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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This is my second go-round. I was first diagnosed in June of 2017. I took the standard 3 antibiotics for a period of 12 months and was told I was cured. When I went in for my yearly check up, my Dr. ordered a CT and it showed up in the scan. I had a Alveola Lavage and will see my dr. on the 20th for formal diagnosis. From what I'm reading, it doesn't sound very promising. This second time is so different than from the first. I can really feel it this time. I'm so sorry you all are having to go thru this. If anyone has any suggestions, I would love to hear them.
Again, this is my first attempt to join this group and I'm not sure of how to get started, and I'm sorry if I shouldn't have responded here.
ktkarenst
Replies to "I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This..."
@ktkarenst Welcome to this site. You will find a wealth of info and meet many lovely and knowledgeable people. I will share with you that it is my understanding that MAC doesn’t have a cure yet. It may “go away” but frequently comes back. That is why the length of being on the meds is at least 18 months. God willing there will be a cure sooner than later.
@ktkarenst...You will find this a very receptive group to help with any of your concerns. I am sorry to hear that you are on your 'second go-round." I wondered too if you were diagnosed with bronchiectasis as Terri asked. Often the MAC & Bronchiectasis go hand in hand. I also wonder if you might do well with a second opinion after your upcoming appointment? I have very mild MAC and Bronchiectasis yet my 'second opinion' Dr thought that nebulizing a 6% saline solution would be helpful. (same Dr as Terri Windwalker) Since you say you can now feel it in your lung and could not before, perhaps the mucous is building up and nebulizing saline could be helpful for you. It seems to be just good lung hygiene to help thin and get the mucous up and out. (Important to hinder "bugs" from developing.) Wish I could offer more help and suggestions. Good luck to you and welcome to our very "exclusive" group. Kate
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@ktkarenst, Hi there. You absolutely are not butting in! This is an open forum platform. Everyone's input is welcomed. I am sorry to hear your mac is not testing negative any longer. Usually drs keep patients of mac on those three drugs for 18 months or longer. I have tested negative for mac since 2014, but still take antibiotics monthly. Granted, they are not the same ones you have been taking. You can click on my picture icon and my treatment plan will come up for you to read. Do you know if you also have bronchiectasis?