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

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@sueinmn

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

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Replies to "Oh yes, I was really scared to start the antibiotics, and the side effects, for me,..."

This is helpful, Sue. I think I got MAC from gardening, too. I have more exposure to soil and its contents than most. My doc hasn't suggested any lifestyle changes, air filters, or shower/water consumption changes. I keep reading about nebulizers and I have no idea how to start with one. Is there more information about them somewhere? Thank you for your help here. I'm so glad I found this site. I hope you continue to feel well.

Sue, you such a blessing with the experience and information you provide. So many of us are frightened and hungry for information about these lung diseases. You have provided me with solid information and comfort. Thank you so much!

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?