Talk to Your Doctor

If you think you may have nontuberculous mycobacterial (NTM) lung disease, there is something you can do. Talk to your doctor or a specialist about your symptoms and any lung conditions you have. Ask if getting tested for NTM lung disease may be right for you. The below Doctor Discussion Guide can help you ask the right questions.

It’s important to get tested for NTM lung disease because NTM can be progressive. This means that it gets worse over time, causing more damage to your lungs. Your symptoms can get worse too.

Getting tested for NTM

Getting tested is the first step to being properly diagnosed. The sooner you receive a diagnosis, the sooner you can begin to evaluate your treatment options with your doctor.

But starting the dialogue isn’t always easy. Visits may be short and it can be difficult to remember everything you want to say at an appointment.

About NTM Discussion Guide

To prepare, use the Doctor Discussion Guide below to record the symptoms you’ve been experiencing, your history of lung disease, medical history, and a list of the questions you have. Then, bring the discussion guide with you when you talk to your doctor.

About NTM Discussion Guide

Ask about NTM lung disease—Think you may have NTM lung disease? Download this discussion guide to help start a conversation about NTM with your doctor.

Download Doctor
Discussion Guide

Who to Speak To

Diagnosing NTM lung disease can be difficult because the symptoms of NTM are common and can be mistaken for other lung conditions.

If you think you have NTM lung disease, ask your doctor if you should be referred to a Pulmonologist or an Infectious Disease (ID) Specialist. Pulmonologists and ID Specialists are doctors who have special training with lung diseases and infections and are more likely to be familiar with testing for and treating NTM lung disease.

You may want to consider finding a specialist who has experience caring for people with NTM lung disease. The disease can be difficult to manage, and some doctors may have limited NTM experience.

Pulmonologists and Infectious disease specialists
Pulmonologists and Infectious disease specialists

Pulmonologists

Doctors who focus on the health of the lungs.

Pulmonologists and Infectious disease specialists

Infectious Disease Specialists

Doctors with special training in all kinds of infections, including those caused by bacteria, viruses, fungi, and parasites.

Diagnosing NTM lung disease can get you on the road to feeling better. Talking to a Pulmonologist or an ID Specialist about your symptoms is the first step.

Find a Specialist

If you think you could have NTM lung disease, or if you’ve already been diagnosed, you may wish to see a doctor in your area who specializes in lung diseases. You can start your search for a local specialist with the tools below:

Why it’s Important to Get Tested

You should get tested for NTM lung disease because NTM can be progressive. This means that it could get worse over time, causing more damage to your lungs. Your symptoms can get worse too.

2 out of 3 people with NTM have lung disease

Since the symptoms of NTM lung disease are similar to other lung conditions, diagnosis can be delayed. Many people who have it may not know it for months or sometimes years. In fact, 2 out of 3 people with an NTM infection have moderate to severe NTM lung disease by the time they’re diagnosed. That’s why, if you’re having symptoms, it’s important to talk to a specialist if your symptoms are not going away, or are getting worse.

Does it sound like you could have NTM lung disease? People like you have shared their stories in hopes of spreading more awareness about this disease.

Watch real people and their stories about NTM lung disease

How to Test
for NTM lung disease

To help determine if you have NTM lung disease,
your doctor may:

Physical exam

Perform a physical exam

Medical history

Review your medical history—Your doctor will look at your health history and any lung conditions you currently have and the symptoms you are currently experiencing

Mucus sputum culture

Collect a sputum culture—Your doctor will ask you to cough up mucus. Once they get your mucus, they will analyze it and look for bacteria. They may repeat this process for a correct diagnosis

Chest CT scan image

Do a chest CT scan—Your doctor will use a specialized machine to take a picture of your body that shows any damage in your lungs

If you test positive for NTM lung disease, your doctor will decide what your next step is, including potential treatment options. You will need to continue seeing your doctor regularly so he or she can monitor your lungs.

About NTM discussion guide

Ask about NTM lung disease—Think you may have NTM lung disease? Download this discussion guide to help start a conversation about NTM with your doctor.

Download Doctor
Discussion Guide