(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

My MAC has created a 6cm lung abscess which is being treated with four antibiotics. I am going to National Jewish in two weeks for further analysis. Does anyone on this site have an abscess in addition to MAC and if so how have you treated it? I have read that surgery is the most successful option.

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

@windwalker ..Hi Terri...do you use the acapella device for clearing your lungs? If so, which one?

I’m so confused need advise please