Newbie here. Scared and overwhelmed by MAC treatment plan

Her daily itinerary is wonderful. I intend to copy it. Her attitude toward this illness is uplifting. I'm seeing my doctor on Monday and will know what to ask him for in terms of medication. I have been given Azithromycin 500 MG daily and Amox-Clav 875-125 MG, Generic for Augmentin, one tablet every 12 hours. I am no better after a year or more of this regimen, still profuse sweating, fever, fatigue, lots of mucus, coughing, and frequent naps. My grandson has cystic fibrosis; my daughter and I both have the SCNN18 Gene. I would give her a big hug!

Thanks for your positive feedback about treatment experience. Your fitness level and positivity contribute, massively, to how you’ve managed so well! I’ve just got to stop fretting and get on with it but it’s not an easy decision - for anyone.

It was scary for me, as well, when I started the big 3. I started the first on August 1, added the 2nd on August 4 and the third on Aug 8. At this point I haven't been told/asked to do the IV drugs. I haven't experienced any nausea which is great. I'm so pleased with that. After adding drug #2, I had with a low-grade fever off and on for several days but it has mostly subsided. I still wake up at night in a sweat but I can get back to sleep after not too much time. I'm taking probiotics and really focusing on eating well as I don't want to lose weight. My energy is not as good as it once was but its not bad and I am going to the gym on a regular basis. Still, I'm fearful as they're monitoring my blood, my heart etc. It's intimidating but I'm getting support from friends. One day at a time is how I'm tackling it. I hope it goes well for you ... and for me.

Thank you! I’m so glad the big 3 is going better than expected! And you go to the gym! That would be a huge improvement for me. I feel I have less energy all the time. Really working hard at eating well pre treatment. I can’t lose any more weight. It is the IV that has me the most worried. Thank you for sharing. Every ounce of encouragement is appreciated.

For those of us who have been slim our entire life and can't afford to lose an ounce, the very best way to maintain or gain weight is going to the gym! Pump the iron!!! Working out is paramount for good energy levels to combat fatigue (if you have it), and for mental health maintenance to get through this "bump" in our lives. A bright and positive outlook will go miles in accepting your BE/MAI dx; after all it's not cancer-nor a death sentence-woo hoo!

Is appetite still a problem for you?

Nope. I eat every 2 hours making sure I don't interfere with the meds absorption (which is absorbed best on empty stomach). My metabolism is very high, so I eat whatever and how much I want whenever I want. Still easily maintain my 116 lbs. I'm not a fretter or debbie-downer, so that helps tremendously as well.

Hi, I just started my treatment last week as an inpatient. I came home Tuesday night and started home IVs of Amikacin and Imipenem until the oral pill is approved and then received. Plus taking oral Linezolid daily. My first home IV of Amikacin 1,500 mg (3 times week) took 4 hours. I did message my doctor and he is checking with the ID pharmacist about increasing the dial setting on the IV. Medicine bag says 250 mL/hour, and that was our first one at home so maybe didn’t have the tubing inserted as much as needed. My second dose is this afternoon. I also ask my home health nurse and she wasn’t sure if okay to increase the setting for Amikacin.
What is the setting on your medicine bag and how many hours is your IV treatment?
And I would appreciate anyone else’s experience. Thank you.