Asymptomatic MAC

I was diagnosed with Mac in 2019. I have a cough but no other symptoms. Like you, I am very apprehensive and my pulmonologist and I are taking the wait and see approach. Another words, no antibiotics. I've been nebulizing with 7% hypertonic saline which is known to create an unfriendly environment for the MAC bacteria thus slowing the growth. I also do airway clearance, use the Aerobika device simultaneously while nebulizing followed by 20 minutes with my Hillrom compression vest. This is a daily routine. I am not sure, with your other conditions, if this is a good approach. For me, however, it has proven to be good thus far. The saline has helped tremendously and my cough has decreased significantly. I wish you well and hope you find the right approach.

@circleup Your situation is similar to mine. I’m a seemingly healthy 53 yr old, I have no symptoms, (although do have mild bronchiectasis) bloodwork looks fine - however NTM bacteria was found in sputum culture and bronchoscopy. The pulmonologist and infectious disease doctor were ready to put me on the antibiotics right away; when I asked if the presence of bacteria correlates directly with disease and they said ‘no, not always. Or you could have an infection that is transient, not true infection. We don’t know”. I opted to do ‘watchful waiting and have a CT scan in June. I’m hoping I’ve made the right decision and every day exercise, healthy eating, airway clearance and Mucinex is definitely a chore, but I’m hoping it makes a difference?

On a side note, I’m doing EVERYTHING I can - eating probiotics like kimchi and kefir, upping my Vitamin D intake, putting on a few pounds to get to 22 BMI, running 2 miles a day, taking NAC supplements, using Acapella device, huff breathing, postural draining, opting for baths not showers, avoiding indoor and outdoor dust by masking when I need to. If anyone else has tips or tricks to share, please do!! Haven’t been boiling water regularly, there’s only so much time in the day!

I also had no symptoms when I had MAC other than a low SAO2 which was running around 85%. I took the 3 ABX with no side effects , you may be surprised how well you tolerate them.

Asked the same questions about doing nothing and the consequences. They said i would be more susceptible to any respiratory infections and the recovery would be difficult. Just got the meds today and waiting on Alikares. I am still on the fence about treatment.

My only real symptom is the fatique and alittle short of breathe with activity, alot of lung nodules. Just got my meds today and waiting on Alikares. I hope i can tolerate the meds. But still on the fence about whether or not to proceed with treatment.

Good luck! Keep us posted

I was recently diagnosed with MAC and bronchiectasis. I am being treated by an infectious disease Dr. At a teaching hospital in Portland Or. OREGON HEALTH SCIENCE UNIVERSITY
I'm in a clinical trial. Like most of you I was so apprehensive about starting this long treatment of a year or two. My breathing was getting worse by the day so I truly had no choice. I take only 2 drugs Azithrymicin and Ethambutol.
3 days a week at night with ice cream.. yes.... that IS EVEN ON RX!! LOL
NO SIDE EFFECTS and great results. In 2nd week my breathing improved 50%....I still Have bit of a cough & fatigue but now in 4 th week that's even better. I exercise daily, walking and strength training and I get lots of rest . Use nebulizer And the flutter. I'm so excited to feel so improved..I truly thought I was headed down hill fast. I was not my self at all.
My team of Dr's are amazing... my best advice is to be proactive.... well read about your lung disease.. and a part of your team.
This is all coupled with autoimmune hepatitis so my liver and lungs fight one another. My immune system is so compromised that I get bacteria in my lungs easily.
I've been depressed but, found freedom in exercise... and dancing put a smile on my face.
My treatment working so fast gave me HOPE!

Good for you!

I am on the two antibiotics mentioned above: Azithromycin (500 mg) and Ethambutol (800 mg) daily, begun about 3 weeks ago for MAC. I too am taking probiotics daily (at night) whereas I take antibiotics during the day so my antibiotics don't kill off the probiotics quickly. So far I have not had side effects other than some diarrhea that I control via Imodium as needed. I am also on Osimertinib, a targeted therapy for non-small cell adenocarcinoma of the lung with mutations, that was discovered 6 months ago, at the same time MAC was discovered. I had a lobectomy in February that started this journey. Osimertinib causes diarrhea and fatigue so I would say it's a double whammy for my body. I am active and exercise three days a week by swimming a mile each time and it takes longer than it did pre-lobectomy but I can still do it. It makes me feel normal and I can manage my world if I feel normal. I nebulize twice daily, usually with 7% saline, sometimes only once daily when I'm busy. I don't have much cough or secretions but I try to cough to inflate my lungs. I have CTs about every three months and am in regular contact with my pulmonologist as well as my oncologist. Staying strong is important. There is scientific evidence of the therapeutic value of exercise in cancer care as well as cardiovascular and respiratory care.

I am 46 and have MAC/MAI. My doctor at NYU said given that I am a relatively young and otherwise healthy, she would want to treat my MAC infection aggressively and get me in the Encore trial (I go back in to discuss the treatment plan this month).

As a second opinion, I asked the same question of Dr. Chuck Daly at NJH during his recent webinar on NTM Mycobacteria—whether he would opt to treat someone of my age aggressively and he said he would simply because it would hopefully wipe the slate clean with the goal of avoiding additional infections which could set me up for worsening symptoms and bronchiectasis.

I am on the fence too because of the potential for side effects from the medications and I have been very consistent with my Airway clearance, but their reasoning also makes sense and I trust it. Will see how it goes when I go for follow up this month.

Dr. Chuck Daly's webinar: https://youtu.be/5cgFoQ0aDAc?si=yhb8SkB3CShk-0W1
Encore trial: https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/?section=elg