Newly diagnosed

Hi Christine,
Also a small framed, BMI of 19.5. As a retired microbiologist, I know that to fight infection our bodies break down fat and muscle to supply our immune system's T cells response.
Anyway, my answer to weight maintenance during my MAI journey and muscle loss is hitting the gym! After my daily run of 8 miles, I lift heavily and rotate upper and lower body. I've added two protein shakes as well. I have a great appetite like you do, so I capitalize on any opportunity to eat healthy calorie dense
foods! Weight is 116 with the start of Big 3 in March, added Arikayce in July and still a loud and proud 116#. Mind, Calories, and Gym over cellular metabolism Lol!

I was recently diagnosed with MAC Avium. I am waiting on whether I can take the traditional three-drug regimen. I have no signs other than a small nodule in my right lung and a calcified nodule on in my left lung. Any thoughts?

Terri,
It is serendipitous that I got your response this morning as I just came from setting up an appointment with a trainer at the local gym.
I've lost both muscle and fat. It makes sense. The
energy has to come from
somewhere. I am a retired Dietitian. Much of my professional experience in weight loss is due to undiagnosed diabetes or cancer. This is all new territory.
Thank you for your inspiration!
Christine

Christine
I just didn't feel well but it is one of the things that you just don't bother to tell your doctor, but when they got worse and was loosing weight I told him. He also noticed my weight loss. At my worse, I had loss 100 pounds, from 206 lb to 106 lb. They did a chest CT and found a lot of problems that were attributed to MAC. But after being on the meds I hopefully beat it. I know it could hit me again anytime, but I will take the time I have and LIVE!

Stay positive, it will take time and the road is bumby, but the rewards are worth it. Keep in touch with the people on this site as they have a to offer. Jane

Welcome, Roy. I'm sorry you need to be here. I think your post was missed in the middle of Cissa's. I'm pretty sure you'll get more help if you post a new one if you don't get more replies to this one.

Several questions come to mind. What prompted your studies and diagnosis? Were you coughing a lot, short of breath, etc?
MAC is not a common disease and many pulmonologists and ID docs have seen few cases. Is an infectious disease doc involved? Are you with a clinic that sees a lot of cases?
Does your CT show bronchiectasis, too?
Are you doing airway clearance?
If you post a new thread, include answers to these questions since they're likely to be asked.

I'm really sorry you need to be here. I ended up not having MAC, but remember the months of anxiety waiting for a diagnosis and plan.

I think you'll find a lot of hope here. Many have pretty active lives after their diagnosis and treatment.

Is the delay due to blood and other tests?
I was diagnosed after sputum test. Had to wait 6 weeks for results and then 3 weeks to see doctor. That was yesterday and I started antibiotics last night.
Glad you brought up trachea. I told him my throat hurt on and off. He didn’t react. Thought using my voice a lot caused it but no. Swallowing is difficult sometimes too.

For me, the radiologist suspected mycobacterium and bronchiectasis on the CT in June. The bronchoscopy cultures confirmed avium in July. The appt to see the ID doctor took 5 weeks after diagnosis.
I'm due to start treatment in 1 and a half weeks.
It's weird because I was just wondering if my sore throat today is related.
I was going to message my doctor.

Do let me know what he says.
My dr never told me that rifampin can turn your urine dark orange. My pharmacist warned me so I’m sharing with you in case it happens. Apparently it’s fairly common.
They may be checking the sputum’s reaction to the chosen antibiotics and thus the wait.
It will come soon enough.
I hope it goes well for you.

This is like learning a whole new language. Figuring out what is normal and what is concerning.
I coughed up blood last night and my sore throat is worse. The last time I saw blood was 2 weeks ago.
What triggers it I wonder?

I know we are more susceptible to secondary infections. I'm hoping once I start meds this will subside.

Yes, they were going to check on resistance. She's already listed the 3 meds in MyChart. Azithromycin, Rifampin and Ethambutol.
I'm not excited about the sound of any of them.

Thx for everything.
Christine

Christine - I have not started the antibiotics due to my feeling well, not having an exacerbation, no longer losing weight (gained only a five pounds back as yet). I turn 83 next month....I am so thankful that so far I feel well and can do all I need to do for myself with my daily BE routine.
FYI and Thoughts:
The highly knowledgeable Dr. Pamela McShane who was at Tyler, Texas now with NIH did not prescribe Rifampin for me when she had suggested I start the antibiotics. I chose not to start the two antibiotics due to all I mentioned above. That was in 2024 and I was diagnosed with MAI in 2023. It is my understanding that Rifampin has been questioned, dropped and not being prescribed, by many pulmonologists treating BE patients. There is information on the internet that states the reason why it has been dropped by some pulmonologists. There is information from the NIH on it. I found it by Googling: Factors influencing pulmonologists not to prescribe Rifampin with MAC.
As I mentioned I am replying so you have the information for yourself and therefore food for thought. I am sure you believe that you are your best advocate, you yourself......knowing yourself.
There is so much to learn and know in the beginning. Hope we all are helping with what we have shared with you, what we know and do for ourselves. I learned most of what I know on this site.
Barbara