How MAC patients have tolerated taking the 3 antibiotics

I'm starting the Big 3 as well, probably beginning next week. I'm nervous about the side effects too! What kind of probiotics are you doing - like, a probiotic pill or eating lots of kim-chi, saurkraut and kefir? I'm eating kim-chi every day . I want to kick this mycobactium's butt!

Probiotics doubled me over in pain. I was more nervous about what mac could do to my lungs than I was about side effects of the meds since while waiting to start them, a large cavity grew in my upper left lobe. I've had issues where my doctors have me taking 2 Imodium every morning which helps the main side effect I've had

I see you posted this two years ago. Can you tell me if after getting off the big 3 drugs, did you have any gut issues? Meaning, did the antibiotics affect your microbiome in your stomach intestines? Did you have any major gastro problems AFTER being on the drugs for a while? Thanks.

Hi, I was diagnosed with NTM. I've been told to take 3 antibiotics everyday for 18 months. This is how I do it. I set my alarm for 6:30am and as soon as it goes, I take the 3 antibiotics. I take a good measure of water with each tablet. Then wait 30 minutes, I eat a slice of toast and a banana, then I take 1 pyridoxine vitamin tablet. When that's all done I have a prebiotic drink. I can honestly say hand on heart I have not once felt ill or had to run to the bathroom. Getting it all by with in the morning was the best thing for me. I've got all day for my body to recover. Hope that helps. All the best Julie.

Thank you. I'm trying to get info from people that are now off the drugs that didn't take a probiotic, to see if the long term use affected their gut microbiome. My mother is having issues with the digestion, no matter the food type.

We all respond differently. Taking AZ with dinner worked best for me

For those fearful of "the big 3," what helped me is coating my stomach first for any anti-biotic that could be taken with food. For me, it was a banana. Bananas are gentle if you have GERD, they are rich in potassium, and they do not usually contribute to IBS-type symptoms. I also think toast is good. You want to buffer that stomach. Obviously coffee should not be taken around the time you are taking a strong anti-biotic as it will increase the chances of GI troubles. I did not take my pills all at once as to me this could be hard on the kidneys (but I am not certain if that is true). I spread them out, though taking the ethambutol all at once is necessary as this is how the pharmacy orders it. I have been on both rifampin (in the past) and now rifabutin (a sort of twin of rifampin), and for me, the rifabutin was gentler on my system. One symptom I noticed was that one of these medications made me very crabby and intense. I think it was the rifampin and the rifabutin. For that, I tried to take those later in the day when I wouldn't get myself in trouble. Did anyone else notice that symptom? Some studies have shown that if people believe in a drug, the drug works better. How can this be? The power of the mind, I suppose. Believe in the treatment and talk positively to yourself. This also helps. Review what foods can enhance or decrease GI symptoms and steer clear of them around the time of taking the big 3. This is not a super enlightening post, but I hope it helps someone. I was so afraid of amikacin that I let cavities grow in my lungs, and now years later, I am taking it. Guess what? I am tolerating it well, have had no hearing loss as yet, and don't feel sick from it. Sometimes we borrow trouble. I am not saying the drugs can't be difficult, but we do the best to help the drugs help us. Best to all of you with NTM.
Mokie

Hi I also have Mac bronchiectasis was told I may have to start the 3 antibiotics I already took Arikayce for 18 months from 2020 until 2022 ct scans were looking better however had Covid this past January and now just did a bronchoscopy had a pneumothorax and now am seeing an infectious disease Dr who advised me to take the 3 antibiotics I’m so scared can you give me some insight on them thanks so much

Overall how long did you take the 3 antibiotics I’m so terrified to start them how is you MAC now??

Hi Fellow Warriors!
I was diagnosed with Bronchiectasis in 2018 and MAC in 2020. (which came first the chicken or the egg?) Anyway, I went on the big three for 18 months and cleared. Side effects for me were tolerable-But as Rick said everyone’s different though. The best regimen for me was to take the antibiotics at night right before bedtime. I have IBS and G.I. issues, but this seemed to work with minimal side effects for me. Also took my probiotic in the morning with my other medications and kept on this schedule throughout treatment. personally, my biggest issues were fatigue and fever, which didn’t let up during entire treatment. however, the good news is that once I cleared and came off the big 3, I feel 80% better than prior to treatment.
Hope this helps!!
Dee