I agree with you. After 6 months on Azithromycin and Ethambutol, I was reduced to a few stubborn colonies on culture with a negative smear. My doctor added Arikayce after the 6 month mark, and in less than 1 month, I cultured negative. So far negative for 5 months with no negative drug side effects.

At the time, rules were that you had to have been on standard treatment for 6 months before adding Arikayce. That has changed or will change to allowing Arikayce as a first line treatment along with the standard regimin (not alone). Then it is 18 months after sputum conversion.

The change in the rules will allow for earlier sputum conversion, so if you are offered the opportunity to add Arikayce and can tolerate it (I do 3 times weekly, and doctors will work with you on the frequency. It does not have to be every day), then try it.

This is a stubborn and resilient bug. Rest, good diet, and added supplements will help you fight it and withstand the treatment, but those measures are simply no match. The other necessary treatment is twice daily nebulizing with hypertonic saline (7% is best) along with an Aerobika or other device to help bring up the mucus. Many people have been able to keep from going on meds and keeping their numbers almost undetectable by simply doing daily, rigorous airway clearance and properly disinfecting equipment after each use.

The way I see it is that this bug damages the lungs, and the sooner it is eliminated, the less likely damage will continue. Then airway hygiene twice daily with sterilizing equipment and other measures to avoid or reduce reinfection is a proactive and easy way to keep healthy. Don’t be afraid of the meds. Many people have no problems with them. Those who experience some issues can work with their doctors to find meds they can tolerate. If you don’t have cavities, you will do a three day a week regimin. The earlier you treat, the less likely you are to develop cavities.

Don’t let treatment fear paralyze you. Be as proactive as you can be, under your individual circumstances. Get to a center of excellence or find a good team of doctors who will work with you, and do what is needed to eliminate this bug.

Before I began treatment, I felt that it was pointless to treat, if it was just going to end in later reinfection. Then I read so many accounts of people who, by continuing airway clearance, sterilizing equipment, and being sensibly cautious about re exposure, have been able to remain sputum and culture negative.

Don’t let fear rule your decision. Reach out for encouragement.