Non-Tuberculosis Mycobacteria (NTM) lung infections

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What is this information about?

This information is about non-tuberculosis mycobacteria (NTM) infections. It explains:

• what NTM is
• how you can catch NTM infections
• the symptoms of NTM infections
• how NTM infections are treated
• where you can find more help or information

Why have I been given this information?

You have been given this information because you, or a relative or someone you care for, has an NTM infection.

What is NTM?

Non-tuberculous mycobacteria are a type of bacteria. Bacteria are tiny organisms with a single cell. NTM are found all around us in things like water and soil. There are other types of mycobacteria that can cause tuberculosis (TB) but you cannot get TB from NTM.  

Why might I have got an NTM infection?

 You are more likely to be at risk of getting NTM if:

• your immune system which usually helps your body fight infections is weak
• you may be more at risk of an NTM infection if you have a lung condition such as chronic obstructive pulmonary disease (COPD), bronchiectasis, cystic fibrosis, or interstitial lung disease

Some people get an illness from NTM even if they do not already have a lung condition.

Are my friends or family at risk of catching an NTM infection from me?

NTM infections are not thought to spread from person to person in most cases but this can happen in specific situations. For example, there is a type of mycobacterium that can spread between people with cystic fibrosis.

Do help to avoid spreading NTM by following good hygiene advice. For example, make sure that if you cough up any sputum (mucus or phlegm), you catch it in a tissue. Then put the tissue in a covered bin. Cover your nose and mouth when you cough or sneeze. Maintain good hand hygiene by washing your hands and using antibacterial hand gel. Clean surrounding surfaces.

What are the symptoms of NTM infection?

The symptoms of NTM infections can be like those of other lung infections and may develop slowly. They include:

• having a cough
• coughing up thick mucus or phlegm (sputum)
• being very tired or feeling like you do not have much energy (being fatigued)
• having a high temperature, sometimes with shivers (having a fever)
• night sweats
• weight loss

How are NTM infections diagnosed?

NTM infections are usually diagnosed by:

• carefully assessing your symptoms
• using tests that show if there are NTM bacteria in the body (microbiological tests)
  • If you can easily produce sputum, three samples of it will be tested for NTM. If it is difficult for you to produce sputum, we may talk with you about other ways of getting samples such as a bronchoscopy. This involves inserting a flexible telescope through your nose or mouth into your lungs under light sedation (you will have a medication to make you relaxed and drowsy).
• looking for signs of changes in your body, especially your lungs, caused by infection. This is done using things such as CT scan or x-ray (radiological tests)  

How are NTM infections treated?

Some NTM infections do not need to be treated if:

• you are getting better or controlling the infection without treatment. For example, if your body can fight the infection with improved nutrition, chest physiotherapy and without help from medicines
• if the infection is not causing bad symptoms or much damage to your body

If you do need treatment, you will be given antibiotic medicines to try to:

• clear the NTM infection from your body
• reduce the chance of your lungs being damaged by the NTM infection
• make your symptoms better

Why do I have to take medicines to treat my NTM for so long?

NTM infections are more resistant to antibiotics than many lung infections and so it can take longer for the antibiotics to work.

Do follow your doctor’s instructions for taking your medicines. This will make it less likely that the NTM bacteria will become resistant to the antibiotics.

Do the treatments for NTM have side effects?

All antibiotics can give you side effects. Your NTM specialist has probably warned you about:

• the most common side effects for the antibiotics you are taking
• the side effects that you most need to look out for that may mean you need to ask for help and advice

Common side effects include:

• a change in the colour of your urine (pee), faeces (poo), saliva, sweat and tears. This is usually to a red-orange colour. This can be worrying but it is harmless.
• being sick or feeling sick
• watery faeces (diarrhoea)
• not feeling hungry or not wanting to eat

Rare side effects include:

• blurry vision or pain in the eyes. This can happen if you are taking a medicine called ethambutol 
• rashes or itchy skin
• chills or a fever
• bruising more easily
• problems caused by the medicine harming your liver. This can cause yellowing of the skin. Yellowing of the skin may be less noticeable if you have brown or black skin, but the white part of your eyes will look yellow.
• numbness or tingling in your fingers or toes

What should I do if I am worried about side effects from my medicines or about my NTM infection?

Do contact your NTM specialist or GP quickly if you are worried about your NTM infection or possible side effects of your treatment for NTM. It is much better to ask than to worry.

Can I drink alcohol while taking NTM medication?

Yes, it is safe to drink alcohol in moderation while taking your NTM medications. Drinking in moderation means:

• For men: three to four alcohol units each day
• For women: two to three alcohol units each day

One alcohol unit is half a pint of beer or lager, one pub measure of spirit or one small glass of wine.

Who can I contact for support information?

More information

Further information about the diagnosis and treatment of NTM is available from:

• NTM Patient Care UK
• Asthmaandlung.org.uk
• BLF.org.uk

References

• British Thoracic Society