Thanks for this! I saw Dr. C-R when I was first diagnosed 11 years ago. She's really the best of the best! I find it really interesting that she doesn't find it necessary to do antibiotic rotation for lung disease. I wonder how she feels about antibiotic rotation for chronic sinus disease.

ooh awesome! thanks

Thanks Kelli, that's awesome! :)

@Ari: My immunologist also said he sees no need to rotate the antibiotics...he's friends with dr C-R though, and has a ton of respect for her. He told me he's had patients with some more severe form of PIDD who have taken the same antibiotic for 30 years. I hope he's right, as I tend to develop immunities to antibiotics.

Princess, that's really interesting! My main immuno is also friends with Dr. C-R, and she's always rotated antibiotics. For me, though, it seemed like I was always becoming resistant to them. But that's for sinus infections, so I don't know if that applies or not.

just a reminder you dont become immune to the anti bs the bugs do...

Excellent article, Kelli. Thanks for sharing.

good point, pconville!

Thanks Kelli.

Excellent information. I will be printing this out and carrying it with me all the time. You never know who or what doctor might need a little enlightenment.

You are becoming our record keeper..

Although Dr. CCR is one of the best and brightest of the PIDD researchers / practitioners in the world, she is one of the most rigid. If a patients does fit into her strict criteria for a CVID diagnosis she does not 'bend the rules." Although I haven't encountered it personally, I've been told her "bedside manor" 'all business."
But with all that said, she is without question one of the best and she has contributed a great deal of research to our illness.

I was invited to hear her give grand rounds at the Cleveland Clinic several years ago and she really was impressive. I've also heard her at every IDF National Conference.

Regarding antibiotic immunity, what I have always heard, is what someone already mentioned, the bugs become immune to it.
The mechanism is if we do not get a long enough / strong enough course of antibiotics some of the bugs will survive. The bugs that survive are the ones that were the least vulnerable to that antibiotic to begin with. Now when / if those bugs grow and reproduce that particular antibiotics will be even less effective to that strain of bugs the next time we uses it. It even happens if we catch a bug from someone else and already has the resistance to that particular antibiotic.
That is why it is important to finish all antibiotics and take them as directed.
It is also important that if you do not recover quickly from an infection, the physician should culture the organism to see exactly which antibiotic it is most vulnerable to.
That's another reason I believe we should all be seeing physicians who a EXPERTS in immunology, not a allergist who has probably had very little advanced training.
Sorry if i preach the same message every time.

Thanks for putting this on here. It prompted me to talk to my doctor last week about all the symptoms I've had over the past 20 years, and how a lot of them may be related to the CVID and not just separate unfortunate events. I told her that even though I had been diagnosed with sarcoidosis, that all of those same symptoms can be caused by the CVID. This was backed up by the expert immunologist I saw last year, so she asked me to sign a release to get his report. Since I am her only patient on IGG therapy, she was interested to find out more about that, too.

I feel like someone has finally put it all together for me after 20 years. I read this document and it is like reading my own history, I can find something in almost every section that relates to what I've been through. I am glad that I didn't always have the poor outcome that is most common! I also wonder if I should get in touch with this doctor to find out more. I am happy for now to have one doctor listen and be interested enough to look into it.

Kelli, thanks for posting . .every time I re-read it I get something new out of it

@ Melissa - so glad this helped you with your doc and putting things together :)

@ Mark - so glad you are getting info out of it !!