Length of treatment

I am not (yet) in your position but your concern is of course understandable and I think I likely speak for many here when I say I have the general concern of “what if I don’t convert”? Hopefully your doctor is an NTM specialist and well versed in the full spectrum of options at this point. I am not familiar with Nuzyra but am going to educate myself on it. I do not have personal experience (yet) on treatment duration, but I have certainly heard others’ stories where they were on antibiotics for years, and years. And of course not everyone can tolerate the drugs and so they live presumably never converting or perhaps spontaneously converting over time. Hopefully others here can share their experiences in this regard. How are you doing otherwise? How are your symptoms? CT? I know that culture conversion is the initial goal, but it’s not the only goal and at the end of the day, if the symptoms are improving and your CT is stable (or even better, improving) these are important goals also. For myself, I understand that conversion has been found to be clinically significant, but given the high rates of reinfection, at times I personally find myself questioning the true value of culture conversion. I realize nothing I am saying is helpful and I am hoping others have more concrete feedback. Hopefully you are doubling down on airway clearance, exercise, good nutrition, plenty of sleep, reducing stress — all things necessary to keep fighting this fight. Good luck, hopefully the addition of Nuzyra will do the trick!

@bayarea58 Thank you for your very reply, actually I found it very helpful. I think I just need some reassurance. My id doctor is very experienced with MAC so I am grateful for that. There are a few other options, however, he wants to see how the Nuzyra works as I am already on 4 antibiotics and Arikayce. Also, many of the options are not susceptible so we will get updated testing to see if anything has changed. My last CT did show slight improvement and I really have no symptoms. I have upped the 7% saline nebulizing to twice a day. I do eat healthy and sleep well. I slack on exercising because I am still working full time and have enough difficulty finding time to neb 2x day, do airway clearance, Arikayce, cook healthy meals and keep up with all of the other chores . I will retire in June and I think that will help with reducing stress and having more time for exercise. Thanks for your time and input. Wishing you all the best in your MAC journey.

@mjb24 Mary, I have been thinking about you tonight and one thing that occurred to me is whether there might be something in your environment that is continually exposing you to high levels of NTM. Of course they say NTM is ubiquitous, but really it is higher in some instances than others and if I were in your shoes I would be looking closely at my environment to see if there is something “dirty” with NTM. Are you using a humidifier, drinking water from the fridge waterline? Have you tested your household water, are you using adequate water filters? Are you gardening? I assume you are not spending time in an indoor hot tub … but you get my point. I realize some doctors say not to worry about environment but where one is having challenges converting or having reinfection(s) it seems worth looking closely at one’s environment. Also, have you been evaluated for gerd or any sort of swallow dysfunction? It can be difficult to clear NTM with these conditions (certainly without mitigating behaviors) so if you have not been evaluated for them, that might be a reasonable thing to request at this time.

@bayarea58 That's a very interesting point, I'll have to put some thought into that. Thanks

Three good facts for yourself, no problem eating, eating healthy, and sleeping well.
So many "mysteries" when one has BE. Bayarea58, with much thought, has given you a "mystery" to think about and possible solve.
Hopefully you have the weekend off to fit in all we have to do for ourselves. Life sure has changed for us and for me I am so thankful I had good years before all the concerns and tasks with having BE/MAI.
Barbara

Thanks Barbara. I appreciate all the insight. Yes, I always look forward to the weekends! Retirement can't come soon enough. Good to hear you are thankful, I think that is also a key ingredient. It's easy to dwell on this disease but I must remember all I have to be thankful for!

Hi Mary, I have had MAC and was treated with the same 3 antibiotics you have taken. I tested negative after 4 months and remained on treatment for another year. I worked full time for 8 months out of the 14. In the early days I was very ill. The side effects from the meds were hard going. I took them daily. I went part time in September and rest on my days off. My MAC has just returned after a year of being negative. How do you cope with the side effects from the antibiotics? Life changes utterly. I avoid travelling and going to crowded places. I have been diagnosed with bronchiectasis too. Being a teacher is probably not helpful as I am exposed to lots of germs. Feeling pretty low at the moment. The thoughts of going on treatment again is getting me down. You are doing really well. Keep going. Take care, Niamh

@namd I am sorry to hear that your MAC returned. I can imagine how discouraging that would feel. From what I have read, that, unfortunately is not uncommon. You mentioned being on the antibiotics daily the first time, did you have cavitary MAC? From what I've read, the dang bacteria can hide, but especially in cavities if they are present. Also, I often read on this site about the importance of nebulizing with 7% saline (3% if you can not tolerate the 7) and to continue after being done with treatment just in case there is still some bacteria hiding out in the lungs. Did you do this after treatment stopped? I have been very fortunate to be able to tolerate all these antibiotics. I had some nausea in the beginning and used acupressure wrist bands which really helped. After a few weeks the nausea was gone and really I feel great. I am diligent with my daily probiotic and yogurt. I also stay away from lots of sugar and highly processed foods. Who knows how much of a difference that makes but I believe it helps. I do believe a healthy gut can prevent/heal many ailments.

Thank you for all the advice. I have never been offered the nebulized saline treatment. I have the cavitary form and as you say bacteria can lurk. I will be taking probiotics this time and will try the wrist bands I used to use them when I went sailing and they worked! I hope you continue to stay well. Thanks

Nebulizers and 7% hypertonic saline can be purchased without a prescription, if that interests you. I also have the cavitary form so I'm trying to do everything possible to keep bacteria counts low. Mucus hypersecretion is my biggest issue. It's a daylong challenge, and overnight too. Best of luck to you.