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MAC/NTM is Different for Everyone, Treatment might be different too
MAC & Bronchiectasis | Last Active: 3 days ago | Replies (99)Comment receiving replies
Hi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB as a kid but was told I was strong enough to fight it off but it left a scar on my lung and left me apparently susceptible to getting MAC. I will be 75 in October and am otherwise very healthy. I have pretty much decided that I will not take the meds if I have MAC. My Dr. told me that the side effects are worse than the levothyroxine I was on for a week recently . I have read that once diagnosed with MAC you have 1 to 5 years to live, so I would prefer to live out those years with no adverse side effects and accept whatever comes my way.
Replies to "Hi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB..."
I've had this condition for over 5 years and am still going strong. I try to exercise daily and cut out inflammatory foods like gluten and sugar but feel I need to add back in some dairy to protect my bones. I'm close to 70 years old.
That 1-5 is not true. Get a good Dr or 2 (or 3,4+), do your ACT's and stay active. I'm in year 6 and plan on being around quite a while.
You said "...I have read that once diagnosed with MAC you have 1 to 5 years to live,..." I think you could find 100 or more people in this group to dispute that. It used to be (maybe 10 years ago or so) that if you hard severe cavitary MAC or M. abscessus that life expectancy was not great.
Over the five years I have been active in this group, so much has changed! There are new antibiotic protocols to treat infections. The importance of daily airway clearance has been proven. Use of inhaled 7% saline can help to knock down MAC, bring up more mucus, and improve lung health.
While there are undoubtedly people whose MAC, lung damage or other conditions are so severe that their life expectancy is shortened, my ID doc stresses "MAC and Bronchiectasis are not diseases you die from, they are conditions you learn to live with."
So, all that said, many of us with mild cases of MAC choose a "wait and watch" strategy. We do rigorous airway clearance, exercise and eat well, stay as healthy as we can. We hope our MAC doesn't get worse. If mine does get bad again (like it was 5 years ago) I will consider a return to the antibiotics, or maybe sign up for one of the new drug or non-drug trials that keep cropping up. And I fully intend to live another 10 or 15 years or longer...
Sue
I would get another opinion. I was strong enough to fight it off too and ended up with MAC eating a 10 cm cavity in my upper left lung within 30 - 45 days of no treatment. I would see how the treatment does for you with side effects before taking the word from anyone that the treatment is worse. I find that untrue. The damage MAC can do is what's worse. Best of luck in your decision.
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Please do not make any decisions until you have all the information you need
Many people tolerate treatment quite well and l personally have lived with MAC at least 8 years and am doing fine after successful. ( at least for now) treatment.