← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
Discussion(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Replies to "To the best of my recollection, when I was at Mayo's 2 years ago I gave..."
The way it was explained to me by several doctors is that one should not wait to be treated regardless of the degree of symptoms because MAC/MAI will continue to do damage, so the sooner the better in terms of treatment. My doctor at Vanderbilt says that in time more and more physicians will say treatment is necessary for all who have been diagnosed.
I too had sputum inductions and no results. My ID MD did test on IGG, IGM and IGE antibodies. My IGG and Subclass I was slightly low. But so far no treatment
for either. I am starting on Zantac for Reflux
JO Ann K
Irene, I believe that to be very true. I have a feeling I had MAC awhile before it was properly diagnosed. I feel like that is why my lung function is down to 44% now. I think much of the lung tissue got severely scarred and damaged before it was caught. It is very confusing because many doctors, including my beloved one at Mayo, do not believe in treating MAC right off the bat. (unless it is severe) I would like to go to the next NTM Conference next year and see if there is any new info out there.
Sounds like a plan!
Perhaps I'm an outlier, but I'm guessing not...my MAC moves around, heals in one area, then moves to another, which my Pulmo who specializes in NTM's determined to be not needing treatment...in essence I'm idling in neutral. I believe amount and type of treatment must be on a case-by-case basis as all folks are different, with varying systems and responses. Given that I also have RA which comes with a compromised immune system, I feel fortunate to have found a doc who really knows his stuff!
Hi @boomerexpert I have heard of that before, so wierd that they move around! Have you had negitive sputums for MAC?
Maybe they are like hermit crabs - always moving into a new and bigger house as they grow!!
@boomerexpert Are you sure it is the same MAC infection that is moving around and not re-infections that occur in different spots at different times?
Hello Gina. Have you tested since Dec 2016? If not, you may want to think about it. It is a good idea to stay on top of that; just to be sure it is not colonizing.
Thank you for explaining NTM -- I didn't know that either. I have no trouble coughing up when I'm having a flare -- which seems to be about once a month. So, I'm able to get a lot for the sputum testing.