Have you ever experienced a chronic cough, fatigue and shortness of breath that just won’t go away? It’s easy to brush off these symptoms but they could be signs of a much more serious issue — especially if you already live with a lung condition like bronchiectasis, COPD or asthma.
Debbie B, 78, used to lead an active lifestyle golfing, hiking and skiing before coughing consumed her life. For 15 years, she struggled with colds that seemed to last for months with uncontrollable coughing fits.
The turning point for Debbie came when she had to abruptly leave a family dinner due to fatigue and chills. This event pushed her to see a pulmonologist who ran several tests, including a bronchoscopy, which revealed that she had NTM (nontuberculous mycobacterial) lung disease.
While Debbie was shocked, having a diagnosis for her condition brought her some comfort. “I felt a great relief knowing that I could do something about NTM, the condition that I now could put a name to,” said Debbie. “And I was very optimistic.”
What is NTM?
Like Debbie, people are often surprised to find out they have NTM, and even more surprised when they learn it doesn’t go away on its own and could be causing long-term lung damage. Most people have not heard of NTM lung disease or its most common cause: Mycobacterium avium complex (MAC), which accounts for 80% of all NTM lung disease cases in the U.S.
This serious infection is caused by bacteria that exist in water, soil and the air we breathe. Everyone comes into contact with NTM bacteria during their daily lives. However, not everyone is at risk of getting NTM lung disease. Those with underlying lung conditions are at greater risk than the general population.
The real impact of NTM lung disease goes deeper than just coughing. Studies show that having a MAC infection can cause lung damage that can worsen over time. That’s why early diagnosis and management are important.
“Timely diagnosis and treatment are critical in this patient population because if left untreated, NTM can have a serious, long-term impact on a person’s health,” said Bryan Garcia, M.D., assistant professor, Pulmonary, Allergy, & Critical Care Medicine, University of Alabama. “Both the symptoms and the infection need to be managed appropriately. It’s particularly important for people who have a more severe infection, a compromised immune system, severe fatigue or cavitary disease to be treated immediately rather than waiting.”
Spot the symptoms
People can have NTM for months and sometimes years without knowing it. The symptoms of NTM lung disease are so similar to other lung conditions that some patients are misdiagnosed or not diagnosed at all. According to AboutNTM, an educational website and resource for patients with NTM lung disease, symptoms may include:
- Trouble breathing or shortness of breath
- Feeling tired often
- Weight loss and/or lack of appetite
- Low-grade fever
- Recurring infection
- Symptoms that do not get better despite medicine
How can you tell if it’s NTM and not something else? The truth is that it’s very difficult — and even if you don’t have symptoms, this type of infection can have a lasting impact on your health by causing permanent lung damage over time. If you think you or a loved one may have NTM lung disease, talk to your doctor about your symptoms and any lung conditions you have.
“When I was first diagnosed, there was not a lot of information about NTM. Today, the knowledge of the medical community has come a long way,” said Debbie. “There are doctors who are teaching other doctors about NTM. It’s important to talk to a doctor who understands the disease and seek out information.”
Get diagnosed and treated
Talk with your doctor so your disease can be managed as soon as possible. Dr. Garcia says that once patients are diagnosed, it is important to discuss a treatment plan for getting rid of the infection, and your doctor may recommend a multidrug regimen of at least three antibiotics.
Dr. Garcia also recommends staying in regular contact with your doctor and continuing testing to assess whether your treatment works. Regular sputum testing (a test for infection which requires mucus to be brought up from lungs) is recommended to determine if you are still positive for NTM. Up to one-third of patients will not be MAC negative after six months on a multidrug regimen. Talk to your doctor about testing after six months and if you’re still positive, discuss other possible treatment options.
While NTM can be scary and challenging, there is hope. “Be optimistic you’re going to overcome this disease,” said Debbie. “I think attitude is very important.”
Don’t dismiss NTM as just an inconvenience. The real impact of NTM and MAC, which accounts for 80% of all NTM lung disease, goes deeper than you think. For an interactive experience that allows you to see how the infection enters the lungs and spreads, the permanent damage MAC can cause and how to take action, visit https://aboutntm.com/inside-the-lung-damage/.
This article and AboutNTM are sponsored by Insmed Incorporated.