Insight: A Patient's Perspective

This section provides insight into the disease caused by nontuberculous mycobacteria (NTM), and empowers the patient to participate in his or her own treatment. NTM is also known as atypical tuberculosis (Atypical TB), Mycobacteria other than tuberculosis (MOTT) and environmental bacteria (EM). Some common types of NTM include MAC, MAI and M. abscessus.

What are Mycobacteria?

Mycobacteria are environmental organisms found in both water and soil. They can cause significant respiratory damage, primarily to the patient’s lungs.

There are various species or types of nontuberculous mycobacteria. Some are readily treated with two or three drugs. Other types are more difficult to treat, and are resistant to many drugs. These require treatment that is often more complex and of a longer duration.

Am I Contagious?

No. Nontuberculous mycobacteria are not considered to be communicable person to person.

Why have I not heard of it?

You probably have heard of other mycobacterial diseases. The two most famous, or infamous, forms of mycobacteria are different than the NTM illness with which you have been diagnosed. They are Mycobacterium tuberculosis (TB) and Mycobacterium Leprae (leprosy), both of which have caused great human suffering and are contagious and spread from person to person.

Nontuberculous mycobacteria (NTM) should not be confused with TB or leprosy. There is considerable evidence that nontuberculous mycobacteria (NTM) are acquired from the environment, not other persons.

Who gets NTM?

There are certain underlying conditions that make some people more susceptible to NTM infection. It is still not completely clear why some people get infected and some don't. It appears that some NTM infections affect more women than men and often the women who are affected are remarkably thin. We are also seeing more patients who are children, teens or in their 20s and 30s.

Immunosuppressive medicines such as cancer chemotherapy, prednisone, or drugs used to treat conditions such as Rheumatoid Arthritis or psoriasis, may increase the risk of NTM infection substantially.

How did I get NTM?

Empirical evidence shows that NTM infection may occur by exposure to organisms in the environment such as our water or soil.

In a substantial percentage of cases, patients with NTM have some subtle underlying vulnerability that is either genetic or structural in nature. These underlying conditions can include cystic fibrosis, deficiency of a blood protein called alpha-1 antitrypsin, prior lung infection (including TB or histoplasmosis,a fungus common in the Midwest), prior inhalation of inorganic dust including silica, spillage of material from the mouth or stomach into the lungs, or cigarette-induced lung injury.

Other underlying conditions that may increase vulnerability to NTM infection include bronchiectasis, COPD, emphysema and Primary Ciliary Dyskinesia (PCD).

Doctors believe that some patients with these underlying lung conditions may become infected with NTM from inhalation of mycobacteria that become aerosolized when the patient showers in an enclosed shower stall or sits in an indoor hot tub.

For this reason, if you have an underlying condition that might make you susceptible to NTM infection, you may wish to speak to your doctor about the advisability of bathing in a tub rather than showering.

How is NTM diagnosed?

Nontuberculous mycobacteria can be very difficult to diagnose. Unfortunately, this difficulty sometimes delays initial diagnosis until after the patient has had recurrent infections.

This may make treatment more difficult because prior use of single drug therapy may have created some drug resistance. Also, recurrent infections and associated inflammation may have resulted in additional damage to the respiratory system.

The diagnosis of NTM involves the following:

  1. Sputum culture - Sputum is cultured for acid fast bacilli (AFB), which is the basic test to identify mycobacteria. For accurate identification of the specific species (type of NTM disease), and drug sensitivities, testing should be done at a highly specialized laboratory. These specialized labs can tell your doctor which drugs will work (drug sensitivity) and which ones will not work (drug resistance) on the strain of NTM that you have. Equally important is the need to determine which combination of drugs must be used in order to minimize risk of developing drug resistance, a common problem when NTM infections are treated with single drug therapies.

  2. Chest CT (computed tomography) - Chest x-rays provide rudimentary identification of infiltrates in the lungs. A CT scan provides the doctor with a detailed look at the extent and location of disease and is an important diagnostic tool.

  3. Medical History - Knowing what illnesses you have had, including childhood illnesses, may provide your doctor with additional understanding of why certain underlying lung conditions exist.

Common Symptoms of NTM

Patients with NTM infections often experience a variety or even all of the following:

  1. Cough - This may be persistent or periodic and may be productive or non-productive, meaning you may or may not cough out sputum. Lung disease may cause you to cough up blood. If you cough up blood, you should contact your doctor. If you are coughing very large amounts of blood (a cupful or more within a 24-hour period), contact your doctor and seek emergency help immediately. If you are coughing a small amount of blood (less than several tablespoonfuls within a 24-hour period), call your physician as soon as possible. Any time you cough up blood, it is essential to remain calm and still.

  2. Night Sweats, Fever - You may experience some low-grade fever rather than the high and debilitating fever associated with flu or other illness. It is common that the sensation of feverishness and sweating is more prominent or only experienced at night.

  3. Loss of Weight and Loss of Appetite - It is not uncommon to lose weight and therefore it is important to be aware of weight changes. Please consult with your doctor and/or a nutritionist to determine how to modify and augment your diet so that you get enough calories to maintain your weight at an ideal level that helps your body fight the illness and keep up your strength. Eat, eat, eat. The mycobacteria may compete with your body for calories.

  4. Lack of Energy - Many patients note a variable but often profound sense of fatigue.

Other symptoms may include shortness of breath, wheezing, and chest pain around the lung area.

Your Treatment: The Emphasis on YOU!

Successful treatment of a mycobacterial infection requires a skilled and experienced medical team to design and implement a treatment protocol.

The success of your treatment relies on YOU, your doctor, your respiratory therapist, and your medicines.

To determine the treatment, you and your doctor need to discuss the objectives and the methods of treatment that will be used.

Fortunately, you have the ability to play an active role in the progress of your treatment. You should be fully committed to wellness and seek the support of family and friends. Your lifestyle and routines may have to change. The changes you make are to improve your health and lengthen your life, and with a positive attitude these can be rewarding rather than burdensome.

Once you have fully discussed your condition and treatment plan with your doctor, you have the responsibility to implement your treatment and follow through with full commitment.

  1. Taking Medicines - You will likely be taking multiple medications. Take all of your medicines every day for as long as needed. Do not stop when you begin to feel better. The doctor will tell you when the bacteria have been controlled for long enough to stop taking your medicines. Your medicines may have some side effects. Call your doctor to discuss any side effects to determine whether your medicines should be changed or the dosage altered. If you are having a severe reaction, call your doctor or pharmacist immediately. Try to tolerate mild side effects. They are less harmful than the long-term effects of uncontrolled NTM infections. (You can learn more about medications and side effects, and print out a medication schedule to help you keep track, in the “Patients” section of this website.)

  2. Types of Medicines

    1. Oral Medicines - pills or liquid medicines taken orally (by mouth), usually one or more times daily as directed by your doctor. Make sure you understand what time of day to take the medicines, and whether they should be taken before, after, or with meals.

    2. Intravenous (IV) Medicines - These types of medicines will be infused via a port or "picc" line and may be done in a hospital or at home. In some cases, IV treatments are relatively short in nature (a matter of weeks), but in some cases, may be of much longer duration. Be sure you know the frequency with which you are required to take these medicines. It is extremely important that you know how to care for any central catheter (port) or picc line to avoid introducing any other infections.

    3. Inhaled drugs - Some medicines may be inhaled directly into your lungs or into your nose, potentially minimizing side-effects or complications. These drugs include antibiotics, anti-inflammatory agents such as steroids, or bronchodilators. It is extremely important that you learn how to care for the nebulizer in order to maintain sterile conditions to avoid introducing other bacteria or infections into your lungs. Certain inhaled medicines may also be taken by metered dose inhalers, which are easier to maintain than nebulizers. It is very important that your doctor or respiratory therapist show you the proper way to use these inhalers so that you get the benefit of the full amount of medicine into your lungs or sinuses.

  3. Clear your lungs and sinuses.

    1. You and your doctor may have selected one or more ways to clear the mucus from your lungs. It could be chest physical therapy (chest PT) with postural drainage, use of a flutter valve, use of a pep valve or an inflatable electric vest. The respiratory therapist will likely teach you additional clearance methods including a deep or "huff" cough. Whatever method of mucus clearance you have discussed with your doctor, please remember that every time you cough out infected mucus, there is that much less in your lungs to do damage and that much less for the antibiotics to overcome. Extra mucus can collect in your lungs and make you sick.

    2. Your doctor and respiratory therapist will decide which method you should use and will teach you how to do it. Your doctor may have instructed you to do a sinus wash once or twice a day. If so, be sure that you know the correct procedure. The purpose of a sinus wash is to get rid of excess mucus and to prevent this mucus from draining into your lungs. It is extremely important to avoid using contaminated equipment that could introduce some other infection. A respiratory therapist will show you how to do the sinus wash. (Click here for sinus wash guidelines.)

  4. Drink copious amounts of fluid - Try to minimize drinks such as coffee, tea or any other drink that acts as a diuretic and actually results in dehydration. Drink juice and water; when possible, combine juice with your water to get extra calories. Drinking extra fluids decreases the viscosity or stickiness of mucus, making it easier to loosen and cough out secretions. It also helps your kidneys and liver process medications.

  5. Exercise - Exercise is important to help maintain and improve endurance overall. Some patients report that the hard breathing associated with exercise helps them clear their lungs. Exercise is a recommended part of most treatment plans but you must discuss the extent and type of exercise with your doctor before starting.

Pulmonary Function Tests (PFT)

What are they and why do I need them?

Chest x-rays and CT scans show if there are any abnormalities affecting the lungs. Pulmonary Function Tests indicate how the lungs are functioning; specifically, are the lungs able to bring enough oxygen into the air sacs and allow the oxygen to get into the blood for use by other vital organs? In order to measure how the lungs are working, the clinician may order Pulmonary Function Tests. These tests are usually performed in order to follow for the progression of lung disease and are also used preoperatively to determine if surgery is feasible. Pulmonary Function Tests consist of a battery of measurements, done in facilities called Pulmonary Function Laboratories, and are designed to measure the volumes and flow of air that enter and leave the lungs, as well as how efficiently the gases are able to pass from the air sacs into the blood.

Some of the most common Pulmonary Function Tests are:

  1. Spirometry involves asking the patient to breathe in deeply and exhale as fully and forcibly as possible, so that the measurement of the lungs’ ventilatory function can be assessed.

  2. Body plethysmography is a test that measures the gas volume of the lung, using changes of pressure that occur during breathing.

  3. Diffusion capacity entails asking the patient to breathe in small amounts of carbon monoxide and measure how much of this gas gets into the blood; (this indicates the ability of the lung to allow oxygen into the blood).

  4. Arterial blood gas measurements are performed by extracting a minute amount of blood from one of the small arteries in the body (usually in the wrist) in order to analyze the amount of oxygen and carbon dioxide in the blood.

Surgery

Areas of disease and lung damage from an NTM infection may be isolated or most severe in one area of a lung. Surgical removal of part of a lung combined with other treatments may be recommended.

Prevention

Influenza, which is commonly called flu, can be serious for a patient with an NTM infection. Speak with your doctor to be certain you understand the difference between the "flu" and a cold. For patients with chronic lung disease, an annual flu shot or vaccine and a periodic (once every five years) pneumovax or vaccine against pneumonia is generally advisable.

Try to avoid contact with people who have colds or the flu, particularly sharing drinking glasses or utensils.

Wash your hands thoroughly with soap and water frequently. Always wash your hands after using the bathroom, contact with other people, and before and after meals and food preparation.

Allergies

Allergic reactions that irritate your lungs may create additional inflammation and may result in increased sputum production, making airway clearance more difficult.

Be aware of irritants that you sense you may be allergic to. Some possible irritants are: perfumes and colognes, cigarette smoke, pollens from trees and flowers, grasses, dust, air pollution and aerosol sprays.

NTM and other infections

Some patients with NTM infections are also vulnerable to other bacterial infections. Some of these infections may also be quite difficult to treat, particularly pseudomonas.

It is important to have your sputum checked on a regular basis and particularly at any time when your symptoms change. This culture must be requested separately from the test for mycobacteria.

Follow up – Keep Control of your Illness

Your treatment is a partnership between YOU, your doctor, and your medicine/treatments.

Follow-up is your responsibility.

Because treatment of mycobacteria usually requires multiple medicines, it is very important that you schedule regular follow-up visits with your doctor to monitor your condition. It is best to schedule the next visit at the end of each visit.

Even if your follow-up visits are pre-scheduled, it is your responsibility to contact your doctor when something changes. He or she will be able to decide whether new testing is warranted to determine whether or not your treatment plan should be modified.

If you do your part, the doctor can determine when to have your sputum analyzed and when to get an updated CT scan to determine if the course or severity of disease has changed. This is the most important reason for timely and early follow-up. It is so that your doctor can work in partnership with you to keep control of your illness.

Listen to your body and communicate. Keeping a log of your symptoms, reactions to various medicines and anything else that you observe about your condition will help your doctor treat your illness effectively.

Never feel foolish about discussing any aspect of your illness, calling or seeing your doctor. Your observations may be medically significant so don’t keep it a secret—let your doctor decide.

The Role of Referrals

NTM is infrequently diagnosed, but is likely not a rare condition. Rather, it is frequently misdiagnosed and often not even tested for.

Your local pulmonary or infectious disease specialist is the first step in diagnosing an NTM infection so that you can be treated.

Treatment of an NTM infection can be quite complex and it is best to have a specialized mycobacteriology lab analyze your sputum so the species of NTM is accurately identified and a determination of the best drug combinations to be used in your treatment can be developed.

Because of the complexity of developing a treatment plan, you may wish to ask your doctor about the feasibility of a referral to a center that specializes in treatment of NTM infections.

The treatment course developed for you will be a partnership between your local physician who is the pivotal member of your care team and the doctors at the referral center.

National referral centers that specialize in pulmonary NTM disease include:

  • Georgetown University Hospital in Washington, D.C.
  • The Johns Hopkins University, Baltimore, Maryland
  • Mayo Clinic in Rochester, Minnesota
  • National Institute of Allergy and Infectious Diseases in Bethesda, Maryland
  • National Jewish Health in Denver, Colorado
  • Oregon Health and Sciences University in Portland
  • University of California San Diego Medical Center
  • University of Florida in Gainesville
  • University of North Carolina in Chapel Hill
  • University of Texas Health Center in Tyler, Texas
  • Toronto Western Hospital in Ontario
  • Several locations in Queensland, Australia

The choice of the patient who authored this website was to go to a national referral center because they specialize in treatment of respiratory diseases including mycobacterial infections. Her local pulmonary specialist works closely with the doctors and lab at the referral center to coordinate ongoing treatment.

Your local American Lung Association may be able to provide additional information regarding support groups or referrals.

 


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