Treatment Option

@cowgirlmt, I am relieved that you do not work in an ICU! That is the worst place to catch antibiotic-resistant bugs. It is extremely important that you see someone who has treated MAC on a regular basis, and knows what they are doing. Did you research the two specialists that you will be seeing next?

@cowgirlmt, Stretches are great. More strenuous exercise when the lungs are infected is not a good idea. That is asking them to do more than they are capable of (hence the blackouts) and risk scarring. Rest is also a good thing (when you can get it) while your body heals.

@windwalker The infectious disease doctor I have seen states that he has treated many cases. None that are my age though. He is very well known in my area, and everyone I work with have recommended him, stating he is very thorough. I keep in very close contact with my primary about everything, actually have an appointment today. I agree with you, that taking those 2 treatments seem like overkill. I just want to get better lol; as we all do. Just haven't found the right treatment yet.
As for the susceptibility test I have no idea, I have a call in to the specialist that set up the biopsy and ordered all labs.

@ronaf , Hi Rona! We are glad to have you back. There are people on this site who have had lung resection surgery. I am not sure who all of them are, but hopefully they will see this and jump in. You can ask @dmarks if she would share her experience with it. Doctors do treat this on an idividualized basis because there are so many variables involved. I feel like some patients are overly medicated in some instances. In your case, I know that the cavitary form of MAC is very serious and does need to be treated more aggressively. I have heard good things about the doctors at Stanford; they are pretty top ranking. I am so glad that you are going there for help. I was at a NTM /MAC conference in D.C. last spring and they were touting the two drugs that were just added to your list. I recommend that you look up as much as you can about your disease, the more you know, the more you will be able to advocate for yourself. Colleen just posted some helpful sites to visit, just click on the links and it should come up. Also, I have posted headlines on the list under the MAC/Bronchiectasis title. One was about How mac is caught, and the other is about How we can avoid reinfection. Please let me know if you have trouble viewing any of this.

Maybe this will be an option soon. They're looking for clinical trial participants for nitric oxide inhalants. Going to look up the lead doctor now, Jeremy D. Road.
https://bronchiectasisnewstoday.com/2017/11/07/inhaled-nitric-oxide-thiolanox-pilot-trial-for-ntm-infections-to-start-in-canada/

I have MAC as well and was treated with the big three and could not tolerate ethambutol so my dr. put me on Azithromycin, Rifampin, and inhaled Amikacin. This was effective and got me into remission yet I again tested positive soon after. One drug cannot treat MAC and to put you on that may cause you to become drug resistant. I would find another Dr.

I will reply. I have had two lobectomies by the same Dr. in Denver. Their and NJH's belief is that they want to get out the pieces of the lung that are damaged and "could" harbor and create more infections. I am not sure that there is data to support their theories or not. I do know that after I had the two surgeries I got re infected....so take from this what you will. If I wasn't having symtoms, and my CT scans over time showed that the infection was NOT growing I might hold off on any surgeries.....I did come out ok and I am once again on antibiotics, so did the surgery help, I don't know. I just know that I would think two or three times about surgery at all.

Hope this helps

I replied and then back to re read this and I have several points to add. I also am beginning to take clofazamine along with azithromycin and rifampin. I am worried about side effects of clofazamine. Any information about this. Let me know that you saw my reply regarding Dr. Mitchell in Denver as he did two surgeries on me and I was then re infected and on meds.....so I am not sure I would do it at this point if you are feeling ok.

I am going to discuss with my provider about possibly having another CT done. It only took 2 1/2 weeks for the spot to show up in between CT that I had done while in the hospital. The last one I had done was in early part of June. I am on medications, and seems like my symptoms are worsening. Xrays, and labs come back normal; they say that I am just a weird patient.. haha... My infectious disease doctor says that it will help me control, but not make it dormant. They added Cipro 500 BID, but I just don't think this is the answer. My primary is thinking in 1 year I can stop medications, but from what I have read and the specialist opinion as long as I live here I will have to remain on the antibiotics. However if I move to a drier climate, it would help for my health.. Granted I moved here to Louisiana for work, one of the wettest climates.. lol

Apparently, the meds need to be taken together....my dr. had me on the first round for 18 months. So it takes awhile. Have you done a sputum test to determine exactly what germ it is and if the meds you are taking are effective with that germ? That is super important.