Other lung diseases

Nontuberculous mycobacteria (NTM) are a group of bacteria that can sometimes cause infection. NTM infections most commonly affect the lungs but can also affect other parts of the body. 

NTM infections are becoming more common in Australia and around the world. Researchers are studying the reason for this increase.  

NTM are naturally found in the environment, including soil, dust, and water. You can come into contact with these bacteria through everyday activities, such as showering or gardening. NTM can enter the lungs when you breathe in tiny droplets of water or dust containing the bacteria.  

Most people who come into contact with NTM do not become unwell. Some people have NTM bacteria in their lungs without any signs of lung disease. In others, the bacteria can continue to grow and damage the lungs. This is known as NTM lung disease (also called NTM pulmonary disease). 

Some people have a higher chance of developing NTM lung disease, including: 

• People who are living with a lung disease, such as chronic obstructive pulmonary disease (COPD) or bronchiectasis. 
• People with weakened immune systems, as they may have more difficulty fighting infections.  
• Older adults and people who are underweight.

Symptoms

Symptoms can be different from person to person, and may include:

• A cough that won’t go away
• Feeling generally unwell
• Feeling more tired than usual
• Losing weight without trying
• Coughing up blood
• Night sweats
• Shortness of breath
• Frequent chest infections

Getting a diagnosis

NTM lung disease can be difficult to diagnose because the symptoms are often similar to other lung diseases, such as asthma, COPD or bronchiectasis. Some people may be incorrectly diagnosed with or treated for another condition before an NTM lung infection is found. NTM can occur alongside other lung diseases. Because the symptoms can be similar, it may take longer to recognise and diagnose. 

Your general practitioner (GP) should refer you to a specialist doctor who has experience diagnosing and treating NTM lung disease.  

Tests may include:  

•  Sputum tests: Samples of sputum (mucus or phlegm) coughed up from your lungs are tested for NTM bacteria. You may have to provide a few different samples over different days. As some types of NTM bacteria grow slowly, test results can take several weeks. Finding NTM bacteria in a sputum sample does not always mean you have NTM lung disease. Your doctor will look at all your test results and symptoms before making a diagnosis. 
• A CT scan of your chest: Provides detailed images of your lungs to look for changes that may show signs of NTM lung disease.
• Bronchoscopy: Your doctor may suggest a test that uses a thin, flexible tube with a small camera to look inside your airways and collect samples for testing.  

Treatment

Treatment for NTM lung disease is different for everyone. Your treatment plan will depend on the type of NTM bacteria causing your disease, your symptoms, any other health conditions you have, and how the infection is affecting your lungs.  

Not everyone with NTM lung disease needs treatment straight away. For some people, your doctor may recommend regular check-ups to see whether the infection is changing or getting worse. You may hear this called the “watchful waiting” approach.  

When treatment is needed, it usually involves a combination of medications over a long period, sometimes for to 18-24 months or longer. 

Even if you start feeling better or tests no longer find NTM bacteria in your sputum, you may need to keep taking your medications for many more months. This helps stop the infection from coming back.   

During treatment, your healthcare team will check your progress with regular appointments and tests. This helps make sure your treatment is working and check for any side effects. 

Other ways to manage NTM lung disease may include: 

• Airway clearance: Speak to a physiotherapist to learn ways to clear mucus from your lungs. 
• Pulmonary rehabilitation: A program of exercise and education to help you improve your breathing, fitness and quality of life.  
• Diet and nutrition: Eat well to help maintain a healthy weight and support your overall health.  
• Emotional wellbeing: Look after your mental and emotional health. 

Living with NTM lung disease can be challenging, especially when treatment is needed for a long time. Support services, like peer support groups, can help you manage your condition and connect with others who understand what you are going through.  

Remember, you don’t have to manage your condition alone. Your healthcare team and Lung Foundation Australia are here to provide information and support.   

Helpful links

• NTM Australia Support Group – Lung Foundation Australia 
• NTM AUSTRALIA & NZ Website 
• NTMir Insight Pamphlet – A Patients Perspective. Please note this document was developed in the USA.