What to do in life before the Big 3?

The Big 3 look to be in my near future for MAI. Quite often I'll see a post referring to "side effects" of the Big 3, and it seems like everyone just knows what they're talking about. Could y'all please elaborate? Sometimes I think I don't want to know, but at some point (sooner rather than later) I guess I'm going to have to face reality.

@letsjustbreathe I am going to address both of today's questions here, because they are related.

First, can you share a little about you diagnosis - when and how was your infection diagnosed? Do you have MAC (mycobacteria avium complex), pseudomonas, or something else? What symptoms do you currently have? And what is your current practice for airway clearance to help keep the mucus out of your lungs?

Lots of questions, I know, but many people never need to start antibiotics at all. Some people clear MAC spontaneously, and for others it remains at a low enough level to tolerate.

Are you seeing a pulmonologist experienced in treating MAC?

Sorry I can't help... All I can do is ask, what are the Big 3?
(Excuse my still relatively uninformed newby questions)
Anyway, good luck to you!

@sueinmn
Hi, I'll be happy to share more.
Bronchoscopy in 8/2024 found pseudomonas, MAI (Mycobacterium avium-intracellulare), aspergillus, and staph. The MAI was in the BAL sample only, not in the RML sample. We've been watching since then, since I didn't feel sick (and I still don't.) Unfortunately, things have progressed-- more inflammation, tree-in-buds, etc. especially in the RML and LL. And now there's (probably) cavitation. We're watching 4 possible cavities-- they are very small right now-- the largest one is 1.4 cm. Since the bronchoscopy I've submitted 3 sputum samples and they all have shown pseudomonas and staph, but MAI and fungus are negative. The theory is that I just am not getting the samples from the infected areas, because everyone seems to agree that my CT scans show MAC progression. I found a specialist in my area 8/2025 and I recently did the work-up at NJH. (Waiting on 3 sputum culture results submitted while there.)

I'm no longer in my phase of denial, and it looks like MAC drugs in about 6 months, when I do my next CT scan. Boo.

Regarding AC, I nebulize 7% saline (17 minutes) and do my variation of autogenic drainage while laying almost flat in a recliner (30 minutes). I get out maybe about 1/8 of a cup of sputum each day. I'm in the process of ordering a vest. When that arrives the plan is to do 7% saline, Aerobika, and vest all at the same time, with intermittent huffing. I'm also supposed to do this routine twice a day.

Oh, I also have bronchiectasis.
If there's anything I left out, feel free to ask!

@letsjustbreathe Side effects are different for everyone. I have been on the Big 3 daily for 2 years now along with Arikayce for the past 23 months. I have been fortunate and not experienced bad side effects other than fatigue but I'm not sure if that's from the drugs or the disease. I do take and would recommend a daily probiotic taken at least 4 hours outside of any antibiotic. Also, plain yogurt dressed up with fresh fruit and honey. Best of luck!

@letsjustbreathe All helpful to know - I'm guessing you are headed for antibiotics, maybe for Pseudomonas first, then MAC.

If you do start the antibiotics, NJH will advise you well on the exact protocol to follow, ut those who have been "in the trenches" will add thrit own advice.

Here is mine - get eye and hearing exams as a baseline, and as often as recommended by your doc to catch any side effects early. If you experience nausea (common), ask if it okay to take the meds at bedtime to minimize discomfort. To keep your intestinal flora functioning, eat live culture yogurt, fresh sauerkraut, kombucha or take a wide-spectrum probiotic. At the first hint of weight loss, get on a high calorie eating plan. (There are lots of discussions about it in this group.)

Above all, know that you can do this, and with good docs backing you, the journey will be much easier.

Its important to clarify here. While most of us will wind up taking multiple drugs, three being the norm, they aren't always the same three. So which three are we discussing? And for which diagnosis? And how are they being given? For me in this round, there are two by IV, Nuzyra and amikacin, and one oral, Clofazimine. My big 3 side effects will be based on those specific medications but other "Big 3s" might not include a single one of these

The Big 3 are usually thought of as azithromycin (or clarithromycin), rifampin and ethambutol. Recent studies seem to show that possibly taking just two of these are just as effective. They take out the rifampin. The usual protocol is to take these 3 drugs either 3 times a week or every day depending on your diagnosis. Once you convert (negative sputum samples) you take them for a full year. If you don’t convert in 4 months (I think) they may add or substitute other drugs. As you can see it’s important to find a pulmonologist who is an expert. Once you do you will feel less overwhelmed (at least for me).

@sueinmn
Do you know why we start with antibiotics for pseudomonas first? It's been around a long time (1st seen in 2024), so there's no eradicating it. The sputum loads for it have been (in order of samples):
1. 2+
2. <1+
3. "Rare" (at NJH)
4. "Rare" (at NJH)
I'm really scared of antibiotics because of the gut-to-brain connection. My parents have parkinsonism symptoms, and I sure don't want to get Parkinson's Disease because I've destroyed my gut microbiome with antibiotics.

".... to catch any side effects early."
What side effects? Am I going to lose my vision and/or hearing? All kinds of things come to mind-- retinal tears, glaucoma, etc etc. I am very near-sighted so I'm at risk for retinal problems to begin with.

"Above all, know that you can do this..."
Here's the thing-- I'm not sure that I can. That's why I'm trying to find out what life will be like for those 18+ months. Prepare for the worst and hope for the best.

Thanks for your help!

Does anyone know how to prove "conversion" if MAC won't show itself in sputum samples to begin with? I sure don't want to do a gazillion bronchoscopies.