Starting MAC treatment with "big three" drugs: What to expect?

I have tried a percussion massager on my chest and back morning and evening. I have tried the AirPhysio and the Doctor has given me an inhaler to try and bring up mucus. I do the huff coughing but I have not been able to bring up any mucus what so ever. I thought maybe I should try the best since it was totally covered by insurance.

I was recently diagnosed with MAC. I started the big 3 and had a bad reaction. I am off meds and now under observation until March—will be referrred to IFD dr. If disease has progressed. I am asymptomatic except for tiring easily. Is it better to wait until I have more symptoms? Will disease continue to progress at a slow rate? Thinking I will go to Duke or Chapel Hill MAC specialist for second opinion. This is overwhelming!

Just got diagnosed with MAI and bronchietasis last August 2021. Will see the infectious Disease Doctor Monday January 31. I am so scared and have terrible anxiety . I am 71 years old. I was told as you get older it gets so much worse . I am going to Cedars-Sinai in Los Angeles. What can I do to relieve some of this anxiety?

I am 80 years old, have been on the 3 antibiotic regimen for many years with little or no side effects. My MAC is very manageable. Trust that you will get the best treatment available.

I usually try not to repeat myself, but much of this post is a copy.
First of all, there are lots of things you can do except wait. And some of them may slow the progress of the infection in your lungs enough so you "watch and wait" indefinitely without antibiotics. That is not a promise, only a possibility - each of us is different.
I was on the Big 3 for a year and a half, treating and tolerating the side effects as long as I could, before I told my ID and pulmonologist I couldn't do it any longer, even though I was still positive for MAC. They did a CT, which showed improvement,
but not complete clearance, and reached out to National Jewish Health to consult.

In December 2019, I went off the meds, and onto the following routine:
Airway clearance - nebulized 7% saline solution (7% has been shown to also fight the growth of MAC, but lower concentrations can also help thin the mucus & "tickle" your lungs to move mucus) followed by coughing, using my Aerobika if needed. At first twice a day, now once a day unless congested or having asthma problems (then I add levalbuterol neb too)
Anti-mucolytics - the best known is guaifenesin - Mucinex 600 LA (without a decongestant) is what I have been using for 35 years. Recent research in Cystic Fibrosis had also shown that N acetyl cysteine (NAC) is useful to thin mucus, so I also use 600mg twice a day.
Liquid - lots of it, especially water. I also drink and herbal tea called Breathe Easy by Traditional Medicinals, especially in cooll weather.
Healthy diet, moderate exercise and rest.

I have had only one exacerbation that was treated with increased nebs & steroids. My CT scan at 18 month showed no changes. Two weeks ago we caught a bronchial virus and I didn't even get bronchitis - a first for me in over 20 years, so I guess my routine is working.

Do you have an airway clearance routine? With bronchiectasis, asthma or COPD, our lungs don't clear mucus properly, providing a breeding ground for bacteria. So even when we don't feel congested, we need to clear it out ourselves. As I write this, I am sitting here "puffin' the pipe" and coughing!

Sue

Oh yes, I was really scared to start the antibiotics, and the side effects, for me, were no walk in the park. But I persisted for 18 months, and knocked the infection way down but not out.

During my treatment, I learned on Mayo Connect about using 7% saline in conjunction with airway clearance. In December 2019, in consultation with my pulmonologist, ID doc, and NJH, I decided the side effects were no longer worth it for me. We did a trial of stopping the antibiotics, but continuing airway clearance & 7% saline.

Two years later here is my report: No observable reinfection, either by CT or symptoms. Only ONE exacerbation, managed with increased nebs and airway clearance for a month and a short course of steroids to calm my lungs.

Here are the ongoing precautions I take to keep from getting sick:
Twice a year visits with pulmonologist - sputum culture at one, CT at other to make sure I'm stable.
Super caution about exposure to respiratory illness. (If my kids/grands have any kinds of sniffles or cough they mask when with us - their idea.)
Keep my neb/breathing equipment clean.
Stay away from hot tubs.
Keep my water heater super hot (138F) to minimize MAC growth and take short showers.
Drink & cook with 2 micron filtered water at home. Drink spring water when not home.
Run HEPA filters in our homes.
Stay indoors or mask when dirt is blowing around, and when gardening in dry soil. Pay someone else to handle digging and mulch in my gardens. Change clothes and shower after gardening. (Pretty sure I got MAC from the dry Texas dirt where we had feral chickens in the yard.)

That's it - others may exercise more precautions, but this is working for me. I figure the extras - changing filters, equipment cleaning, masks, are a pretty minimal effort compared to dealing with the meds.

You will find a way to accommodate, and it will just be part of your routine...
Sue

Hi Sue, your insight is really helpful with specific strategies...I had a few questions: do you have one of those portable HEPA filters in the rooms of your home or do you just use good filters in the HVAC system? Also regarding the filtered water, do you have one of those whole house filters or just the filter on the refrig? Do you use a Brita water filter as well? I love gardening but i'll have to use more help with digging but do you think i can still get out there for some gardening with a N95?

Thank you for the encouragement it does help to know it is possible. I have heard more negative then positive so I appreciate you reaching out to me. I will pray for the best and for everyone else that is dealing with this.

Hmm...
Let's start with my favorite - gardening. I wear a mask, make sure the soil is moist to limit airborne dust and try to wear long sleeves/pants (not perfect at that yet, but have gotten some super lightweight wicking clothes) - and I have learned to shower and wash the clothes afterwards. I stay out of the garden when digging is going on or mulch is being laid.
In one home, we have HEPA on the HVAC, but I like open windows so we also have portable units. In our tiny house we have a portable HEPA system & clean the a/c filter.
In one home we have a whole house water filter (it's a pain with the tiny pores so has a prefilter on it.) The water has tested twice negative for NTM, so we might quit. In the other house we have a well - no NTM, but use a filter for tast & I change it every 2 months. I truly don't worry much about it as I have no GERD, though I do drink bottled spring water when we travel.

We have a hot tub in our tiny house community which I completely avoid. But I do use the community salt water swimming pool (keeping my face out of the water.)

One thing I seldom see mentioned, but that we do, is keep our reuseable water vessels - pitchers, glasses, mugs & covers, sippers, etc - scrupulously clean - soaked then washed daily in hot soapy water & scrubbed vigorously with bottle brushes of various sizes to keep any biofilm from forming. At the big house, I scrub before putting in the dishwasher.

I would like to hear others here can share their own strategies, but this is what works for me.
Sue