@lmh7 Hi. It is called 'conversion' when a mac patient gets 'cured'. I hope someone who has had mac and it was gone for many years; will jump in and share it with us. I have been free of MAC for five yrs. I did, however, contract a pseudomonas infection in 2016 and that was quickly irradicated. I am staying infection free by taking low doses of monthly antibiotics. Because most of us have bronchiectasis as well; we tend to be prone to catching these bugs. Have you read about how to avoid re-infection?
I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
Welcome to the group. I'm sorry you need to be here, but I believe you'll find it a very helpful and caring group.
I don't have MAC-was thought to based on CT's, but cultures were negative, but am bumping it up.
Couple questions-was MAC in your lungs last time and is it also there this time? Are you confident with your medical team? Have an infectious disease doc?
Thank you Don, I am 20 days on the meds now and down almost 6 pounds! I am so nauseous it is hard to eat. I am not a complainer so this is such a new experience. I don't understand what the nebulizing 7% saline is but am trying to find it on the internet. Any information or thoughts on what i should get to try that would be appreciated. i have a call into my doctor now as a neighbor said there are anti-nausea meds? I need something if I'm going to do this for the next year! So thankful I found this site for a better understanding of what is going on! Ina
I can’t speak about antibiotics. I have MAC and pulmonologist is doing wait and see. I will say that nebulizing with 7% saline and using Aerobika for airway clearance seems to be the gold standard in dealing with BE. I recommend joining some of the support groups on FB for BE. I have learned a lot from them, more than from my pulmonologist who is an expert on BE at a large hospital in NYC. Everyone is different but I think the nebulizing and airway clearance is what we all should be doing. Also, I used to get colds 2-3 times a year. I have not been sick at all for over two years since I’ve been doing airway clearance other than having MAC which doesn’t give me symptoms.
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@windwalker Hi Terri, Would you mind sharing which antibiotic you are on for pseudomonas? Thanks!
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I was free of mac for 5 yrs and recently came back. Im 58 yrs of age. No hiv, no aids. This time its desseminated.
Ainly in my lymph nodes. I am on the regime of drugs for 2 yrs this time. Any suggestions
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1 ReactionWelcome to the group. I'm sorry you need to be here, but I believe you'll find it a very helpful and caring group.
I don't have MAC-was thought to based on CT's, but cultures were negative, but am bumping it up.
Couple questions-was MAC in your lungs last time and is it also there this time? Are you confident with your medical team? Have an infectious disease doc?
I have a friend who had MAC and she was cured year ago. Maybe 15 yrs.
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2 ReactionsI can’t speak about antibiotics. I have MAC and pulmonologist is doing wait and see. I will say that nebulizing with 7% saline and using Aerobika for airway clearance seems to be the gold standard in dealing with BE. I recommend joining some of the support groups on FB for BE. I have learned a lot from them, more than from my pulmonologist who is an expert on BE at a large hospital in NYC. Everyone is different but I think the nebulizing and airway clearance is what we all should be doing. Also, I used to get colds 2-3 times a year. I have not been sick at all for over two years since I’ve been doing airway clearance other than having MAC which doesn’t give me symptoms.
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