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Possible causes of MAC/MAI Re-Infections
MAC & Bronchiectasis | Last Active: Aug 27, 2018 | Replies (59)Comment receiving replies
I'll be darned Terri if I can find where you said we all need to make a deal if we are cured to come back and let the forum know we are staying well. So I'll
post here.
I am 28 days off all drugs for MAC - off big 3. It feels great but I still have some stomach stuff as that long on antibiotics screws w our gut bacteria. Aside from that I'm good and trying to be positive about MAC Not returning!! Not welcome! I bathe only, don't go near anything that steams or mists. Mayo said I will get it from inhaling water. So I'm vigilant on that.
Deal- if I decide to take a forum break I'll be back. Either to tell you I'm still 'cured' or to get the help of the wonderful folks on here. We help each other. Knowing some people are doing well is great hope for us.
We do our best. Thanks all and peace.
Kay S
Replies to "I'll be darned Terri if I can find where you said we all need to make..."
Kay strand...thrilled for you!!! Keep us posted...tdrell
@kaystrand That is wonderful Kay. It would be great if those who got better would come back to the forum from time to time and cheer those on that are going through the treatment of the BIG 3; to tell them what IS possible.
Hello - this is Pamela in Boston. I finished up the Big 3 on May 1st after 18 months. I have bronchiectasis, MAC and pseudemonas. I was coughing constantly but about 3 months into taking the meds, my coughing stopped entirely. I had one bad case of pneumonia in March while taking the meds and that was due to being around my sick grandchildren who had really bad coughs. Then this July, when they visited again, they also gave me a very bad case of pneumonia...so word to the wise: even though the Big 3 can really remove the cough, we still have to be very careful around anyone who is sick. The 2 pneumonias I have had this year have in fact reduced by lung capacity and I am more breathless since getting the last pneumonia. Whether I will regain some lung capacity is an unknown. I had no serious side affects while on the Big 3 for 18 months, other than being tired, loss of appetite and weight loss. It's now been 5 months since I stopped the Big 3 ( for the 2 pneumonias I got, I was put on Levaquin and it cleared up within a week). I am not coughing at all and feel pretty strong overall, except for the shortness of breath when I exert myself. For me, the Big 3 did really help but I also know that once we are diagnosed with MAC and pseudemonas, they never go away - they just linger and we have to be so careful. Best of luck to all of you who are now taking the Big 3 and I hope they will help you the way they helped me. Pamela
Pamela
How was Pseudonomas found? How do they think you got that? I took big 3 also and off 6 weeks. Hoping for the best for all of us with active and "non active" MAC. I call it "cured"! My Mayo doc says some patients never get it back.
Kay S
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Taking probiotics has helped my stomach while on the Big 3. I had some loose stool and blood and eyes checked regularly and no problems - no hearing problems either.