Diagnosed with MAC but not being treated

I was just diagnosed with Mac and bronchiectasis. What happens if I don’t take the antibiotic regimen? I am 76

I'm glad to see you are getting some good answers from your doc. Are you also using 7% saline nebs? There is good evidence that it can help keep the MAC germs in check, or perhaps even reduce them.

I was still MAC positive in 2019 when I stopped the antibiotics, and 7% saline plus airway clearance (Aerobika and Huff Coughing) have kept me healthy ever since. It seems from what I have been reading here recently that more docs are watching and waiting before starting the antibiotics if symptoms are not severe.
Sue

Carol, you may just be fine if you don’t I the antibiotic treatment. It’s a decision that ultimately you need to make with as much information as you can find. Many of us have declined the antibiotic regimen while many others have successfully gone through treatment. It depends on how bad your bronchiectasis is and how bad your MAC symptoms are (if you have any). But you do need to do airway clearance with nebulizing 7% saline. It has kept the MAC suppressed in many, including myself. I was diagnosed almost 2 years ago and my last sputum test have not shown MAC. That’s not to say it’s gone.

Need help. I have been using the following on a daily basis and, despite this, I still have constant nasal congestion, a post nasal drip and nearly constant cough.
Flonase, Loratodine 10mg, Mucinex DM (2x/day), Clear Lungs (Chinese herbs)
I use compression vest and use Neli rinse 2x per day
I am especially prone to coughing fits at night which wakes my husband. He said I even cough in my sleep! My dr prescribed Guaifenesin w/codeine 10mg which I use very sparingly.
I keep seeing mention of 7% saline numerous and asked my dr.
Here is her response: "I don't generally use 7% saline. I use mucomsyt mixed with albuterol to thin the mucus, along with the vest. If this does not work, then I use dornase."

I am waiting for the acetylcysteine 100 mg/mL (10 %) solution she prescribed to be used with my nebulizer 2 or 3x per day.

I am afraid of the antibiotics and have read,with underlying Bronchiectasis, there is no guarantee that you will not become reinfected even if you beat it. Plus, I have 3 friends who lost their hearing in one ear due to the antibiotics. I am a pro musician and this scares the heck out of me.

I am exercising and I eat healthy. I am trying my best to keep a positive attitude but this is staring to get to me. I have not gone so far as to wear a mask in the shower or boil my water. Do you think, if I have MAC already, would wearing a mask prevent it from getting worse?

Your thoughts are greatly appreciated. Thank you for your support.

Based on your symptoms and my experiences, let me comment on your medication regimen:
Mucinex DM contains a cough suppressant and should not be used long term. The right Mucinex to use long-term is Mucinex Extended Release which is guaifenesin with no other additives.

Clear Lungs contains about 15 plants and herbs. I know we always assume these are harmless, but I personally cannot use it because there are ingredients in there to which I am allergic. Seeing that you already use Loratadine makes me wonder I wonder if you also may be allergic & discontinuing Clear Lungs might help?

The Neti Pot is repeatedly putting many ounces of saline water into your already overactive sinuses. When I do this, I have continuous drainage in my throat, so I only use it when I have a cold or sinus infection, and then just for a few days. Maybe it is not as helpful as you would think?

As for precautions - a mask will not prevent MAC or keep it from getting worse, but in close contact situations, a mask can prevent you from catching other respiratory illnesses. I don't believe wearing a mask in the shower would offer any protection, nor do I go to the length of boiling my water. In my (inexpert) opinion, you are getting a lot higher dose of bacteria of all sorts in your lungs from the mist above a swimming pool while doing aerobics than from showering or drinking water. Only you can decide which precautions are right for you.
Sue

Kwi..when you nebulize with saline, do you notice some days it’s clear, sometimes there are little plugs……?
Can you share what your daily regimen is with us in terms of how many times you nebulize daily, what and for how long your exercising is daily……etc
How, if at all, has the Mac impacted your daily life ? How often do you get your sputum checked? Thks Bon

I feel like I should reply to this. I was diagnosed August 2021. I have not been on antibiotics and have no symptoms. I have Mac and mild bronchietasis. My ID doctor wants to wait and watch also. He says he has a lot of patients that have gone on at least 20 years and haven’t needed to take the antibiotics. Then he has a few that do. He has stressed on airway clearance and exercise. I am very faithful to do both. I walk no less than 5 miles a day . I do not want to take the antibiotics and don’t think I would but I never say never. He at least gave me hope knowing that it is possible to never have the treatment. I boil my water and am very careful to use a mask once in a while when needed. I use a mask in the shower and know even wear a mask when I wash my hair in the sink. I have heard to many horror stories when people take the antibiotics and was told by my ID that you can’t get rid of it no matter what. It always returns. I am 72 and very much more concerned about the damage the antibiotics do to your organs ,eye sight,and hearing. So all I am saying is don’t give up . Keep exercising and do your airway clearance faithfully.There is hope.

Need help. I have been using the following on a daily basis and, despite this, I still have constant nasal congestion, a post nasal drip and nearly constant cough.
Flonase, Loratodine 10mg, Mucinex DM (2x/day), Clear Lungs (Chinese herbs)
I use compression vest and use Neli rinse 2x per day
I am especially prone to coughing fits at night which wakes my husband. He said I even cough in my sleep! My dr prescribed Guaifenesin w/codeine 10mg which I use very sparingly.
I keep seeing mention of 7% saline numerous and asked my dr.
Here is her response: "I don't generally use 7% saline. I use mucomsyt mixed with albuterol to thin the mucus, along with the vest. If this does not work, then I use dornase."

I am waiting for the acetylcysteine 100 mg/mL (10 %) solution she prescribed to be used with my nebulizer 2 or 3x per day.

I am afraid of the antibiotics and have read,with underlying Bronchiectasis, there is no guarantee that you will not become reinfected even if you beat it. Plus, I have 3 friends who lost their hearing in one ear due to the antibiotics. I am a pro musician and this scares the heck out of me.

I am exercising and I eat healthy. I am trying my best to keep a positive attitude but this is staring to get to me. I have not gone so far as to wear a mask in the shower or boil my water. Do you think, if I have MAC already, would wearing a mask prevent it from getting worse?

Your thoughts are greatly appreciated. Thank you for your support.