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Oct 17, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have not posted in a while. I have been off the MAC meds for a year. I am doing well. My meds were not stopped until I had negative sputum results, twice. I continue to see Pulmonologist every three months and have a chest x-ray every visit. There have been no changes suggestive of return of MAC. I have scarring that never changes. I feel well and have regain the weight I lost. I hope this is encouraging to other MAC patients.

Feb 17, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

Katherine, NO, I did not have a problem with yeast infections or thrush. The MAC antibiotics do not affect other bacteria. Only the mycobacterium are killed by them.

Feb 16, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Try not to be afraid. I had never heard of MAC and was so sick at the beginning. I had not found this forum until Inwas well on my way to being established. My doctor told me I could take the drugs at different times of the day or take them all at once. I experimented with times and finally started taking them all the first thing in the morning before breakfast as I could not notice feeling worse immediately after taking and just wanted to get it out of the way. I did not take Rifampin but was given Rifabutin. We all take basically the same drugs. Some 7 days a week and some every other day. My doctor gave me treatment every day. I feel like as long as our doctor is giving the same care, we do not have to go to a major medical to get good care. It gets better and is not intolerable. Just seeing the improvement on my chest films every month made it all seem better. Listen to your body and do whatever you have to to get through the first few months.

Feb 16, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

I started taking probiotics when I was first diagnosed with MAC. I mentioned it to my doctor. He told me it was unnessary to take them as these antibiotics did not affect the bacteria in the bowel. So, I did not and have had no problems with that. I was somewhat nauseated at first and had no appetite. It does get better. Maybe if you take them at different times it would help. I did that for a while and finally started taking them all the first thing in the morning. I I was, however, given Rifabutin instead of Rifampin. I have
not seen where anyone else took Rifabutin. I am 6 mos.off the treatment and Sputum culture is still negative. I’m not sure why my doctor prescribed Rifabutin instead of Rifampin, but I have done well after the first few months. Try to find what works for you and rest as needed until you can tolerate the medicine. We are all different.

Feb 14, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

I saw your post the other day. The treatment does get better with time. Rough at first. I was on meds everyday. Just do what your body tells you to do. If you need to lie down, do it. I was so acutely sick before diagnosis it took a little while after treatment began before I could return to normal life. I’m so glad I stuck it out.

Feb 13, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

Jan 11, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Last year, after being diagnosed with MAC, I was on oxygen for a while. I had a trip planned to Ireland. At the time of the trip I was off O2. My doctor was concerned about the flight but did not want me to cancel the trip. He recommended that I buy a pulse oxycimeter and carry a portable O2 machine with me. I did this and made the trip just fine. I only needed O2 when I got up and walked. Due to the altitude I did get short of breath on exertion. My doctor did not want me to let this disease control my life.

Jan 9, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I use MacBook. Exactly as you describe for Windows. I have been seeing a lot about taking Ethambutol all at once vs. divided doses. I am no expert but, I looked up the biological half life of Ethambutol and found it was 4-5 hours. Which means that in 4 hours the body will have 1/2 the original dose and in another 4 hours that original dose would have been reduced by another 1/2 and so on. So calculations could be made to try to determine the body load in 24 hours of each method. My doctor told me I could take all the big 3 at one time. That helped me not to have to keep my mind on medications all the time. A good routine for me.