← Return to New to MAC and considering treatments options: What did you do?
DiscussionNew to MAC and considering treatments options: What did you do?
MAC & Bronchiectasis | Last Active: 4 days ago | Replies (195)Comment receiving replies
Replies to "So happy to hear it’s going well for you. Sorry about that doctor you were with..."
I was diagnosed Feb 2020. The first 2 pulmonologists I saw didn’t want to do any thing not even airway clearance. A third doctor, NTM specialist, wanted to wait and watch, but started me on dry airway clearance, ie. without saline. Still no sputum production. My CT imaging revealed progression of the infection. When I discovered National Jewish Health online, I made an appointment to fly to Denver and be properly assessed by them. It was the BEST move I made after a year and a half. They taught me how to properly do airway clearance with Albuterol and 7%saline in addition to many other things. It was not until then that I was able to produce sputum and had several specimens cultured. After 3 months of twice daily airway clearance, the sputum culture was still positive with no reduction in colony count. Then, the pulmonologist I saw back in March at NJH decided that it was time to consider the 3 antibiotics and find an NTM specialist locally to follow up with and order the Vest to improve on sputum production. I found a doctor at a medical university NTM center who ordered the Vest and offered me to join one of two clinical trials for patients with NTM. I chose the 2 vs. 3 antibiotics. My randomized selection put me in the 3 group. So, now, I’m on Azithromycin, Ethambutol and Rifampin. The delay in starting treatment was partly because of my fear of severe side effects. Eventually, I convinced myself that treatment now is better than in a year or two. We don’t know what the future may bring us. Why delay the inevitable? The only side effect I have had was some intestinal cramping the first week only on the days I took the meds, MWF. Now, It hasn’t been a month yet, but I’m glad I started the treatment.
Meanwhile, I continue to do airway clearance twice daily with the Vest. Aerobic exercising, 30-60 min, is another daily routine. Moreover, I have installed a special water filter AquaMedix (0.2 micron) in my shower and bathroom sink. My drinking water is either boiled for 10 minutes, bottled spring water or filtered through LifeStraw filter. I use these 3 drinking waters to wash my fruits and vegetables unless I’m cooking them. I don’t garden anymore, but if I have to help any, I wear a mask. I take my water with me to restaurants and only order cooked vegetables. These are extra precautions I’m taking to hopefully reduce my exposure to MAC. Time will tell if they are the right thing to do to stop the infection from recurring.
I know some people have managed to be free of NTM for years after multi-antibiotics treatment, but don’t know if they went the extra mile to achieve that.
Would love to hear other people’s precautionary measures to stay clear of their NTM.
I would hesitate to say that 7% saline, or anything else, will cure MAC - not even 18 months of antibiotics managed to do that for me.
What has worked is that 7% saline plus daily airway clearance has MAINTAINED me after quitting the drugs, and according to my last CT scan, maybe even improved things a little. Others here have had the same experience - @thumperguy @becleartoday @nanette @cila - and may like to comment.
If you have not tried it, it might be an option for you, as long as your MAC has not progressed to form cavities in your lungs. What are your symptoms at this point? Is the doctor suggesting you start antibiotic therapy?
Sue