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

What brand is your whole house HEPA filter and portable? Thanks

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I don't know on the whole house - it was recommended by our very reliable HVAC dealer, and seconded by my HVAC son-in-law. My room filters here are Honeywell, with 2 types of user-replaceable filters. The ones at home are Levoit, sized for each room, with one replaceable & one washable filter in each. I write the next replacement date on tape on the back of each unit, and do it faithfully. I use the minimum interval. Both mid-range pricewise, and have proven very reliable.
I specifically chose filters that do not produce ozone. I read the reviews to choose these two brands.
Sue

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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

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Sue, Can you tell me how you acquired a test of NTM in your home plumbing? I'd like to do this for my old farmhouse with a well, UV system, and super old pipes leading off from that to the taps... Thanks! Natasha

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I contacted a water testing company (name escapes me & I am away from my records until May. ) Took samples in kitchen and both baths per their instruction and sent in. My house had no detectable mycobacteria. Just Google for water testing, and you must request specific pathogens.

Sue

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I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?

Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?

Does this help? I sure wish I had known what to ask when I was diagnosed.

Good luck with your appointment - let me know what you learn, please

Sue

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Hi Sue,
I literally cut and pasted your questions and brought them to my Infectious Disease doc yesterday, he took his time to answer them as we discussed a plan...I'm now on the 3 meds and will see how it goes. Thanks so much for your help! One question I forgot to ask him was about probiotics--do you have any recommendations?

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Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience - When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

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