NOT BEING TREATED FOR MAC

@cheb

I was diagnosed with MAC/BE/and a fungus 3 years ago. I had your symptoms, tried the Big 3, which I couldn't tolerate, and I'm still here 3 years later off of any medications and living my life. Although I don't know all of your details, "watch and wait" is the best place to be if you don't have symptoms necessitating the meds. I go to NJH every 6 months for a check up and my results, to this point anyway, show very little change over these years -- just what I like to hear! Remember, the disease is generally a slow-growing disease and we will most likely die "with it" as opposed to "of it."

I'm hoping you are in my similar category of disease -- "watch/wait." Initially, I was freaking out over results and symptoms, but once I began to adjust and then seeing few changes over the months through the testing, I began to live life and have settled down to enjoy each day as it comes. It's not ideal due to effects of my diseases, but I am enjoying my life and focusing on the things that mean to most to me. I would follow your doctor's advice, especially if your symptoms aren't major ones. Best to you!

@conniec I'm not sure there is a right or wrong answer, but I do air clearance first thing on wakening, then nebulize. I find sipping on hot liquids first thing in the morning, coffee or tea, starts to thin my mucus which helps with my clearance. He actually started me on air clearance immediately when I was diagnosed, and started me nebulizing at my May six month follow up. When I inquired why he waited until then, he said he knew he was overwhelming me with the new diagnosis of BE, plus MAC diagnosis a month later, and he didn't want to also start with the nebulizer. He acknowledged it's all a lot for patients to process when newly diagnosed. Most have never heard of the disease, nor know anyone with it. He is right about that! Jeanne

Do you use Aerobika?
Is that your airway clearance?

@sheila7a My airway clearance is 30 minutes starting with mindful breathing, and a series of three breathing exercises including the huff cough.My team referred me to a video where these are demonstrated, and worked with me to be sure I was doing them correctly.I do them in bed after I wake up, and in the evening before sleeping.Jeanne

Thank you for your reply.
Is there a way you can share the video?
I don't think the Aerobika is helping me anymore.

I’m having trouble pasting the videos but here is the website and procedures that I was trained on, and that work for me. I echo Sue in that we’re all different,and one size does sure not fit all for this disease. I’ve never used Aerobika, but now nebulize twice daily with 7% saline and am doing well with that. The website is:
impact-be.com/airway-clearance/therapy/ The three therapies I do are: 1.Active cycle breathing 2. Autogenic Drainage
3. Huff Coughing. I’ve become as “ addicted” to doing this as I am my morning coffee.😊I love it doesn’t involve a device and can easily do it anywhere. Good luck to you.Jeanne