Hi Diane, I was first diagnosed with NTM in August 2018 it was found to be abscesses With the subspecies abscesses.(This more specific dx )was found at the lab National Jewish health (NJH)in Denver 12/2018. I was diagnosed in Ireland but It (NTM) probably was brewing for several years before. I thought It was a terrible chest cold. An Irish Dr after changing atb (antibiotics) x3 thought it was tuberculosis because of a cavity in my right upper lobe of my lung on cxr(Chest X-ray)and the CDC from Atlanta called me and told me that I was not allowed back in the US until I was treated for it (TB) for at least 10 days. I was started on the big three rifampicin, ethambutol and arithromycin. I lost 15 pounds in 10 days from the Rifampin. Stopped the medication and came back to the USA. Back to USA I got a pulmonologist in Clearwater Florida where I live and he referred me to in NJH. The doctor at NJH is consulted by my pulmonologist although I also went to NJH 12/19 rehab and 12/20-I had surgery because of the cavity in my lung.
From the time I was diagnosed until three months after my surgery I had several IV ‘abts and oral abts. By March 2020 the abscessus was not seen in my sputum specimen’s —-😅however in April 2020 I showed Mac in my sputum. I am on clofazamine,ethambutol and arithromycin, and just started on Arikayce. Now also taking Ventolin per nebulizer Also Arikayce and of course continuing my (AC)with 7% Saline. I ordered my aerobija online from a medical Resp company my doctor sent a prescription for it but at that time it wasn’t covered
In Ireland I was coughing my head off and bringing up sputum every time—So sick and weak. I Learned about airway clearance (AC) with 7% normal saline (strong) & really makes you cough and that’s what you want is to get the stuff out of your lungs. If you have NTM you probably have bronchiectasis—-they go hand-in-hand. AC It’s a must everyday. It’s important to keep all of your medical records /doctor your lab reports , CT scans,everything.
I didn’t go into the medications because your sputum will show the resistance or the susceptibility to the medications that your doctor should put you on. This excellent Website is a series of Very good videos about NTM .
My abscesses hasn’t shown in the last two specimens I had done—So but so now its only Mac. But it’s enough! I’m sorry Diane I know this was a lot but I think that it’ll make sense if you watch that those videos. I’m sorry this is a lot of information I hope it makes sense please let me know if you have any other questions about the abscesses it can be nasty But you kind of get into a habit and routine and it seems to go by OK thank you and take care of yourself. So glad you belong to this connection everyone is so nice!! ——blue skies Judy
The videos are from 2016 but not a whole lot as far as I know has really changed.
http://Www.NationalJewish.org/ntmvideos2016