Jennifer,
I can really empathize with you. It is always so hard to decide how to treat this disease. And considering the variation of treatment by everyone on this site -- there's no one standard. Which makes it all maddening.
I can say I've tried lots of strategies when it comes to antibiotics. Taking them all the time. Taking them when probably needed. Or not taking them until I was at "death's door." But in the end, for me, the more antibiotics I took, the more resistant I became. And when I was taking Tobi as a prophylactic, I'd ask the doctor if I was robbing Peter to pay Paul and he said not to worry about it. Right...
Sure, I was warding off a possible illness in the present, but where would the antibiotic be when I needed it. I became resistant to almost everything.
For me, even with all the drugs, I was ending up on IV antibiotics more often. I knew I had to do something. I tried just about everything. But eventually what helped me...
I found a doctor who did not think antibiotics were always necessary. A doctor that thought that most of these exacerbations (I cultured pseudomonas, staph, etc.) were do to inflamation not just the bugs. Control the inflamation. Open the airways that trap the bugs. Treat the asthma component of CF. Stop the exacerbations. No more antibiotics constantly. And so --I began to be on antibiotics less and less.
I've been treating my CF like this for the past 11 years. Lyfestyle changes. Reducing inflamation. Controlling asthma. Instead of continual antibiotics, only occasional inhaled antibiotics and oral antibiotics. The last 2 years I've taken no antibiotics at all (I've also been the most compliant and added hypertonic saline and NAC and Tumeric).
The doctor slowly proved to me by treating inflamation and the asthma component ( most CFer's DO have asthma) -- with appropriate meds, me cleaning up the air around me, avoiding triggers, taking supplements -- that I would have fewer exacerbations. Cultures improved. CT scans improved. Antibiotic sensitivity returned. I stopped feelingl sick every day of my life, regained some of a steadily declining lung function, and returned to my old life and career which virtually disappeared. The more I did, the better I felt.
Am I perfect? No. So many years of lung damage. Will I ever be on IV meds again? Could certainly happen. But by not being on drugs all the time, at least I have them to use.
Do I get sick? If I expose myself to bad air -- Yes. I get an exacerbation within a day or two (which I now know is chemical bronchitis -- which can turn into an infection if I'm not dilligent with treatments that the doctor recommends) Recently, I stupidly knowingly exposed myself to a few things including smoke and coughed up blood for a week.
You may very well need IV antibiotics at this time. That's something for you and your doctors to decide. Certainly antibiotic saved my life on many occasions. For me, I am always concerned about keeping the bugs sensitive, so that when I need them, they will work for me.