Newly diagnosed and scared

Welcome to Connect. I’m really sorry you need to be here, but think you’ll find good information and caring members. One question: do your docs see a lot of MAC patients?

I don’t have MAC but know from this group that a cavity is more likely to be treated. Also, some tolerate the meds quite well and some have issues that require adjustment.
I’m attaching an older discussion about cavities that had a lot of responses.
https://connect.mayoclinic.org/discussion/cavitary-mac/?pg=5

Thank you for the reply and the link. Im not sure how much MAC my doc sees. The ID doc suggested that she sees this fairly often but i did not ask this directly but will!

Welcome to Mayo Connect, you have come to the right caring and helpful group.
MAC is really scary when you are first diagnosed, especially when you read about the medications we call "The Big 3", but truly it is manageable.
The cautions about potential hearing and vision issues are scary, but if you ever read the "fine print" on most antibiotic inserts, you will find cautions about serious side effects. The good news is that you have been forewarned, so if you see changes you and your medical team can respond right way.
This 2023 video from National Jewish Health, one of the leaders in treatment of MAC, explains the most current protocols on when to treat:

I was one the Big 3 for almost 2 years, including 6 months taking them daily, and had no changes in my vision and only a slight increase in tinnitus.

Thank you the reply and the video. That was very helpful. I will ask about getting visual and audio baselines. That was not discussed and i already get ringing in my ears periodically. Its very hopeful to hear that you had minimal issues.

Make sure to take a good probiotic whilst on your treatment.

melb06, I was diagnosed with MAC and BE early this year. I went through a number of consultations and like you was terrified of the treatment. While I am asymptomatic, multiple nodules and a very small cavity were identified on CT scan. I have found this group to be incredibly helpful and gained a huge amount of knowledge (and very helpful suggestions) through this online community.

I began my treatment with the Big 3 in mid-September. I'm currently on a 3 day/week regiment, and staggered the introduction of the drugs, one each week over a 3 week period. I take the Azithromycin and Ethambutol with a bowl of oatmeal in the morning, and then Rifampin in the afternoon and at night before bed on empty stomach. I haven't as yet used any probiotics, but I do eat yogurt and drink Kefir, and take a personalized mix of some Chinese herbs (prescribed by a Doctor of Oriental Medicine).

I am happy to report that to date I have had only minimal/occasional (GI) side effects. I'm still early in my treatment (coming up to 3 months), and I am hopeful that I will continue to easily tolerate the drugs.

I hope this is helpful. I know when I was in my decision-making mode, I read a lot about the difficult experiences that people had, and this was quite disturbing. I am grateful that this has not been my experience and wanted to share this with you.

This so helpful and encouraging. Thank you so much for your thoughtful reply. I will be starting a daily regimen of the big 3. I have one 4-5cm nodule with cavitation which is why i assume ill be taking daily meds. I wish i could do 3x a week regimen. Im allowing myself to wait until this weekend to begin the meds. I do work in an office everyday and i worry about GI issues.
Again, thank you and im sure i'll be reaching out to this forum as i progress down this road.

My primary doctor suggested using Clear Lungs. He said a patient suggested it, and his family says it works. It is a Chinese herb compound I get on Amazon. Yes, it helps a lot! My pulmonologist didn't seem too enthused but didn't say to stop taking it. I thought you might want to compare what you are taking to what I am. Sometimes, it is almost the same and can be less expensive.

I was just diagnosed on Nov. 29, the day after Thanksgiving. I did my research and luckily had a long-awaited appointment with the pulmonologist on Dec. 3 (It took 2 months to get in, and they were the soonest). I was started on the big 3 the day I was diagnosed. The pulmonologist added a steroid inhaler called Breo, which he is now upping the dosage of the medication. I am seeing him today after going south with my breathing and going to my regular doctor. Read my earlier thread for all the details.

I had bad diarrhea when I took this combo before they knew what I had and were trying to get rid of pneumonia. I had to stop the Arythomiasin because of it. But that was every day. Now that I am taking it 3 times a week, I am not having any issues.

This site is a God send. I am so glad I found it, and I hope it helps you out as well.

Interestinsg.... I have never heard of Clear Lungs.How long have you been taking it