Are your doctors MAC experts? The reason I ask is that treatment guidelines state that meds should continue until 12 months post initial sputum conversion, so a year would be the very minimum.
Hi, I don't know that I could say my doctors are MAC experts but I think they are or have become very knowledgeable about MAC since my adventure started as they have known about everything I have asked about. They both indicated the treatment had some side effects ~ I just did not realize how bad it could make you feel and how my body was going to react. My doctor is having me change the dosage to three times a week which I am starting today. I'm hoping my body is able to adjust and I am able to cope with the side effects! I am determined to do whatever I have to to get better!
Knowing and understanding what is going on helps so much! I am so glad I found this website and am grateful for all the information you have shared. Thank you so much. Ina
NJH recommend taking a high quality probiotic if you're on the Big 3. Mitigates risk of gut issues. Since the antibiotics are killing all bacteria, good or bad, you are essentially nuking your gut biome with every dose. I am drinking homemade kefir in addition to sauerkraut and a probiotic. Was using Jarrow, but someone here mentioned 'Dr Ohhano', so I just ordered it after reading the rave reviews.
Ina, somewhere along the way I read a bit about the pivotal role of our "gut" in our overall health. It reminds me of the old quip "if Mama ain't happy ain't nobody happy." More to the point, I came across something called the "gut brain axis" and the "gut lung axis." Apparently it's to our benefit to keep our gut "microbiota" healthy, as there is some sort of interaction between the gut and the lungs. And somewhere else along the way I came across something suggesting that our gut just relishes fermented food. So, "happy gut, happy lungs." Now I'll wait, full of anxiety, anticipating a post informing me that all this is a bunch of balderdash that has long-since been debunked. Grins, Don
I think of everything we do to improve our overall health - good diet, adequate rest, exercise, airway clearance, 7% saline, probiotic supplements and/or fermented foods, avoiding ill people, good mental health - to be part of the complex dance that keeps MAC at bay and keeps us off the dreaded antibiotic regime.
Each of us members on Connect has our own unique take on it, depending on the severity of our condition, our lifestyle, and how many changes we are willing to make.
I have been fortunate that airway clearance and healthy living have kept me relatively healthy for past 3 years, because the antibiotics were awful for me & at 18 months I cried "uncle".
I think of everything we do to improve our overall health - good diet, adequate rest, exercise, airway clearance, 7% saline, probiotic supplements and/or fermented foods, avoiding ill people, good mental health - to be part of the complex dance that keeps MAC at bay and keeps us off the dreaded antibiotic regime.
Each of us members on Connect has our own unique take on it, depending on the severity of our condition, our lifestyle, and how many changes we are willing to make.
I have been fortunate that airway clearance and healthy living have kept me relatively healthy for past 3 years, because the antibiotics were awful for me & at 18 months I cried "uncle".
I couldn't take antibiotics because of other health issues. I do 3% sodium chloride nebulizer and the vest, twice a day for 30 minutes. I've been seeing that 7% is very beneficial. I asked my doctor to try it and he said it would increase bleeding. I see him next month and printed out 2 reports recommended on here. I'll ask him to review and ask again for higher dose.
I couldn't take antibiotics because of other health issues. I do 3% sodium chloride nebulizer and the vest, twice a day for 30 minutes. I've been seeing that 7% is very beneficial. I asked my doctor to try it and he said it would increase bleeding. I see him next month and printed out 2 reports recommended on here. I'll ask him to review and ask again for higher dose.
Maybe you could offer to "step up" and try 5% first, if it goes Okay, then try 7%?
Unless you have a bleeding disorder, he might be willing to try that.
Sue
Thanks for the suggestion. I will ask him. I just occasionally cough up blood. I'm on blood thinners for life and sometimes that is the reason. Other times when my INR is low I still will cough up blood. I'm assuming this is normal with this disease, but not sure.
@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 on Azithromycin, Ethambutol, Rifampin successfully for many years. Recently the Azithromycin has been ineffective and I just started on Arikayce inhaled treatment. Too soon to see results.
Good luck
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Hi, I don't know that I could say my doctors are MAC experts but I think they are or have become very knowledgeable about MAC since my adventure started as they have known about everything I have asked about. They both indicated the treatment had some side effects ~ I just did not realize how bad it could make you feel and how my body was going to react. My doctor is having me change the dosage to three times a week which I am starting today. I'm hoping my body is able to adjust and I am able to cope with the side effects! I am determined to do whatever I have to to get better!
Knowing and understanding what is going on helps so much! I am so glad I found this website and am grateful for all the information you have shared. Thank you so much. Ina
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1 ReactionNJH recommend taking a high quality probiotic if you're on the Big 3. Mitigates risk of gut issues. Since the antibiotics are killing all bacteria, good or bad, you are essentially nuking your gut biome with every dose. I am drinking homemade kefir in addition to sauerkraut and a probiotic. Was using Jarrow, but someone here mentioned 'Dr Ohhano', so I just ordered it after reading the rave reviews.
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2 ReactionsThanks. It's worth a try. Anything to help without antibiotics.
I think of everything we do to improve our overall health - good diet, adequate rest, exercise, airway clearance, 7% saline, probiotic supplements and/or fermented foods, avoiding ill people, good mental health - to be part of the complex dance that keeps MAC at bay and keeps us off the dreaded antibiotic regime.
Each of us members on Connect has our own unique take on it, depending on the severity of our condition, our lifestyle, and how many changes we are willing to make.
I have been fortunate that airway clearance and healthy living have kept me relatively healthy for past 3 years, because the antibiotics were awful for me & at 18 months I cried "uncle".
What do you do to stay healthy?
Sue
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4 ReactionsI couldn't take antibiotics because of other health issues. I do 3% sodium chloride nebulizer and the vest, twice a day for 30 minutes. I've been seeing that 7% is very beneficial. I asked my doctor to try it and he said it would increase bleeding. I see him next month and printed out 2 reports recommended on here. I'll ask him to review and ask again for higher dose.
Maybe you could offer to "step up" and try 5% first, if it goes Okay, then try 7%?
Unless you have a bleeding disorder, he might be willing to try that.
Sue
Thanks for the suggestion. I will ask him. I just occasionally cough up blood. I'm on blood thinners for life and sometimes that is the reason. Other times when my INR is low I still will cough up blood. I'm assuming this is normal with this disease, but not sure.
Lorraine
Sue asked, “ What do you do to stay healthy?
Hi Terri, Would you mind sharing which antibiotic you are on? Thanks!
I was on Azithromycin, Ethambutol, Rifampin successfully for many years. Recently the Azithromycin has been ineffective and I just started on Arikayce inhaled treatment. Too soon to see results.
Good luck
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