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In shock after MAC diagnosis

MAC & Bronchiectasis | Last Active: Nov 1, 2022 | Replies (136)

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@megan123

@sueinmn....I also have psedomonas, mine being much more difficult to treat...tobi doesn’t wrk for me, but Colistin does...depending on your sensitivites as well makes a huge difference and how colonized it is...it is s very dangerous bacteria, and can be difficult to treat, as I’m experiencing...tks for the onfo

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Replies to "@sueinmn....I also have psedomonas, mine being much more difficult to treat...tobi doesn’t wrk for me, but..."

sueinmn --- I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough -- pseudomonas as usual. I took Levaquin about a year ago --- and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby -- and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan