Now infected with mycobacterium abscessus

I was initially diagnosed with abcessus along with other bugs and fungus at the start. Somehow the abcessus didn’t seem to gain much traction it seems! The other things got treated (especially aspergillis) since at the time they were more concerning. Repeat bronchs never grew the abcessus. Weird. But I was told that I was going to have IV antibiotics for 40 days.

@pollyflinders Like Barb said, M. abscessus and other "outliers" can show up in our cultures from time to time. My ID doc says that is why he does 3 sputum samples every time. One may just be contaminated by something in the air, in our nasal passages, or even in the lab.

When an NTM is diagnosed, the lab can quantify the amount and do a sensitivity test to see if another med needs to be added. Who wil you see to determine the treatment?
Sue

Thank you so much for your replies. I won’t know much more for a few weeks and will probably need another bronchoscopy as I have trouble producing samples.
I’m from Northern Ireland and am being treated by an NTM specialist at Belfast City Hospital.

Barbdk, What was the treatment for your aspergillus? How did it work out? I was diagnosed with it last November and I am in my 8th month of voriconazole and my skin hates it.

Same, vfend. I switched to posiconazole and it has less skin effect. But I took it years ago, and my skin is permanently damaged, especially my bottom lip. I also burn easily, like the back of my hands if I take doxycycline (given for a variety of infections). Try to switch if you can.

I have abcessus as well. Dr did tests to see best drug to use. I’m am currently on inhaled Amikacin, azithromycin, and clofazimine. I have also been on IV form previously. I make sure to take a probiotic as well. Hope all goes well for you.

While vfend is insurance "friendly", Posaconazole is $1500 per month. Did your insurance cover it?

Yes, because I couldn’t tolerate the side effects of vfend. I also have myeloma (blood cancer) so often expensive weird drugs were quickly approved. Possibly the only advantage to cancer.

Hi Polly, Yes, like you I went from the intracellulare to the abscessus over time + Aspergillus + bronchiectasis but was largely asymptomatic so they only treated the Aspergillus. Over the last 1 1/2 years my CT's have actually improved (unexpected), in part from learning and trying many things I learned about here! I study whenever I can and keep a strict regiment with my treatments, EXERCISE! and diet. The sodium chloride was a game-changer + learning the airway clearance that worked best for me. One pulmonary told me it could be hiding away dormant in one tiny place. I liked that idea! I have also been told the IV is the only treatment. The discouraging thing is such a large percentage re-infect after treatment so I would have to really weigh things if it comes to that. Blessings!!

Hi Kathleen. Thanks so much for your encouraging reply. I still haven’t heard what treatment is going to be recommended and I’m torturing myself with anxious. I also am very strict with myself about diet, exercise etc but I have trouble with airway clearance.Here in NI we don’t get a lot of advice but will ask about the sodium chloride next time I’m at clinic. Best wishes.