3 months after ending big 3 after 18 months - Mac seems to be back

@justaussie My understanding is that meds should continue, barring serious side effects, until sputum cultures are negative for 12 consecutive months. It is good that your cavity shrunk but that does not confirm the MAC is gone. If you were not getting sputum tested, it's possible you were never really cleared of the infection. Like you, my symptoms (cough, night sweats, weight loss, etc) all stopped shortly after treatment but I have yet to have a negative culture. My ID doctor orders sputum cultures every 6 weeks. It may be a very good idea to find a new ID doctor who is more familiar with this disease. Even if your culture comes back negative, you will need to continue to monitor your situation to make sure you do not have a reoccurrence which unfortunately is too common with MAC and you will need a good Dr who will be proactive and understands the disease. I wish you the best!

@mjb24 Thank you - I appreciate your words. I now realise my ID doctor really wasn't looking after me properly. I will ask my pulmonologist if he can recommend someone who takes my insurance. I'm extremely disappointed as it could be this has made things worse. I really felt like no-one had my interests in hand to be honest. My pulmonologist is better than my ID doctor I think but my ID doctor is familiar with Mac so I don't know why she didn't handle my case better. Thank you.

@justaussie I rely solely on my pulmonologist. He is well versed in all aspects of broncheactasis and NTMs and therefore I have no need of an infectious disease doctor. Find a pulmonologist at a center of excellence for our condition and maybe that is all you will need.

Are you going to a doctor in the Care Center Network? If not, may I suggest you find a location/doctor at one of the locations listed in the link below.
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

@justaussie I am currently treating and test my sputum monthly. I agree with others, you need a true NTM specialist not just an ID doctor who says they are familiar with MAC. I know from experience those are two different things.

I had something similar happen to me. I was on the Big 3 taking meds every other day with Sunday off. I did that for 14 months, which was 11 months after a negative bronchoscopy sample. I had to stop because I got neuropathy in my feet that was getting progressively worse and starting to affect my hands and arms. I also got bad tinnitus from the azithromycin. Due to the worsening side effects my ID doctor thought it was safe to stop early. Just like you, the MAC came back 3 months later. At that point, my ID doctor wanted to put me on azithromycin, rifabutin, and inhaled arikayce on an every day basis. He had me start the azithromycin the first week, then the rifabutin the second week and wanted me to start the arikayce the third week after which time I would be taking all of them every day. After I started the rifabutin, it made me so sick I couldn't get out of bed. I actually wound up in the hospital a couple of times. I never got to the point of taking the arikayce. I had to switch ID doctors because the one I was seeing closed his practice and moved out of state. After reviewing my case and my CT, my new ID doctor said I could try the watch and wait protocol because I was actually feeling fine with no cough or any other negative symptoms. So that's what I've been doing and, of course, airway clearance twice a day nebulizing 7% saline and aerobika combined as well as an AFFLO vest. I also try to get exercise in by walking 2 - 3 miles a day when my autoimmune condition allows. It's very frustrating to go through all that drug therapy only to have the MAC return so soon. I will say that my doctors told me I should do airway clearance, but they never explained what that meant so I didn't know and didn't do much when I was being treated. Since finding this group, I have learned so much and I'm very thankful for that. I had to ask my doctor to prescribe the 7% saline and I had to ask for the vest as well. I would say airway clearance is the most important thing. MAC doesn't like a saline environment so I'm very diligent about keeping up with that twice a day in the hope it will keep it at bay for as long as possible. Hang in there. There are other medication regimens your doctor might prescribe that could work for you.

@sherrig thank you for the information. Sad I live in Indiana and the closest doctor is 2 hours and 43 minutes away

I travel 6 hours to the Vanderbilt center in Nashville and it is worth it to see folks that know what they are doing.

I was diagnosed with MAC , and I can’t get a straight answer from any of my doctors

@annasill Welcome to our group, we'll try to help you navigate this new issue. MAC is a rare infection, and many doctors have very little familiarity with it, which may be part of the reason you are not getting helpful answers.

Can you tell us a little more about when and how your were diagnosed, and what kind of doctor you are seeing?