Has anyone (like me) else been told they have MAC by very competent docs, bronchoscopy, CT scans, and then told by a different doc that it might all be a gastro problem? I was diagnosed with MAC in 2018 at a major teaching hospital , following a SUPER D Navigation Bronchoscopy, where MAC was cultured in several places. Leading up to the Bronchoscopy, I had had a lot of chest CT scans as part of followup in the preceding 10-15 years for two kinds of cance), from which I got a diagnosis of Bronchiectasis in 2011, and radiologists' notation lung nodules, which raised red flags and caused concern to the cancer docs because of the fear they were metastases– hence the multiple repeat chest CTs– however the head thoracic surgeon at the cancer center I went to said he thought it was probably "a disease called MAC", because that is what it looked like on film and fit my symptoms more than mets. I have had a history of chronic coughs. From about 2005-2015, I would get a chronic cough every November, which was triggered by hiking strenuously at high altitude breathing deeply in very cold alpine air, which would last about 6 months and then go away until the next November, and Id get chills every day for months at a time and then they'd go away. In about 2015, the cough changed to year-round, which motivated me to go to a pulmonologist in 2017 which led to the Bronchoscopy, which resulted in going to an Infectious Disease doc–I decided not to pursue the 3 abx because my symptoms were not that bad, the pulmonologist had me start lung clearance with aerobika, and also went to an immunologist who diagnosed me with low gamma globulin and I now take replacement IgG via weekly subcutaneous infusions. My nodules are actually getting better and I think it is likely the gamma globulin, which apparently is known to be protective against some respiratory infections. I always had a hard time making sputum, and when I did cough it up into a cup as opposed to the bronchoscopy, I had very low colony. I went to a new hospital for review in 2019. The doc there (an infectious disease doc who apparently believes many people who think they have MAC may instead have gastro problems) said he thought at the time of my (sole) visit to him, that my cough etc was actually the product of GERD and reflux, and the MAC was likely just incidental, but he did not review my Bronchoscopy, and the swallowing tests I did did not show inhalation, and upper GI endoscopy I had done afterwards did not show GERD/ reflux (for which there is no definitive test my home GI doc told me). . As it turned out the sputum cultures done at that hospital, 2 months later, showed a v high level of MAC colonies– 60, so I think he may be wrong because he was basing his analysis as he explained it to me primarily on low sputum counts. There was another woman there at the same time, with similar symptoms to mine and she was told the same thing– and her son was a pulmonologist. I have not been back there– with COVID, I have stayed away from hospitals, but I am in need of a number of tests and have few resources in the small town I live in . But, I'm confused about the gastro approach– and, I feel like Im my own doc, weighing countervailing medical opinions, which I do not like,
Liked by Brenda R.