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Did your MAC symptoms improve once you started Big3?
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (9)Comment receiving replies
Hi
I’m avoiding the TB drugs ( Big 3 ) due to the possible side effects on my eyesight, hearing, skin, liver GI tract, cardiac and kidney function etc. with the likelihood of only 30% conversion rate and possible re infection with another MAC strain via the environment ( hot water/ shower head, soil, local streams etc and maybe the Bird Feeder too. )
I was a student nurse in the 60’s and administered these drugs in an infectious disease unit to patients with TB and two had Leprosy. And these are the main drugs prescribed for Non Tuberculous Mycobacteria ( not much progress then)
I have ‘ moderate Bronchiectasis and Mac ( chimera and intracellare) which I believe are ‘ slow growers’
I’m doing daily airway clearance with 7% saline, Acapella etc.
I am not breathless, minimal cough and sputum ..at the moment and feel ok with the help of Encore nutritional supplement.
Thanks to this group I am keeping up to date on NTM ( MAC ) and online lectures from Specialist Respiratory Practitioners which has helped me come to this point in my own management.
Has anyone done any research on patient survival rates with Nodular MAC who have not taken the Big 3?
Stay as well as you can. 🤗
SP
Replies to "Hi I’m avoiding the TB drugs ( Big 3 ) due to the possible side effects..."
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I went to your profile and noted : "I was diagnosed with Bronchiectasis March 2023, then pseudomonas ( now resolved ) now MAC 1 - watch and wait big 3 + pending."
Does that mean you were able to eliminate pseudomonas without medicataions?
How do you think you were able to resolve the pseudomonas???
OR
do you think, maybe, might..... testing gave a false positive, if that is possible.
I am one of those who is still hesitant to take the two antibiotics prescribed for Mac...Intracellare due to not wanting to compromise that which is still working well at 82...hearing, eyesight etc. etc. So far since actual diagnosis in 8/2022 the Mac...Intracellare ( I was bringing up a small deep yellow green mucus for a couple of years prior to diagnosis and have not had that color for quite some time now mostly clear or very light in color) is all that has been showing up in my sputum viles and I have not been told I have nodules or cavities. Doing my best to keep the airways clear and thankful that my PFT is off the scale in the right direction. Many tiny mucus plugs come up and out in the late afternoon to evening hours.
Barbara