Treating MAC without the big three?

That's wonderful Nancy, 86. That is so encouraging for many and especially for me with my BE with MAI.
You did say: "Maybe I am just lucky; but, I have avoided the big three by exercising, nebulizing, balanced diet and drinking water. I see my Pulmonologist every six months who I am doing good. I am careful to wear a mask when I work in my yard."

Does that mean you, at any time along the way, you have not had a MAC infection show up in sputum.... or.... yes MAC infection showed up and decision not to take antibiotics. " I am 86. I don’t do well with most antibiotics so fear having to use the Big Three!"
I want to be sure I understand correctly considering all. THANKS
Barbara
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I was diagnosed with a MAC infection in 2007 and was on the big 3 for 6 months , everyday. I had a terrible reaction, my liver numbers went through the roof and I was exhausted all the time, I lost most of my hair as well. Since that time I have been keeping things under control with good lung hygiene, diet and life style.
About 1 year ago MAC reared its ugly head again and my cough returned. I am determined not to go back on the meds, I am 78 now and can’t imagine dealing with the side effects at this point. I’m just doing what I can with the tools I have and hope for a new and better treatment to come down the like.

I agree, that's very encouraging. I've had BE for years and was diagnosed in 2024 with MAC A. I'm fairly certain I've had it since at least 2019. The cough comes and goes but about 6 months ago it had gotten worse. Four months ago, I started nebulizing with 7% twice per day. My appetite is okay but not what it used to be, fortunately I still have a healthy BMI. At least I no longer have aches and fatigue which I experienced last year. What seems to have helped my cough the most is daily airway clearances. If you google Dr Paula McShane and Bronchiectasis, she has a few videos for airway clearance, and one is specific to bronchiectasis and NTM. My cough has really improved. I do cough a little when I start nebulizing but if I slow down, I can control it. I had 2 CTs in 2024, 6 months apart and all nodules have been reduced in size per the 2nd CT, so maybe my immune system is killing it? I sure hope so! I will continue with the healthy lifestyle, nebulizer, air way clearances and if anyone has additional suggestions-I'm open to hearing. Kathy

I have had difficulty using 7% and am currently using 3%. Did you need to gradually built up to the 7? I would certainly like to be able to use it. Thanks for the info!!

Not really but it was irritating at first. I was only doing once per day for the first month. Building up is a good idea. Maybe mix 3% with 7% and try that. Or play with it; 4ml of 3% with a tad of 7% and just keep increasing the amount of the 7%. Good luck!!

Great idea, I’ll try that.

I'm a bit sensitive to 7 percent saline, it can cause bleeding, so I dilute it about 50/50 with .9 percent, with my lung doc's blessing. Usually little or no blood with this approach. Best of luck to you.

Thanks for the tip.

Kathy-
Another good post and also encouraging.
Great also that your BMI is good.
At this point I am almost working as hard to get my BMI up which is extremely important to having success with BE and a MAC infection. I had gotten down to nearly 90 lbs from 125 lbs and that was causing a couple of problems, including my often tripping over myself and nearly falling, however, no actual fall. With having put on twelve pounds that problem has stopped. Just goes to show us what being underweight can bring about. Thank goodness overall my appetite has been good from the get go....but the weight obviously came off. People who are trying to lose weight have a hard time, sometimes, believing it is most often just as hard to put the weight back on. A reasonable amount of olive oil and avocado oil with salads etc. is helping.
As I mentioned there was improvement on my last C Scan, however, to my disappointment Dr. McShane said there is a new area in the lower left lobe. I suspect I wasn't reaching the lower lobes with the percussion clapping. Also, I think I was concentrating more on my front than my back with the percussion clapping. I am working hard on that with the exercise, percussion clapping, massage hammer device, postural drainage, ACB and huff coughing. April is another C Scan at Baylor, Dallas and hope I will get good results.
Overall I feel absolutely fine, it is just the need to clear the throat of 'sputum' and especially after eating. I don't so much as 'cough' at those times, I suck it up, pull it up, and out.
Do you have the need to clear after eating?
Barbara

Hi Barbara,
No, I don't have the need to clear after eating. It sounds like you are doing a lot in terms of airways clearance. I don't do postural drainage, though something I will try. Are you now doing postural drainage for the lower lobe? I was online and saw different airway clearing techniques to reach different areas of the lungs. I didn't pay much attention to it, but I will revisit. I recently finished reading "Breath" by James Nestor. I've been working hard on inhaling through nose and slowly exhale. Also doing exercises whenever I think of it to inhale slowly (through nose), hold breath for 3 seconds, and exhale slowly for 5 seconds. As the weeks pass, I'm breathing better, and this week forgot my daily inhaler twice-highly unusual. 95% plus of his book is not instructional but you may want to google his you tube videos. I've also started (just today) a meditation for healing. I found this "Empowering the Power Within" meditation by Dr Joe Dispenza. A warning-he's highly alternative and may not be for everyone. It's a working meditation which requires some concentration and imagination. I'm going to do it every day for the next month and see if I notice any improvement. It's a lot of visualization with the immune system being the target. Good luck Barbara, I wish you the best! Kathy