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

MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)
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@nannette

Katherine, @katemn
I don't think your post is weird at all. I'm so thankful to see any advice on anything! My only drug I match with you is the Rifampin but that's my next drug to start so I will certainly try your method and all the probiotic times. That's interesting, too, about taking different probiotics and switching them around. I will definitely try that. Right now I just have Florastor, plan to eat yogurt everyday and drink 4 ounces of Kombucha everyday (that was according to WebMD if you're drinking it on a regular basis). And thanks for the link to the article...will read that later tonight! You're the best! These forums/online support groups have proven invaluable to me. I was hit with this diagnosis, not sick at all and completely lost and scared and now am feeling much better with all this great info from everyone. Nan

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Replies to "Katherine, @katemn I don't think your post is weird at all. I'm so thankful to see..."
EHLINY | @ehliny | Apr 26, 2016

Nan: I was positively diagnosed with MAC surgically in 2011 and I've never yet had any symptoms. Accordingly, 3 doctors (including the revered Dr A at Mayo) determined to NOT begin anti-biotic treatment. I am monitored regularly, and if I do get sick, we will begin treatment. <br />
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Katherine, Alumni Mentor | @katemn | Apr 26, 2016

Nan, I so agree .. I just wish I'd found a forum like this when I was first diagnosed .. I was SO scared! If I'd read the past notes on this forum It would have helped SO much in gaining knowledge about our disease .. it would have made my journey SO much more serene. Frankly that is why I spend my time on the forum .. it is kind of like my form of volunteering. Can't think of a better use of my time .. helping people on the same journey that was so scary for me! If I can help just one person it will be all worth it! Plus I am learning from everyone at the same time ... win/win!

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janovr | @janovr | Apr 26, 2016

Kathryn, You indeed are volunteering for many appreciative people on this journey. I found a new doctor who specializes in NTM through the same volunteer efforts of a lady in Atlanta who is now testing negative for NTM!<br />
So grateful and thankful for all of you!<br />
Jan in GA<br />
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