Discontinuing MAC antibiotics

Thank you Sue for responding and yes very rough. I so believe my doctors don't understand how bad these make some of us feel. I had a sputum culture done 2x and waiting on result s which can take up to 6weeks. I am praying there negative. I have asked for a break or too go 3× week and my ID doctor discouraged as my cavity was too large and all over the place. I am trying to wait for the 2 different sputums as her pointed out I have only been on the meds 2 months. I expressed since starting I am way worse now than before starting. I started looking up appts at mayo but everything is so far not sure what other lung centers out there and can you please suggest ideas on how to change the way I take the 3 meds and Ariykace as everything I have read is when they 1st started meds, what about 2 months in? I currently take them in the morning and the rifampin and Ariykace in the evening before bed. Should I try taking all at night? Any suggestions will be appreciated. Thank you.

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My 1st culture just in and negative. Praying my 2nd one submitted is also negative.

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Sue, thank you and WOW! I made a huge assumption (and mistake?) that the ID Doc I was being referred to by the Pulmonologist was a specialist in MAC. I never even asked if he was! Also - no- there has been no discussion of a daily airway clearance routine or any other treatment beyond these three antibiotics. Again, if I don't know to ask, information has not been offered.

I did call today and said I needed to talk about other options - hope to talk to a human being at some point. In the meantime, I have taken myself off this approach. I expect I will feel much better in 24 hours. I have a lot to learn here! Thank you for helping to educate me. Pat

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Cold turkey! I never had a negative culture, just got to the point where I could no longer tolerate the side effects and my lungs were looking "better".
I have stayed healthy for 20 months now with 7% saline nebs, mucus thinning meds and airway clearance.
Recovery from the side effects took another year, but I began feeling better within about 2 weeks. I don't know if I would ever take the big 3 again...
Sue

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You said you took mucus thinning meds.
What did you take?

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I took, and still take, guaifenesin (without other ingredients) and N-acetyl cysteine (NAC.) This is something you should discuss with your doctor as far as dose and safety for you.
Sue

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I take NAC. He just increased my dosage to two twice a day.
I was prescribed mucinex in hospital by doctor on call. But my pulmonologist did not recommend it

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I find the Mucinex does more to help than anything else I have taken. With 4-6 glasses of water daily it thins the mucus - before using it I had a lot of problem with mucus in my sinuses and ears too. My pulmo was skeptical too, until I explained how much easier it made clearing out the crud. Did they say why it wasn't recommended? Note- I only use plain guaifenesin - no decongestant or cough suppressant in it.

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No, just that he prefers not to use it..
But if it works for you then that is good....
Do you have thick sticky mucus?

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Yes, untreated my mucus has almost the consistency of rubber cement. It is a family characteristic - my Dad and 2 brothers, my brother, one daughter, now my grandson seems to have it. My daughter was actually tested for CF genetic markers because of it. (No CF)

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