A friend spoke to her immunologist recently and took notes on his explanation of how CVID affects our bodies. Note that "He" refers to the immunologist, and "I" refers to my friend. Here is what she relayed to me:
"I asked him specifically if he could tell me what cells we do and do not make as CVID patients. I explained that I had seen my rheumatologist and that it was blatant that I had both inflammatory arthritis and osteo and that the inflammatory was spreading but that it did not fit any of the typical rheumatoid patterns.
He said that we cannot be diagnosed for things like Irritable Bowel Disease (IBD)--any kind--or Rheumatiod Arthritis (RA) or lupus on the basis of regular blood work. If *any* factors show up, it should be seen as a red flag.
He said that the co-factor I produced for lupus indicated strongly that I had lupus. He said that it sounded as if I had RA, and he said that when symptoms present themselves of an auto-immune or infectious nature, our doctors need to jump on them immediately because of the way that we heal--we are impaired in our capacity to heal.
He said that when we have any auto-immune symptoms, we need to see if there is any damage in the body, and if so, simply assume that is the way the disease is presenting itself--and the damage may not be typical, either.
HE said our doctors need to be creative and fearless.
Then I explained that I was having trouble with both my Gastro-Intestinal (GI) doc and rheumatology doc, not because there was a personality conflict but that I did not fit within any box. HE said that I fit within the CVID box, and that most of us have gut issues and auto-immune issues that will not completely fit their criteria for treatment.
I asked him to speak to my doctors and he said that protocol required that they call him first.
He said that we do not produce decent antibodies, and that the antibodies I produced to the prneumonia vaccine were defective. So we can produce things and they will not work--and we can simply not produce things.
And IgG replacement itself means that our blood work will be skewed--we could simply be reporting antibodies from our donors."
