How to stay healthy with Bronchiectasis
Dear Friends,
I was diagnosed with the big B four years ago. I have been very fortunate and have what my Pulmanologis calls "flare ups" only occasionally...a week of antibotics puts things back in order. I am not sure what brings the flare ups on. Our home is hepa filtered throughout and when the forest fires come in the late summer I stay inside. I'm wondering whether you all use care to avoid certain environments or circumstances. Can you give me some advise regarding what to avoid? Thank you all in advance for any thoughtful advise.
Jane
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@jenniferhunter Hi Jennifer, Thanks for your response on NAC. It was suggested to me to supplement with NAC by my primary Dr. for lung health. I have taken as suggested for several years with no problems, only positive results. That said, I should probably never suggest anything without the caveat of checking with your Dr. first and checking the internet for negative responses. Thought well tolerated by most with a typical dosage, there are some reactions to note... I certainly hope it was not the NAC that made an issue for you. I checked and do see that it should be watched if you have asthma. Perhaps as you suggest, the combo of the detoxing medication and the NAC may have been the problem. ?? It does seem that your resultant problem with bile and a detoxing supplement warning you not to take with gall bladder issues (related to bile) could indicate the detox product might be at fault. Possibly as you suggest, the combo of the two together could have been the problem.... I am sorry that you had a problem and am sure that it was alarming to you. We should always be mindful when starting a new regime to be alert for any negative responses as you suggest. And in the future, I will certainly use more caution in any suggestions made....thank you. Even though we all have a disease in common our bodies are all quite different. I am sorry if the NAC had anything to do with your response as I am sure that was concerning and stressful for you. Happy to hear that you are feeling better. Thanks for your heads up on this.
Best, Kate
@alleycatkate That was a few years ago, and I was concerned of course. Thanks for your response. I liked your post and thought it was very informative, so no apology is necessary. I also try to be careful on how I word things and always present information and to leave a choice to the patient. I do explain how something can benefit, but also how something can be overlooked or missed, or even have a negative or unintended consequence, and I leave the medical decisions to the medically trained professionals. No one knows everything, and even doctors miss things, so as patients, we need to be vigilant about our health and question things if something doesn't seem right, but some times with questions, there are no answers. I just think that by sharing information, we all learn. NAC certainly has a lot of good benefits and there is a lot of literature backing that up. Thanks again.
@jenniferhunter ...Thanks, Jennifer. You are so right about being careful in advising others. And we all do need to proceed with caution when it comes to our health.
@alleycatkate I think we should tell others what we do, and works for us, and then they should investigate it for themselves. We are all very keen to help others which is fantastic, I have seen so many great ideas on here that have been a big help to me. Thanks Heather
@heatherf Heather...I have found so many great suggestions on this site but always do a little research before implementing. I guess I just assumed that everyone did that but I will be mindful in the future to suggest investigation. Yah...this site would not work well if folks did not chime in with what works for them. What a superior group of people...all so helpful and kind!! Happy Holidays, Heather. Love, Kate
I’m religious about keeping my hands away from my face and washing my hands frequently throughout the day. I also regularly use antibacterial wipes which I keep in my car. I try to nebulize 3% saline twice a day. So far, so good!
🙂
@alleycatkate Kate you are a wonderful member of this site with lots of great info! Happy holidays to you to Kate. Love Heather
Hello all
My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during this period. We stopped for 2 months and the results of the bronchocopy shows MAC again. Doctors restarted again the antibiotics with a possibility for surgery. Anyone aware of the best center for such a surgery? We are living in Dubai, UAE. Many thanks
Welcome back, @nnassiri. It's been a while since you posted last. I'm sorry to hear that your wife's MAC has returned after 2 years of feeling better. Not many members have had surgery for MAC. You'll be interested to read this discussion where @jenblalock shares her experience with considering surgery.
- Question regarding lung surgery https://connect.mayoclinic.org/discussion/question-regarding-lung-surgery-240dd3/
You might also be interested in these discussions that @windwalker initiated:
- You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
- Possible causes of MAC/MAI Re-Infections https://connect.mayoclinic.org/discussion/possible-causes-of-macmai-re-infections/How To - - Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/
Nnassiri, can you tell us more about what you were told about surgery and treatment options?