Relevant questions to ask infectious disease

I don't know of any antibiotics approved to treat MAC other than the "Big 3" of which it is not recommended practice to only use 2 antibiotics.

Hi D,
I cannot help with questions for infectious disease dr but I've been told nebulizing with 7% saline has been shown to inhibit the growth of MAC bacteria by providing an environment this bacteria do not like. I've have bronchiectasis and MAC for several years now. I am not on any antibiotics due to my fear of the side effects. My daily routine is to nebulize with 7% hypertonic saline, along with using the Aerobika device followed by 20 minutes with the compression vest. Prior to using the saline, I had a very bad cough and a lot of congestion. But, since I started the saline nebbing, my cough and overall condition has improved greatly. I know figuring out all of this is so hard. Best of luck to you.

@deemaniduenas Wow! I thought I was the only person to get "fired" by my doctor.
My first pulmonologist was insulted when I consulted an ID doc & dismissed me - best thing that ever happened - now I have one who is much more up to date and works well with others.

As to whether you can be treated for MAC without ethambutol, the answer is yes. Many people have to stop it due to vision changes, and go forward taking only Azithromycin and Rifampin. If that combination isn't enough, the docs now have another medication in their arsenal - an inhaled one called Arikayce. I wish that had been true back in 2018 - it was still experimental then.

Have you found someone with expertise in managing Bronchiectasis and MAC? Not every pulmonologist or ID doc falls into that category as they are both considered rare diseases.

Sue

The antibiotics I’ve been prescribed are the results of the susceptibility testing. Everyone is different and not all respond to the same antibiotics

Dee
Here are a few questions:
Do you actually need antibiotic treatment forMAC currently? Are you having bad cough, fatigue,weight loss? Progression of CT scan changes or a lot of bacteria in your sputum?
If you need treatment, which antibiotics is your bug sensitive to?
Clofazimine and Arikayce are commonly used as alternatives to ethambutol
How sure are you that ethambutol caused eye problems- was it documented?
Did the problems improve when you stopped medication?
How is your general health and ability to tolerate treatment?
Would watchful waiting while using saline nebs and any other airway clearance be an option for now?
Good luck with the consultation

Hi Arlo,
I am to start the 3 antibiotics next month. I am terrified of the possible side effects. How did you and your doctor arrive at the decision not to use the antibiotics?
I have had bronchiectasis for a few years, now have MAC.
No symptoms. Actually I feel great. I have energy, appetite, no cough, exercise regularly, eat well.

Hi Isabelle,
My dr knows I am extremely apprehensive about the Big 3, given that I am a musician and one of the possible side effects is hearing loss. That combined with the fact that I have 2 close friends and 1 former work colleague that have lost part of their hearing from antibiotics. That is a little too close for comfort!
As with you, I really don't have any bad symptoms i.e. weight loss, shortness of breath, fatigue, fevers, etc. My worst symptom has been a cough which has improved thanks to my diligent daily 7% hypertonic saline nebulizing, airway clearance with the help of Aerobika and compression vest, adhering to a mostly plant based diet, positive thinking and regular exercise.
I know not what the future holds for me but, as long as I am feeling good and my CT scan & labs are stable, I do not see the need for the Big 3. However, that being said, should my health present a danger, then I may consider more aggressive treatment. Good luck to you....I wish you the best!

Thank you. It’s a conversation I need to have with my doctor.