Non treatment of MAC

You didn't miss anything - that is the preferred protocol.

But in my case, clarithromycin was the best choice for my strain of MAC, but I couldn't tolerate it and had to change to azithromycin (bad news since my long time tinnitus got worse.) And at my regular eye check (every 3 months) my ophthalmologist told me I was one of the few patients on ethambutol where she didn't have to ask for their docs to stop it early due to vision changes.

Just recently, inhaled Arikayce has become an accepted part of the protocol, and can be used when some other drugs are not tolerated. And 7% saline along with airway clearance has changed the treatment path dramatically for many of us.

So yes, in the ideal world we all tolerate the Big 3, but in the ideal world we wouldn't get MAC either, would we? So each person's treatment must fit them personally.

Sue
Typed as I sit here "smokin' my pipe"

My cavitation has been present for over 5 years. Too much scar tissue to much about it.
After MAC for 3 years, aspergillus set in last year. 3 weeks ago, bad covid set in that I am about over. What a long haul but I feel pretty good considering the amount and long term antibiotics I am on.

I'm just over 5 years as well. My cavity did shrink to 4 cm. My cavity is in my left upper lobe. My right lung has collapsed twice but after the 2nd time I had the talc pleurodesis procedure done (3 years ago) and it's held strong (fingers crossed, knock on wood etc - 🙂 )
I know how horrible I was in the beginning of this so I not dare complain much. I feel pretty lucky to have the quality of life I have while dealing with this monster.

I love to hear the optimism in your comment "I feel pretty lucky to have the quality of life I have while dealing with this monster..." because you have really had a rough go.

I count myself lucky because even though I was very sick in the beginning, and the daily antibiotics almost wrecked me, I was able to recover without such awful complications, and have managed to stay off meds (but not MAC-free) for almost 4 years.

This just emphasizes how differently each of us is affected by the disease.
I wish you continued quality of life, and like everyone else here I'm waiting for an actual cure for the bacteria.
Sue

Oh yes. My system had to adjust big time to the antibiotics as they did a job on me as well. I was able to stay on them but not without issues in the beginning. I also have Graves thyroid disease and some of those symptoms are the same as far as weight loss, exhaustion, etc. I was 2 weeks away from having the left upper lobe where the cavity is removed but then my right lung collapsed and they tabled that idea. Thank you for your encouraging words. It's nice to have folks that understand.

After almost 2 years, and reading many comments on this site, I am wondering how I should interpret all this information! After 14 months on the big three, I stopped taking them. After several weeks I started getting extremely weak again, and was having to lie down more often. I am unable to do some of my normal 'chores' at home. BUT...I now wonder if this is actually due to stopping the meds, or something else. About 4 years ago I developed this severe weakness, and was having to sleep MUCH more than normal. It is at best, depressing. I finally got back on the meds, but NOT the Rifampin. [eye problems, and hearing loss] I see very little, if any progress towards feeling better. **Can anyone tell me if the weakness and fatigue are actually due to the MAC?

Sue, MAC is a new and additional problem for me. I was referred to an ID following a positive culture. Arikayce inhalant was prescribed. I'm retired military. and a senior; prescription is one of my benefits which I get thru express scripts which is the agent that handles it. The arikayce required preapproval from the military. due to the cost which is listed in the thousands per month and a $68 copayment from me. They stated I must use conventional treatment for 6 months and still show a positive culture before they will approve it. Your comment on arikayce is very casual, was it a problem acquiring it for you? A few days ago, I signed an authorization for my ID to appeal their decision.

It wasn't available to me when I was being treated (four years ago now) - Back then it was only being used in a clinical trial that I didn't qualify for. As a retired Fed, I would be jumping through the same hoops as you if I needed it today - except, I already "failed" treatment once. I was on the 3 antibiotics for 18 months and never did get a negative specimen, but my lungs did improve.
So far so good on airway clearance & 7% saline 🤞
I hope your appeal is successful - my sis-in-law has been successful at appeals through Tri-Care express scrips for other issues.
Sue

I live in Las Vegas, NV … can I ask what type of center should I look for?

Hi, so you were also diagnosed with MAC disease. Were you on the Big 3 meds? So you did not experience any side effects such as hearing loss or loss of eyesight? I'm to start the Big 3 and I'm scared stiff. Thank you