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MAC possibility, what should I do?
I am wondering what to do. I will try to be a short as possible. I had a lingering cough after a virus in 2008 and the doctor ordered Xray then CT scan. It showed a pulmonary nodule. The doctor said he suspected MAC but would do another one in 6 months. Since 2008 and follow-up CT scans there are slight changes, some areas worse and some better. My doctor did a biopsy that showed no malignancy but the lab threw away the sample to test for MAC and my doctor says another broncoscopy is the only way to get a good sample and I don't want to go through another one. The doctor wants to go ahead and treat me for MAC for 18 months with 3 antiobiotics. I hesitate to do this without a definitive diagnosis because antibiotics are extremely hard on my stomach. I am baffling to my doctor because I don't have all the symptoms. I have no fever, night sweats, or fatigue and my breathing tests are normal. What I do have is some minor coughing at times with very occasional blood in the sputum. I did go a complete year without any blood. My most bothersome symptom is excess sputum especially when laying flat on my back. Also, the front of my chest is sore at times which I don't know if it is related. I guess my questions are could this be anything else besides MAC and if it is will it ever go away without treatment and would it hurt to delay treatment until my symptoms are more severe?
Thank you,
Janet
Thank you,
Janet
MEDICAL PROFESSIONAL
You have provided a nicely detailed description of your illness and the sequence of events. But the basis for the diagnosis of MAC (one sub-type of the larger category of NTM, non-tuberculous mycobacteria) is not evident in the information provided
The following information is taken directly from: Mason: Murray and Nadel's Textbook of Respiratory Medicine, 5th ed. Copyright 2010 Saunders. It is a more succinct expression of the characteristics, than I could provide.
NTM lung infection presents with diverse manifestations (Table 35-2). This chapter focuses on the most common clinical presentations in the immune-competent host: chiefly, tuberculosis-like (cavitary) disease and disease associated with nodules and bronchiectasis (nodular/bronchiectatic disease). The diagnostic evaluation usually consists of (1) assessment for the presence of one or more compatible symptoms, which are usually insidious in onset (cough, sputum production, fatigue, weight loss, fever, hemoptysis); (2) radiographic evaluation, which frequently includes high-resolution computed tomography (HRCT) scans of the chest; and (3) microbiologic evaluation, which usually consists of three or more sputum specimens for microscopy and mycobacterial culture and/or collection of specimens bronchoscopically. The most important diagnosis for exclusion is tuberculosis.
The diagnosis of NTM lung disease can be challenging. Unlike pulmonary tuberculosis, in which a single positive culture of sputum or bronchoscopic specimen, barring laboratory contamination, establishes the diagnosis, confirmation of the diagnosis of NTM lung disease usually requires repeated isolation of a particular NTM species. Diagnostic criteria have been developed—and recently revised—to aid the clinician in the diagnostic evaluation of persons suspected of having pulmonary NTM disease.[5] The NTM diagnostic criteria outlined in Table 35-3 are based on experience with common and well-described respiratory pathogens such as MAC, M. kansasii, and M. abscessus. However, it is important to note that because of the varying pathogenicity among the many NTM species, no single diagnostic approach will work for all cases.[62c] Diagnostic criteria that are too sensitive promote overdiagnosis and the unnecessary exposure of patients to potentially toxic antimicrobial medications (italics mine). By contrast, overly rigid diagnostic criteria put patients at risk for undertreatment and progressive NTM disease. Fortunately, NTM lung disease is usually sufficiently indolent for a careful patient assessment to determine with confidence the presence or absence of significant disease.
A single positive sputum culture for NTM is usually regarded as indeterminate for the diagnosis of NTM lung disease. In contrast, when two or more sputum cultures are positive, the diagnosis of disease is more likely.
For example, 98% of patients with two or more positive sputum cultures for MAC had evidence of progressive disease during follow-up in a study from Japan.[63] A single positive NTM culture from bronchoscopy can be diagnostic for disease (see Table 35-3), but the clinician must keep in mind those NTM species that are usually respiratory contaminants (especially M. gordonae) and those NTM species that can be found in tap water (discussed earlier) since “pseudo-outbreaks” of NTM disease can be the consequence of bronchoscopic equipment that has been inappropriately rinsed with tap water (italics mine)
Making the diagnosis of NTM lung disease does not necessitate the institution of therapy, which is a decision based on potential risks and benefits of therapy for individual patients. Factors that might influence the decision to treat NTM lung disease include the virulence of the NTM pathogen and the potential for disease progression, the severity (or lack of severity) of symptoms and radiographic findings, the presence of known indolent disease, and the presence of advanced age and/or severe comorbid conditions (with limited life expectancy); another factor is the inability to tolerate the prolonged and sometimes toxic antimicrobial regimens for NTM disease. Again, there is no substitute for physician familiarity with NTM pathogens and the individual patient for optimal management of NTM lung disease. (italics mine)
The preceding is provided as an Overview of NTM and MAC. The importance of proceeding with caution, to establish and treat this condition, is implicit in this information, as is the impossible-to-overstate importance of evaluation and treatment by a physician, with knowledge and experience in the diagnosis and treatment of NTM. Your physician may meet that criterion but, if not, you should seriously consider seeking a second opinion by physicians at a medical institution, noted for experience with NTM. One such institution is National Jewish Health (formerly, The National Jewish Center for Immunology and Respiratory Disease), in Denver, Colorado, The Massachusetts General Hospital in Boston, and the University of California at San Francisco (CA) Hospitals.
You ask, “could this be anything else, other than MAC?” The answer is there are many other pulmonary diseases that could present in this fashion. Thus it is still of the utmost importance that efforts continue to establish a definitive diagnosis, so that you may receive appropriate, optimum therapy and not be exposed to inappropriate, potentially harmful treatment and diagnostic procedures.
I suggest that you not agree to prolonged therapy for MAC, without there being a definitive diagnosis. That you question your physician about his/her experience in the diagnosis and treatment of conditions, such as yours, and if it is not extensive, that ask for his/her assistance in arranging for a second opinion at one of the above institutions or at one comparable to them.
One reason to be optimistic is that your is obviously a slowly progressive, indolent condition, suggesting that there is still time for diagnosis, treatment and cure.
Good luck
The following information is taken directly from: Mason: Murray and Nadel's Textbook of Respiratory Medicine, 5th ed. Copyright 2010 Saunders. It is a more succinct expression of the characteristics, than I could provide.
NTM lung infection presents with diverse manifestations (Table 35-2). This chapter focuses on the most common clinical presentations in the immune-competent host: chiefly, tuberculosis-like (cavitary) disease and disease associated with nodules and bronchiectasis (nodular/bronchiectatic disease). The diagnostic evaluation usually consists of (1) assessment for the presence of one or more compatible symptoms, which are usually insidious in onset (cough, sputum production, fatigue, weight loss, fever, hemoptysis); (2) radiographic evaluation, which frequently includes high-resolution computed tomography (HRCT) scans of the chest; and (3) microbiologic evaluation, which usually consists of three or more sputum specimens for microscopy and mycobacterial culture and/or collection of specimens bronchoscopically. The most important diagnosis for exclusion is tuberculosis.
The diagnosis of NTM lung disease can be challenging. Unlike pulmonary tuberculosis, in which a single positive culture of sputum or bronchoscopic specimen, barring laboratory contamination, establishes the diagnosis, confirmation of the diagnosis of NTM lung disease usually requires repeated isolation of a particular NTM species. Diagnostic criteria have been developed—and recently revised—to aid the clinician in the diagnostic evaluation of persons suspected of having pulmonary NTM disease.[5] The NTM diagnostic criteria outlined in Table 35-3 are based on experience with common and well-described respiratory pathogens such as MAC, M. kansasii, and M. abscessus. However, it is important to note that because of the varying pathogenicity among the many NTM species, no single diagnostic approach will work for all cases.[62c] Diagnostic criteria that are too sensitive promote overdiagnosis and the unnecessary exposure of patients to potentially toxic antimicrobial medications (italics mine). By contrast, overly rigid diagnostic criteria put patients at risk for undertreatment and progressive NTM disease. Fortunately, NTM lung disease is usually sufficiently indolent for a careful patient assessment to determine with confidence the presence or absence of significant disease.
A single positive sputum culture for NTM is usually regarded as indeterminate for the diagnosis of NTM lung disease. In contrast, when two or more sputum cultures are positive, the diagnosis of disease is more likely.
For example, 98% of patients with two or more positive sputum cultures for MAC had evidence of progressive disease during follow-up in a study from Japan.[63] A single positive NTM culture from bronchoscopy can be diagnostic for disease (see Table 35-3), but the clinician must keep in mind those NTM species that are usually respiratory contaminants (especially M. gordonae) and those NTM species that can be found in tap water (discussed earlier) since “pseudo-outbreaks” of NTM disease can be the consequence of bronchoscopic equipment that has been inappropriately rinsed with tap water (italics mine)
Making the diagnosis of NTM lung disease does not necessitate the institution of therapy, which is a decision based on potential risks and benefits of therapy for individual patients. Factors that might influence the decision to treat NTM lung disease include the virulence of the NTM pathogen and the potential for disease progression, the severity (or lack of severity) of symptoms and radiographic findings, the presence of known indolent disease, and the presence of advanced age and/or severe comorbid conditions (with limited life expectancy); another factor is the inability to tolerate the prolonged and sometimes toxic antimicrobial regimens for NTM disease. Again, there is no substitute for physician familiarity with NTM pathogens and the individual patient for optimal management of NTM lung disease. (italics mine)
The preceding is provided as an Overview of NTM and MAC. The importance of proceeding with caution, to establish and treat this condition, is implicit in this information, as is the impossible-to-overstate importance of evaluation and treatment by a physician, with knowledge and experience in the diagnosis and treatment of NTM. Your physician may meet that criterion but, if not, you should seriously consider seeking a second opinion by physicians at a medical institution, noted for experience with NTM. One such institution is National Jewish Health (formerly, The National Jewish Center for Immunology and Respiratory Disease), in Denver, Colorado, The Massachusetts General Hospital in Boston, and the University of California at San Francisco (CA) Hospitals.
You ask, “could this be anything else, other than MAC?” The answer is there are many other pulmonary diseases that could present in this fashion. Thus it is still of the utmost importance that efforts continue to establish a definitive diagnosis, so that you may receive appropriate, optimum therapy and not be exposed to inappropriate, potentially harmful treatment and diagnostic procedures.
I suggest that you not agree to prolonged therapy for MAC, without there being a definitive diagnosis. That you question your physician about his/her experience in the diagnosis and treatment of conditions, such as yours, and if it is not extensive, that ask for his/her assistance in arranging for a second opinion at one of the above institutions or at one comparable to them.
One reason to be optimistic is that your is obviously a slowly progressive, indolent condition, suggesting that there is still time for diagnosis, treatment and cure.
Good luck
I say this because I found it on the internet for treatment of MAC. If you can get by with a sputum test that would be the way to go as it is not invasive. Google "MAC lung treatment" for more information. I just gave a brief look.
I believe there a sputum test for this ailment.
No, fortunately I don't. I would ask for the sputum test in any case. Some doctors go for the most expensive procedures because they make more money that way. This may not be true in your case, but I am always on the lookout. Note that one-third of all women in the US give birth by C-section. Medically well under 10 per cent of women require it. Note also that we have one of the highest maternal death rates in the western world. A little paranoia is not a bad thing.
Thank you for this information. I looked up some websites and found them very helpful. I wonder why my doctor told me the sputum tests didn't work. Do you have MAC?
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