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

Nontuberculous mycobacterial (NTM) lung disease is caused by common bacteria found in soil, freshwater, and natural water sources.¹ You may not have heard of it because NTM lung disease is described as a rare disease. People who have NTM lung disease may have a cough (often bringing up mucus), fever, weight loss, tiredness, and sometimes bloody sputum (mucus).² Often, NTM lung disease is found in people with weakened immune systems or who already have a lung disease like COPD, bronchiectasis, or a history of treated tuberculosis.²

If a doctor suspects NTM lung disease, they will first perform some tests to find out the type and how serious your infection could be. These include sputum testing, and a special x-ray called a CT scan. NTM lung disease is often slow to worsen. If NTM lung disease is diagnosed, the health care team will be careful to come up with a plan of care that will keep in mind the NTM’s ability to cause lung damage, risks and benefits of therapy, the person’s willingness to begin medicines for treatment, and the overall goals for therapy. Sometimes, “watchful waiting” may be chosen as the course of action.³ If symptoms or the NTM lung disease gets worse and starts to damage the lung, the care plan may be changed. Regardless of when treatment begins, health care teams will advise that those with NTM lung disease start a routine to help clear their mucus. This is called “airway clearance” and is an important part of treating NTM lung disease.⁴

Along with medicines, the care plan for NTM lung disease should include a wellness program. This can involve starting an exercise program, eating healthy, and avoiding losing weight.⁴ If the person with NTM lung disease has another lung condition (e.g., COPD, bronchiectasis, rheumatoid arthritis), they should take care of those conditions as well.¹ Additionally, around a quarter (26%) of those with NTM lung disease also have acid reflux.⁵ Health care providers will often test for reflux disease and provide “lifestyle change” ideas to help reduce reflux and aspiration, a condition when food or fluids that should go into the stomach go into the lungs instead.⁵

To prevent flare-ups, people who have NTM lung disease should be careful not to come in contact with the bacteria again. One way to avoid it is to drink only bottled water. Another way is to bathe with cooler water and avoid hot, steamy showers or spas where the bacteria could be breathed in. If financially able, people who have NTM lung disease may want to consider having their plumbing checked and remove the bacteria if found.¹ Also, because NTM can be found in the soil, a mask should be worn while gardening to lower the risk of breathing in soil and dirt.

Sometimes people with NTM lung disease can have an exacerbation (flare-up) of their symptoms. During an exacerbation, the person may have one or more of the following: coughing up more mucus, change in color of their sputum, fever, tiredness, and/or shortness of breath.⁶ When this happens, those with NTM lung disease should speak to their health care team right away for advice. They should also speak to their doctor before using any over-the-counter medicines. Use patient portals, e-charts, and email to follow up after any treatment plan.

Health care teams should work closely with those who have NTM lung disease and their caregivers to set up a thorough plan to manage the condition. Good communication between a health care provider and those with NTM lung disease is extremely important. Those with NTM lung disease should be sure to attend all scheduled doctor’s appointments. Taking notes before and during your doctor’s appointment can help with remembering the details of the visit or any concerns. Consider bringing a loved one or caregiver to your appointment for support and to help take notes. During the appointment, find out how best to contact the physician or health care team if more concerns or questions come up. Feedback and communication between a patient and their health care team are important on the journey with NTM lung disease.

People living with NTM lung disease should do their best to create a wellness plan that will allow them to maintain their strength, fitness, and body weight. In a few days, Bronchiectasis and NTM 360 of the COPD Foundation will host an educational event on Facebook. During this event, participants will meet Kathy, a person with NTM lung disease, and learn how someone might notice symptoms, get tested, and be diagnosed by an expert in the field. We believe that by watching a first-hand account of someone living with NTM lung disease, viewers may be able to learn more about the condition and how it is managed.

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

References:

1. Faverio P, De Giacomi F, Bodini BD, et al. Nontuberculous mycobacterial pulmonary disease: an integrated approach beyond antibiotics. ERJ Open Res. 2021;7(2):00574-2020. Published 2021 May 24. doi:10.1183/23120541.00574-2020
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. 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
4. 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
5. Koh WJ, Lee JH, Kwon YS, et al. Prevalence of gastroesophageal reflux disease in patients with nontuberculous mycobacterial lung disease. Chest. 2007;131(6):1825-1830. doi:10.1378/chest.06-2280
6. Griffith DE, Aksamit T, Brown-Elliott BA, et al. An official ATS/IDSA statement: diagnosis, treatment, and prevention of nontuberculous mycobacterial diseases [published correction appears in Am J Respir Crit Care Med. 2007 Apr 1;175(7):744-5. Dosage error in article text]. Am J Respir Crit Care Med. 2007;175(4):367-416. doi:10.1164/rccm.200604-571ST