Understanding Nontuberculous Mycobacteria (NTM) Lung Disease

This article is for people who are living with NTM lung disease and their care partners, or anyone who wants to learn more about it. The goal of this activity is help people living with NTM lung disease talk to and work with their doctors about their condition.

You will learn about:

• What NTM lung disease is and who can get it

• NTM lung disease symptoms

• How to know if you have NTM lung disease

• Treating NTM lung disease

• Questions to ask your doctor

Nontuberculous mycobacteria lung disease is a lung infection caused by a type of bacteria called nontuberculous mycobacteria (NTM).

The 2 types of NTM lung disease are:

• Nodular bronchiectasis where infection causes inflammation (swelling) of your airways that can damage and scar them over time

• Cavitary disease, which is often the more progressive or severe type where infection causes scarring, tissue thickening, and pits (cavities) in your lungs

NTM infections can also sometimes happen in your skin, bones, lymph nodes, or other parts of your body.

NTM are a group of bacteria naturally found in soil, water, and on animals. Most people will touch and inhale these bacteria harmlessly during their daily activities because their immune system -- the body's natural defense system -- clears them before infection. But for some people, NTM may cause an infection that can be severe.

Anyone can get NTM lung disease, but you may be at a higher risk if you:

• Have another lung condition, such as chronic obstructive pulmonary disease (COPD)

• Had tuberculosis (TB)

• Have a weakened immune system

• Smoke or used to smoke

• Are older than 65

NTM lung disease is not known to be contagious, so you can't get it from other people or spread it to someone else.

NTM lung disease symptoms can be different for different people and can range from mild to severe. Some people, especially those who have mild disease, may not have any symptoms at all.

Symptoms, when they do happen, can include:

• Coughing, often with mucus and sometimes blood

• Shortness of breath or wheezing

• Chest pain

• Repeat lung infections

• Fatigue (tiredness)

• Loss of appetite or weight

• Fever

• Night sweats

If you have any symptoms of NTM lung disease, talk to your doctor, especially if you have another lung condition or a weakened immune system.

Diagnosing (finding) NTM lung disease involves ruling out other possible causes for your symptoms and confirming that you are infected with NTM and not another organism.

Exams and tests your doctor may recommend may include:

• Physical exam and breathing test

• Chest X-ray or computed tomography (CT) scan

• Sputum (saliva and mucus you cough or spit up) sample that may be repeated on multiple days

There are different types of NTM, so identifying which bacteria are causing your infection will be important to help determine which treatment may be recommended. The most common NTM causing lung disease in the United States is called Mycobacterium avium complex (MAC).

Treatment can be different for different people. Some NTM infections may progress very slowly, so you may not need treatment, or not need it right away. But others, especially those with severe disease, will need treatment. Treatment for many NTM infections is a combination of 2 or more antibiotics taken over several months, or even years.

For some people, your doctor may also recommend surgery to remove infected or damaged parts of your lungs.

Antibiotics fight infections caused by bacteria by either killing them or making it hard for them to grow. Which antibiotics your doctor recommends will be based on:

• Which NTM are causing your infection and how they'll be affected by antibiotics

• Your symptoms and how severe your disease is

• Your age and overall health

• Other conditions you have and medicines you take

You may have to try different antibiotics, especially if the NTM causing your infection becomes resistant to the antibiotics you're taking. But it's important to take all medicines as directed and for as long as recommended. Don't stop, change, or skip doses without talking to your doctor first. It's also important to keep all your appointments for check-ups and tests.

As part of your treatment plan, your doctor may also recommend ways to help get rid of mucus and keep your airways clear.

Keeping a healthy lifestyle can also help manage NTM lung disease and its symptoms by:

• Preventing infections with good hygiene and by getting all recommended vaccines

• Avoiding smoke and other substances that can irritate your lungs

• Getting exercise to stay active and strengthen your breathing

• Eating a well-balanced diet and maintaining a healthy weight

• Keeping all appointments for check-ups and tests and taking all medicines as directed

• Finding ways to cope with stress

• Joining a support group or talking to a counselor

Questions you can ask your doctor about NTM lung disease can include:

• Do I need treatment? Why or why not?

• What treatments are available, and what are their side effects?

• How long will I need to take treatment and how we will know if it's working?

• What kind of tests and follow-up appointments will I need?

• Are there any lifestyle changes I should make?

• What should I do if I start to feel stressed or depressed?

• Are there any support groups I can join?

Congratulations!

You have successfully completed the program Understanding Nontuberculous Mycobacteria (NTM) Lung Disease.

View Additional Materials on this topic that you may find useful:

Nontuberculous Mycobacteria (NTM) Infections

NTM Lung Disease

NTM Lung Disease: Diagnosis and Treatment

Living With NTM Lung Disease