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Newly Diagnosed Questions

MAC & Bronchiectasis | Last Active: Mar 4, 2023 | Replies (27)

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@bellsina71

Newly diagnosed with MAC and just saw my infectious disease doctor today. Although I have a 3.2 CM hole in my long, he said it's actually a mild case right now. He's put me on the big three, I start one every few days. He's hoping for a good outcome. I was wondering if anyone else has been requested to see an immunologist after getting this? He is curious to know how I would have gotten this, and doesn't believe that the cancer would have made my immune system compromised enough to have this. He believes that I've had it for at least a few years, but no one knows for sure. I was just curious if anyone else ever found out another reason why they may have gotten the Mac? Or went to an immunologist and they may not all just figured out what was wrong with them? I'm not sure what they actually even test for or do. If anyone has any good suggestions about the antibiotics let me know, I hope none of them make me sick! Thanks for all your help and support 🤗 Angela

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Replies to "Newly diagnosed with MAC and just saw my infectious disease doctor today. Although I have a..."

Angela - If I remember correctly, you have surgery scheduled this week. If so, please call the surgeon about whether you should begin now or wait until after surgery. Starting this antibiotic regimen in the midst of a major surgery may be very difficult, especially not knowing how you will react to each drug, alone or in combination with any pain meds, blood thinners or antibiotics the surgeon may prescribe.

MAC grows very slowly, so the risk of waiting a few more weeks to begin treatment is very low.

I think you may be asking whether to see an infectious disease doctor. The answer is "It depends" - if you tolerate the antibiotics well, and the MAC begins to go away (can take up to 2 years), there may be no need. If, on the other hand, the infection does not respond to the antibiotics, or you do not tolerate them well, adding an ID doc to your team can be very helpful, especially if they work together with the lung doc.

Most of us have no idea when or where we acquired our MAC infection - it is in the soil, air and water - it is just a matter of having some disease or illness that makes our lungs susceptible, and it sets up a cozy colony. I had mine for at least 3 years, more likely 5, before it was accurately diagnosed. I may have gotten it in Texas or Florida or Alabama, or in my own garden in Minnesota.

Good luck with your surgery! I'll be thinking of you.
Sue