I saw my new allergist yesterday to go over the (literally 30+ tubes of) blood work we had done after the first visit. I was completely surprised to find out that I also have condition called Common Variable Immunodeficiency (CVID).
CVID is one of the most frequently diagnosed primary immunodeficiencies (hence it’s relatively “common” as far as primary immunodeficiencies go), especially in adults, even though it occurs in only about 1:25,000 people. The condition is characterized by low levels of antibodies and immunoglobulins - components of the immune system that help fight infection. While thought to be genetic, the exact cause is unknown in most cases. You are born with the condition and it’s not acquired (unlike HIV/AIDS, for example, which you get) Symptoms can show up when you are a kid or later as an adult, and each patient can look very different - why it’s variable. It can also cause problems all over the body, and 25% of people with CVID have an autoimmune condition as well.
For me I had recurrent ear infections as a kid as and would also get strep throat a few times a year, at one point monthly for a short stretch. I have also had swollen lymph nodes with no real cause determined. CVID is likely the reason for both of those, and may also be contributing to my intestinal issues and fatigue. Hopefully these will improve at least a little with treatment.
The specific treatment for the condition is with IV immunoglobulin (IVIg). Basically they take blood from a large number of people, mix it together, and remove just the immune components (IgG). These are then transfused into the patient to replace some of the ones they are deficient in. The blood work will help us select the right IVIg to replace what I need. Unfortunately the immunoglobulin only last so long, so I will need to get an infusion around once a month for the rest of my life. At least I can do it at home. Replacement of some of the missing components lessens the condition, so the right IVIg should help and leave me feeling better. I’m sad about having another diagnosis (that I didn’t even expect) but at least this one has a treatment. The adventure continues!