Mac lung disease and the big three

Posted by debras567 @debras567, Dec 24, 2023

On the big three for 5 months and having issues with nausea, aching,
Dizziness….anyone have similar side effects?

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I had have had a cough which would not go away. I was then sent for a CT scan w/o contrast and it showed something in my left lung. While we were waiting for results I was using a nebulizer for the past two months and an aerobiKa machine to vibrate my lungs. I then went for a sputum test for 3 days in a row and the culture was positive for Mycobacterium avium and Mycobacterium abscessus. The pulmonologist referred me to the office of infectious disease associates of Venice, Fl

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Let your doctor know. Sometimes patients are treated with just two of the three antibiotics-azithromycin and ethambutol. My doctor said Rifampin often causes the most side effects, but of course there are differences with everyone. Your doctor needs to know and may be able to offer some advice or other treatment.

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Profile picture for kbxraymom913 @kbxraymom913

Thank you so much for your responses. I was feeling so alone and so badly. I will be here for anyone who needs comfort and some encouraging words. Let's take it "One day at a time".
Katie ☺️

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@kbxraymom913 I
I have not been on the cocktail of the big three yet. Though my pulmonologist wants me to and I'm seeing the IF doctor this week. Though I don't want to. I'm an author with an active career and I'm 89 and don't want to spend my days feeling sick. As it is I'm suffering from terrible flares with chills, stuffy nose, hoarseness. No one seems to do anything about it. But I can deal with it all except for the chills. I'm so happy when they subside. Do you have chills?

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Profile picture for barbararoseb @barbararoseb

@kbxraymom913 I
I have not been on the cocktail of the big three yet. Though my pulmonologist wants me to and I'm seeing the IF doctor this week. Though I don't want to. I'm an author with an active career and I'm 89 and don't want to spend my days feeling sick. As it is I'm suffering from terrible flares with chills, stuffy nose, hoarseness. No one seems to do anything about it. But I can deal with it all except for the chills. I'm so happy when they subside. Do you have chills?

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@barbararoseb You might consider joining this discussion in the MAC & Bronchiectasis group.
https://connect.mayoclinic.org/discussion/mac-treatment-do-or-not-do/
Many people choose alternatives to antibiotics, but it depends on the severity of the infection. There are other, less rigorous treatments, like daily airway clearance, that can sometimes tamp down the infection. There is also the option of treating with short-term antibiotics when the infection flares.

It is really important to find a pulmonologist very experienced in managing MAC with Bronchiectasis or other underlying lung conditions like Asthma or Cystic Fibrosis. It is no indictment on their skill to say most pulmonologists only see a few people each year with MAC, and are not familiar with the latest protocols for treating it.

Do you also have Bronchiectasis? Have you had 3 or more sputum cultures or a current bronchoscopy the grew MAC?

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