← Return to Newly diagnosed and scared

Discussion

Newly diagnosed and scared

MAC & Bronchiectasis | Last Active: 5 days ago | Replies (26)

Comment receiving replies
@nancywf

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.

Jump to this post


Replies to "melb06, I was diagnosed with MAC and BE early this year. I went through a number..."

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.