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Bronchiectasis and Gerd
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,
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@clpc If you have been diagnosed with MAC through a culture that grew that organism, then you have MAC. I think the confusion with a “gut” issue comes from the fact that many people with MAC have GERD (acid reflux basically). Also, people with nodular MAC have nodules because of the infection. If the nodules grow bigger than a certain size ( some doctors vary on what size) then it will be biopsied to rule out cancer. An endoscopy can tell if you have any esophageal inflammation or erosion. Then, based on symptoms a doctor can tell you if you have Gerd, even the silent type. I’m sorry you are receiving vacillating opinions. I am sure you are frustrated. irene5
I see it the way you see it. But the recent doc acted like it was not even MAC tho i tested positive on gold standard test in multiple ways and then had multiple gastro tests which all came back negative. . I do not look like a sick person, most of time. Seriously I think that’s part of issue. Anyway, it took wind out of my sails, I quit airway clearance, started getting chills again. My home doc ignored outside expert. It’s confusing.
@clpc, Hello, you seem to be very aware and informed “up on this”. Thanks for all the good background. To answer your question, my best understanding of what my doctors have told me is there is a high rate of correlation for patients with Bx, MAC, and GERD, and studies indicate in some cases GERD may be the pathway through which Bx begins, esp. when we unknowingly aspirate particles from gut to lung at night. I have GERD, but my docs don’t believe that is why I developed Bx and eventually MAC. Mine is idiopathic, but probably related to childhood pneumonia(s). My understanding is I’ll never be rid of MAC now that it’s set up house in my lungs and sinuses, along with several other bad actors, all of whom are fighting for real estate. But my life is significantly better since diagnosis 5 years ago. My Rx is: regular airway clearance (vest + 7% saline nebulizer + postural drainage for lungs) + Gentamicin & Budesonide inhalants using my Navage device, + exercise + sleep + water. I haven't heard of anyone saying their Bx and MAC were mistaken for GERD. Best of luck & blessings to you, please keep us updated.
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4 Reactions@clpc...I agree with Brenda. GERD is the pathway through which some of us get lung damage. In order to control my MAC and Bronchiectasis, I had to fix my GERD. I had hernia repair, low acid diet, sleeping upright for that. To keep the Bx under control, I use my nebulizer 2x with asthma meds and use postural drainage 2x a day. I took the Big 3 meds and have had no exacerbations of Bx or MAC for 6 years.I used the book, Chronic Cough Enigma by Dr. Jamie Koufman, to discover why I coughed all the time. It has self-tests to help figure where your particular cough comes from.
I understand the reluctance to take the Big 3, however, MAC destroyed one of my lobes and it is dead forever. Keep up with your CT scans.
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3 ReactionsHow frustrating. I'll get "on my soapbox" again. As a person with an uncommon condition, you have done the first step and educated yourself. And the second, trying to work with your docs. If your docs don't listen, sometimes it's time for a third step- finding new ones. Feels drastic since we've spent our whole lives being told they were the experts, but we must be our own best advocate.
Sue
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5 ReactionsHello egayle, 3 separate diagnoses (GERD, MAC and Bronchiectasis) and all 3 could be inter-related, a person could very well have all 3, and wonder what order they occurred. Several months ago I posted a link to a good video from NJH, here it is again https://www.youtube.com/watch?v=BZwM3fsTIIY&feature=youtu.be **** I also read that book by Dr Jamie Koufman years ago when all I had was a chronic DRY cough, it was very informative, highly recommend to any one with a chronic cough. In my case I believe the LPR (GERDS) came first then the bronchiectasis and finally the MAC, but who knows for sure. Bill
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3 ReactionsI hear you.... I looked very healthy before and still do fully clothed....now weigh 88-92 pounds ....can't keep any weight on...docs take one look at first and sort of roll their eyes....no sign whatsoever that there's so much damage inside.
Now, hear me on this, you must feel comfortable with your doctors because frustration and fear can lead to anxiety which effects your breathing tremendously. The calmer you are the better you breathe. They should be willing to work together for your benefit or step back and let others do their jobs....took me 2 years to find a new pulmonologist who is willing to work with NJH. The first one is young very well educated and found the issue for which I am forever grateful but didn't believe in sputum cultures and couldn't be bothered to work with NJH. Totally unacceptable on both stances in my opinion.
Do the airway clearance....if it's not working drink more water...... humidify the air in your home with copd water, cleaning the humidifier daily, clean your shower heads regularly with vinegar if you shower. Watch what you eat and exercise. This is a whole body wide "congestive issue" so get things flowing again and get your body moving.
I will keep you in my thoughts and prayers.... you've got this!
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4 ReactionsMentors?
I think this was supposed to go to Granny....😳 I'm still doing something wrong
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1 ReactionThanks. I'll look at the Koufman book. Im looking for new institution to go to, I come from small town where my pcp had never heard of NTM or MAC. I may try UCSF since I hav gone there annually for followup/ review of a cancer I had removed there in 1990s-- but Ive skipped followup there because of covid (2020) and smoke (2019) last two years. I've had pneumonia and pleurisy, but maybe inhalation of stuff was pathway to lung damage also. What I am fascinated about it that my lungs have gotten better very slowly re nodules since going on this replacement gamma globulin, and I"ve only had one respiratory infection (flu B) since I started- its clearly protective. It is from pooled blood supply and so eventually I should be getting plasma with covid antibodies-- I think, if I understand how the immunology works which is fascinating but difficult to Intuit , I think I need an immunology course to understand it. I also had chronic fatigue back in the 1980s and I recall I had low T or B cells, so again. low immunity. My oncologist said dont worry about the low immunity unless to is really really way below ref range, and mine is only about 15% below lowest ref range-- but boy having it up to normal from the addition of infusions has made a world of difference in terms of getting sick, having chills, etc
why is it hard for local docs to work with NJH? I thought NJH prided themselves on working with local docs -- maybe I got that wrong. Im looking for new institution to go to like I said above-- the hospital I have liked have been in LA, NYC and New Hampshire- the one I got the original MAC diagnosis from was in a city where my son lived (LA) but he moved, so I got a 2-fer one by going to the doctor there-- Id go to see my grandchildren , son DIL and also go to good doc I liked, in a smoothly run hospital. I have another son who lives in San Francisco and I'm already a patient at UCSF so I might go there. Another son in Denver-- so NJH would be possibility. I think NJH is very involved in gastro approach, whatever that is?