← Return to Remission: When do you consider yourself in remission from MAC?

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@windwalker

Hello Irene! It's been awhile..... You bring up a very good subject: One thinking they are well, when, in fact, they are not. I have been going to Mayo Clinic since 2013, and tested negative for MAC since 2014. All chest x-rays and CT's showed little change over the years and then Blam! I am told that I have two colonies of MAI MAC and aspergillus, and....need a lung transplant soon! Up until Dec 2021; I thought I was holding my own and staying steady. Actually, my lung function was steadily deteriorating. I don't know if there is any correlation, but I was taken off of my Tobramycin in Dec 2021, but kept on the cipro every other month..(and now have tested pos for MAI) A dr recently told me that since I had been on cipro for 9 years; I am most likely resistant to it by now. So, I have been unprotected by prophylactic antibiotics for six months now. I have a Zoom meeting with my I.D. this Tues, so I will see what she recommends.

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Replies to "Hello Irene! It's been awhile..... You bring up a very good subject: One thinking they are..."

OMG!! I am so sorry to hear that Terri. Thank you for your reply- yes it’s been a while. I have really been struggling which is why I have been MIA. At 72 pounds there isn’t much left of me! I feel like all the meds and bronchs have been for naught. I will lift you up in prayer and hope all goes well for both of us. Sending you a big ole hug. Irene