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Wed, Apr 17 5:07pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Tue, Apr 2 8:08pm · 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.

Thu, Mar 21 6:11pm · 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!

Mon, Feb 25 12:03pm · The big 3 antibiotics for MAC in MAC & Bronchiectasis

@megan 123 I've tried a lot of different strategies. It seems nothing is foolproof. I take the rifampin right after I get up in the morning on an empty stomach. I've never had any negative reaction to it. About an hour later I have a light breakfast, no meds. Then about two hours later I have lunch and take the remaining meds (ethambutol and azithromycin). It seems to me that the small breakfast before the lunch (when I take the meds) acts to sort of "cushion the blow." The one food that seems to help me avoid the cramping is boiled rice, so I try to have some rice with my lunch, which has made me a regular at a nearby restaurant that makes a dynamite teriyaki chicken plate that includes a portion of sticky rice. I can't tell you that I feel great after that, because I usually don't (fatigue and lack of appetite usually set in for a couple of hours, and sometimes, urgent need for a bowel movement but not diarrhea). But I don't get that painful cramping. BTW, I do drink ginger tea regularly on medicine days. Good luck! Experiment!

Sun, Feb 24 1:29pm · The big 3 antibiotics for MAC in MAC & Bronchiectasis

@windwalker Thanks, Terri. Intellectually I know the points you make. It's just emotionally soothing to hear I'm not alone. If there were something I could do to prevent it from happening, I would do it. I've been on the Big 3 since September, 2018, and since then I've coughed up blood (only a little but…) twice. When it happened last night, I started trembling and didn't stop for about 30 minutes. I think I expected that the meds would keep it from happening.

Sun, Feb 24 12:58pm · The big 3 antibiotics for MAC in MAC & Bronchiectasis

@megan123 Hi Jennifer, I'm sorry about the stomach cramping coming so late in the game (after 10 months on "the Big 3"). I just want to let you know that I experience painful stomach cramps with the Big 3, but only sporadically. I've tried lots of experimental protocols to get around the cramping (what I eat, when I eat, how much I eat, enzymes, probiotics, etc.). I still get the painful cramping every now and then. It's disturbing and it keeps me from wanting to schedule any social or work commitments on the medicine days, but in my mind it's just how my body sometimes reacts. Certainly everyone has a slightly different reaction to the drugs, but I wanted you to know the cramping is a pretty common reaction in me, and sometimes it doesn't occur at all. I hope you'll discuss it with your docs, and follow up if necessary (just in case something else is going on).
I'm not as much bothered by the occasional cramping as I am by the rare but persistent coughing up of blood. When it happens, I have a very emotional reaction: terror. I'd love to hear how other people who occasionally have a show of blood handle this experience.

Fri, Feb 1 9:17pm · New to Mycobacterium Gordonae HELP needed in MAC & Bronchiectasis

@jammer I was initially completely opposed to taking "the big 3" because I was told the treatment is worse than the disease. I was first diagnosed with NTM around 2008, diagnosed with bronchiectasis in 1997. But a year ago, holes started appearing in my lungs. That motivated me to get over my fear and give the drugs a chance. I was pretty uncomfortable on my "medicine days" for the first month or so. I kept experimenting with timing and meals and probiotics and now I have less discomfort on the days when I take the medicine. I'm now four months into the treatment, and I don't know what the future will be, but I have to admit that the medicine has improved my life: more energy, stronger voice, absence of cough, radical reduction of phlegm. Next month I'll have a follow-up CT scan to see if the holes are healing. I hate the meds, but I appreciate the results. Everyone is different, and your experience may be completely different from mine, but sometimes this regimen works. Maybe it's worth giving it a try. If it doesn't work for you, you can stop and try something else. You need a doctor who will support you and be open to alternatives.

Dec 22, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@xfirerose Hi. If you were referred to UCLA you can't be too far from me. I live in Redondo Beach. I've been on the Big 3 since September. For about the first month and a half I had terrible stomach cramps and various forms of repeated urgent bowel movements starting about one to two hours after taking the meds and lasting for several hours. I felt afraid to try to go anywhere on "medicine days." Gradually my body seems to have become more accustomed to the drugs. I still have occasional diarrhea bouts but they are usually single bouts, not repeated. I tried different strategies at first — taking the meds with a meal that included rice, taking digestive enzymes, trying an array of time schedules. After 3 months, I would say it has been just a matter of my body getting used to the drugs. When I asked my I D doc for suggested remedies for the stomach issues, he said most patients just figure out what works fir them because everybody's different. I know it may not help, but I think he was right. You just have to find what works for you. I hope you find your way and the drugs help. Olivia