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NTM Frequently Asked Questions

Common Questions about nontuberculous mycobacteria (NTM):

Why do I need to have sputum cultures?

Sputum cultures tell you and your healthcare provider what kinds of germs might be in your lungs. Knowing which germs are present helps your healthcare provider choose the right treatment for your infection. Along with your symptoms, the provider will then determine if, and when treatment is needed. If you are not experiencing symptoms or worsening of symptoms, there is no need to contact your provider. It is important to keep in mind that the lungs are not sterile. People may have bacteria in their lungs but still be healthy and not require antibiotics.

How often does sputum need to be mailed?

Every three months if not currently on treatment otherwise every month.

Do I pay to mail sputum?

Yes, you are required to pay postage for USPS or any other carrier you choose, to deliver your sputum specimen. Tracking numbers can help you determine if it has been received but are not required.

How do I request more mailers?

When you mail your last container, send a request through MyChart or call 903-877-7916 and let us know you need a new supply. Three more containers will be mailed, and it usually takes 7-10 days. If you haven’t received them in 2 weeks, let us know.

Why can I not see my results?

When the results are finalized, they will appear in MyChart. You will not see preliminary results.

Why can I not see sensitivities?

Epic does not display sensitivities in MyChart but your provider can see them.

How do I read my sputum culture?

Not all positive cultures have the same significance or meaning. Any positive culture must be interpreted by considering factors such as patient symptoms, chest x-rays, and chest CT scan findings. A positive culture does not mean treatment is failing or has failed, or that treatment should be restarted if it has been stopped. These considerations usually require discussion with the provider during your next scheduled appointment.

Colonization - Indicates the presence of an organism without symptoms of illness. The patient does not have symptoms when colonized. Individuals can be intermittently or permanently colonized.

Infection - Indicates the presence of an organism with clinical signs and symptoms of illness.

What if my culture does not grow anything?

No action is needed if you are not having symptoms. If you are having new or increased symptoms it could be an exacerbation of your lung disease rather than an infectious process and should be reported.

Do I need to continue my medications if I feel better?

Yes, stopping medications on your own could create resistance to antibiotics. Consult your provider prior to discontinuing medications.

What is resistance?

Resistance is a defense bacteria acquire against antibiotics. When bacteria become resistant, it means they have changed some of the physical traits that make them vulnerable to antibiotics.

When do I need an eye exam?

When starting treatment that could cause vision changes or anytime you experience changes in your vision during your treatment. Your ophthalmologist will determine how often you should have routine follow-up exams during your treatment course.

When prescribed Ethambutol you should see your ophthalmologist as soon as possible and let them know you are taking ethambutol. The ophthalmologist will then make the decision regarding how frequently the vision exams should be.

What if I notice changes in my vision?

Stop your medication immediately, make an appointment with your ophthalmologist and notify your care team right away.

When do I need a hearing test?

When starting treatment that could cause hearing loss or anytime you experience changes in your hearing during your treatment. Your audiologist will determine how often you should have routine follow-up exams during your treatment course.

When on Azithromycin or Aminoglycosides.

Samples of Aminoglycosides:

  • Amikacin
  • Arikayce
  • Tobramycin
  • Streptomycin

 

What if I have changes with my hearing?

Stop your medication immediately, notify your care team, and make an appointment with your audiologist.

How often do I need?

High Resolution chest CT scan: Once a year, as needed, depending on the current symptoms.
PFT: Pulmonary Function Test is required once a year. Spirometry is required at every follow up.
Lab Work: 1-3 months while on NTM antibiotics

Does my drug treatment interact with my other medications?

Follow up with your pharmacist with a complete list of all the medications you are taking as they have a better understanding of possible interactions.

How long do I take the antibiotics?

It varies depending on your condition, check with your care team before stopping treatment. The guidelines for NTM management recommended patients stay on therapy for 12 months after they have cleared the infection. Overall therapy plans depend on how well the bacteria responds to treatment, if it develops resistance, how well your immune system responds to the pathogen, and how well you are doing on the medications.

Respiratory Order of Therapy:

Please keep in mind all these steps might not apply to you specifically:

  1. Bronchodilator such as albuterol to help open up the airways.
  2. Hypertonic Saline (3-3.5%, 7% or 10% Sodium Chloride) to help wet secretions and mobilize them.
  3. Airway Clearance with a vibration device such as Aerobika or a vest to help move secretions.
  4. Active Cycle of Breathing to move secretions from the small airways to the large airways. This facilitates coughing up secretions.
  5. Antibiotic treatment such as Arikayce, TOBI, or Gentamicin (if ordered) to help clear infection.

 

Should I exercise?

Exercise and staying active should be a part of everyone’s daily routine. Exercise does not have to be something formal that is done at the gym. Some benefits of exercise:

  • Keeps the lungs healthy
  • Loosens mucus in the lungs so it can be coughed up easier
  • Makes breathing deeper easier

 

Can I go on vacation/fly?

Yes, ntminfo.org has a printable card which notifies agents of any conditions or devices that would require special attention.

Do I have to do airway clearance when on vacation?

To prevent an exacerbation it is best practice to continue your whole treatment regimen even while on vacation. If this is not possible, reduce treatment to Aerobika and Active Cycle of Breathing until all treatment is possible.

What is an exacerbation?

A bronchiectasis exacerbation is if you have 3 or more of the following symptoms for more than 48 hours:

  • Increased cough
  • Increased mucus production
  • Color change of your sputum to green
  • Blood in your sputum
  • Chest discomfort
  • Fever

 

If you experience 3 or more of those symptoms for 48 hours then you should let me know because it would mean that you need an antibiotic.

References:

NTM Info and Research Inc. – Nontuberculous Mycobacteria. English. (n.d.). Retrieved April 11, 2022, from https://ntminfo.org/

Bronchiectasis toolbox. Bronchiectasis. (2019, April 5). Retrieved April 11, 2022, from https://bronchiectasis.com.au/

Polverino, E., Goeminne, P. C., McDonnell, M. J., Aliberti, S., Marshall, S. E., Loebinger, M. R., Murris, M., Cantón, R., Torres, A., Dimakou, K., Soyza, A. D., Hill, A. T., Haworth, C. S., Vendrell, M., Ringshausen, F. C., Subotic, D., Wilson, R., Vilaró, J., Stallberg, B., … Chalmers, J. D. (2017, September 1). European Respiratory Society guidelines for the management of adult bronchiectasis. European Respiratory Society. Retrieved April 11, 2022, from https://erj.ersjournals.com/content/50/3/1700629.long