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Thu, Sep 5 2:54pm · Extreme fatigue with MAC in MAC & Bronchiectasis

Jane,
Im so sorry to hear of all your going through. I can tell you of my experience with MAC that the exhaustion has had serious bouts to the point of barely wanting to or being able to move. My last bout of it I went off the big 3 as prescribed and it seemed to stop the cycle. I think only a pulmy with experience in MAC could tell you whether to get treated. I have a feeling its the meds that cause the fatigue .I could be wrong. ONly the truth is the meds are very strong and everyone has there ways of adapting/ or not, biologically that is. For me I think the meds cause the fatigue only if I get the flu and Im not on the meds I dont pick up again and usually its a sign that the bacteria are still lurking around. The other thing that helps with the fatigue is finding just the right balance of exercise and good solid rest are I think top priorities in steering clear of possible problematic side effects.
I hope you are under good care that you trust and keep up the work, its worth every moment.
Deborah

Wed, Jun 12 7:43pm · fatigue and muscle weakeness in MAC & Bronchiectasis

Thankyou Jennifer, When I read your post I felt relief that someones out there and notices and to know you are thinking of me is even though I dont know you is soothing. Thankyou 🙂

Sat, Jun 8 9:25am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Phyillis,
Good to hear from you. Im so glad the phnemonia cleared! What's good news is the bacteriais very slow growing so it gives us a chance to make it dealable with. Im on month 7 of big three it's a slog another year to go! Energy levels can really take a swooping slide at times. Getting better though at keeping a 'working modus operandi' going it's a skill! Keep up the good spirits 🙂 Deb

Thu, May 30 12:47pm · fatigue and muscle weakeness in MAC & Bronchiectasis

Thankyou so much. Another 8mths of the big 3! Does anyone know what cause this immense fatigues? Can it be harmful is the main question? Im so grateful for this o have no family at all no children my dad died this Jan and I have to run a business a home Im grateful I can take off without getting fired!!! It's no joke!

Thu, May 30 8:51am · fatigue and muscle weakeness in MAC & Bronchiectasis

Hi Everyone,
I have been told in a casual (non appointment) conversation with a physician at the gymn 'you have to fight ie keep exercising". I seem to just drag when I dont exercise I get more than weak and so incredibly fatigued. Does anyone else get these symptoms I belive it is from the big 3 Im on. ITs hard to tell if I should rest or move (seems like rest can induce the feeling of the need for more rest) and as much as this is true for inactivtity it seems 100 times worse on these these meds?

Mon, Feb 4 8:37pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Phyllis,
Good to hear from you. I take liquid (refrigerated) probiotics ie live not freeze dried I just reckon they are more easily biologically absorbed! I take capsules when away the more more per billion per capsule and I only go to Whole Foods for them.
When I first took the ethambutol I had my eyes tested every four months for year. It was expensive but it to give me a baseline for what I can tolerate . I was fine no problems. I haven't had my eyes tested and I'm not going to unless I have to be on the big 3 for over 6 months thi time. Last time I was on the big 3 for a year every other day. As much as it's the optic
Nerve that can be affected it's the possible colour differentiation problems that can be more probable. Only we are all different. Id say check it out with the eye exams to be conservative one can't loose!
Hang on there!

Sun, Feb 3 8:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!

Dec 6, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Deby,
How great you recovered. I needed to hear.. Im on a second round of antibiotics after a year of gbeing off them. Only this time the dosage is daily at 1650mg daily. I feel so weak! Did you feel weakened at all. I think the ethambutol makes me a bit less coordinated physically and decreases concentration. Im working part time and keeping that way for a while. Are you willing to talk by phone? I dont want to be in anyway intrusive. Only Its so good to hear positive news! Thanks, Debminuet