Your First NTM Steps

This topic is written for those who have just been diagnosed. Never the less if this is the first time you have looked at this web site, we suggest you reflect upon the information in this topic.

If you have not read the Golden Rules above, please do so before continuing.

As you may have already discovered NTM is a CHRONIC infection of the lungs. It is difficult to treat. Treatment usually takes 18 to 24 months.

Mycobacteria are a family of bacteria that includes some 150 different species. This family includes Mycobacterium tuberculosis (TB) and Mycobacterium leprae (leprosy). These are rare contagious infections.

However, the most common species that infect our lungs in Australia are the Nontuberculous Mycobacteria (NTM), which are not considered contagious, and are found in the environment. The most common of these are the members of the Mycobacterium avium complex (commonly called MAC), which includes M. avium and M. avium-intracellulare (MAI). Mycobacterium kansasii, and Mycobacterium abscessus are the next most common infections in Australia. However as laboratory techniques improve new species are being discovered regularly so don’t be alarmed if you have one that is not listed here.

Mycobacterium avium complex and Mycobacterium kansasii are slow growing in the laboratory, whilst Mycobacterium abscessus is considered to be fast growing.

The NTM bacteria are ubiquitous in the environment, e.g., in dust, soil, and water. The bacteria cannot be transferred between people.

It is important to recognize from the beginning the role of your Respiratory Physician. Their role is to advise you about the medical matters of treating NTM, including:

  • When to start treatment
  • What drugs are best for you
  • Monitoring your progress and making appropriate changes as needed.

Your Respiratory Physician is likely to be extremely busy and you cannot expect to cover every aspect of NTM in the short time you have their attention.

The rest is up to you. At the end of the day what you do to become well again is your responsibility.

Living with NTM is a lot more than taking antibiotics for 18 to 24 months. In the beginning it can be very lonely, and your attempts to explain to family and friends about your illness very often does not help. Often there is no one with a good knowledge of NTM who can spend the time to encourage you when you are uncertain what to do. It is natural to become anxious and scared about the future.

We urge you to take the opportunity to join our support group. Just send us an Email by clicking on the “Contact Us” heading.

Use the NTM forums. Click on the heading “Forums” to access them and have a look at each one.

Finally, study the information within this web site. You should find the majority of answers to the questions that may arise in managing your health. We have deliberately chosen not to include any medical specific information.

You must seek all medical advice from your Respiratory Physician and Medical Professionals advising you.

To help you get started we recommend you do the following now

  • As you may already know some antibiotics can affect your vision and hearing. You should have your current vision and hearing assessed NOW by professionals who are familiar with the drugs you are taking, and experienced in recovering your vision and hearing if needed. Make sure you ask them what to do , should your vision or hearing change.
  • Attend a Pulmonary Rehabilitation program. Read the “Exercise” topic to find a program near you and advice on exercising.
  • Try to find a Respiratory Physiotherapist. S/he will design an exercise program specifically for your own needs, and help you master clearing your airways. Respiratory Physiotherapists can be invaluable
  • Practice some form of relaxation, such as Meditation, Yoga, and/or Tai Chi. Being relaxed is a vital part of regaining your health.
  • If you have any heart problems, discuss your lung infection and the antibiotics you are taking with your Cardiologist. Your lungs and heart are in fact one system. Try to make sure your Cardiologist and Respiratory Physician communicate with one another.
  • Get vaccinated against pneumonia.
  • Start taking Probiotics to reduce the risk of thrush and help with possible stomach problems. (see Info/Probiotics)
  • Get your prescribed blood tests done a week or so before each visit to your Respiratory Physician and ask for copies of the results.
  • Although you may not be losing weight at this time, obtain a referral from your GP for an appointment with a dietitian at a hospital where chronic lung problems are being treated. You may see the dietitian now and obtain advice about what to do should you lose weight, or hold the appointment place open until you need to see your dietitian.
  • If you currently do not eat a healthy diet, start to do so now. You have a fight on your hands with the NTM bacteria and your body needs all the help you can give it.
  • Learn how to clear your airways of mucus and do so every day. This topic is discussed in detail under the heading “Airway Clearance”. In particular, read the topic: ”Active Breathing”.

Irrespective of which aid you choose to help you clear your airways, they are all based upon the “Active Breathing Technique”. Read the “Active Breathing”,“Huffing” and “Productive Coughing” sub topics  under the “Airway Clearance” in the “How to clear Airways” topic  The “Active Breathing Technique” does require a lot of practice to perfect.

Do your utmost to find a Respiratory Physiotherapist to devise a personalized program for you. Good Respiratory Physiotherapist are worth their weight in gold. Alternatively, or maybe in addition, join a Pulmonary Rehabilitation Program. see “Exercises” under the “Info” heading to find a  Pulmonary Rehabilitation Program near you

There are many different aids to assist you in clearing your airways. The recommended aids are the Aerobika and Pari Nebulizer. These aids are fully explained under the topic “Airway Clearance Aids”.

Have a positive attitude towards your treatment and a strong belief that by working in partnership with your Respiratory Physician, using the information within this web site and becoming an active user of at least one NTM forum you will regain your health.