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← Return to Extreme fatigue with MAC
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Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.
Replies to "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..."
@JustinMcClanahan Thank you for posting this link, Justin. This is good to know. I will tag another member I think may have looked into this as well. @nick52.
@windwalker -Terri-I have been thinking about your doctors statement about “treating” your bronchiectasis not MAC-since bronchiectasis doesn’t get better do you think he means he’s preventing it from worsening?
PS-hope you have a good trip to Mayo in MN!
Roxanne
Windwalker...the only thing that worries me is that the Mayo Clinic doesn't agree that it works, also mentioning the problems that it can cause...so much conflicting information....I bought it but haven't used it because of Mayo Clinic information
@rmason Yes! My doctor has def been successful in stalling the downward progression of my lungs deteriorating from bronchiectasis/mac. I watched my lung function graph go steadily down over the last 15 years. I am in a zone of being nearly needing a lung transplant. I am in the severe' range and have 37% lung fuction. I started treatment in 2013 at Mayo. After five yrs of going there; I am feeling and doing better than I had many, many years. Bronchiectasis is a progressive disease, the goal is to slow it down and keep infections from doing further damage.
@megan123 Hi Jen. I am not sure what these statements pertains to exactly.
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Thanks,Justin.