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Options if MAC goes untreated

MAC & Bronchiectasis | Last Active: Dec 15, 2024 | Replies (96)

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@joannamaria

Hello Sue and everyone - the new pulmonologist I went to in NYC yesterday (he follows Nat Jewish Health protocol) advised me to take the big 3 everyday and not 3 days a week as my first pulmonologist did. This is because I have cavitary MAC. I’m going to try taking all 9 pills every day, all at once and see how it goes. My diet has always been clean and I’ve ramped up exercise which really helps. I do feel wiped out in this moment after 2 days of full antibiotic protocol but hopefully my body will adjust. Main symptom is fatigue. Be well and Happy Holidays to all.

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Replies to "Hello Sue and everyone - the new pulmonologist I went to in NYC yesterday (he follows..."

I'm pretty sure all of us can relate to the fatigue and each has/had our own way of dealing with it. I'm not sure of your age, or whether you are still working - I was in my late 60's and very actively retired when I was diagnosed.
The first thing I did was admit I needed more rest - whether it was a mid-day nap, earlier bedtime, or taking rest days - it kept me going. Sometimes plans had to be changed or cancelled if my body just said "No".
The second was to off-load every chore that I could - either just stopped doing them, my husband and/or adult kids helped, I hired someone, or I used the internet for groceries, everyday stuff, even gifts.
The third, and hardest, was stepping back from activities to conserve energy. In my case, I did less volunteering, if we went out we came home earlier, and I switched from very labor-intensive hobbies and exercise to less strenuous activities - walking instead of biking or volleyball, making smaller gifts instead of full-sized quilts, making simpler meals and eating out with friends instead of entertaining.
I'm happy to say I was able to resume nearly everything a few months after I finished the antibiotics.
Good luck with the meds - let us know if you have questions.
Did the new pulmonologist talk about airway clearance and/or saline nebs?

Glad you found a pulmonologist who follows NJH protocol. Just curious...is the pulmonologist associated with Mount Sinai Hospital in NYC? I ask because it is my understanding that Mount Sinai is working closely with NJH.
Wishing you good days ahead as you "see how it goes."
Yes, be well and enjoy the holiday season.
Barbara