Aspergillus after Bronchiectasis/MAC

I am 79 and have a lung fungi, a newer one called apiotrichum mycotoxinivorans. I am not on any medications for MAC/BE after experiencing major side effects from 2 of the 3 Big 3 drugs. I am on no med for the fungus, at this point anyway, in spite of knowing of its existence for a year now. I use only the Aerobika for airway clearance. Adding the saline/albuterol or any combination of those causes hemoptysis episodes, including, occasionally, the use of the Aerobika by itself. I consult with my ID doctor soon and treatment may change after he views my next CT scan and other tests ordered at that time -- but hopefully no changes for me.

I am 79years old. I was diagnosed Bronchiectasis 7 years ago and MAI at end of 2022. The reason brought me to seek a pulmonologist help was I found my sputum had tiny blood spots. Augusta University hospital pulmonologist Dr Gonzales had been my doctor since. After a series of examinations I was diagnosed with MAI. By then there was a clinic group I could join al because my hemolysis I was so concerned I refused the chance of clinical trial instead I agreed starting big 3 treatments. 6 months later added Aricyce treatment due to continued MAI culture positive. I tolerated the treatment well and got 12 times continually negative culture reports. But I still feel tired and bloody spotting often happens in my sputum. Ct scan shows my right lung inflammation was worsen .my Dr ordered bronchoscope which finds Asbergillus infection. I received Voriconazole treatment since then, At first few days of treatment I felt very sick (I think the fungus infection was flared up) but gradually I felt better and blood spotting all stopped Up to now 35 days . My anti fungus treatment totally would be 6-8 weeks depending my condition and side effects I have. This my experience of MAI and Asbergillus infection. Only after Asbergillus infection started under control my sputum turned white and no blood. I feel much better now.

I am 79years old. I was diagnosed Bronchiectasis 7 years ago and MAI at end of 2022. The reason brought me to seek a pulmonologist help was I found my sputum had tiny blood spots. Augusta University hospital pulmonologist Dr Gonzales had been my doctor since. After a series of examinations I was diagnosed with MAI. By then there was a clinic group I could join al because my hemolysis I was so concerned I refused the chance of clinical trial instead I agreed starting big 3 treatments. 6 months later added Aricyce treatment due to continued MAI culture positive. I tolerated the treatment well and got 12 times continually negative culture reports. But I still feel tired and bloody spotting often happens in my sputum. Ct scan shows my right lung inflammation was worsen .my Dr ordered bronchoscope which finds Asbergillus infection. I received Voriconazole treatment since then, At first few days of treatment I felt very sick (I think the fungus infection was flared up) but gradually I felt better and blood spotting all stopped Up to now 35 days . My anti fungus treatment totally would be 6-8 weeks depending my condition and side effects I have. This my experience of MAI and Asbergillus infection. Only after Asbergillus infection started under control my sputum turned white and no blood. I feel much better now.

So, Asbergillus infection. did not show in your routine sputum culture?

I am 79years old. I was diagnosed Bronchiectasis 7 years ago and MAI at end of 2022. The reason brought me to seek a pulmonologist help was I found my sputum had tiny blood spots. Augusta University hospital pulmonologist Dr Gonzales had been my doctor since. After a series of examinations I was diagnosed with MAI. By then there was a clinic group I could join al because my hemolysis I was so concerned I refused the chance of clinical trial instead I agreed starting big 3 treatments. 6 months later added Aricyce treatment due to continued MAI culture positive. I tolerated the treatment well and got 12 times continually negative culture reports. But I still feel tired and bloody spotting often happens in my sputum. Ct scan shows my right lung inflammation was worsen .my Dr ordered bronchoscope which finds Asbergillus infection. I received Voriconazole treatment since then, At first few days of treatment I felt very sick (I think the fungus infection was flared up) but gradually I felt better and blood spotting all stopped Up to now 35 days . My anti fungus treatment totally would be 6-8 weeks depending my condition and side effects I have. This my experience of MAI and Asbergillus infection. Only after Asbergillus infection started under control my sputum turned white and no blood. I feel much better now.

Liangni1, I am very similar, but have been on voriconazole for 18 months now.

Unfortunately, I have a permanent fair sized cavity. A fungal ball has developed in it and will caused lung bleeding. Voriconazole has been keeping the ball at bay so I can avoid a lobectomy. Side effects not too bad, sun sensitive skin, thin outer skin layer and tingly toes. Dr wanted me to switch to Cresemba but with Medicare part d my copay is over $1000 per month.

I have a school mate who is same age as me. He had lobectomy 3 years ago. I don’t know the reason of surgery but he recovered very well. Maybe lobectomy can help you too. I think you should consult your doctor. After 18 month Voriconazole treatment the fungus has been confined to the ball,this may be the best time to do it.