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

@boomerexpert I just love it when I read where patients are proactively trying their best to be well again!

@alleycatkate You go girl!!

@alleycatkate I am happy that you are not suffering from symptoms of mac infection. Those of us who do or have can tell you it can get very bad. I would def look for a new dr. Your dr may not seem to care perhaps because he doesn't know much about mac. That is not uncommon. You also need to find a good Infectious Disease dr. You need one to work with a good pulmonologist. If you need help finding one nearest to you, I can try to help. You can also go to http://www.ntminfo.org and ask them for help with that also. I can tell you from my own experience; that I went years with pulmonologists never giving me a sputum test. Mac and pseudomonas ate away much of my lung tissue. My lung function steadily dropped year after year. I was always told it is COPD and given asthma meds. I now have 37% of lung function left. Am I angry about the improper care? You betcha! Those drs had my medical records with the history of mac in them! And still never tested to see if it had come back. I didn't know any better at that time to ask for sputem tests. I do now! I started treatment at Mayo in 2013 and they have halted the downhill progressive path I was on. I didn't do the BIG 3 that is typically used. Mine is less toxic and fewer days of taking meds. Like you, I don't like taking meds. But, sometimes the benefit outweighs the negative. I am asymptomatic now and have put my weight back on that I had lost. (142lbs down to 116) Please find a knowledgible docter! Hugs -Terri

@alleycatkate It is important to have in your possession; your lab results for mac. Keep it in it's own file. You will see why that is important as the years roll by. Ask that doctor what colony size your's is and what strain of mac it is, and what did the suseptibility test show? If he cannot answer these questions, then he is not the doctor for you. That is why you need a copy of the lab results. Your own hard copy can show you if it was even a complete lab test. Some local labs do not automatically do a suseptibilty test or test for strain of mac. Your thoughts?

Doc was excellent. I was on antibiotics for 1 1/2years, then on an iv drip from October of 2017 until march of this year. I have no symptoms and was taken off med even though I still have a very, very small amount. Hang in there. Things will get better, I promise.....

@sophie1019 Hi Sophie. I just finished a round of prednisone yesterday. Ironically not for my lungs as usual, but for a pinched nerve in my back. It is indeed great stuff! I don't know if I have a cavity or what in my right lung. All I know is, my entire right middle lobe is completely shot. They told me there isn't even any blood supply going to that area.

@1478 Hi there. I am hoping the discovery of that new 'crisper' gene will help us.

My husband takes a large Musinex pill every evening to help loosen his mucous. The pill, we call a horse pill, is huge and sometimes he has trouble swallowing it. Does anyone else take something similar to Musinex that is easier to swallow but still works well to loosen secretions?

What is the new “crisper” gene?

I was on rifampin, Zithromax and ethambutol for 3 weeks then sensitivities came back from lab and I was advised to stop rifampin and start rifabutin. After taking rifabutin on a Monday and that nightI woke up achy and with chills and low grade fever. Felt tired and lethargic the next day-vomited once. My MD thought it may have been a virus so advised to stop all antibiotics for two weeks and resume. After taking on Mon and Wednesday, again woke up with some achiness and low grade fever. Did not feel as bad as previously-but not good! I am now just taking Zithromax until I see my dr the 25th.
Any thoughts on ways folks have had success taking rifabutin?