@windwalker I had gotten away from the nebulized saline treatments (in conjunction with a vibrating vest) but am getting back to that routine!
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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.
Thanks, Teri. I feel like I can never do enough research on MAC. i’ve Taken a break the last few months since being off the meds but feel like I need to be vigilant. My pulmonologist recommended a vibrating Aflovest, which I wear for 30 minutes twice Daily. Seems to loosen up chest phlegm a bit. Ah well, at least we’re not alone since we have this forum. Happy holidays to all! Carolyn
These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!
@ling123, I was diagnosed with MAC this past June. I have been taking Famotidine (Pepcid) for 7 or 8 years for GERD. I have rarely to never had heartburn or any symptoms I associated with it. However, I started having intermittent difficulty swallowing food around the time I was diagnosed with GERD, especially if I was eating fast or fairly big pieces of foods like meat. It was like the food got hung up part way down & was VERY painful. Fluids made it worse. The only thing that helped was going to the restroom & gagging myself until I belched or threw up. Turns out I had what is called an Esophageal Stricture, or a narrowing of the esophagus (tube) due to scarring from acid being washed up into the esophagus. This was found during an endoscopy & while there, the Gastroenterologist dilated the esophagus. I recently had another endoscopy & he dilated it again after finding the scarring was building up again & narrowing my esophagus. Sooo, I’d say yes, you can have GERD without knowing it. I have never had any of the tests discussed here, though.
Thank you all for this info/discussion! I just went to a new pulmonologist & he said the areas of bronchiectasis in the front, midsections of my lungs are consistent with GERD. I’ve taken 40 mg Famotidine twice daily & have had my esophagus dilated twice due to strictures (scarring) narrowing the esophagus making it tough for food to get through. I just ordered a wedge pillow & a book about GERD. Sounds like it is a BIG factor with MAC!
Terri @windwalker , I am 59 years old & thought I was on my way to 14 months on the Big Three UNTIL we added Ethambutol to the Zithromax & Rifampin mix. After just two doses, stabbing skull pains, wavy/unfocused visual disturbances convinced me otherwise. Docs were shocked at my quick, dramatic reaction. Off all MAC meds for at least two months. May not go back on them in spite of a MAC colony in one lung. Sure not gonna risk my vision!