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

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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I also learned a lot from that site, but got off the site because of some troubling things. KellyKats makes some over the too summaries of research articles For example!; "Gluten is a opioid.." When you read the research that she sites that broad statement is incorrect. Other concerns; How can someone with as many serious illnesses as she has spend so much time responding to posts? I know how much time it takes me and I have fewer ailments than she claims to have... Everyone on the site has a user name but their real name is also revealed for all to see. Only name revealed fir her is KellyKats and no profile picture so no way to check if this is a real person.
There are some very sick people in the group and I miss communicating with them , but got off the group because if the unknown about KellyKats that I was unable to verify...

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you could have just blocker her and you wouldn't see her posts.. Lisa

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I am about to begin this journey unfortunately therefore I am currently here for random information from random people with the same thing. I was just told a few weeks ago that I have Mac and Bronchiectasis. I also have other underling lung issues and sleep apnea. So needless to say, this will most likely be a long journey for me. I am however hoping for the best outcome. I will keep you posted after I start the meds, as I need to have my stress test 1st and we are still waiting for the sensitives results. I had to do a 2nd set of Sputum tests because the lab threw out the 1st set without doing the final set with sensitivities after 30 days. Everything should come together within the next 2 weeks or so. I will keep you all posted! Thanks for listening to my story. Also praying I don't get nauseous! I hate that feeling! Weight loss, I could afford to lose a few lbs.! hahaha! Trying to keep it light. Lisa~

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You are a smart lady. It took me about 2 months to see what you saw in a short while. Whoever or whatever is named "kellyKats" is against most everything. Readers get brained washed. This KellyKats (???). Spouts info like an authority. But the description of this "person" is that she has many, many, possible diseases. Mother had bronchiectasis; handicap child; etc. etc. Maybe this is true or maybe it is just to have more people relate to "her." Not sure what it is, but I got a very uncomfortable feeling. Is some company "mining data" for a purpose? My daughter joined the group as a family member. She was called for pointing out that the research article that was referenced did NOT say that "guluten is an opoid" but that is what she stated loud and clear. I almost feel that members are being brainwashed and this "KellyKats" is the cult leader.

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I totally agree with you. I joined that group, and although found some articles very informative; found that she was a way off base on other things and trying to control her audience. She’s a bit scary if you ask me. I posted a question on another facebook lung disease group; simply asked the question if this group was open to questions about different matters, and KellyKats blocked me from her facebook group!!! How controlling is that! I’m glad I found this place here on mayoclinic.

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I feel sorry for the very sick people with lung disease and are seeking support that are caught up in the KelllyKat group. Not sure what the owners of that group are doing but I was very uncomfortable and got out. Sure would like to warn the others!
Something strange there!!

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Hi Lisa, I'm just starting this journey too and began taking the 3 meds this week...so far, so good and no nausea! I've learned so much in a short time with this group, I'm following the suggested timing of the meds (info from Dr. Huitt at NJH) which I think can help with nausea and side effects. Hang in there!

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The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.

I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue

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