Do you have any suggestions for staying healthy and positive? I moved to Louisiana from Montana for work. I am here alone, and it has been a difficult few months for me. I work in the medical field, so am constantly exposed to sickness, and long work hours. I have tried so many things to help with energy, control pain and nothing seems to help.

@cowgirlmt, Kimmy, you had asked how to stay healthy and positive....there is info on how to try to stay infection free. I will see if I can dig some links out for you to visit. Have you had time to research this at all? I know you work long hours and are probably exhausted, but it would be a good idea to learn all that you can because this disease can be very complicated. For right now, getting rest and eating healthy foods, and exercise will go a long way to help stay healthy. As far as staying positive, I believe you will feel more positive after your meds have kicked in and the infection is knocked down. For right now, allow yourself to rest and don't beat yourself up over it.

Hi Windwalker, I'd be interested also in any information on how to stay healthy & positive. I must admit, I haven't kept up w. this chat line much. Sometimes because there is just too much information. And also because I was traveling. In any case, Glad it's here.
Also, it does seem different doctors put people on different drugs. This disease seems very individualized depending on many factors. You mentioned your Doc didn't want to put you on azithromycin. I was diagnosed in the spring of 2016 & put on azithromycin, rifampin, & ethambutol. Plus, because I have cavitary lung disease also; i.e. a cavity on the left side of my lung caused by the MAC bacteria, I was put on 5 months 3x a week of amikacin. Now I'm on not only the 3 orals, but also inhaled amikacin and the drug clofazamine will soon be added. Geesh!! It's a lot of drugs. Fortunately, I have a very Doc at Stanford in CA. who's not only a lung Doc., he's also an infectious disease Doc. A week from Monday, I'm flying to Colorado to meet Dr. John Mitchell, a surgeon who specializes in lung surgery. My Doc at Stanford things surgery & the removal of the cavity may lessen my chances of the MAC reoccurring. I'll learn more once I meet Dr. Mitchell. This disease is quite involved. I look forward to the time when I'll be off the drugs. Anyway, this is a lot of information. I'm wondering if there's anyone out there who's had lung surgery for the MAC? If so, I'd be happy to hear from you. Rona

@windwalker Thank you so much for all the information, responding, and taking the time out of your day. I greatly appreciate it! I have had some time, trying different things. I am hoping that my energy comes back, working extremely long hours. And we are in the middle of a transition for a new system, and I am the go to person for all the clinics, nurses, and providers. So down time doesn't exactly happen for me.. Always things going on, and not much down time. I try and exercise, but is very painful in regards to breathing, and start blacking out. So at this moment just doing stretches, but still not the same.

@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.

@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.

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.

Hi, I did see both your replies. I have quite a few questions. Hope this isn't too much for you. 1. How long were you on treatment; i.e. antibiotics before having surgery & for how long were you on them? 2. Were your sputum samples negative? And if so, how many negatives did you have in a row? . 3. Were you on antibiotics at the time of surgery? 4. After surgery did you continue on antibiotics and for how long? 5. How long were you MAC free? i.e. negative cultures, no symptoms after surgery? & how much after surgery did you get reinfected? 6. Is this correct, you had cavitary lung disease?i.e a cavity or more than one in one of your lungs? What was your diagnosis, besides having MAC?
That is such a bummer that you got it again. I have had 12 negative cultures in a row. I basically have no symptoms. I basically feel pretty darn good. How was the actual surgery for you? Recovery? Thanks, Rona

Thanks Windwalker, I heard from dmarks. I hope there are more people out there who've gone through surgery successfully or not, that can reply to me. I'd be very interested in hearing about people's experiences. If they've remained MAC free or didn't need treatment again after surgery. Is there another way for me to post this question? I'm still not sure I'm using this chat line correctly. Rona