Welcome, Joanna, to our group. When you are first diagnosed with MAC, it can feel as if your entire world has been turned upside down - new medications (and their side effects), coughing (and coughing up blood), having to change the way you live life...it can seem overwhelming.
Let's start here "...Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things..." Getting rid of the infection should be #1 - you are lucky we are nearly into 2025 as the protocols have changed, and if the 3 drugs don't do the trick, there is an inhaled antibiotic that can be added. After that, it depends...my Bronchiectasis has been stable per CT for 5 years now, the nodules went away after treatment, I have a new med to control my underlying asthma, and my pulmonary function has not worsened. Not everyone is so fortunate, but I believe asthma control, airway clearance, 7% saline, diet and exercise have helped (though I have slacked off on the exercise while healing from shoulder surgery.)
And you asked, "...Also wondering about altitude as I love to ski..." Everyone is different, so I can only share my own experience - while I had an active MAC infection and was on the meds, I could not tolerate even 5000 feet without severe altitude sickness symptoms, so I was leery of the mountains for a few years. Now, as long as I give my body a day to acclimate before vigorous activity , I have no problem.
Finally, I am not surprised by your doctor's prohibition on hot yoga - mycobacteria thrive in a warm, moist environment, and become concentrated in small spaces, that's why Dr Falkinham is so adamant about avoiding indoor hot tubs and spas too. He would definitely agree with your doc about hot yoga.
Have you begun doing airway clearance? @irenea8 is a great resource to consult about how to do it safely with hemoptysis.
Here is a great video on why we do it, Dr McShane is one of our best resources:
Thank you so much for your reply Sue! Your responsiveness and advice is great and gave me hope. I’m going to a new pulmonologist at the moment to get a second opinion because the other Dr is great but virtually impossible to get in touch with. My goal would be to have a care team that in integrated and communicative - there was another forum member who had good communication between all practitioners - that’s what I’m trying to assemble.
Hello Sue and everyone - the new pulmonologist I went to in NYC yesterday (he follows Nat Jewish Health protocol) advised me to take the big 3 everyday and not 3 days a week as my first pulmonologist did. This is because I have cavitary MAC. I’m going to try taking all 9 pills every day, all at once and see how it goes. My diet has always been clean and I’ve ramped up exercise which really helps. I do feel wiped out in this moment after 2 days of full antibiotic protocol but hopefully my body will adjust. Main symptom is fatigue. Be well and Happy Holidays to all.
Thank you so much for your reply Sue! Your responsiveness and advice is great and gave me hope. I’m going to a new pulmonologist at the moment to get a second opinion because the other Dr is great but virtually impossible to get in touch with. My goal would be to have a care team that in integrated and communicative - there was another forum member who had good communication between all practitioners - that’s what I’m trying to assemble.