Not treating mycobacterium Abscessus ?

I went through a several round of antibiotics for pseudomonas, oral and IV until the infectious disease doctor decided I probably had MAC. Cultured Abscessus . New PIC lines and new meds. I didn’t make it through day one. His second recommendation of iv treatment was just not feasible. Switched doctors and another fail. Went to an NTM clinic in Birmingham 270 miles away and finally got the right doctor!! Watch and wait. Monitor with CTs and cultures. Have not cultured Abscessus since. I did culture pseudomonas in April. No meds. Nebulizer and airway clearance.

@farfalina - Have you had a new sputum culture since the original diagnosis? Like @bamaqueen, one mine grew M Abscessus, but my pulmonologist requires 2 consecutive positives, at least 4 weeks apart, to initiate treatment. The next 3 were negative, so we just did watch-and-wait. It never showed again.

Does anyone on this site know where the best place to be treated for MAC in Virginia is? Or where there is an NTM clinic in Virginia?
I live in Virginia but am very close to the NORTH Carolina line.

@sueinmn I know you are asking the author, but I did have two consecutive positives for MAb after a year of chasing just pseudomonas. The second being from a bronchoscopy. Then I had a couple of negatives for everything. My last one was just heavy pseudomonas, but I know the specimen was from the upper throat area and not my lungs, It doesn’t mean it’s gone, but it’s behaving!

@lynne54 Could UNC Chapel Hill in NC work for you? That's one of the recognized Care Centers and I've found the team to be excellent. Depending on where you are in VA, it may only be just over an hour.

@chch1 Thanks for info.

Four years ago I finished 18 month antibiotic treatment for MAC. I tolerated it but it was rough. One year ago MAC had returned. At the recommendation of my new pulmonologist at Mayo-Rochester, I chose no antibiotic treatment, but daily respiratory therapy and exercise. I will have a CT scan and MRI follow up appointment in July. At age 79 with Bronchiectasis and MAC, I feel well.

@annwk Will you let us know what the followup shows?

@lynne54
I am happy with Duke Drs.

Hello Farfalina, I have been colonized with M. Abscessus since 2018. Almost all of my cultures have shown it. But I've never been sick enough to warrant treatment, or another way to put it, colonization has not progressed to infection. That's not to say I haven't had symptoms. I have, including insidious weight loss, fatigue, digestive issues and generally feeling unwell. But I think I'm very fortunate with my pulmonologist, who I've been with since 2012, so he knows me well enough to know when I'm BS'ing about how well I am.

In my opinion, treatment comes down to how sick you are, and how you feel about being ill to that degree, and how proactive you can be in managing your symptoms and strengthening your immune system. After struggling for a few years, I've managed to gain weight and strength, reducing fatigue and digestive issues and am feeling quite well now. Even the bronchiectasis is not a problem. For context, I've been treated for an M. Avium infection once and Mac complex twice since 2005. I hope this helps.

Best,
Roisin