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

Posted by justaussie @justaussie, 4 days ago

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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visions63 | @visions63 | 12 hours ago
In reply to @visions63 "@bayarea58 only 2 surgeons do this Robotic Lund resection in all of Manhattan,and I had the..." + (show)
Profile picture for visions63 @visions63

@bayarea58 only 2 surgeons do this Robotic Lund resection in all of Manhattan,and I had the best ..I wasn’t able to get a good sputum test before the surgery and haven’t done one post surgery. My cavitary mass showed up on a chest x-ray as an incidental finding, and then on a CT scan and then on a pet scan. I did biopsies which did show positive for MTM disease. My surgeon, and I totally agree that the antibiotics cannot penetrate a cavitary mass to get through the white cell outer coverage to get to the infectious part in the middle of the cavity .
Of course, Many pulmonologist and infectious disease people have to go by the book and insist that you do antibiotics even though it’s useless.
My surgery was really easy. Recovery was really easy and it’s the best decision I ever made….i had my surgery in March ,…my 3 month post surgery CT was negative and I have no symptoms….i just walked a 20 min mile and I feel good ….and I’m old ! I did, however, lose a lot of weight from this disease and nobody put it together until I had a chest x-ray and found out what I had.
I went down to 84 pounds and now since the surgery I have gained 6 pounds and hoping for more .

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@visions63 my surgeon was Dr Robert Cerfolio at NYU ,he saved my life !

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Profile picture for bayarea58
bayarea58 | @bayarea58 | 9 hours ago
In reply to @visions63 "@bayarea58 only 2 surgeons do this Robotic Lund resection in all of Manhattan,and I had the..." + (show)
Profile picture for visions63 @visions63

@bayarea58 only 2 surgeons do this Robotic Lund resection in all of Manhattan,and I had the best ..I wasn’t able to get a good sputum test before the surgery and haven’t done one post surgery. My cavitary mass showed up on a chest x-ray as an incidental finding, and then on a CT scan and then on a pet scan. I did biopsies which did show positive for MTM disease. My surgeon, and I totally agree that the antibiotics cannot penetrate a cavitary mass to get through the white cell outer coverage to get to the infectious part in the middle of the cavity .
Of course, Many pulmonologist and infectious disease people have to go by the book and insist that you do antibiotics even though it’s useless.
My surgery was really easy. Recovery was really easy and it’s the best decision I ever made….i had my surgery in March ,…my 3 month post surgery CT was negative and I have no symptoms….i just walked a 20 min mile and I feel good ….and I’m old ! I did, however, lose a lot of weight from this disease and nobody put it together until I had a chest x-ray and found out what I had.
I went down to 84 pounds and now since the surgery I have gained 6 pounds and hoping for more .

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@visions63 in my case, my cavity (roughly 2 cm) did eventually close with antibiotics. It seems really hit or miss whether cavities close with antibiotics but certainly many do, so I myself agree with most specialists that trying antibiotics first makes sense for many. But when antibiotics are not getting one to convert their sputum, I think it’s important to reassess and look at all options. I know that my doctor at NJH takes the position that surgery is not a substitute for antibiotics, and requires antibiotics both before and after surgery. Also, many with cavities do sputum convert but don’t close cavities during treatment, and I have been told that is hard to interpret, that those cavities may close later, or never and yet the patient may remain sputum negative. Each of us has our own unique journey. So glad you had a positive experience with your surgery and are feeling so much better. That’s really what it is all about, isn’t it. Stay well!

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