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.

@mjb24 …I had a robotic lung resection and had my NTM 3cm Cavitary mass removed .I could only make 1 week of antibiotics thst would have never penetrated the Cavitary mass anyway .I don’t know where you live ,but please find a team that can properly treat you !
I went to NYU in Manhattan that has a dedicated team for this disease.

@visions63 When did you have the lung resection done? How was your recovery? It sounds like that cleared the MAC for you, is that right? I have finally gotten in to the NTM clinic at Shands in Gainesville. I do have a large, 6cm cavity in my left upper lobe and the remainder of that lobe is consolidated/collapsed. I do believe this is why after 2 years on the meds, my cultures are still positive. Unfortunately, there is also a cavity in the left lower lobe but the one in my right lobe has resolved so there is some good news. I will be anxious to see what they have to say.

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.

@linda1334 I just started my big 3 regimen. I took the Rifampin first, on an empty stomach as directed. Two hours or so later, I ate a sandwich and took the other two. In the afternoon, I got the worst stomach cramps and had diarrhea pretty bad. Also, I din’t feel very well the rest of the day. My instructions are to take three times a week, so today is my day off. Hopefully these symptoms will ease up after my system gets used to it.

@mjb24 Mary after reading another recent post of yours where you described your left lung damage I wondered if surgery would makes sense for you. I have been following your journey (I am also treating with cavity disease) and so was aware from your posts the challenges you are having. Glad to hear you are reviewing your circumstances with the NTM clinic. We are hearing more and more about the role of surgery in treating these infections and would be curious what your team thinks about the role of surgery in your case. There does seem to be a VERY small number of people that the experts trust to do this type of surgery so it may make sense to seek one of them out and see what they think. I am a patient at NJH and they work with a surgeon in Denver. When I asked about the potential for surgery, my NJH doctor didn’t think that was on the table for me (yet) but said if I were going to have that surgery the only person he would recommend is the surgeon they use. I can’t remember the surgeon’s name off the top of my head but if you are ever interested in it, I am sure I can dig it up. Just let me know. Good luck!

@mjb24 Mary after reading another recent post of yours where you described your left lung damage I wondered if surgery would makes sense for you. I have been following your journey (I am also treating with cavity disease) and so was aware from your posts the challenges you are having. Glad to hear you are reviewing your circumstances with the NTM clinic. We are hearing more and more about the role of surgery in treating these infections and would be curious what your team thinks about the role of surgery in your case. There does seem to be a VERY small number of people that the experts trust to do this type of surgery so it may make sense to seek one of them out and see what they think. I am a patient at NJH and they work with a surgeon in Denver. When I asked about the potential for surgery, my NJH doctor didn’t think that was on the table for me (yet) but said if I were going to have that surgery the only person he would recommend is the surgeon they use. I can’t remember the surgeon’s name off the top of my head but if you are ever interested in it, I am sure I can dig it up. Just let me know. Good luck!