@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.
@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?
@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.
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????
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.
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 --
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.
@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!
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.
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.
Hi DC,
I moved your message about MAC physician recommendations at Mayo Clinic in Rochester to this existing discussion to connect you with @auntnanny@migizii@bluesplashgirl and others who have experience with pulmonology at Mayo Clinic.
Hi DC,
I moved your message about MAC physician recommendations at Mayo Clinic in Rochester to this existing discussion to connect you with @auntnanny@migizii@bluesplashgirl and others who have experience with pulmonology at Mayo Clinic.
Hi DC,
I moved your message about MAC physician recommendations at Mayo Clinic in Rochester to this existing discussion to connect you with @auntnanny@migizii@bluesplashgirl and others who have experience with pulmonology at Mayo Clinic.
Connect
Connect
Like
Helpful
Hug
@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????
-
Like -
Helpful -
Hug
1 Reactionwindwalker ----- 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.
My pulmonologist At Rochester retired. I loved him. Anyone have a favorite for BHD, broncheactesis and MAC? Thanks!
Hi DC,
I moved your message about MAC physician recommendations at Mayo Clinic in Rochester to this existing discussion to connect you with @auntnanny @migizii @bluesplashgirl and others who have experience with pulmonology at Mayo Clinic.
-
Like -
Helpful -
Hug
1 ReactionI have Dr Teng Moua -- since 2014 -- I like him and I hope you find a great one for you.
-
Like -
Helpful -
Hug
2 Reactionsthank you!
Thank you!