(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@flib

@flib Wonderful news!
I take the clear Lungs
Extra Strength.
Blue Label
It says nothing about relieves congestion.
Don’t forget to order the Broncolin cough syrup to have on hand. Awesome stuff!
Keep up the great report! Jan

@flib Hi there. This post of yours made my day! I always feel badly for you when you are not doing well. So happy to hear that you are getting that stubborn cough under control & that you have some energy. You are another good testimony to the benefits of Clear Lung.

@sounder27 Hi. Click on my photo icon and read about my treatment plan. It included doxycycline and ciprofloxacin. I had a negative sputem test after 6 months on those two. I was clear of mac after 6 months on those. Then, I got MAI a yr later. Then, at 6 month testing, that was negative. Have been negative since 2014 of any mac. I did, however, get pseudomonas in 2016. Was put on inhaled tobramycin. After 30 days on that, it got rid of the pseudomonas. I have been negative for all bugs since 2016. I am on a low dose antibiotic maintenance plan to this day. It is a prophylactic (preventative) measure to treat the bronchiectasis.

Thanks, Terri. Another good day. Not as thrilling as yesterday's energy but a pretty normal day. That is, I could breathe and run errands and make a meal. Yippee!

Hi all. I was just reading about biofilm and bacteria and the place for phages. I know of a gentleman whose dr is looking into it for him and another who it worked for, very interesting .juhttps://www.microbiologyresearch.org/docserver/fulltext/micro/130/8/mic-130-8-2059.pdf?expires=1549056187&id=id&accname=guest&checksum=B3C5CF9F284CD61FC5CEAE6747F47B8Dst Lets hope this becomes a treatment.

I am new to this site. Just found it this morning. Two days from now I begin the 3 antibiotic routine - Monday Wednesday and Friday. I looked up on Google how people taking this medication manage. I'm not sure how to manage this mycobacterium page. My name is Bev and I live on the Gold Coast, near Brisbane Australia. It is wonderful to hear what other people with this issue have managed.

would love to more about phages and what they are and what they do

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!

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!