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

I, too, tested negative after first month of treatment and stayed that way six months. I totally understand your frustration, concern, and anger as I have had all of those same emotions when my culture revealed that I had it growing once again. My colony counts are really low which is the only good thing about it. Perhaps, I can knock it back down with adjustment to meds and airway clearance efforts. That's the current plan. The answers to your questions regarding recurrence and ineffective meds are maybe and maybe. Here are some questions to which I would want the answers. Is the species that you tested positive for this time the same species for which you are being treated? What are the colony counts? How many cultures have been taken.....could it be lab contamination? Have drug susceptibilites been run to determine if the bacteria in the culture are susceptible or still susceptible to your current drug regimen? I hope this helps stir up the formulation of other questions that need to be answered by your doctor. Hang in there, fellow sojourner. I hope this is only a blip and that your next culture will be negative again.

Reoccurrence of Mac is indeed common. After my 28 months of big 3, 6 months later I had what we thought was a reoccurrence but turned out to be a fungal aspergillus infection that I've been treated for the last 24 months

Were you still actively taking the medicine? I am still treating my first recurrence, after having been MAC free for over a year. I started the meds in July of this year and have been negative for 7 months. But, this last test showed MAC.

When you submit your sputum for cultures, do they ask for one specimen or three? My pulmonologist told me three is best, because any single specimen may be contaminated, but it is unlikely that all 3 of them will be. Then if one grows positive, and the others do not, it most likely means the infection is not in your lungs.
Sue

I also have cavitation. I was culture free of mac after 5 months of the big 3+Amikacin, continued the big3 for 23 months due to the CT. Finally at least stable so w took a break from the big3. Symptoms re occurred 6 months later, restarted big3. Mac cultures negative, PET was negative, but aspergillus started to show confirmed by a super dimension Bronchoscopy which confirmed the aspergillus.

Hi, Trace! I had a similar experience. I treated MAC from January 2020 converted quickly, stayed negative, and was off the Big 3 in 15 months. Unfortunately, after only about six months, I tested positive again for MAC. We waited to treat until January of 2022 because I have never had physical symptoms, am extremely physically active, etc., but after my December 2021 CT showed progression, we decided to start medication again.

I started January of 2022 and converted in March 2022. After 3 negatives, MAC returned in June and basically never left. I had a couple negatives after that, but never two back to back. After 16 months of the Big 3 and still positive, we started Arikayce and dropped the Rifampin. I got a negative June 2023 and have been negative every month since. I'll be finished with my treatment in about four months.

We'll never know for sure whether this was the same strain that somehow managed to come back after successful treatment or a new one, but it appeared to develop resistance fairly quickly into treatment in 2022, even though the cultures and sensitivities indicated it would respond to the Big 3 in initially. I've always done airway clearance and avoidance, and we added a Monarch vest in November of 2021 to see if that would help eradicate it. I still use it daily.

Having been on treatment for most of the last four years since my MAC was first discovered, basically, I am hopeful that this time to stay clear for a long time. Best of luck! I know how frustrating the positive/negative "hokey pokey" can be!!!

Laurel

I’m sorry. This a lesson in patience, is it not? I used Arikayce the first go round. It converted me to negative right away. I had no issues with using it, although I’ve read many people have had side effects.
Glad to see you are close to the rend of treatment!! That’s wonderful! Fingers crossed for it being a long-term success!!

Thanks, Trace! I've managed to pretty much do all the things I wanted, with modifications, during treatment, but it will be nice to not have to worry about the Arikayce's requirements for refrigeration, etc., daily especially.

I hope your doctor can find a solution for you and get you negative again and hopefully you'll stay that way. I know having the clock start again is soooo frustrating.

Best of luck!
Laurel

I’ve been on the big 3 and an inhaler for six months. No problems until very recent…tingling in fingers. My next appointment is next week. However, my question is, his often do you get “tested” and how? CT scan? Bronchoscopy? Something else? I have no coughing anymore, therefore no sputum to test. I wonder if I’m negative yet… or not? I was told it returns to about 30% of pts but I wonder if it’s more. Thanks for any info.

I rest about every other month with a “sputum” test. I use that term lightly because, like you, I am not a cougher. It’s mostly liquid that needs cultured. I have CT scans about twice a year. I was originally diagnosed 5 years ago by bronchoscopy.