A little known lung infection called NTM is becoming more common in Australia

You may have been ill with respiratory and other symptoms for months, or even years. Maybe, you are now frustrated in not learning why you are not able to get as much done these days.

You may have followed the well-meaning advice of many doctors. Had many tests, courses of many antibiotics and hospital visits, but your health continues to slowly deteriorate. You and your doctors are baffled.

That is the history of many “Non-Tuberculous Mycobacterium” (NTM) patients. This infection can be a serious chronic lung disease, making patients very ill and damaging their lungs. Doctor Waring, an NTM specialist, explains that the bacteria causing NTM lung infection is usually slow growing. It can be unrecognized by patients and inexperienced doctors, and therefore “fly under the radar” so to speak. NTM is difficult to diagnose and prove even for experienced doctors.

NTM especially affects women over 50 years of age and those of European and Asian descent. For unknown reasons NTM patients are often slender, active women. As you grow older the chance of infection increases. It is more common in warm climates.

The symptoms of NTM are similar to many other lung diseases but can be very different in their presentation. A simple list of symptoms, particularly in the early phases of the disease, can be very misleading.

Following is a list of typical symptoms in no particular order. Some patients have only a few symptoms, while others have all the symptoms. The effects can be minimal, intermittent, or chronic, and may never go away.

If your experience is similar to our notes below, it is time to ask for help from a Respiratory Physician and or Hospital listed in this web site.

 Fatigue

For many patients, the first signs may range from just feeling lethargic, which may come over you and go away, to becoming really tired and utterly exhausted. It may even be suggested you are suffering from depression or some other malady.

Short of Breath

In the beginning breathing problems often occur intermittently. One day when you do something you may suddenly struggle to breathe. Your GP may want to investigate possible problems with your heart. But the next day, when you do the same thing, your breathing is quite normal. If you are treated with antibiotics for an illness, you discover they do not help your breathing problems. It is easy to ignore many of these events but over time, maybe months or years, they begin to happen more often until they become part of your life.

Cough

You may develop a cough that occurs occasionally for no good reason, or the cough may just not go away. You may find you begin to cough up some coloured mucus, which can suggest many different kinds of lung problems. The GP may treat you for common conditions with simple explanations, but this treatment does not help.

 Other Symptoms of the NTM Lung Infection that can occur include

Night sweats, Low-grade Fever, Chest Pain, and Weight Loss.

It can take up to four to six weeks after a sputum specimen is submitted to discover if the NTM bacteria is in your lungs, and there are only a few pathology laboratories with the expertise and equipment to identify this pathogen. It is not surprising that some inexperienced doctors then struggle to help you.

Never the less, NTM can be treated successfully over an 18 to 24 month period. With good care by an experienced Physician, many patients do fully recover and lead a full and productive life. For other patients the available treatment does not work and NTM becomes part of their life.

The bacterium that causes NTM is part of the family of bacteria that includes TB. But, unlike TB, this nontuberculous mycobacterium is not contagious. The bacteria exist in soil and water, but must be inhaled from these sources in order to infect a person. For example, inhaling the bacteria can occur when breathing in dusty air like opening a bag of dry mulch, or in a farming or mining operation, etc. As the bacteria exists in most water supplies it can be inhaled whilst showering, and so on. In other words the bacteria is everywhere, and most people will come in contact with it. The reason why some people are affected by the NTM bacteria and others are not is unknown.

The NTM bacteria was identified as being separate from the TB bacteria in the 1880’s, when it was discovered mimicking a condition in chickens. But it was not until the early 1950’s, when the bacterium was being discovered in more humans, that it began to be recognized more widely. Over time, NTM has been called different names, some of which are still used today. Here are some common terms that all refer to the family of NTM bacteria. Some have a specific medical meaning and some are just historical. They can be quite confusing:

Mycobacteria other than TB (MOTT); Mycobacterium intracellulare or Mycobacterium avian-intracellulare (MAI); Atypical Mycobacteria; NonTuberculosis Mycobacteria (NTM); or, Mycobacterium Avium Complex (MAC), and so on

If you think you may be at risk of an NTM Lung Infection, or another uncommon lung disease, you will find more information under the “Info” heading of this web site.

To investigate if you are indeed suffering from an NTM Lung Infection, ask your GP for a referral to one of the Australian Respiratory Physicians and/or Hospitals also listed in this web site. They are all experienced in diagnosing and treating NTM patients.

Trust your instincts and be persistent.

Lung Foundation Australia has worked with us, and supports all aspects of lung disease.

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