Mayo Clinic Connect
I\'m wondering if anyone can recommend a physician who treats MAC at the Mayo Clinic in Rochester?
I have Dr. Teng Moua at Rochester as my pulmonologist and I think he is very, very good. Nice Gentleman
@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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Oh yes here I am in Sarasota Florida with the same symptoms you have sometimes I blame it on eating out but it's erratic it comes back I go on antibiotics and it goes away then it comes back. I don't know what Cipro is but I have taken the three antibiotic cocktail for two years in a row and felt wonderful on it even cleared up a bowel problem. I'm 75 years old in this came on about 10 years ago comes and goes right now my sputum is being checked for Mac I actually hope it's Mac because then I can go on the cocktail and I'll be fine for a couple years. It sure does make you tired
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karensarasota…… I'm 77 years of age so we do have a lot in common — old age for starters. I've never been treated for MAC but worry about it because my pulmonologist at Rochester told me upfront that it was hard to treat and that if it had to be — I would be ill and it was very long term. So, I've prayed to not have it. But, I'm a bit perplexed in that I thought after three weeks of Cipro I would be clear and it felt I was…… then three days later — seriously back. I'm finishing up another week of it but do feel apprehensive. Are you with Mayo's in Florida. I live in SE Kansas and it's a 10-hour drive up there but I've gone three times. I'm very pleased with Dr. Moua and he's good to keep track of me with the portal from there. Very kind.
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@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.
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windwalker —- thank you for your note. I saved it in my file. I had used Cipro as it was one recommended on the sputum analysis — have used it two or three times. This time, I'm wondering if I might need a different one or if it means MAC is involved. I won't know that for two more weeks. I gathered from listening to Dr. Moua that he, too, doesn't always go for the big three treatment. He will try other things first. After 8 months of not coughing, I got very spoiled and just have felt depressed when it came back. I know it's not curable, but it was by far the longest remission I had enjoyed. Prior to that, only 3-4 weeks before I would be put back on an antibiotic so I think I was about to start dancing in the street — thinking I was so much better. One other thing….. during the time I wasn't coughing, my nose was running and I could feel nasal draining so I started taking 4 Benadryl daily. I wondered if that added to the length of remission and had begun to think Benadryl itself was a miracle drug. (I had not used it in my lifetime previously). Guess not. Now, I wonder — could the Benadryl have kept the cough at bay and let the infection build up in my lungs — or did it play any part in the relapse. Just something I've considered. Wondering if you have any experience with it.
@auntnanny, Have read and been told by pulmonologists to use antihistamines sparingly.The reason is because they dry you up, and overuse can cause 'mucous plugging'. Ideally, we want the phlegm as loose and thin as possible to get it up and out. Coricedin (heart) is the best antihystamine to use as others tend to cause heart palpitations.
@auntnanny I just want to put this reminder out there that going on and off antibiotics can cause your mac/pseudomonas to become resistant. We def don't want that to happen!
windwalker……. thank you so much for the time you spend trying to keep us all on our feet
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@auntnanny, Jan, please excuse me for interjecting here. I remember how sick you were when you first joined Connect, and are having lung infections again of late. I am wondering if you shouldn't be on a regimen like mine; where you are on alternating monthly antibiotics indefinitely?
@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????
windwalker —– originally Dr. Moua felt I would be alternating monthly antibiotics but I had an 8-month reprieve and he apparently changed his mind with that. I have finished a cipro bout now and perhaps we'll see how long I can go without another flare. I'll come on and post whatever happens to me next. Thanks again —
@auntnanny Hi Jan. Yes! Please do keep me posted. It would be great of it never came back. Try mind over matter too. Tell your body and mac that you just aren't having it!
windwalker —– I've never been treated for mac. Obviously, there is "some" there but I assume Dr. Moua has felt it was too minute to worry with. I sent him my latest report about a week ago. He's usually not this slow so I'm thinking they have him over in the hospital now (which they do fairly often — critical care or something like that). I'm kind of anxious to see what he says when he reads last report. Hoping to hear this week.
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