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3 months after ending big 3 after 18 months - Mac seems to be back

Posted by justaussie @justaussie, Jul 26 11:58am

Hi everyone, I'm a 61 year old woman and I was diagnosed with Mac and Bronchietatas in 2024 and took the big 3 meds for 18 months til March this year. The CT scans showed the hole in my lung had reduced to negligible measuring size and honestly I was very lucky as other than the frustration of monthly blood tests and quarterly eye tests except for the first 10 days I felt fine. My night sweats and coughing resolved very quickly. I'm really unhappy with my infectious disease doctor as she was very loose with my treatment and never seemed to know my results or pay attention to my health. I couldn't get sputum up after the first couple of months so didn't get sputum tests and she didn't impress on me the importance of this before ending the meds. I just had another CT scan last week as have been coughing alot at night - a little during the day. I'm seeing my pulmonologist on 7 August - earliest appointment I could get. I haven't had to use airway clearance because I was never that bothered by it. My CT scan report to me - and AI seems to indicate Mac is back - but a sputum test - which I will get this coming week will confirm. Has anyone had a similar experience where it has come back so soon after ending meds. I really don't want to take ethambutol again as I feel like my eyesight has deteriorated alot even though the eye tests seems to say it was okay. Any advice most welcome. I'm super worried. Thank you.

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annasill | @annasill | 1 day ago
In reply to @sueinmn "@annasill Pseudomonas is a different infection than MAC, and responds to different antibiotics. The treatment typically..." + (show)
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@annasill Pseudomonas is a different infection than MAC, and responds to different antibiotics.
The treatment typically is also shorter in duration, but it can sometimes take several tries to get the right drug.
Pseudomonas is identified the same way as MAC, from a sputum culture, but the results typically only take a week or two.
Hizentra is not an antibiotic, so will not cure an infection you already have. It is an immuno-globulin therapy meant to strengthen your immune system to prevent future infections.

When you are treated for pneumonia, does the doctor do a culture to determine exactly wat infection to treat?
do they do another culture after treatment to see if the infection is gone?

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@sueinmn she does not do a culture; she has X-rays taken to see what my lungs look like. Is it possible to have both. I was told that the pseudomonas were causing my bouts of pneumonia, and I needed a strong antibiotic to treat them. I take the Hizentra as my immune system is compromised, and since I am on it, I haven’t had a bout of pneumonia. I stilled have bouts of exhaustion, night sweats and a persistent
cough which I am told is from the MAC. My Infectious disease doctor was all about getting sputum, but he was also old school and retired. The new doctor, who is a fellow, doesn’t seem to know anything about MAC. It’s so frustrating

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Mentor
Sue, Volunteer Mentor | @sueinmn | 23 hours ago
In reply to @annasill "@sueinmn she does not do a culture; she has X-rays taken to see what my lungs..." + (show)
Profile picture for annasill @annasill

@sueinmn she does not do a culture; she has X-rays taken to see what my lungs look like. Is it possible to have both. I was told that the pseudomonas were causing my bouts of pneumonia, and I needed a strong antibiotic to treat them. I take the Hizentra as my immune system is compromised, and since I am on it, I haven’t had a bout of pneumonia. I stilled have bouts of exhaustion, night sweats and a persistent
cough which I am told is from the MAC. My Infectious disease doctor was all about getting sputum, but he was also old school and retired. The new doctor, who is a fellow, doesn’t seem to know anything about MAC. It’s so frustrating

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@annasill Hmm, treating a recurrent infection without knowing what bacteria you are fighting isn't generally a "best practice." And the sputum culture is the way to do it, so it is concerning that the new ID doc doesn't order one.
Have you considered finding a MAC & Bronchiectasis center of excellence near you?
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

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annasill | @annasill | 19 hours ago
In reply to @sueinmn "@annasill Hmm, treating a recurrent infection without knowing what bacteria you are fighting isn't generally a..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@annasill Hmm, treating a recurrent infection without knowing what bacteria you are fighting isn't generally a "best practice." And the sputum culture is the way to do it, so it is concerning that the new ID doc doesn't order one.
Have you considered finding a MAC & Bronchiectasis center of excellence near you?
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

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@sueinmn I saw the list and the closest is chapel Hill. I am going to look into this

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