Elevated Temp and Fatigue

Yes, off and on for years. Needed naps too, when I felt like this. Finally MAI got bad enough to have to take the meds. Now on the meds the fatigue is so much better. I have been told I will always have the MAC, but if I can beat the thing back, maybe it will take a few years to return to the state I was in - and maybe if I keep up the good work of air clearance I can stall it off. It's all kind of a drag. All the self care I mean.

@ursala7 It is a drag, completely. What kind of meds are you taking for it, if I may ask?

@loyse Right now, Brinsupri, Ethambutol, Rifabutin, Azithromycin, and Mucinex. And of course, albuterol and saline.

And do you also use a device, like an aerobika? I am glad you're feeling better with the meds.

@loyse Thank you. I have a shaker vest, and the respiratory therapist said that would take the place of the aerobika. I do have the aerobika, but never got much action (mucus movement) out of it, I think because I have thick mucus.
Looks like you just joined - welcome. Are you newly diagnosed with Bronchiectasis and/or MAC?

Thank you. Yes, newly diagnosed but I'm sure it is not new. The diagnosis is from a CT, so for now I don't know what kind of NTM it is. I use an aerobika and it seems to do something in my case. I never coughed at all before using it, except for little dry coughs that went nowhere, but I sure do now! Thank you for writing! It can all feel kind of isolating, I find.

@ursala7 What are you using to get those deep breaths in and hold to help get the mucus up.
Also what are you doing to strengthen your muscles around the diaphragm.
Those that are considered well educated pulmonologists at NJH and Tyler all say it is good/best/helpful to also use the Aerobika besides the vest(s) to help with the deep breaths and hold to get the mucus up and out.
I know for myself doing deep diaphragmic breathing helps and so does drinking lots of liquids, water and broths, to thin the mucus.
Barbara

@ursala7 Ursala How long did you have MAI before having to start the antibiotics.?
Do you know how many colonies showed in your sputum in the beginning to what it was just before you started the antibiotics?
I ask because I have a low load of MAI, so far, and often wonder without taking the antibiotic how long I can go with seeing the colonies rise and begin having problems. We are all different but would like to hear how long you feel it took you to get the the point just before the start of the antibiotics.
Barbara

@blm1007blm1007 "Hindsight" as they say. What happened, is at about age 70 (7 yrs ago), I got diagnosed with Bronchiectasis. That pulmonologist didn't educate me much at all - wanted me to give sputum samples, but I had so little sputum and didn't know how to cough up then. Did a breathing test, and did fine. And I felt passable, for the most part, just fatigued. Pulm still should have suggested mucinex or respirator therapy to get a sample, but that's water over the bridge. Well, ignorance is bliss, and I did not follow up, because she did say something at that consultation about the remedy being 18 months of antibiotics, and at that point, I thought, uh-uh, not for me. I gradually, and I mean very gradually, developed more sputum. But I was very active and walked and it would come up when I would bend over, I'd spit it out a few times a day and all was good. That went on for about 4 years. Then about three years ago, I started getting an infection a year. I'd get treated, feel better and kept walking - a little more fatigued each time, and with more residual dark mucus to deal with, but in general all was ok. Should have gone back to pulmonologist, because this April and May 2026, I had a major exacerbation with oppressive, persistent pneumonias, fevers, sepsis, the works. Wouldn't wish it on my worst enemy. Lot's more damage has happened, which is what you do NOT want, if you want to keep on trucking in style - which, after reading all your posts and contributions, I hope you do! I don't know what my score was on the MAI reading. Everything else is visible, like "2+ gram positive cocci and 2+ gram positive bacilli and 3+ Haemophilus, and 4+ pmns which I guess is exceedingly high Neutriphils, so yes I was in a major flare and very sick. But I can't find anything that says what my MAI load was/is. I have a long way to go yet, but I've lost a lot of ground that I'll never regain.

@blm1007blm1007 I did get my Aerobika out today and blew on it off and on; I'm going to try to hone my skills with it. Some people use it while nebbing with the Aeroeclipse, which I tried, but oh, that's a big effort. I don't like the Aeroeclipse anyway, compared to the Pari nebulizer cups. There was a presentation by Dr. Pamela McShane, at a conference, in which she said she is not in favor of combining the Aerobika with nebbing. So I will do it while vesting.
My diaphragm and my pelvic floor are very weak. I have trouble with muscle spasms in the diaphragm sometimes, when I get down to clean up the floor etc. I'm trying to work on strengthening that. I also have coughing incontinence - boy that's a misery. Thanks for all you have suggested. I seem to work on this stuff most of the day, except when I am shopping for food that appeals. I can't leave the food up to my husband, or it would be all take out. And I can't let him cook it because the mess is just not worth it. If you are drinking all the broths, you definitely have a much better appetite than I do. But that's the Big 3s influence, I think. A good weight for me is 115 (63" height). But now I'm down to 100.