Non treatment of MAC

Sue i just finished my treatment. Had my ct a few weeks ago. The scan showed mai infection. Treein bud and waxing and waning nodules. I thought the lungs would be clear. I feel the meds didn’t work. It probably kept it from getting worse. Going to lung doctor this Monday. Will wait and hear what he says. Wondering if this is what all see after ending treatment.
Miriam

Oh Miriam, I know how frustrated you must feel. Yes, sometimes the treatment doesn't eliminate the infection - as in my case and possibly yours as well. But lowering the infection is sometimes enough - I have managed to stay off the meds for 4 years now with airway clearance, exercise and a good diet. Also by keeping my asthma well controlled & avoiding respiratory bugs.
It will be interesting to hear what the doctor has to say. After the second post-treatment but still-positive culture, my doc has decided as long as my bronchiectasis remains stable and I don't feel sick, we just wait.
Do you feel healthy (other than the aftereffects of the meds)? And is your cough gone?
Will you let me know what your doctor advises?
Sue

Thanks Sue,
A few months after having a lobectomy of the LUL in 2018 a waxing and waning. airway infection starts showing up on my CT scans every 6 months. Earlier this year I started twice daily nebulizing albuterol and 7% saline, after 5 months I became so depressed I stopped, I felt much better within a week. I changed pulmonologists and got referred to an ID association Dr. In between all of this it was discover during the surgery the nerve to my left vocal cord was cut leaving it paralyzed and not closing the gap between the right side. They injected it with a filler, which is starting to deflate, I have a surgery for a permanent solution scheduled. I know in order to produce sputum to culture I need to start nebulizing again. I'm 85 yrs old, this is not the way I planned on spending my twilight years. Based on my experiences, when I think I know how some one feels, I do, as you most certainly do.
Don

I hear you! Though hopefully not [quite] to my twilight years, being a decade younger than you. But many days I look at that lineup of nebs, meds, inhalers, Aerobika and pills, and the list of exercise and stretches I must do just to keep moving, and wonder "What if I just chuck it all and see what happens?"
Then my grands show up, wanting to play (today is our Halloween) or a friend calls and we plan a lunch date...
The 7% sodium wasn't my biggest problem - it was the albuterol. My pulmo switched me to 2 puffs on an inhaler, wait 15 minutes then neb the saline. It was much easier on my body the the nebulized version, which sent my essential tremor off the charts.
Maybe that can work for you?
Sue

Essential Tremor also. My neurologist who I see every 6 months always asks me, has any one in my family had Parkinson's, no. Primidone 2 tabs at bedtime.
I don't have grands, but my wife of 53 yrs. is a decade younger, a foreign national with a US permanent residency. I promised I would do everything possible to live as long as I could.
There would have to be a reason to not just give up.
Don

Miriam
My doctors did not expect improvement in the CT with treatment but hopefully no worsening. My cultures have been free of MAC for two years but CT no better
Have you had recent cultures? This always seems a more reliable indicator of active disease, at least for me as I never had symptoms

Remember we are all different. You cannot disagree,for all of us. For me after 4 years the cure became worse than the disease. I am currently in Denver seeing the doctors at NJH. They have done a bronscopy and will test to see if my body has grown resistant to the three meds. My hearing has taken a serious loss and my sight a small downward trend all due to the three meds. They told me for no do NOT take the meds. My pulmonologist ordered 3% saline - for almost 4 years I used 3%. Reading 7% was better on Mayo I found it much more effective. MAC is rare and I have found that many pulmonologist know little about it. We learn as we go. Our bodies are each different and so should be our treatment!

Essential tremor and Prakinsons on both sides of my family. Last nigh we had one of our periodic "sibling suppers" at a favorite restaurant. Four of us -all with various states of essential tremor, arthritis and lung issues...can you say bad genes? But we all keep on moving - too many reasons to keep living a full life 14 kids and 27 grandkids among us. All of us married at least 47 years.
Sue

I have read suspending treatment can result in a antibiotic resistant worsening of MAC

I am just finishing my first month on Arikayce (plus Azithromycin and Nuryva). I received a notice from Express Scripts that I did not qualify because I had not had 6 months treatment, but the next day I received a call that it had been approved. Apparently my ID doctor expected that and sent the appeal. He had told me that would happen. Either the specialty pharmacy or the manufacturer told me the Express Scripts would give me a copay of $77, but they enrolled me in a plan that allows me to have a copay of $10 per month. I have been told that they are now allowing Arikayce to be used initially as it is having good results.