Is there any successful story?

I was 74 when first was diagnosted and they thought I had had it for 7 years prior. I was put on the big 3 and then had to stop one because of eye problems. Then they substituted it with Ayricase which after a year I couldn't stop coughing so off that. I had continuous sputum tests and xrays but finally at age 77 I beat it! I know at any time it can reappear but I live one day at a time and greatful for each one. I am now 79 and no reacurance. Just stick in there and be hopeful. Everyone is different but you have a great support staff on this site so use their experiences and help. Good Luck and stay positive!

@lauraadam2425
what do you think finally worked?

@irenea8
I didn't do anything different than what I mentioned. I really don't know why it works for some and not others. I had lung problems and had pneumonia throughout my life, mainly walking pneumonia, but I do know it can come back at any time just keeping my fingers crossed and pray. Good Luck to you and stay positive!

Hi Helen,
I figured I would give you My update. I am off the imepenem due to my liver enzymes getting to high and placed on Clofazimine. My latest blood work was still too high so my azithromycin was lowered from 500 mg to 250 mg today. I see my Dr. on Thursday so we will see if she is any further along with my insurance appeal for Nuzyra which is easier on the liver but crazy expensive. $ 18,000 a month. The good news is that my lungs sound clear and I feel great plus I don’t have to give myself an infusion every 8 hours. Hope you are well.

Lou

@rstel7272 …I have a 3 cm Cavitary NTM mass ..Going on 4 antibiotics daily plus one I.V twice a week .In 3 weeks I am have surgery to do a lung wedge resection to remove it because I know that there is no cure and I can’t be on all these antibiotics for 2 years ,and then no cure !
Quality of life is important !! Do you want to enjoy the time you have left?
By the way, I don’t know your situation, but Israel has a trial study using nitrous oxide that seems to be working to kill NTM . No pharmaceutical company wants to invest in finding new treatments because there are only about 86,000 people in the United States who have this disease!….no money for them !!

Does anyone here have a Cavitary mass ??,has anyone had surgery??

@visions63 Hello, there is no cure for Bronchiectasis, but NTM itself is curable. It can take a long time, and it may reoccur, either the same strain or a different one, but I feel like 6 years infection-free counts as a cure.

As for the cavitary mass, has a course of antibiotics, 6 months or longer, been tried to see if the mass will reduce without surgery?

Finally, there is a lot of ongoing research into managing bronchiectasis and NTM infections. You can read about some of it here:
https://bronchiectasisinfo.org/

@visions63 It may take 18 months to reduce the size of a cavity. Mine is 2cm and it suddenly closed after 17 months of antibiotics. Would you wait a bit longer to see whether your cavity can be closed too?

@helen1000 ….thanks so much for your reply .I weigh 86 lbs and am 79 years old .i have to be on 5 antibiotics,one is I.V .In the past I’ve had CDiff 2 times ,so I need to take Vancomycin with the other 4 to prevent CDiff again .
I know that I would not be able to survive with this regiment for two years of treatment…..I also have a heart condition and many GI problems that I’ve been hospitalized with .This surgeon in NYU said that it would be any easy robotic wedge procedure.This is my only hope ….btw …what does “ closed “ mean ??,you still have infection,right ???

@helen1000 …you are very positive and brave !!