This post was authored by Christina Hunt, BS, RRT.

For many people, the diagnosis of a lung condition can be a very uncertain time. Feelings of worry, fear, and confusion can weigh greatly on those trying to decide their next steps for treatment, adjust to major lifestyle changes, and answer the all-important question of “Why me?” These challenges may seem more difficult for those diagnosed with a rare disease, such as Nontuberculous mycobacterial (NTM) lung disease. For those who have an NTM lung disease diagnosis, there is plenty to unpack in the beginning to understand the disease itself, why they may have been susceptible to this infection, and how they can make lifestyle changes to best manage their condition.

This diagnosis can be a complex one, so let’s start with the basics. There are 190 different types of NTM, but the most common is called Mycobacterium avium complex (MAC).^1,2 This type of bacteria is found in soil and different fresh and natural water sources. NTM lung infections are thought to develop when a susceptible person comes in contact with these bacteria and breathes them into the lungs doing normal daily activities. These daily activities may include showering, bathing, drinking, hand washing, dishwashing, gardening, or just sleeping.³ While the healthy lung can remove NTM and stop these usually harmless bacteria from taking hold and finding “a home” in the lungs, people who have damaged lungs, weakened immune systems, and other predisposing conditions are more likely to become infected and be diagnosed with NTM lung disease.² These lung conditions can include COPD, bronchiectasis, and prior tuberculosis.^2,3 Women who have gone through menopause and people over the age of 65 are also more likely to have NTM lung disease.^2,3 It’s important to note that NTM lung disease is not spread from person to person like its more well-known relative, tuberculosis.²

While NTM lung disease is considered a rare disease, rates have been increasing throughout the world. The increasing rate is likely due to more patients developing the infection, as well as due to improved testing methods and increased awareness of the condition.² Patient symptoms can often be subtle, leading to delays in diagnosis, and may include long-lasting cough with or without mucus, also known as sputum, shortness of breath, weakness, fatigue, weight loss, and at times coughing up blood.² To diagnose NTM lung disease, a detailed patient history and clinical workup are needed, a special x-ray of the chest – called a CT scan – is conducted, and a sputum sample is sent for a special staining test and culture method used to grow and identify the bacteria.¹ Following a diagnosis, a patient should work with their doctor to find the best treatment plan for them.

Feeling your best with NTM lung disease is important for all those diagnosed. After a plan of care is decided, patients should maintain healthy eating habits and prevent weight loss.^4,5 Patients with NTM lung disease should consider meeting with a nutritionist or dietitian if their weight begins to drop. They should consider a pulmonary rehab program for education on exercises to increase strength and endurance, as well as using good airway clearance techniques to prevent extra mucus from remaining stuck in the lungs and causing further infections.⁵ People with NTM lung disease should try to avoid getting sick by wearing masks, washing their hands regularly, and staying current on all their vaccinations.

Knowing more about NTM lung disease is the first step in living a better life with the diagnosis. People with NTM lung disease should feel confident that with a great medical team and healthy living habits, they can manage this diagnosis.

This blog post was supported by an educational grant from Insmed Incorporated.

References:

1. Daley CL, Iaccarino JM, Lange C, et al. Treatment of nontuberculous mycobacterial pulmonary disease: an official ATS/ERS/ESCMID/IDSA clinical practice guideline. Eur Respir J. 2020;56(1):2000535. Published 2020 Jul 7. doi:10.1183/13993003.00535-2020
2. Johnson MM, Odell JA. Nontuberculous mycobacterial pulmonary infections. J Thorac Dis. 2014;6(3):210-220. doi:10.3978/j.issn.2072-1439.2013.12.24
3. Donohue MJ, Mistry JH, Donohue JM, O'Connell K, King D, Byran J, Covert T, Pfaller S. Increased Frequency of Nontuberculous Mycobacteria Detection at Potable Water Taps within the United States. Environ Sci Technol. 2015 May 19;49(10):6127-33. doi: 10.1021/acs.est.5b00496. PMID: 25902261.
4. American Lung Association. Learn about Nontuberculous Mycobacteria (NTM) | American Lung Association. https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria. Accessed January 24, 2022.
5. Lipman M, Cleverley J, Fardon T, et al. Current and future management of non-tuberculous mycobacterial pulmonary disease (NTM-PD) in the UK. BMJ Open Respir Res. 2020;7(1):e000591. doi:10.1136/bmjresp-2020-000591