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.
Mycobacteria are naturally occurring environmental organisms found widely in both water and soil. They can cause significant respiratory damage, such as bronchiectasis. There are various species of nontuberculous mycobacteria. MAC or mycobacterium avium complex, M. kansasii, M. abscessus, M. chelonae, M. intracellulare and M. fortuitum are just a few. (M. is used as an abbreviation for mycobacterium.) Some are readily treated with two or three drugs, while 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.
No. Nontuberculous mycobacteria are not considered to be communicable person to person.
You've probably heard of other mycobacterial diseases. The two most famous, or infamous, forms of mycobacteria are different than NTM lung illness. They are Mycobacterium tuberculosis (TB) and Mycobacterium Leprae (leprosy), both of which have caused great human suffering and are contagious (spread from person to person).
Nontuberculous mycobacteria (NTM) should not be confused with TB or leprosy. There is considerable scientific evidence that NTMs are acquired from the environment, not other persons.
NTM lung disease (pulmonary NTM disease) is not as well-known or understood as TB. We know that there are certain underlying conditions (sometimes referred to as a comorbidity) that make some people more susceptible to NTM infection, such as prior lung infection as well as COPD and genetic diseases such as Cystic Fibrosis, Alpha-1 antitrypsin deficiency, and primary ciliary dyskinesia (PCD). In a substantial number of cases, NTM patients have one or more comorbidity. However, it is still not completely clear why some people get infected and some don't. Although slender Caucasian women are particularly vulnerable to infection, we are now seeing it in men, younger women, and children. Illnesses which feature immune dysregulation, such as autoimmune disorders like Sjogren's disease or rheumatoid arthritis (RA), may also increase someone's risk of infection. We also know now that immunosuppressive medications such as chemotherapy, prednisone, or drugs used to treat conditions such as RA, psoriasis, and Crohn's disease, may increase the risk of NTM infection.
Other underlying conditions include pneumonia, prior inhalation of inorganic dust including silica, GERD (gastroesophogeal reflux disease, which is spillage of material from the mouth or stomach into the lungs), bronchiectasis, emphysema, or cigarette-induced lung injury.
Though the exact number of pulmonary NTM patients in the United States is not known, some studies estimate it to be as high as 50,000 to 90,000 people in the United States at any given time, with between 12,000 and 18,000 people becoming infected each year.
NTM organisms are everywhere in the environment, including water (both natural sources and treated tap water) and soil. Doctors and scientists believe that some patients become infected with NTM from inhalation of mycobacteria that become aerosolized when the patient showers in an enclosed shower stall, uses an indoor pool 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.
Some patients may become infected with NTM from inhalation of mycobacteria naturally existing in potting soil, through activities like gardening. Keep in mind that many doctors and scientists believe NTM lung infection is not just due to exposure to the bacteria in the environment but also because of host vulnerability - some people are predisposed to infection while others are not.
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:
Sputum culture - sputum is cultured for acid fast bacilli (AFB), which is the basic test to identify mycobacteria. For accurate identification of the strain of NTM and drug sensitivities, testing should be done at a highly specialized laboratory, which 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, which is a common problem when NTM infections are treated with single drug therapies. If you have trouble coughing up sputum (also called mucus or phlegm), your doctor may decide to perform a bronchoscopy to obtain the needed sample.
Chest CT (computed tomography) - A CT (CAT) scan is a three-dimensional image generated from a large series of two-dimensional x-ray images taken around a single axis of rotation. Chest x-rays alone provide rudimentary identification of lung ailments. A CT scan provides the doctor with a detailed look at the extent and location of disease and is an important diagnostic tool. It can show mucus-filled airways, which appear as white spots on the images (sometimes referred to as "tree-in-bud" because of their branch-like appearance). NTM diagnosis and follow-up generally requires a high resolution CT scan without contrast.
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. Click here for tips on generating a family health history.
Patients with NTM infections often experience a variety or even all of the following:
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 (this is called hemoptysis). 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 to help minimize the amount of blood you cough.
Night Sweats, Fever - You may experience some low-grade fever rather than the high and debilitating fever associated with flu or other illness. The sensation of feverishness and sweating is more prominent at night.
Loss of Weight and Loss of Appetite - It is not uncommon to lose weight, which is why 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. Click here for a nutrition guide and printable food diary.
Lack of Energy - Many patients note a variable but often profound sense of fatigue.
Other symptoms include feeling short of breath, wheezing, and chest pain around the lung area.
Living with 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 medical professionals, and your medicines.
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.
Taking Medicines - You will likely need to take 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 medications 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.) The American Thoracic Society (ATS) and Infectious Disease Society of America (IDSA) recommend standard treatment guidelines for pulmonary NTM diseases. Occasionally the standard therapy will fail or another combination of drugs will be recommended depending on the strain of NTM. In these cases, antibiotics may be added or changed.
Types of Medicines
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. You may have trouble swallowing pills. When taking them, don't tilt your head back. Instead, put your chin down to your chest and swallow the pills. You can also use soft food like applesauce; combine the pill with it and swallow.
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.
Inhaled drugs - Some medicines may be inhaled directly into your lungs or 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. Run the unit to clear and dry the tubing to avoid bacterial growth. Sterilize the nebulizer mouthpiece regularly, as directed by your doctor. 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.
- Hearing, Vision and Other Testing - Some of the antibiotics your doctor may prescribe can affect your hearing or vision. For example, ethambutol may cause optic nerve damage that can only be detected by an eye exam; by the time you perceive a problem, it may be too late, so regular checkups are recommended. Other antibiotics may damage your hearing initially, in the high-frequency range, so you might not notice the damage until it has progressed. Ask your doctor about getting baseline tests on your hearing and vision when beginning treatment for NTM lung disease. For your vision, it may be advisable to see a neuro-ophthalmologist because the vision damage may require special training or equipment to detect. Patients with certain heart conditions may be at risk of developing a dangerous irregular heart rhythm when taking certain types of antibiotics. Speak with your doctor about getting evaluated for these conditions and having regular EKGs if taking one of these medications.
Clear your lungs and sinuses (airway clearance)
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 an acapella or Aerobika, use of a pep valve or an inflatable electric vest, or inhaled saline solution. The respiratory therapist will likely teach you additional clearance methods including a deep or "huff" cough. Whatever methods 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. Your doctor and respiratory therapist will decide which methods you should use and will teach you how to do them.
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.)
Drink copious amounts of fluid - Patients with NTM disease need more fluids. Fluid is essential for thinning mucus secretions, which in turn helps you clear mucus from your airways. It also helps your kidneys and liver process medications. Try to minimize drinks such as alcohol and 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.
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.
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?
PFTs are usually performed in order to follow for the progression of lung disease and are also used to determine if surgery is appropriate. They consist of a battery of measurements 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:
Spirometry: the patient breathes in deeply and exhales as fully and forcibly as possible, so the measurement of the lungs’ ventilatory function can be assessed.
Body plethysmography: measures the gas volume of the lung, using changes of pressure that occur during breathing.
Diffusion capacity: the patient breathes in small amounts of carbon monoxide and the test measure how much of this gas gets into the blood. This indicates the ability of the lung to allow oxygen into the blood.
Arterial blood gas measurements: a minute amount of blood is extracted 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.
- Oxymetry: also provides a measurement of the oxygen level in the blood using a device (pulse oximeter) placed on the patient's finger for a minute or two.
Your lungs are made up of three lobes on the right and two lobes on the left, although each lung is about the same size. Sometimes lung damage associated with an NTM infection may be isolated or most severe in one lobe or one area of your lung. Surgical removal of that lobe or area ("lobectomy" or "segmentectomy") combined with other treatments such as antibiotics may be recommended.
Although surgery doesn't usually replace the need for antibiotics, it may improve the chance the infection is eventually eradicated. You might be considered a candidate for surgery if the infection is more localized in one area of the lung, and if standard antibiotic therapy has failed or isn't well tolerated. Many times, surgery is performed using a technique known as VATS (video-assisted thoracic surgery), which is much less invasive, considerably less painful and has a shorter recovery period. The open surgical method, which requires the use of a rib spreader, is used when there is more extensive damage and more lung tissue needs to be removed.
Prior to surgery, you will be on an intensified antibiotic treatment for two to three months to reduce the infection in your lungs as much as possible, as this can help minimize complications. You will be evaluated for your general fitness and cardiac function, as these are also indicators of how well you can tolerate the surgery and recovery.
The surgery itself can last anywhere from 1.5 to 8 or more hours. During a VATS procedure three small incisions are made, one for the video scope and two for the surgical instruments. The lobe or segment is carefully separated and removed from the other lung tissue, then placed in a bag and removed - the bag is used so the lobe does not touch other tissue and spread infection elsewhere.
After the procedure, you will probably stay in hospital two to four days, and you'll be prescribed oral medications for pain management at discharge. They will be tapered off over the next several weeks. Typical recovery length is 3 to 6 weeks. You will be walking the day after surgery, and after you are discharged from the hospital you should walk daily as instructed by your doctor as this will help your recovery along.
Other activities will depend on your recovery. You should not attempt to drive until you are off of pain medication and at least three weeks after your surgery. Walking as a form of exercise is important for your recovery, while other forms of exercise probably shouldn't be attempted until 4 to 6 weeks after surgery, and definitely not until your doctor has cleared you to do so.
The remaining lung generally should be relatively free of disease, and calculated pulmonary function after surgery should be in the range of acceptable to relatively normal or reasonable.
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, and carry hand sanitizer with you.
Other measures may help reduce (though not completely eliminate) your exposure to NTM, including:
- Properly ventilating bathrooms or other shower/steam areas. 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.
- Cleaning your showerheads regularly to remove the biofilm, which acts as a breeding ground for mycobacteria, by removing the showerhead and disassembling it to the best of your ability, then scrubbing it with soapy water. After cleaning it, you can also soak it in vinegar to remove calcium buildup.
- Raising the temperature of your household water heater to 55 degrees Celcius (131 degrees Fahrenheit) to kill the mycobacteria in the hot water.
- Using humidifiers with caution. Avoid ultrasonic humidifiers if possible, and clean your humidifier's reservoir frequently. Soak it in undiluted bleach for 30 minutes and rinse it thoroughly. When filling the humidifier, first boil the water for 10 minutes to kill any NTM. Allow the water to cool slightly before you pour it into the humidifier.
- Wearing an inexpensive dust mask to prevent inhalation of dirt particles while working with potting soil or in the garden, and wetting down the soil to reduce the number of particles released into the air.
- Taking steps to reduce GERD (gastroesophageal reflux disease), such as avoiding foods that may trigger it and avoiding vulnerable body positions that may cause aspiration.
Click here for more tips on reducing exposure.
Allergic reactions that irritate your lungs may create additional inflammation and 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, grasses and flowers, dust, air pollution and aerosol sprays.
Indoor air quality can play a part in increasing or decreasing lung irritation. Click here for more information.
Some patients with NTM infections are also vulnerable to other bacterial infections. Some of these infections may also be quite difficult to treat, particularly aspergillus, pseudomonas, or other gram-negative infections.
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.
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 allows your doctor to 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 and calling or seeing your doctor. Your observations may be medically significant so don’t keep it a secret—let your doctor decide.
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. If you need to find a local specialist, a good place to start is with our Physician Referral List.
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. This will help your doctor determine the best drug combinations to be used in your treatment.
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, a 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 initially go to a national referral center because they specialize in treatment of respiratory diseases including mycobacterial infections.
In addition to pulmonary and infectious disease specialists, other medical professionals who may be valuable additions to your team include internal medicine specialists, respiratory therapists, dieticians or nutritionists, and mental health professionals.
Many patients also like to explore alternative medicine treatments. Although most alternative medicines and treatments are not FDA-approved or scientifically vetted through clinical trials, some patients report therapeutic benefits from different kinds of alternative medicine and vitamins or supplements.
If you have found something that works for you, that is great! But before you try anything, particularly something that you ingest or inject, please consult your physician. Certain vitamins and minerals (calcium, for example) can interfere with the effectiveness of certain antibiotics, as can certain food products such as grapefruit and grapefruit juice, so it is important that your doctors know what you are taking, in case you need schedule those differently from your prescribed medications. You can also consult with your pharmacist about drug/supplement interactions.
In addition, you should never start or stop any prescribed medication or treatment without consulting your doctor first.