(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@nannette ...Wow! That is very interesting. I like that it is also naturally produced in the body. It will be good to follow this new treatment. Thanks for the heads up. Kate

Thanks Nannette @nannette -- this looks helpful for our bronchiectasis and lung damage, at least symptomatically. And it looks like it could possibly stabilise that damage so it doesn't get worse quickly. A lot of people need here that help. (I wish Hyaluronan also treated the NTM bacteria and other bacteria many of us have. Unfortunately it only treats the lung damage caused or exacerbated by these bacteria, but not really the bacteria themselves).

Good luck @goatlady. I'm dry too, so I have to have bronchoscopies with bronchial lavages every 6 to 12 months to see if I'm still seropositive. What happened with the Arakayce? What kind of bad reaction did you have?
Annie

Thanks Bill @poodledoc. Yes me too, not happy about the radiation from all the scans, but it is a necessary evil.

Hey Irene @irene5 -- I'm a fellow "drybie" too. Have been since a month after first treatment for NTM. (Had lots of phlegm -- yuck, LOL -- before treatment started). Even 10 days of sputum induction couldn't do it now. I have scans every 6 to 12 months and bronchoscopies every 6 to 12 months instead.
It sounds like things have been different since the Arikayce started! I will start it in 2 weeks I think.
All the best, Annie

Hi people, how long do you all have to wait for results from your sputum tests or bronchoscopies to see if you still have NTM in your lungs ?
I've often waited 8 or 9 weeks to get the results. It drives me crazy waiting so long !
(And it sucks too -- instead of doing the 100 year old dish-culturing tests they do in Australia, they could do Real-time PCR tests with a much shorter waiting time for results. They are not very kind to us !)

@anniepie Yes, that's about right. I think my last sputum test was 7-8 weeks. That's how long it takes to grow if it's there. Someone else who is scientific can chime in and explain it better. Nan

My ears started ringing so loudly that I couldn't even hear myself think and I had terrible diarrhea that lasted for almost a month. The ringing ears started on the second of use. It was terrible, so my ID doctor took me off of it almost immediately. I have heard that some people have fantastic results with it. I was so hoping that I would be one of them. Not meant to be!

The sputum culture is the "gold standard" test for NTM - mycobacteria are an extremely slow growing bacteria. Once positive, the susceptibility to specific antibiotics must also be tested.
I too have wondered about PCR testing for mycobacteria, so I went wandering down the dark hole of research....again.
What I found is that is is being tried, but so far there hasn't been a comprehensive large scale study. The best research I have found so far is here: https://jcm.asm.org/content/53/3/930

If you can wade through it, the conclusions seem to be:
PCR testing has promise for diagnosing TB & NTM, but currently the application is limited because specific DNA sequences need to be tested for. So if a strain is known (eg M tuberculosis) the tests are pretty accurate, if not (eg M. avium, strain unknown), not so helpful.
More testing is needed to determine whether PCR testing is effective in identifying low levels of bacteria in the specimen. And side-by-side comparison of PCR and sputum assays of the same sample need to be compared.
Something to watch for in the future!
Sue

@anniepie we also have the long duration tests, it usually is 6 to 8 weeks depending on how many you have maby.