Pulmonologist versus Infectious Disease Dr

Hi,
I’ve been living with the “ticking time bomb” for 6 yrs. I also have minimal symptoms & have never taken the “big 3”. My pulmonologist referred me to an ID Dr. several years ago, but he did not feel my condition warranted treatment (at the time I was regularly coughing up blood). I started nebulizing sodium chloride (3% initially, then 7%) & I really believe that has helped me stay healthy (no colds, flu, or Covid-fingers crossed). I would speak with the ID Dr. about what she would recommend. Regular exercise, a healthy diet, & 7-8 hrs of sleep are all part of my treatment plan! Take care, Linda

@bbeers I don’t know where I’d be without my team of ID doctor, pulmonologist, and lung surgeon. Way back when I was diagnosed with MAC ( 2016) my pulmonologist told me to go to infectious disease. Sue said it well. We really need both to manage MAC - a team. Mine always communicate with each other about me. Someone from the team has contacted me every few days lately because I am struggling with RSV . Having a team is best because “two heads are better than one”. They can discuss your unique situation and share ideas. If you aren’t able to have that team approach your ID doctor would be most knowledgeable about MAC and treatment. You need that! Irene5

Thank you for responding Irene. Sorry to hear you have RSV now on top of everything else. Were your Dr's at the same hospital or clinic. Mine are not. Take care and feel better soon.

I'm newly confirmed for MAC and will start big three after Christmas. Do most people take all three at once? Or can you take one at breakfast, one at lunch, and one at dinner? I was hoping to isolate side effects by taking separately. I need to go back to my ID to confirm before I start.

I have been in the big 3 since August 23. I was told I could take together or not. I started taking all three at night … 2-2-1/2 hrs after good. So close to bedtime. I’ve no problems at all. I was prepared for some sort of reaction to something… but pleasantly surprised. MWF between 8-10 pm. I didn’t start taking any meds until the second CT showed the bacteria increasing. So, 6 months down…18 to go! Can’t wait for that first glass of celebratory wine! Good luck!

@bbeers I don’t know where I’d be without my team of ID doctor, pulmonologist, and lung surgeon. Way back when I was diagnosed with MAC ( 2016) my pulmonologist told me to go to infectious disease. Sue said it well. We really need both to manage MAC - a team. Mine always communicate with each other about me. Someone from the team has contacted me every few days lately because I am struggling with RSV . Having a team is best because “two heads are better than one”. They can discuss your unique situation and share ideas. If you aren’t able to have that team approach your ID doctor would be most knowledgeable about MAC and treatment. You need that! Irene5

I have been in the big 3 since August 23. I was told I could take together or not. I started taking all three at night … 2-2-1/2 hrs after good. So close to bedtime. I’ve no problems at all. I was prepared for some sort of reaction to something… but pleasantly surprised. MWF between 8-10 pm. I didn’t start taking any meds until the second CT showed the bacteria increasing. So, 6 months down…18 to go! Can’t wait for that first glass of celebratory wine! Good luck!

Thank you for sharing your journey with me. It sure helps to know that there are people who are tolerating the Big 3. Best wishes to you for a speedy recovery !!

I will add my dr suggested I get something called an acapella. It’s the opposite of a spirometer. Instead of breathing in and measuring, you breathe out. He said it wasn’t a have to do but a good to do. Keeps the lungs open and moving air. I keep by my bed and use it when I think of it but ideally should be doing it a couple/few times a day. Takes minutes, that’s all. Bought it on Amazon.