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MAC - To treat or not

MAC & Bronchiectasis | Last Active: 2 hours ago | Replies (15)

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@bayarea58

Ok so full disclosure I am still relatively new to all of this and am in the reverse position where I have little to no symptoms but lots of lung damage on my CT. With that said my initial question would be is your pulmonologist a BE/NTM specialist? If not, I would find yourself a BE/NTM specialist. I obviously have little idea of your overall health but there are many here older than you that have treated their MAC, though not everyone decides to treat for the reasons your doctor points out. Everyone is different but given the decline in your quality of life, if I were you I would want to at least try treatment (assuming you have MAC, seems that is still an issue) to see if I could improve my symptoms. It is true that not everyone tolerates the antibiotics but many do, and there are a few adjustments that can be made to try to improve tolerance for those who have issues. Even if you can’t get rid of your NTM, assuming you have it, you might be able to tamp it down enough to feel better. I say this as someone who has not yet started treatment, and many of my concerns mirror those raised by your doctor. But I feel fine. If I didn’t, for me, the scales would immediately favor treatment. Again, I don’t know your whole health picture and am a fellow patient, not a medical professional, but I do want to support your finding a specialist who will at least have a full discussion with you about the possibility of MAC, keeping an open mind to treatment should you have MAC. In the meantime do you do airway clearance, including nebulizing with saline (many here use 7% but lower %’s can be used if more tolerable). If not, I would discuss with your medical team ASAP as this is considered basic hygiene for those with BE and may help with your symptoms regardless of your MAC status. One last comment, from reading discussions from other patients on this forum, I have read that treating pseudomonas can be quite difficult. Have you done follow up sputum testing to see if the pseudomonas has cleared or is at least sufficiently tamped down. It may be that you need further treatment in this regard, has this been discussed with your current pulmonologist? What does your current pulmonologist say about your short of breathness, given it’s recent onset? Does he have a plan to get you feeling better?

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Replies to "Ok so full disclosure I am still relatively new to all of this and am in..."

You bring up some good questions. No, we don't know if I have NTM or MAC because no one has done a bronchoscopy even though the doctors in the hospital suggested it. And apparently the assumption on discharge from the hospital was that since clinically I felt better, had no fever, wasn't coughing, completed the 14-day treatment with antibiotic and only got SOB with real exertion beyond my normal activity I was cured. I told my pulmonary doctor that since doing all that I came home, felt great at first and now need to use oxygen more than I ever did and at a higher level! But where do you even start to find someone with the skill and knowledge to treat those things?