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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18 months two different times. I am an expert on taking the drugs by now. Going on them again. I have very few symptoms with my disease luckily except for fatigue. Here is my humble advise. When I went to the drugstore and first bought all those pills it was scary. I lined them up on my island and thought- okay guys, we're in this together and we're going to knock this thing. Attitude is everything I believe. I also gleaned advice off of these sites and it worked. I took Acidopholus probiotic everyday that I ordered online (patients swear by it) and a vaginal probiotic to prevent yeast. These drugs kill the good, bad and ugly. Your good bacteria need replacing. Always eat something in the morning before pills. If you go into this stressed, it will add to the side effects. Go into it determined!! The endorphins will mitigate it. I have had a happy life with MAC- travel, built at house, moved to another city, and still cook for all the holidays. Good luck!
Replies to "Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18..."
Thanks Connie - for your information. I am 75 years old - not so young - however a very young 75 year old. I like the advice to eat first before drugs. I have a doctor apart from my lung doctor who has a foot in both camps. She has decided to begin with colonoscopy which I have had. Now I am on high dose probiotic twice a day and a supplement called SAMe, which she believes mops up inflammation. I will take those supplements on every day I'm not on 3 antibiotics. I love reading and it is important to keep eyesight clear. I do have hearing aids, because of damage to my inner ear from a bad fall 10 years ago. I intensely dislike nausea (who does not). I'm also wondering about taking magnesium, which I always have, while on this regime. I have a life I love, enough friends and family for emotional support. Very aware I am embarking on an unknown journey.
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Hi Connie, I am curious, how old are you? I took the pills at 67-8 and they killed me. At first no side affects(one year) but then they all started piling on. I eat organic, work out, am fit but the azithromyacin wiped out bowels,(severe cramping, many bathroom trips, weakness) hearing, (tinnitus) eyesight, (glaucoma) etc. Now I am dealing with the fallout. The mac does get a little worse each year and little harder to breathe, and yes, fatigue, but still moving along, cruises, family gatherings, exercise. My main thing of course is not to get sick...Anyway, I regret taking the pills and am hoping something else comes down the pipe, an inhalant, etc. This is a brutal pill regime. I think you can do it if you are younger. Thanks xo hope to all of us!