I have learned more about MAC in a short time than I have from doctors since I was diagnosed. We have had the same Optometrist for 15 years and have a close relationship with him. I told him yesterday that I had noticed a ‘slight’ difference in my vision but a major difference in my hearing. I know now from this site that I should have had my hearing tested before now but can only move forward and get it tested ASAP.

I understand that MAC is rare but it sounds as if too many of us learn as we go. I had to go online to find out how to use my nebulizer. On my last visit I asked my pulmonologist’s assistant if they had treated anyone with MAC. This is my regular doctor who I’ve gone to since my diagnosis. Even though she told me they had I still question whether they have with all the lack of info. I feel like he is passing the buck for a better way to describe it. I have had sputum cultures and all show the bacterial infection. A chest x-ray in Dec 2022 showed twice as bad compared to Dec 2021. No one mentioned side effects to the three meds.

How would they do sensitivity testing? I don’t believe there has been any previously done. The first I’ve heard of including an infectious disease doctor was on this site. It is a case of learn as you go.

I live in Seminole Florida just below Tampa. What is HTM?

Thank you again Sue. I’ve learned more from this site and you than I’ve learned in 3 years from my doctors. It’s almost like they don’t want to tell you that this is not curable and the best we can hope for is remission. I understand that to a degree but I believe sharing important info like get a baseline hearing and vision test as soon as we are diagnosed would be important. My husband just said he has no faith in my pulmonologist. He is a very nice and compassionate doctor who I suspect has not treated anyone with MAC. I placed a lot of hope in the doctor he referred me to after the first appt but I’m not exaggerating when I describe him as Dr. Jeckle / Mr. Hyde because I walked out of my second appt with no hope. I’m doing everything I can to gain weight but being told I was going to die if I continued to lose weight after losing another 1 lb 4 oz in 6 weeks hit me like a ton of bricks. I was depressed for a few weeks but I finally decided to take everything I’m learning here and go forward. First - get my hearing tested. Second - find an infectious disease doctor. Third - who do I contact for sensitivity testing?