Diagnoses

@tropauer
Welcome to Mayo Connect. I hope you'll find it as supportive as I have. We all seem to be slightly different but enough alike to share helpful ideas and support. I have BE (bronchiectasis) but so far not NTM (MAC) so I hope others will chime in to help answer your questions especially about the antibiotic regime for MAC.

Most experts think that these lung conditions, NTM infections and bronchiectasis, in otherwise healthy older adults don’t come from just one clear cause. Instead, they likely develop from a mix of factors, including a slight genetic tendency, airways that don’t clear mucus as well as they should, things in the environment you’re exposed to over time. In other words, it’s usually a combination of small issues adding up, and not one single reason.

@tropauer Have you had a CT scan to check for bronchiectasis? That often leads to susceptibility to all of the bugs you mentioned.
Also, do you have a knowledgeable pulmonologist on your medical team? In some cases MAC can be managed without the antibiotics, especially if the infectious "load" is low.
Did the ID doc tell you how severe the infection is, where it is in your lungs, or whether you have nodules or cavities?

Like Scoop said we are all alike in certain ways but different. It’s been really interesting being part of this group and learning how everyone is dealing with their disease. I was very overwhelmed when I was diagnosed with Covid 19, pneumonia and after a bronchoscopy Aspergillus and MAC. Since my ID doctor had not treated anyone with both aspergillus and MAC I chose to get a second opinion from Mayo. My aspergillus was treated with an antifungal for 3 months. Thankfully the mass on my left lung cleared up and the pneumonia resolved. We then focused on MAC. Per recommendation from my Mayo doctors I did watch and wait for about 10 months. It was decided to start treatment with the big 3 antibiotics due to changes in my CT scan. I’m 8 months into my MAC treatment with a few medication changes over the past few months. . It’s been helpful to just take things one day at a time. I’m not really sure when I’ll be finished with treatment but am really trying to focus on living my life. Today I went to the zoo with my granddaughters which was so much fun! I hope you have a good ID doctor and pulmonologist. I wish you the best of luck with your journey. Please let me know if there’s anything I can do to help.

@sueinmn yes, last October. No nodules, etc. and report said “no bronchiectasis”. MAC was detected via bronchoscopy, to date not based on sputum. I do have a pulmonologist. He concurs with my infectious disease doc to treat w antibiotics.

@tropauer
Curious what symptoms you had and what led you to the diagnosis?

@scoop Since last August/September, I have had colored phlegm, hard to clear at times. There was chronic coughing at first, but that's gone down considerably. Lots of ups and downs (took a lot of antibiotics, but nothing seemed to get me 100% over the hump). Eventually, I pushed my docs to give me a bronchoscopy. The bronchoscopy confirmed the steno, but also aspergillus and MAC.

@cpolich I go to the mayo in jax . Do you? I have been through a lot .

@smc17 I see my regular ID and pulmonary doctor in Nebraska but I went to Mayo in MN for a second opinion. I loved my Mayo doctors but it’s too far to drive. My doctors in NE are listed as an NTM center as well. I’m sorry you’ve been through so much. It’s a tough disease that’s for sure. I’m used to treating a condition/disease and then moving on with my life. I’m coming to the realization that this is something that I’m going to live with. I hope and pray that things start looking up for you. Do you have BE and MAC too?

@tropauer are your doctors talking about treating the aspergillosis? I was very quickly started on an anti-fungal (voriconazole). The MAC tends to be slow-growing and since my symptoms were mild we waited to start antibiotics. I think that they sometimes treat both simultaneously as well.

@cpolich no. My doc’s approach is that right now the treatment isn’t worth the risk of taking the meds - they didn’t see anything of concern on the CT.