Started treatment for both M abcessuss & MAC

Posted by kellykvent @kellykvent, 1 hour ago

I have M abcessuss (3 different strains) and MAC, started 3/4 years ago. I already have COPD, my pulmonologist, finally explored my worsening symptoms (even tho CT scans showed this infection since 2021) had my 1st bronchoscopy, showed M abcessuss w/Sputum sample positive. I was referred to a dr @ Mt Sanai in NY, I’m from NJ, in Sept 2024. Said I fit criteria 4 treatment but wanted to do endoscopy 2 c if something was causing this (which it wasn’t) Start of 2025 with his colleague, an Infectious Disease dr, I was admitted twice 2 hospitals for respiratory failure, now have home oxygen, symptoms WORSENING, 6 positive sputum samples, showing new strains and Nov 2025 positive for MAC. Dr said he thought it was in colonization!!!’ Year wasted, money wasted & my anger, frustration w/dr was intense. Jan 2026, w/all new team of NJ drs I found, had lung biopsy showed M abcessuss & recent sputum samples showed everything other strains & lung damage severe. With help from National Jewish drs in Colorado, finally start a very complex treatment. Yesterday had 1st IV med (3x’s week) then 5 daily pills (6 taken in total daily) I’m already having stomach issues with IV med, I’m SCARED TO DEATH. Do I really want to put my body thru more anxiety? Is it going to be worth this for a year? I hear horror stories of people after meds & sputum samples neg & they die 6mos later. 1 med I’m more nervous with is a investigative rx called clofazimine, side effects are severe, I had to sign all sorts of forms. Has anyone tried this??? Pls help! I’m changing my mind already

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