and more frequent.
In early 1992 my family doctor sent me to an ENT surgeon. He prescribed more antibiotics plus nasal sprays, antihistamines etc. These had limited success.
Things got to the stage where the sinus infections were severe and I often had sinus pain and headaches. The antibiotics etc weren't helping. Later that year the ENT surgeon operated on my sinuses to remove polyps and improve drainage.
Things were better after the surgery, I no longer had facial pain and headaches but the infections still continued.
In 1995 further sinus surgery was required.
Things were still not 100% though. I now sometimes had a chesty cough and was coughing up green & yellow mucus most mornings. Things were OK when I was on the antibiotics but once I stopped taking them the infection came back within a week or so.
Over the years prior to diagnosis I received the following treatments from my Doctor and the ENT surgeon.
antibiotics (Augmentin, Tetracycline, Ceclor, Rulide, Klacid)
nasal sprays (Beconase, Livostin, Rhinocort, Otrivine)
antihistamines (Claratyne, Teldane)
inhalations (pine/menthol, eucalyptus/menthol)
In addition I started trying alternative treatments to find some relief including homoeopathic treatments and acupuncture. None of these helped.
In 1996 the ENT surgeon referred me to an allergist. He conducted numerous tests and came up with the theory that I was allergic to grain products (wheat, barley, oats etc). I eliminated these from my diet for over 12 months and still there was no improvement.
In November 1997 the ENT surgeon referred me to a respiratory specialist (because of the chesty cough). He ordered more tests including blood tests, CT scan of the lungs and lung function tests.
Within a week the respiratory specialist had determined from the blood tests that the IgA, IgG and IgM immunoglobulin levels in my blood were all virtually zero. This is why I was constantly suffering from sinus infections, my body didn't have the resources to fight it.
In December 1997 I started IVIG treatment. Every four weeks I have an intravenous dose of the gammaglobulin product 'Intragam' at the Wellington Hospital Oncology Day Care Unit.
After 15 months of treatment I now feel that I am getting some benefits from the IVIG. It took quite a while for the IVIG to 'kick in' but now I have been antibiotic free for the last 4 months. Hopefully I can continue that good record over the coming winter (which is already here going by the temperature outside today).