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 have not posted much in different forums I belong to I am more of a background reader but guess I need to vent a little. My history is I was diagnosed almost 16 years ago with CVID been on treatment since. I have had multiple surgeries over the years and this year has been extremly difficult for me as I just had lung biopsies taken and still no clear direction for me. I have been running a fever off/on with terrible fatigue since June and my bloodwork looks off but no one can seem to explain it both my WBC and RBC are below normal with high lucocytes and lymp. Hence my PCP decided to update a CT scan hoping to find pnemonia to explain fever/fatigue and what he found were 17 lung nodules that were not there in my last CT scan 3 years ago. So referral to pumlmo dr. Pulmo dr decided to do biopsies biopsies were negative for cancer but lung washing had extreme high levels of white blood cells in my lungs. This confuses me as in my blood my WBC is below normal. So recommendation is repeat CT scan in 4 weeks (about 2 now) and if nodules grow then they will rebiopsy until it can be determined what the cause is. I am grateful it is not lung cancer but still does not help that I cannot kick this fever/fatigue and just want to learn to adapt to my new normal. The CT Scan also showed several enlarged lympnodes with an AP window conglomerate measure 11cm so normal in the ap window is 1.5cm. I am unsure of where to go next and guess it is just to learn to suck it up and deal with it. Thanks for letting me vent.
Shannon
Shannon
There are a few different lung diseases causing granulomas we can get. I did have a fine needle biopsy in my town and my pulmo here said "its granulomas pneumonitis, no big deal, get out of town for a few weeks and you'll be fine". Well he was wrong. Went to National Jewish (recommended by my experienced immunologist who thought it was a form of interstitial lung disease, my insurance approved) and they reviewed the biopsy and said it was Granulomatous Lymphocytic Interstitial Lung Disease. They did the steroids which I knew wouldn't work. The nodules went away and then came back. When they said "oh now we wait and see" I went elsewhere because I wasn't about to lose my job. I went to a doc in Wisconsin who treats many of us and even published a paper on it. But he needed an open lung biopsy before agreeing to treat me and unfortunately mine were not in the right place to get a good sample...so I wait (that was in January)...luckily mine seem to have stabilized so i'm still working.
My suggestion is to see an experienced immunologist who treats a large population of us and see what he recommends, look at the biopsy results with your own two eyes. It will tell you what the nodules are made up of (scar tissue, or mine said something like "resembling granulomatous lung disease or something like that). My guy was cocky and an idiot and had I listened? Well who knows.