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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brookebth | @brookebth | 5 days ago

In reply to @cindywayne236 "My husband was diagnosed with mac in 2016. He went through the medication around 3 times..." + (show)

I am sorry for your loss. May I ask how old your husband was when he was diagnosed and was is Abscesses?

Sue, Volunteer Mentor | @sueinmn | 5 days ago

In reply to @poppygirl25 "How can you have a positive bronc and a negative sputum? What the bronc shows is..." + (show)

Good morning and welcome to our Mayo Connect MAC & Bronchiectasis support group.

You ask a question many of us have had. Actually, a positive culture from a bronchoscopy is considered the "gold standard" in diagnosing lung infections. That is why the protocol indicates the doctor can treat based on one positive bronchoscopy, but there should be two positive sputum cultures before initiating treanment.

Here is how it can happen - the bronchoscopy is reaching directly into your lungs and removing specimens. It can often reach many places, and if lavage (washing) is used, saline is injected and then vacuumed out. Mucus that may be hiding in crevices deep in the lungs can be extracted. The infection(s) identified in the culture are certain to have come from the lungs.
A sputum culture can only sample the mucus you are actually able to expel with airway clearance. And sputum samples can sometimes be "contaminated" with nasal/sinus drainage, excessive saliva, even mishandling of the sample and show NTM, Pseudomonas or other infections. Chances of false positive decrease if two or more consecutive samples show the infection.
Followup is usually based on culture plus CT and symptom evaluation.

cindywayne236 | @cindywayne236 | 4 days ago

In reply to @brookebth "I am sorry for your loss. May I ask how old your husband was when he..." + (show)

67 still young

cindywayne236 | @cindywayne236 | 4 days ago

helen1000 | @helen1000 | 4 days ago

In reply to @poppygirl25 "How can you have a positive bronc and a negative sputum? What the bronc shows is..." + (show)

Maybe bacteria count is slow at that time.