My ID provider told me that if after 4 months of the big 3 plus AriKayce and still testing positive for MAC, it would be considered a fail and at that point we would d/c all and go back to all the that I was doing before starting Big 3 & AriKayce.
I began week 12 today. This past Saturday I woke up feeling not good but great! I had been so sick for 10 weeks and was so exhausted and determined to stop all treatment and roll the dice. I spoke to my family physician and to ID about all of the “Serious but common” side effects that I was experiencing. They told me to hang in there but I honestly thought I was dying and that nobody was hearing me and my concerns. It took me saying “I quit” before I got my IDs attention and an apology. What it all comes down to is that you have to be your own best advocate even if you don’t feel up to it. No one person knows you better than you know yourself, so it comes down to you being your own subject matter expert and making sure your concerns are heard and addressed.