1. < MAC & Bronchiectasis

MAC Big 3 treatment and negative sputum conversion

Posted by desperate2 @desperate2, Jan 5 10:01pm

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 | Jan 7 8:15am
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 | Jan 7 11:42am

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 | Jan 8 7:18am
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 | Jan 8 8:30am
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 | Jan 8 9:39am

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

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1 reply
desperate2 | @desperate2 | Jan 11 3:54pm
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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I am sorry to hear that. I have aspergillus in the lung as well, but all tests for mold sensitivity are coming back negative so my doctor thinks mold is not the issue. I will talk to them again. Goof luck.

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desperate2 | @desperate2 | 6 days ago

An update: I get a second opinion and the doctor suggested switching to daily meds and adding ALIS on top of removing part of my lung. Since I have been on meds for 14 months, I believe they lowered my immune system and Alpha 1 protein levels (I am MZ) to a point that I had to start augmentation therapy. Now off the MAC meds, my body feels horrible - joint pain, constipation, fever, fatigue and bad cough. Anyone else had that experience?

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1 reply
cindywayne236 | @cindywayne236 | 6 days ago
In reply to @desperate2 "An update: I get a second opinion and the doctor suggested switching to daily meds and..." + (show)
@desperate2

An update: I get a second opinion and the doctor suggested switching to daily meds and adding ALIS on top of removing part of my lung. Since I have been on meds for 14 months, I believe they lowered my immune system and Alpha 1 protein levels (I am MZ) to a point that I had to start augmentation therapy. Now off the MAC meds, my body feels horrible - joint pain, constipation, fever, fatigue and bad cough. Anyone else had that experience?

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My husband was diagnosed with mac in 2016. He went through the medication around 3 times it got so bad he just stopped them. He passed in 2023. The medication took everything out of him. Good luck i hope you get better. Everyone with disease is in for the fight of their life. I watched a man that worked everyday of his life get down where we had to do everything for him his last two months of life. I pray everyday they find a better cure for this disease.

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1 reply
kathyjjb | @kathyjjb | 6 days ago
In reply to @desperate2 "I am seeing both, pulmonologist and infectious disease specialist. They haven’t treated anyone with MAC before..." + (show)
@desperate2

I am seeing both, pulmonologist and infectious disease specialist. They haven’t treated anyone with MAC before though so they are not sure how to proceed at this point. If the lavage is more accurate, my treatment isn’t working. In that case, I need to decide whether to take big 3 daily or change/add medication. I am getting second opinion but my health insurance won’t pay for anyone outside my network and they don’t have a doctor for MAC. That’s why I am interested in hearing from others that went through this.

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Just curious, were you able to get into an ID doctor with NTM experience? I recently went to National Jewish in Denver, it was well worth the trip.

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poppygirl25 | @poppygirl25 | 5 days ago
In reply to @helen1000 "Bronchoscopy is a golden standard. When I was diagnosed as MAC, my sputum was negative but..." + (show)
@helen1000

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

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How can you have a positive bronc and a negative sputum? What the bronc shows is one thing, subjective, what grows is scientific. So with my bronc the image was described and the culture results reported as positive. With this disease aren't you most concerned with the cultures?

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