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Fri, May 29 1:37pm · Could Mac treatment cause food to taste bad? in MAC & Bronchiectasis

@windwalker Thanks for letting me know that your experience with burning tongue finally let up. I've had the same aggravation from wine and tomato sauce, plus all citrus, and a few other acidic foods. It's encouraging to hear there may be an end to this and a bit more relaxation around food.

Mon, May 25 5:58pm · Two bits of good news!! (and nebulizing with saline) in MAC & Bronchiectasis

@toni1132 Hi. You asked about nebulizing with saline solution. Here's my story. After being with 2 previous pulmonologists over a period of 20 years who never mentioned nebulizing at all, I began working with a 3rd pulmonologist 3 years ago who suggested during my 2nd or 3rd visit that I nebulize with 7% saline. I had been diagnosed with bronchiectasis in 1997 and then with MAC in 2008, both diagnoses made by the first pulmonologst. I liked him very much and thought he was pretty well informed about my issues. I had to leave him because of changes in my insurance. The second pulmonologist was young and sweet and poorly informed about my issues. By the time I came to her I knew more about bronchiectasis and MAC than she did. She left her practice to work for an insurance company. This is all to say there are big differences in pulmonologists, differences in knowledge, skill, dedication and opinions. You have to find the one that is right for you. Nothing has made as big a difference in my quality of life as the nebulizing has. This practice works to clear my lungs, ease the strain on my voice, and reduce my coughing. But that's just me. i know from this forum that nebulizing daily with 7% saline solution doesn't work for everybody. Good luck in finding the doctor and the treatment that works for you.

Tue, May 12 2:07pm · Could Mac treatment cause food to taste bad? in MAC & Bronchiectasis

@marthachs Thank you, Martha. I appreciate hearing your approach and I'll try yogurt. I do use the Biotene mouth wash and at night I use Biotene gel just before bed. It seems to reduce the mouth dryness and the burning tongue somewhat. Yes, it's all an adventure — always some new development that sends me on a search. Thanks for your response.

Sun, May 10 5:40pm · Could Mac treatment cause food to taste bad? in MAC & Bronchiectasis

@hayn3705 I've been on the Big 3 since September 2018. A couple of months ago my doctor agreed to exchange the azithromycin for clarithromycin but leave the remaining 2 drugs unchanged. The reason for the change was that I was feeling so ill on the days I took the drugs and my CT scans showed no improvement – in fact things had gotten worse. So, why not try something different? I don't have any of the nausea, intestinal problems, and depression I had with the original trio. Also, like you, I had had a pretty serious lack of appetite and lost weight as a result. With the new arrangement, my appetite is back, food tastes good again, no stomach problems, BUT my tongue burns and my mouth is dry, especially throughout the night. I don't know what all this suggests. Maybe it just comes down to everyone responds to these drugs differently in terms of side effects and efficacy. If you find a way to eliminate the burning tongue and dry mouth, please let me know. Good luck to you!

Thu, Jan 30 11:06am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

@pal131 I'm sorry to hear what you've been going through with bronchiectasis and MAC, and I relate to your story, having dealt with the same conditions for several years. Like you I was reluctant to try the "Big 3" but eventually the deterioration of my lungs and the frightening appearance of cavities in the lungs convinced me that I should try a regimen that might slow down or stop this obvious progression. What I've learned from my own experience on the drugs and from the Mayo Clinic forum is that the experience is different for everyone: the drugs have different side effects for different people, the treatment for the side effects is unique to each patient, and the effectiveness of the drugs is different for each patient. To top it all off the odds of actually eliminating the MAC infection are not encouraging. However, after you consult with a good, well-informed, wise pulmonologist and ID doctor, you may decide it's worth a try for you. Keep in mind that if you do decide to try it, and it's too hard on you, or it doesn't improve anything for you, you can decide to stop, and explore other options, though, admittedly, there are few. This experience is all about trial and error. I encourage you to have an open mind and consult with the best doctors you can find. In my case, after being on the drugs for 16 months, there is no improvement in my lung tissue, but I have more energy (on the days when I don't take the drugs), I cough hardly at all, and I contracted not one virus for 13 months. (I was getting a cold or flu or having a flare-up about once every 3 months before the drugs.) The drugs have not been fun for me but I've learned ways to tolerate them. Wishing you the best.


@becky33 You've been through so much! Congratulations on reaching this point of freedom from meds! Wishing you continued good health going forward! Olivia in California

Apr 2, 2019 · newcomer in MAC & Bronchiectasis

@pinkwarrior Hi Pink, welcome. I'm so sorry you have already been through so much and now you're looking at another challenge, more medicine. However, you have come to the right place. There's a lot of information and a lot of hope here. People more knowledgeable than I will give you advice about how to navigate this site to find the information you're looking for. My advice (having dealt with a bronchiectasis diagnosis since 1997 and MAC diagnosis since 2008) is make sure your doctor is experienced when it comes to these specific conditions. Some pulmonologists don't know much about either condition. It all depends on how advanced the bronchiectasis is and whether the MAC is simply present or doing damage. National Jewish Health in Denver and Mayo Clinic are the places that offer the best resources related to bronchiectasis and MAC. But there are many excellent providers throughout the country. I would say, chin up. This is not the end. There is help for you. Be willing to find the best care and be your own advocate. Eat well, rest, exercise, practice good lung hygiene and you can maintain a good quality of life despite these conditions.

Mar 21, 2019 · tips for travel in MAC & Bronchiectasis

@taya Hi Taya, I've made 4 European river cruises with bronchiectasis over the last 12 years. The great thing about river cruises is their ability to accommodate people with a variety of capabilities. If you need to join the "gentle" walking group, you can do that. If you need to hear the lecture but tour on your own, you can do that. You won't get lost. You'll want to use your nebulizer in your state room, and no one will be bothered. I'm sure you won't want to bother other passengers with your cough, but the most important thing is to let them know your cough is not contagious — that's what they'll be worried about. If you have a bad coughing bout, you should probably move to your room until it settles down. As long as this is something you want to do, I can assure you it can be done, and you will have a great experience and learn a ton. Asking your doctor for advice well before you leave is a great suggestion, and of course make sure you travel not only with the medicine you do need, but also with medicine you might need. Bon voyage!