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My MAC infection is back. Has this happened to you?

Posted by Tina Sims @tinaesims, Aug 26, 2022

I have been off the Big 3 for a year. I just sent in another culture and it was positive. I knew it would be positive again sometime but I didn't think it would be so soon. I feel fine. I cough occasionally and I do cough up junk after my saline neb. Has this happened to anybody else? I think I need some words of encouragement to get out of this funk.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2022

Hi Tina. I am so sorry to hear that your mac is showing positive again. I believe it is fairly common for a reoccurrence to happen. My Mayo dr that has retired already had told me that maintenance antibiotics should be continued for a good while after coming off of the Big 3; or it may be that you need to be on them a bit longer. I was taken off of my maintenance meds last Dec, and guess what, I tested positive for MAC after having tested negative since 2014. MAC never truly goes away or stays away. It can be knocked down to an undetectable level to show as a negative test result, that is the sweet spot we all aim for. Are you being super diligent with your saline treatments 2x a day?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 26, 2022

@tinaesims Hello - I thought I would let you know that we changed the title of your post to "My MAC infection is back. Has this happened to you?" in order to be more descriptive. Maybe you will get more reaction from members whose MAC has returned after treatment.
Have you and the doctor decided whether to restart antibiotic treatment now, or wait and see whether the next culture is negative?
Sue

REPLY
1 reply
Tina Sims | @tinaesims | Aug 27, 2022
In reply to @windwalker "Hi Tina. I am so sorry to hear that your mac is showing positive again. I..." + (show)
@windwalker

Hi Tina. I am so sorry to hear that your mac is showing positive again. I believe it is fairly common for a reoccurrence to happen. My Mayo dr that has retired already had told me that maintenance antibiotics should be continued for a good while after coming off of the Big 3; or it may be that you need to be on them a bit longer. I was taken off of my maintenance meds last Dec, and guess what, I tested positive for MAC after having tested negative since 2014. MAC never truly goes away or stays away. It can be knocked down to an undetectable level to show as a negative test result, that is the sweet spot we all aim for. Are you being super diligent with your saline treatments 2x a day?

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I am being super diligent with my saline treatments 2 X a day. I play games while I'm doing it so I don't always take deep breaths. I am now! What maintenance meds were you on?

REPLY
Tina Sims | @tinaesims | Aug 27, 2022
In reply to @sueinmn "@tinaesims Hello - I thought I would let you know that we changed the title of..." + (show)
@sueinmn

@tinaesims Hello - I thought I would let you know that we changed the title of your post to "My MAC infection is back. Has this happened to you?" in order to be more descriptive. Maybe you will get more reaction from members whose MAC has returned after treatment.
Have you and the doctor decided whether to restart antibiotic treatment now, or wait and see whether the next culture is negative?
Sue

Jump to this post

I haven't had my appointment. My regularly scheduled appointment is in October so I'm assuming he wants to wait until then. He told me over the portal and he asked me a few questions. He told me to keep up with the nebulizing. Thanks for the change in title. The two responses I got did help calm me down.

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