Hi @softballqueen! I wanted to point these two threads about MAC out to you because they've been very active and I think you may be able to connect with other people experiencing similar things:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
https://connect.mayoclinic.org/discussion/hello-i-have-just-joined-the-group-i-was-diagnosed/

I suggest you skim through some of the posts and reach out to some of the users in those threads 🙂 Please let me know if this helps!

My name is cola, like you I'm diagnose w/MAC. This is my 2nd week since I start the meds. Try to drink plenty of water and try to eat before you take the meds. I know the side effect of the meds is bad. I can't tell that much b/c this new to me too. I quit my job b/c I so tired and weak.  I will pray for you. 

So very sorry you are experiencing these awful side effects.  I experienced the same thing.  Ended up in the hospital with severe nausea.  Waited a month....tried them again. Same thing.  That was last May,2015.  Perhaps you need a second opinion as some Lung doctors take a wait and see approach.  I am still not taking the drugs.  I see a new MAC Specialist tomorrow at Emory/Atlanta and am praying for a good report.  I applaud people who can tolerate the drugs, but my body simply could not .  Get a second opinion. Blessings!! <br><br>

Hello Queen, Welcome to the Forum! I also have Bronchiectasis and MAC/MAI .. plus Reactive Airway Disease. Truth is I don’t think anyone knows which comes first the chicken or the egg. Did I have the Bronchiectasis first and it became the breeding ground for the MAC .. or the other way around .. who know .. and who cares .. It’s just there and we all have to deal with it!

For myself I was diagnosed in 2007 but was so very afraid of the necessary antibiotics. At the time I did NOT have the support and information of a Forum like this so fear led me to not start the antibiotics until I got a 2nd serious abscesses mycobacterium. After being diagnosed with the 2nd mycobacterium I had no choice and began the journey taking 4-5 antibiotics for 30 months. I lost 18% of my body weight for which I was FORCED to eat my beloved ice cream every night to maintain my weight!

I can only speak for myself .. but yes I was more tired .. I needed a good 10 to 11 hours of sleep at night .. the antibiotic Rifampin did create sleep disturbances for me .. I “ate to live” rather than “lived to eat” but I made the effort that whatever went into my body was healthy and nutritious for my body.

I have now been “stable” and off antibiotics since May 2014. Was it all worth it? You bet!! I am SO aware that we are all given just one body in this lifetime .. and we must take good care of it .. so it can take care of us! During this initial period just know that we are all on this journey together .. keep coming back to this Forum .. and to the Forum at
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=7
.. there are really good supportive people on both Forums! Read as much as you have the energy to .. knowledge is power. For now .. just put one foot in front of the other .. it DOES get better! I KNOW because it is GREAT for me! I have fun .. I travel .. and I love life today .. tomorrow .. and EVERY day! Sending you a Big Hug because I know it is tough right now! Katherine

more information and support with an 800# can be found on the bronch and NTM social community launched by the COPD foundation and NTM information & research foundation.

Im very sorry for all the trouble you are having. Seems like the.opposite of your symptoms have happened to me. since i started taking the antiobiotics i feel a lot better. I 'm not coughing as much as before. I weaned myself off sugar free cough drops. I could have bought stock in them. I was going thru a bag a day. I still walk everyday and i work everyday. I will put you in my prayers hoping that things start looking up for you.
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Thank you Sophie, and I happy for you that you can still work and walk everyday. I quit my part-time job since I was diagnosed with MAC. I tried to look on the bright side but sometimes when I think about it and feel my cramping on my stomach is not easy. Thanks for the prayer.

Hi! I feel your pain! Anything on those 3 inch Advantix for close to a month now three times week. I have diarrhea, overwhelming fatigue, and now blistering and feeling in my hands. I believe diarrhoea has gotten much better, but it seems every time I look at myself a new symptom pops up !

This is one reason I don't want to take the 3 drug regimen.

Katherine were you able to work when taking the antibiotics?