1. < MAC & Bronchiectasis

MAC Big 3 treatment and negative sputum conversion

Posted by desperate2 @desperate2, 5 days ago

I am 47-year old female. was diagnosed with a nodulary NTM and bronchiectasis over a year ago, confirmed by CT scan and bronchoscopy. I was given a choice of a treatment or hopeful waiting but after getting worse, I started ethambutol, rifampin and azythromycin 3x a week in 2/2024. After 1 positive sputum conversion, all of the other sputum tests came back negative. I am not seeing any improvements in how I feel (fatigue, elevated body temperature, frequent exhaustions, cough). CT scan after 6 months showed mixed changes, with some areas better and some worse. Bronchoscopy after 6 months confirmed MAC. Moreover, I got severe pneumonia and other issues after the procedure. At this point, my doctor and I are unsure how to proceed. He believes my cough isn’t related to MAC and I should continue the treatment for another 6+ months and call it a success despite the bronchoscopy negative sputum conversion. Has anyone been in a similar situation with negative sputum tests but positive tests using lavage from lungs? How do I know the medication is working in this case? If the lavage is more accurate, should I switch to daily medication regimen or to add ALIS? I am afraid I can’t undergo another bronchoscopy any time soon and also trying to manage side effects. Thank you.

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pacathy | @pacathy | 4 days ago
In reply to @sueinmn "I strongly suggest you appeal Kaiser's denial of an outside consultation. First of all, Kaiser is..." + (show)
@sueinmn

I strongly suggest you appeal Kaiser's denial of an outside consultation. First of all, Kaiser is a very large organization, even if they don't have a specialist locally, it is probable that they have one within their reach.

MAC is a rare disease affecting less than .5 million people, and treatment protocols are quite specific, that alone is a reason to allow access to an outside specialist.

Maybe you can include a link to the NJH video in your appeal to show the complexity of this infection?

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I agree with appealing! . Even many years ago, a doctor told me a surgery might be denied, but I should appeal the decision. He said most people don’t appeal and insurance companies save a lot by denying things first. He was right and they approved it after appeal.

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wolfplanetzero | @wolfplanetzero | 4 days ago

If you are still seeking a second opinion, Cleveland Clinic's NTM Center will sometimes do virtual visits, even for a first appointment. Best of luck to you.
https://my.clevelandclinic.org/departments/respiratory/depts/nontuberculous-mycobacteria-ntm-center

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Rick | @rstel7272 | 3 days ago
In reply to @tconz "I was on the Big 3 (7 days a week) for 13 months and inhaled Amikacin..." + (show)
@tconz

I was on the Big 3 (7 days a week) for 13 months and inhaled Amikacin (3 times a week) for 8 months with all Negative sputum samples for MAC and Fungus that entire time. My 6 month CT showed a new cavity and after a Bronchoscopy I had Aspergillus and Abscessus. I was so discouraged but I am now being treated for the Aspergillus only with Voriconazole for 6 months. I finally finish that treatment next month but don't have another CT until May when I go back to NJH. I have never felt sick really except for a little coughing.

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Terry, I get my next CT in February. I just completed 2 years of voriconazole. I have no idea what will happen at my next pulminologist appt later in February. -Rick

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1 reply
tconz | @tconz | 3 days ago
In reply to @rstel7272 "Terry, I get my next CT in February. I just completed 2 years of voriconazole. I..." + (show)
@rstel7272

Terry, I get my next CT in February. I just completed 2 years of voriconazole. I have no idea what will happen at my next pulminologist appt later in February. -Rick

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Rick, I can't believe you have been on Voriconazole for 2 years. NJH and my Pulmonologist told me I could only be on for 6 months (maybe I am on a stronger dose). I have side effects like skin rash and hair loss but they said that was common and I stuck it out. After 2 years I hope you get a great report!

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helen1000 | @helen1000 | 3 days ago

Bronchoscopy is a golden standard. When I was diagnosed as MAC, my sputum was negative but bronchoscopy is positive.

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