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What’s the youngest person to have MAC?

MAC & Bronchiectasis | Last Active: 5 days ago | Replies (29)

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@bayarea58

@atlantabec you mention you will eventually be on three antibiotics, I am assuming the standard “Big 3.” Is that daily? Or three times a week? Also given your cavities, has your MAC specialist raised Amikacin with you? I ask because with cavitary disease the guidelines recommend daily Big 3, with a few months of Amikacin in the beginning. My local ID doctor gave me an initial drug protocol recommendation that did not match the treating guidelines. I will be going to NJH soon for another opinion, but am curious in instances where others here have been recommended drug protocols by their doctors (preferably MAC specialists) that may not match the treating guidelines and the reasoning for that. I do think the Guidelines are just that, guidelines, and I think the experience of the specialist is as important, if not more important (to me anyway). Unfortunately my local physician is not a MAC specialist and his reasoning for not following the guidelines did not makes sense to me. Obviously where the standard recommended regimen is not tolerable, different approaches need to be evaluated and investigated. For others who may be reading this, I am not talking about those instances. But in an initial treatment scenario where there are no issues with susceptibility testing, if you have cavity disease and your MAC specialist recommended something other than the daily Big 3, with 3 months of IV Amikacin, I would be interested in hearing what the recommended protocol is and the reasoning given for diverging from the treatment guidelines. Thanks.

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Replies to "@atlantabec you mention you will eventually be on three antibiotics, I am assuming the standard “Big..."

My doctor is Colin Swenson at Emory - if you google him, look up his medical school bio. I'm not able to attach the link. Somehow I got very lucky to be local and was already in the Emory system and was referred to him. This is not only an area of expertise and reasearch for him, but he's also extremely patient and kind. I'm fortunate that this is my first foray into "chronic illness" and he's been great.

I'm starting (with a staggered start date) with the three abx (ethambutol, rifampin & azithromycin) and not that other you mention. When you say cavitary guidelines recommend the other, which guidelines? Can you send? This is all new to me and I'm an educated consumer but I'm reluctant to start suggesting other drugs to my doctor (I know you're not suggesting that). My disease is described as "mild" except for these two areas, but I guess that's kind of paradoxical.