Has anyone reverted to positive while on the “Big 3”?

Posted by tracestew @tracestew, Feb 28 5:29pm

Quick background: this is my first recurrence after having been treated for 24 months. 18 months after treatment ended, I tested positive again. I waited for almost a year to begin the antibiotic protocol for many reasons. But, I knew I really needed to start when I was fatigued all the time. Last July I started the meds, and my sputum was negative within a month. It stayed negative until January 2024. I just got the results of the culture.

How is this possible? My Dr is out of the office until next week, and I expect I’ll speak with her then, but this is really making me worried, and a little angry. Now that clock for treatment starts all over.

Has anyone experienced this? Is this considered another recurrence? Are the meds ineffective? Just looking for a little insight.

Thanks!!
Trace

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

karen71 | @karen71 | Mar 5 12:47pm

In reply to @tracestew "I rest about every other month with a “sputum” test. I use that term lightly because,..." + (show)

Have you ever been negative?

tracestew | @tracestew | Mar 6 6:05am

In reply to @karen71 "Have you ever been negative?" + (show)

This time? Yes. After the first month of taking the medicines. I have been negative for 7 months, and now I’m suddenly not.

I was treated 2019-2021 for the first round, and ended treatment negative. Then July of 2023 started the meds again, after having been told months earlier that sputum tests showed MAC, and my CT showed new areas of involvement.

saravb | @saravb | Mar 6 8:27am

I am 3 months into treatment for ntm, and I am hopeful the meds will knock out this infection. I am so grateful to all who have shared their experiences. I will know exactly where to turn for support and imformation should things not go as hoped for.

suzyqueue | @suzyqueue | Mar 7 7:19am

It is extremely common for this disease to go dormant and then raise its ugly head continuously. I've been in treatment for 6 years with never having a negative culture. I also do the inhaled Arikayce along with Clofazamine that was recently added to everything. My upper left lobe formed a 10 cm cavity within 30 days of waiting for additional cultures to come back before starting treatment.