Diagnoses

Posted by tropauer @tropauer, 2 days ago

I was recently diagnosed with MAC, discovered from a bronchoscopy. Took a while for this result to arrive, after also hearing about having Stenotrophomonas M. and aspergillus. Already have undergone many treatments for Steno, so infectious disease doctor believes MAC is likely the source of my problems/symptoms. First question is - how on earth do I have all 3 of these things?! I don’t have COPD et al.

The thought of a year long (at least) antibiotic regimen is sort of intimidating.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

scoop | @scoop | 2 days ago

@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.

Sue, Volunteer Mentor | @sueinmn | 16 hours ago

@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?

Nonnie | @cpolich | 12 hours ago

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.