Treatment Option

So just an update on my status. I saw my primary this morning, and currently he is wanting me to stop the antibiotics that I am on. Medications seem to make me worse, but he is keeping me on the BREO. I trust my primary, and he researches the issue; wants the best for me. Perk of working with your provider..
He is requesting all records from the specialists and going to review; he feels as though it is more asthma than the MAI. My test came back positive, however all my xrays come back clear. There is no scarring, and anything that shows up. He states that if I want we can find another infectious disease doctor, the closest will be about 4-5 hours from where I live.. And I just don't know what to do at this point.

@cowgirlmt Just because you are tested positive for MAI, it doesn't always mean you have an infection in your lung. The bacteria is very prevalent in our environment. People who are more likely to get infections from them are those who have pre-existing lung diseases or weakened immune system. If your chest X-rays have all come back clear and your lungs have no scarring, taking those strong antibiotics may be an overkill. I had an infection caused by MAC, the root source of which is my bronchiectasis which causes phlegm to accumulate in my bronchial tubes which in turn traps bacteria in my lungs. But my pulmonary doctor and I have decided not to take the "big three" because my situation was not severe enough to warrant the risk of long-term negative effect on my other organs by the drugs. The infection was 3 years ago. I have been doing fine and, although my lungs have old scarring, the chest X-rays have not shown any further progress in the negative way. I will have to live with bronchiectasis for the rest of my life because it is incurable. But I'm happy to be antibiotic-free with no diminished lung function for the past 3 years.

@ling123 Thank you for taking the time of reading and responding. I have had no health issues prior to getting the pneumonia in May; which seems to stump the specialists that I see. He is requesting all my records, and I will follow up with him once he has time to review records. I am glad to hear that you are doing so well! I am hoping that I can function with the Breo, and not have to take the antibiotics. I have not had luck taking medication long term, tend to get sick or grow a resistance to them. I think in the next month or so I will be doing another CT with contrast, as it has been 6 months since my last one.

@cowgirlmt I'm keeping my fingers crossed that your next CT result shows no worrying signs of infection or lung damage and won't have to take the antibiotics long term. Take care.

@ling123 Thank you so much. I am hoping that the results come back ok, so that I won't have to take the antibiotics.. Just been a very crazy year.

@unicorn, Hi Christa, how are you doing these days? I am hoping you have had some improvement since we last spoke.

@dmarks , I was treated with only one drug in 2005 and the MAC retreated for eight years. Then I got it again in 2013, again was treated with one drug for 10 days in one month, then switched to another drug the following month. At the six month check-up, I was cleared of mac. I alternated these two antibiotics for three years afterwards to keep it away. Then in 2016 I was positive for pseudomonas. Then one of my alternating meds got switched to tobramycin. That knocked out the infection in 30 days. Now, I still do alternating antibiotics, but only one per month. So far, so good. It has been a long time since I had an active infection.

@dmarks, Hi. When replying to a specific person; you need to first type in their @name, so that they/us can tell who you are asking the question of, or are replying to. Thanks!

@dmarks, thank you for jumping in with an answer and sharing your experience. We can all benefit from hearing this. I was wondering if you had taken any steps to prevent re-exposure to getting it again? i.e. raising the water temp in your hot water tank etc? I know that sometimes it doesn't matter what you do, you can catch it again by simply breathing! Was just wondering.

@rona, No, you are using this post correctly. I think there is not that many people on here at the moment that has had that surgery. You may want to look at the NJH website, they tend to favor doing that type of surgery there. I know that they do post testimonials from patients and also have a video library about this sort of procedure. Check out the ones Colleen just posted as well. I tell you, the learning about this disease never ends...! https://connect.mayoclinic.org/discussion/question-regarding-lung-surgery-240dd3/ and https://connect.mayoclinic.org/discussion/mac-and-ntms-with-cavities/