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My sister has MAC & can't handle treatment. How can I help?

Posted by gina2023 @gina2023, 20 hours ago

My sister was just diagnosed with MAC which is a fatal disease .There is a treatment,but her body can not handle it.I am so lost and don't know what I can do.I lost my husband 3 years ago and I feel this is deja vu.Does anyone have any suggestions?.Thank you in advance

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Sue, Volunteer Mentor | @sueinmn | 13 hours ago

@gina2023 Gina, please know that MAC (Mycobacteria Avium Complex) is an infection, not a death sentence. Even if your sister is not able to tolerate the full antibiotic regimen to eradicate the infection, there are many strategies and treatments available to keep the infection at a "smolder" so she can enjoy life.

Please join us in the MAC & Bronchiectasis Support Group to learn more about MAC (also called NTM or non-tubercular mycobacteria) and some of the options available to her. Here is a discussion that might be helpful to you:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
I will ask the moderator to move this discussion to the MAC & Bronchiectasis group so others "in the same boat" can reply to you.
In the meantime, please know we were all frightened by what we read and heard at first! I myself survived the antibiotic regimen and have lived MAC-free for over 7 years. My Mom, who had MAC along with many other health issues, could not have handled the same regimen, so she was treated with daily nebulizer treatments, and a single antibiotic during flares. When she died several years later, it was from another cause entirely.

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gina2023 | @gina2023 | 11 hours ago
In reply to @sueinmn "@gina2023 Gina, please know that MAC (Mycobacteria Avium Complex) is an infection, not a death sentence...." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@gina2023 Gina, please know that MAC (Mycobacteria Avium Complex) is an infection, not a death sentence. Even if your sister is not able to tolerate the full antibiotic regimen to eradicate the infection, there are many strategies and treatments available to keep the infection at a "smolder" so she can enjoy life.

Please join us in the MAC & Bronchiectasis Support Group to learn more about MAC (also called NTM or non-tubercular mycobacteria) and some of the options available to her. Here is a discussion that might be helpful to you:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
I will ask the moderator to move this discussion to the MAC & Bronchiectasis group so others "in the same boat" can reply to you.
In the meantime, please know we were all frightened by what we read and heard at first! I myself survived the antibiotic regimen and have lived MAC-free for over 7 years. My Mom, who had MAC along with many other health issues, could not have handled the same regimen, so she was treated with daily nebulizer treatments, and a single antibiotic during flares. When she died several years later, it was from another cause entirely.

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