NTM Mac 1 / Fatigue

Posted by sisterpulse @sisterpulse, Dec 29, 2023

I am 77 and was diagnosed with Bronchiectasis June 2023 followed by pseudomonas, now treated.
August 2023 sputum culture grew NTM Mac 1 and probably will have the big 3 regime in the near future.
My query is: if the Mac 1 is eradicated ?? does the fatigue continue?
Many thanks, from the UK.

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@sisterpulse Welcome to our MAC & Bronchiectasis community on Mayo Connect. I may be biased, but I think it is one of the best places to learn about how to live your best life in spite of these two conditions.

As for whether the fatigue continues after treatment - for me (off antibiotics for 4 years now) it gradually got better. I still have less stamina than than before, but I have other conditions that tend to drag on me.

Has the pulmonologist or a respirologist started you on a routine of daily air way clearance, possibly using a saline neb? If so, and your MAC infection is not too severe, you may be able to avoid taking the Big 3 antibiotic regimen.
Sue

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@sueinmn

@sisterpulse Welcome to our MAC & Bronchiectasis community on Mayo Connect. I may be biased, but I think it is one of the best places to learn about how to live your best life in spite of these two conditions.

As for whether the fatigue continues after treatment - for me (off antibiotics for 4 years now) it gradually got better. I still have less stamina than than before, but I have other conditions that tend to drag on me.

Has the pulmonologist or a respirologist started you on a routine of daily air way clearance, possibly using a saline neb? If so, and your MAC infection is not too severe, you may be able to avoid taking the Big 3 antibiotic regimen.
Sue

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Thank you Sue, for your comments. I am using the Acapella device twice daily for airway clearance and will see an NHS respiratory physio in March, for a saline nebuliser trial. A recent CT Thorax scan and pathology will be evidence for review with the Respiratory consultant end Feb.
I am hoping to avoid the big 3, as the results are so variable and I have read the side effects of the big 3, can be most unpleasant.

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I have MAC, and did not initiate treatment with antibiotics, but started nebulizing 7% saline and airway clearance in July. In November I finally felt less sick and less fatigued. I had started coughing up more sputum, my thought is that getting some of the yucky stuff out of my lungs has helped me feel better.

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Thank you for sharing your experience.
I will definitely persevere with the airway clearance, eat more fruit/ green veg and exercise! Roll on March when I get the NHS saline nebuliser.

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@sueinmn

@sisterpulse Welcome to our MAC & Bronchiectasis community on Mayo Connect. I may be biased, but I think it is one of the best places to learn about how to live your best life in spite of these two conditions.

As for whether the fatigue continues after treatment - for me (off antibiotics for 4 years now) it gradually got better. I still have less stamina than than before, but I have other conditions that tend to drag on me.

Has the pulmonologist or a respirologist started you on a routine of daily air way clearance, possibly using a saline neb? If so, and your MAC infection is not too severe, you may be able to avoid taking the Big 3 antibiotic regimen.
Sue

Jump to this post

A good question. My fatigue is perhaps just a wee bit better since I have started treatment 12 months ago. I take 2 antibiotics and use airway clearance techniques. My last 2 sputum samples did not show MAC. In other words, there has been no dramatic improvement in fatigue. I am hoping to stop the antibiotics in March, after my lung scan (if it shows good results. Take care,
Diane

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The lung diseases do permanent damage to our lungs. Antibiotics are usually needed to stop further damage. ACT's help remove the sputum build up and increase our lung function. Life becomes limited for most of us but we learn to manage it as best we can with some help from our family, friends and the medical community.

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