How many have had the Big 3 cure, then relapsed?
Hi everyone,
I would like to know how many people took the big three THERAPY, then their tests showed that Mac was gone, and then it returned.
I would appreciate any input on this. Thanks Bon
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I believe the statistics are something like 50% reinfection within 2 years. I think once we've got/had it, we will always be vulnerable and must be vigilant in reducing our exposure. There are dome brilliant webinars on preventing reinfection on YouTube
Sue,
Thanks for your input. I’m not planning on taking the Big 3. I know my limitations in regard to side effects. I would be in hell for two years. I appreciate what you shared. I like learning whatever I can about this monster disease. I haven’t adjusted to it completely yet….but life throws stuff at us and I guess we just have to do the best we can.
I relapsed within 2 years. I currently am not taking the Big 3. When I went to NJ they said that my CT scan had improved from the last one so they were taking a wait and see approach. I think I might need to go back on them. I just haven't been feeling the best and I'm worn down from coughing.
Hi Tina. Thks for responding. Yes maybe best to get a check up. Do u get short of breath ? Do u nebulize? Bon
Yes, I nebulize with 7% saline twice a day and use the vest. It really helps but I seem to be coughing up yellow gunk all day long.
Oh, Tina, I'm sorry to hear that - what are you doing to try to get healthy? Every year around this time I get a little anxious and hyper-alert to every cough and wheeze as I await a followup CT and whether I need a culture. I am 43 months out from stopping the antibiotics while still positive, but my lungs have been stable🤞🤞Sue
maybe get a sputum sample done just to be safe?
I have a sputum sample in the lab right now. I have an appointment with my local pulmonologist in 2 weeks. I am also being referred to a CF clinic.
I try to stay active. I still golf and go to exercise class. I did golf in a big outing yesterday and today I'm resting. I used to be able to go, go, go!
Hi Tina
Very sorry that you are having more coughing. Are you monitored by a local doctor or NJH during this period? How often do you have sputum cultures . I hope to finish treatment soon for MAC and wondered what the protocol for follow up may be. Thank you if you want to share.
Susan