Get Help When You Need It
It can be hard to diagnose NTM lung disease in CF because other CF-related infections cause similar symptoms on a daily basis.
If you already have some of these symptoms, the most important thing to think about is if these symptoms are changing or increasing in severity — especially if you and your CF team feel that your lung disease is becoming worse, even though you are taking good care of yourself and are doing all available treatments for typical CF infections.
Clues that NTM may be in the lungs include worsening pulmonary function tests (PFTs); not getting well or back to your regular health after IV antibiotics or after a hospital stay; or needing oxygen when you didn’t before.
Another hint might be new “constitutional” symptoms, or a general level of feeling that is not your normal. People with NTM lung disease may show all, some or none of the symptoms below — making NTM even more difficult to diagnose!
Your doctor is likely screening for many of these symptoms at your regular checkups. But if you are noticing any of these symptoms or other changes in your body, you should ask your doctor or another member of your CF team if it might be NTM.
Once someone has been diagnosed with NTM, the symptoms will be watched to find out if the disease is getting better, worse or staying the same.