Wow, do I ever relate to these posts. My pulmonary specialist initially diagnosed my CVID, but didn't have a clue beyond knowing it was there. He referred me initially to an infectious disease specialist, and I could tell she was in over her head pretty quickly - though she acted like she knew her stuff.

I had little confidence in her from the beginning, but like many of you, I searched my provider network and found absolutely nothing under immunologists - just allergy and immunology. (The doc who had previously treated my allergies and asthma showed up, and I knew he was not an "immunologist" in the sense I needed.)

After 6 months of weekly sub-q (and "normal" Igg levels), I was still getting frequent infections and cold sores, and her response to this was "Let's cut you back to monthly treatments, and I'll see you again in 3 months." This made me nervous, but she was the doc, so I went along with the idea, at first. Thank god, the pharmacist at Crescent knew more than I did and called me. She alerted me (reminded me, really) that this treatment is designed to be weekly, and said when my doc called they asked about this. She insisted that she'd successfully treated CVID treatments this way, and they asked her for documentation, since they'd never heard of doing sub-q monthly. My boyfriend is the one who suggested I ask Crescent if they could give me the names of docs who treated lots of CVID or who had lots of patients who used Vivaglobin, and they were amazing - I got a list of 5 or 6 docs that I never would've found otherwise. I searched them in my provider network by name, and like some of you mentioned, some of them showed up under pediatrics - I would never have known they were out there.

One of them was the doctor I just started seeing this week - Dr. Kari Nadeau at Stanford University. Yes, she's at the children's hospital there. And when they sent my initial paperwork, it was all addressed to "the mother of Frances Irwin." :) But she is amazing, and knows my condition inside out. She has already asked for an increase in my dose, and is starting me on antibiotic therapy. She is confident that we will reduce the amount of other meds I'm on (which are considerable), and that my quality of life will improve - and now that she's managing my disease, I have confidence too.

Don't be satisfied with sub-standard care. If your gut tells you your doc doesn't know what he's talking about, he probably doesn't. (I found out more on google than I think my previous doc knew.) We all have to be advocates for ourselves, because no one else is gonna do it for us. I thank god my old doc screwed up, because that's what motivated me to find someone else - it was a blessing in disguise, and I'm grateful for it. :)

I relate to your experience a lot, Fran...and all of these really. I was seeing an allergist/immunologist who diagnosed me, but she's of the mindset that there's no reason I couldn't get my infusions as fast as anyone else, and she also thought that my IgA could be replaced by having my treatments.

There was a combination of things that got me to switch to Dr Lewis at Stanford (same clinic as you too), I was really happy with my diagnosing doctor at first because she's generally a caring person and she seemed knowledgeable to me at first, but over time I started realizing I knew more about my disease than she did. The other huge factor is that Mark keeps saying that we need to see a true expert at least once a year. He told me about Dr. Lewis, so I made an appointment, and now I'm thankful that I did!

Dr Katherine Nelson is the fellow under Dr Lewis who I work with the most, and she's really sweet. In fact, she's the one who presented at the IDF patient meeting that you and I were both at on the 6th.

I am fortunate and thankful to be able to see them.

Thanks again, Mark :)

I