@windwalker Hi Terri — I think there is a lot still to be learned. I think there has been knowledge gained but it is very incremental and not entirely conclusive. I think it took a while to come up with a clear definition of an 'exacerbation' part of the decision-making of whether to treat or not. Seems like that was a big deal for clinicians/researchers. There is no doubt that there has been substantial increases in infection rates in parts of the world that are alarming, but no one really knows why. I noticed that some of the data presented was somewhat dated so found it difficult to ascertain what was new. I gather the challenge for epidemiologists is that NTM is not a reportable disease or not reported well where it is. (I brought that up elsewhere)
As for treatment, It was clear that inhaled antibiotics is the next big thing although there was no mention of costs — which I hear is prohibitive as with all new drugs. No one at the conference seemed concerned so I gather there must be some way to deal with that. I saw a list of 7 ongoing clinical trials for these and a statement that none have been approved (I thought Amikacin was??) I learned that some antibiotics can result in QTc prolongation, something I have to watch out for. There was mention of a drug called Bedaquiline used for TB years ago and recently shown to be effective for NTM as well, with the caveat that it is dispensed from just ONE pharmacy in the US and that it costs $30K for 6 months (learned elsewhere).
There was a lot of information/data presented and sometimes no clear explanation of what it all means to us lay people. I was quite overwhelmed sometimes. It would have been nice to have occasional small breakout groups – will provide that feedback. I just learned the next world conference is in Vienna in July. Would be nice to go that one although twice in a year seems like too much…:-)
Mary

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@sayaboleh @annya I have the afflo vest. I wear it while nebulizing my 7% saline and I stop every 10 inhalations and do my postural drainage. I’m currently stable now & able to exercise for 2 months – thank you God.

I do get just a little bit of yellow mucus out of my lungs each day, and I think it helps a little bit with my sinuses as well. ( I have m. abscess, MRSA, and Acintobacter Baumanii colonized in my sinuses.) I use the Navage for my sinuses and it seems to have really made a difference.

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@sayaboleh Thank you so much for that recap Mary. Gee, it doesn't sound like they are making much headway with MAC. I appreciate that you took the time and expense to attend that conference. I plan on going to one in the near future. I would LOVE to go to the conference in Vienna!!!!

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@windwalker. Yes indeed. Vienna is a whole lot better than Grapevine TX I have to say (with apologies to our friends in TX) Unfortunately, my husband believes that my short jaunt to the conference has triggered my current afib. (unlikely) and contributed to my back injury. I forgot to include my imminent root canal to my list of non-MAC woes 🙁 When it rains….

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@alleycat @pfists @windwalker I have been finding it hard to produce sputum all along. But my MAC after 17 months of the Big 3 is still present on a biopsy I had a month ago. I am still waiting for sensitivity tests to return. I am not sure what the next step will be. I guess it will all be pending the sensitivity results. Any other suggestions from anyone? I have not felt like I did prior to the biopsy. I am not sure if it is physical or mental. I don't want to let this beat me physically or mentally.

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@jkiemen
Jo Ann
I'm so sorry that's not the news we wanted to hear from you.
Try and keep the faith and not to be too discouraged.
Hopefully they will tweek your meds after the sensitivity report and get the right combo.
I know there is a big body mind connection and just getting news like that can effect your whole body. So try and not let that happen.
Im sending you a special prayer for healing tonight.

Shari

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Hi again. I’m also interested in 7 % saline. I haven’t been able to get a prescription for it from my ID doctor yet. I’ll ask again next time and show her the paper AlleycatKate posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/). In the mean time, I found a “pocket neti Himalayan sea salt inhaler” on the web that’s about the size of a chapstick. Has anyone had any experience with it?

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Based on several comments in this discussion, I am interested in taking NAC. Thanks! However, I read that NAC can cause hemoptysis. Has anyone had that reaction to taking NAC orally? I was diagnosed with mild bronchiectasis (with a couple small nodules) and MAC after coughing up blood a couple of years ago, while lap swimming. Last month I again coughed up about 2-3 TBS of blood on going to bed. Other than that, I have had no symptoms and don’t take antibiotics. I am 72. I exercise and walk 2-4 miles almost every day and my spirometry/breathing results are normal.

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Hi…..I am new to this site….I do read all the posts but have never participated….I was diagnosed with MAC and Bronchiectasis four years ago… I took the Big 3 for a year . Then a year ago my FL pulmonologist did a Broncoscopy and found that MAC had returned….He did not put me on the antibiotics again…..but albuterol twice a day….In July I had blood in my mucus and coughing more than I ever had….Ended up going to the Cleveland Clinic in August….My doctor there put me on the 7% saline solution twice a day along with albuterol…Have a say in over a week my mucus was clear and I wasn't coughing or clearing my throat as before……Hope you give it a try….It worked for me…

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