I am in the care of a good pulmonologist, who agrees on wait and CT track my condition for the time being.
I have had IPF for five and my FVC is almost normal, but my Dlco is 45%
My last CT showed no fibrosis progression and slight MAC 4.3 cm cavitary change.
I feel perfectly normal except for limited Spo2 response. I have almost no phlegm discharge and no cough.
Thanks for the research citations. I also found the same material. No one seems to add to the information. What about all the cavitary MAC patients who cannot tolerate meds. What can they expect?
I was diagnosed with MAC a year ago. It took months to get a robotic bronchoscopy to confirm Mac, and not cancer.
I am 82 so my time-line may be different from a younger person.
I am researching possible bacteria phage therapy. So far it looks to be impossible to get phage treatment unless you fail all other treatments, even if the side effects are life altering. Meanwhile, I cannot find a single report of any ill effects caused by phage therapy. Usual idiocy.
If I were in your lungs - I would be contacting the bacteria phage study for possible inclusion. Your accompanying conditions could add a great deal to their knowledge of phage treatment for those not good candidates for the antibiotic regimen and make them more likely to include you.
Sue