← Return to Physician recommendation at Mayo Clinic, Rochester for MAC

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@auntnanny

@windwalker888 I haven't written in a few months. Was diagnosed three years ago in Rochester after suffering for more than 5 years and using every specialist in 2 states. I had been given different antibiotics (according to what the sputum test would show when I was coughing up green phlegm. Would take them for 2 weeks and then I would be clear for two weeks. This went on over 2 years and then, after Cipro last October, strangely, I just didn't cough again until about 3 weeks ago. I honestly thought for some reason I just might not need meds again. Wrong !!! Of course, I knew it was too good to be true but my question here is "have any of you gone into a kind of remission for several months and then had it come back?" I'm sure you have but I've wondered about that. The sputum test this time showed pseudomonas again and I've finished two weeks Cipro -- seemed clear but after 3 days without it, I'm coughing again. So, I'm greatly disappointed. I don't know if MAC is involved. The sputum is being cultured and I won't know for another week or so. Just wanted to give my update and also wondering if others are lucky enough to experience a nice break in symptoms.

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Replies to "@windwalker888 I haven't written in a few months. Was diagnosed three years ago in Rochester after..."

@auntnanny, I am sorry to hear of the pseudomonas report. I actually caught it while on cipro for three yrs. I was put on tobramycin to get rid of it. Pseudomonas is a real cough producer. 30 days on tobramycin knocked out the constant cough. To answer your question about anyone being in remission; I have been in a two year remission. I just had a sputem test done recently, still waiting for results in about 6 weeks. From all that I have read from medical journals, heard from my Mayo dr, and read from member posts; it appears this mac/pseudomonas invasion never fully goes away. It is like rust, the infection will revisit us again, unless you are on constant antibiotics. My dr knows it needs to be constant, that is why he won't prescribe the 'Big 3'. He says less potent antibiotics given on a rotating schedule is best. This particularly pertains to those with bronchiectasis. This lung disease impairs the lungs, and leaves them open to bacterial infections. Avium bacterium (MAC) is very difficult to kill because of a strong, impenetrable 'bio-film'. Please everybody, keep doing your homework and learn all that you can about your disease. The more you know about what it is that has a grip on you, the better you can make wise decisions on how to fight it.

@auntnanny Did we ever discuss nebulizing tobramycin for your pseudomonas? You can ask your doctor if that is an option. Also, are you doing the nebulized saline?

windwalker -- thank you for always thinking about one of us. I nebulize abuterol -- followed by large cylinder of saline. I haven't been ill but do have coughing episodes which have been treated with oral cepro. I have read some of your postings suggesting tobramycin and will talk with Dr. Moua about that when I need more meds. Tobramycin has not yet come back on the suggested med list when doing sputum testing. Perhaps it's a newer one and for some reason they are not recommending it at this time????