Should I take Big 3 + inhaled ARIKAYCE

Is six weeks average for clearing MAC on Arikayce?

Yes that is what the doctor said, actually he wanted to apply surgery on me after I took antibiotics for 2months.

I am also thinking about stem cell therapy. I find an article from Case university. They find stem cell therapy can help in some ways.

Really appreciate your feedback! I am more and more into antibiotics.

Thanks a lot for Sharing your information. My concern is that even if my MAC will be cured, I will develop other infections, different strains, which happens to some other patients as well. The reason is long term use of antibiotics weakens the immunity system. So I am thinking of adding more weight to make myself stronger before I start the antibiotics.

Is there any success case for long term fully cured patients with both cavity and nodule ?
How do you manage it?

Thanks a lot.

I think it is case by case.
Everyone is different. Dulwich used big three antibiotics first, possibly six months and then added the arikayce. But we can definitely refer to his success story which is really amazing! 🙏

Sadly this disease has a reputation of reoccurring even if there is a period of negative cultures. I have issues with keeping weight on but drinking Boost Plus shakes has helped tremendously. I do know of 1 person that had a lung resection of the cavity area and she's been negative for MAC for a while. Its quite rare though.

I had a failed resection 5 years ago. One Dr here now wants a RUL lobectomy. I'll put if off as long as possible. It's either the surgery or antibiotics for life for me. My quality of life has been so good the past 18 months, I hate to mess it up. Surgeon says I must do Amikacin IV for 6 weeks prior and 2 weeks after. I had Amikacin before, I did no do well at all. I'd be risking permanent dizziness if I did. Tough choices we have.

Thanks a lot for your information. Sounds like what my doctor wanted to put on me - Antibiotics + surgery.

Weight - I drink a lot of soup with potato , sweet potatoe, carrots and other vegetables, in addition to avocado , and that helps me maintain weight too! 🙂 I hope this is helpful to you as well.

Is it minimally invasive? If so, it should be okay. The key is to find the best doctor. But if you feel good , I think taking a conservative approach is always the best. 🙏 To be honest too aggressive may not do anything good..

I agree with Jack, Suzyqueue and the others. Since your condition is cavitary, you may wish to consider the Big 3. I have not had much trouble with rifampin, rifabutin, ethambutol, or clofazimine. Some do, but you won't know until you try the Big 3. I am also now on amikacin which has caused some shortness of breath, but not all experience that, either. They sometimes reduce the frequency of the amikacin, which can help with breathing sensitivities.
The hearing tests for the amikacin can detect changes in your ears before you notice hearing loss, so if you get monthly hearing check ups, that should help. If you would have any hearing loss, they can take you off the drugs. Same with the eye tests with ethambutol. I have been on ethambutol twice, and had no optic nerve damage. You can adjust what you eat to help you physically with GI issues. Rifabutin was easier on my system than rifampin. By monitoring how the drugs affect your eyes and ears (via check ups), kidney and liver (via intermittent blood tests), you can avoid most serious issues before they start. Because you are young, try to get someone to tell you what caused your MAC. Do you have GERD? Bronchiectasis?
Best regards, and I wish you a safe and healing regimen.

Mokie

Thank you so much for the sharing and I really appreciate it. My doctor discussed about the side effects and mentioned some damage to hearing are permanent. I would definitely take your suggestion on monthly check up for vision and hearing loss. I also searched for this article, which mentioned Kampo medicine, combined with big 3 or used alone, effective for NTM disease.
I am thinking of getting some Kampo medicine from Japan, which is effective to fight NTM and also helps with appetite, etc.

Not sure whether someone used it before.

Yes I may have mild bronchiectasis but I really don't have any symptoms. I had frequent pneumonia when I was an infant , which formed scar in my lung, I would think this may be the reason for MAC. Thank you so much for your reminder. You are really intelligent and logical, and I hope you have a great outcome too!!