Options if MAC goes untreated

Posted by goatlady @goatlady, Feb 22, 2021

MY ID Doctor took me off the "BIG 3" last October because I wasn't able to produce any sputum (never have). Had a CT-Scan done in January showing the MAC is still and Bronchiectasis has gotten worst. My Pulmonary Doctor got in touch with ID Doctor about putting me back on the "Big 3". The ID Doctor won't, she called in a prescription of propranlol. Many years ago another doctor prescribed that for me. I had the worst reaction to that. There is no way I am going to try that drug again. So what happens if I don't treat the MAC?

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thumperguy | @thumperguy | Feb 22, 2021

Goat lady, what “non-medical, self-care measures have you undertaken?

goatlady | @goatlady | Feb 22, 2021

In reply to @thumperguy "Goat lady, what “non-medical, self-care measures have you undertaken?" + (show)

I eat healthy and do exercise. Of course with this pandemic, I do social distancing and self-quaratine as much as possible. I do have a nebulizer which use several times a day and my Pulmonary Dr has me on Symbicort.

Sue, Volunteer Mentor | @sueinmn | Feb 22, 2021

Many of us are unable or unwilling to use the "Big 3" for MAC/NTM, but it doesn't mean we are "untreated." 14 months ago I had to stop antibiotics due to increasingly bad reactions even though I was still positive for MAC. I'm pretty sure I still have it, but I'm doing pretty well. I am healthier today than the day I stopped the meds. I call bronchiectasis and MAC "the diseases that I live with", much like others live with diabetes, glaucoma or arthritis.

Here is my self-care regimen:
Use my Singulair & Mucinex daily to keep asthma under control & keep mucus thin.
Use my levalbuterol & flovent inhalers daily to keep airways as open as possible
Nebulize 7% saline daily (shown to inhibit growth of the NTM bacteria in studies) and add a levalbuterol neb if needed for breathing.
Use huff-coughing or Aerobika device at least once a day to bring up mucus (how often depends on how much mucus is there.)
Drink "Breathe Easy" herbal tea by Traditional Medicinals to help thin mucus & open airways plus quite a bit of water.
Eat a diet full of fruits, vegetables and healthy meats, fats & grains (I needed to regain lost weight, which has taken over a year.)
Stretch, walk & use resistance bands to get healthy.

That's it - I still have some very tired days when I rest, a cough, occasional chest pains and always some shortness of breath, but no fever and the green/brown mucus is gone. Anxious to see if the MAC is stable or improved at my next CT in December.

Sue

goatlady | @goatlady | Feb 22, 2021

Thank you for getting back in touch me. I never thought of thinking of it like!

I do take singular and mucinex. I do nebulize with Albuterol and Levalbuterol twice daily. My Pulmonary Dr ordered the Aerobika device. I do eat a lot fresh vegetables/fruits,, healthy meats and whole grains. I will have to look into the Breathe Easy herbal tea. I have an indoor stationary bike and a treadmill which I use during the winter.

Thank you again for all your help!!

Diane