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@sueinmn

@ellenholm Elle - You pose an excellent question, and I hope others will get in on the discussion. I am sure there are many "silent quitters" out there, as this is a difficult regimen to maintain.

Here are a few questions to ponder:
Did the doctors tell you the level of infection you are dealing with?
Some indicators of severity are:
- numerous nodules, cavities or widespread opacities in the lung (indicators of long-standing or more severe infection)
- the colony count and type of NTM found (few doctors share this) which indicates severity
- how quickly the culture grew NTM (indicates more aggressive types and/or high bacteria load)
- severe cough, congestion or fever, weight loss and fatigue

How experienced are the ID doc and pulmonologist in treating NTM?
It is rare, and many docs don't see it often, so rely on "standard protocols" for treatment recommendations. My first pulmonologist had only treated 30 cases in 27 years, and was not open to exploring options, talking to NJH or listening to me.
One indicator of their experience is emphasizing the importance of baseline and regular (every 3-6 months) vision and hearing screenings while on the medications.

How experienced is the ID doc in treating lung infections in older patients? We tend to tolerate and absorb them less well, and side effects can crop up fast. Also there is a tendency to dismiss some effects as "normal signs of age" when they are a warning the drugs are too hard on the body.

After 3 months of antibiotics and (hopefully) airway clearance, is your husband feeling better or worse? Is he (or are you) noticing changes in his hearing, vision or weight? Is he eating well and managing any digestive symptoms? Does ha have more fatigue than before?

My story about antibiotics (in my late 60's) - at first I was very ill with MAC, and the need for treatment obvious. But over time, the drugs were harder and harder to tolerate, my lung images improved, but MAC kept growing in my cultures. Finally, after over 18 months, the ID doc & I, along with his phone consult to a colleague at NJH, made the decision to stop the drugs and rely on airway clearance with saline. My primary and pulmonologist agreed. That was over 3 years ago. Since then I have had a few minor exacerbations, a few tweaks to my asthma meds (the underlying cause of my Bronchiectasis and MAC), needed a few days of prednisone or antibiotics a couple times. At my 3 year appointment in December, my lung images were stable. I have regained my lost weight and (most) of my stamina.

Remember we are all different, but only you and he can make this decision. Have you discussed your concerns with the pulmonologist or his primary doc to get another point of view?

Sue

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Replies to "@ellenholm Elle - You pose an excellent question, and I hope others will get in on..."

I am looking at phage therapy for my 4.3 cm Mac infection. I have a pulmonologist and ID doctor. I ask what to expect
and probable timeline if untreated. Never get an answer.