Bronchiectasis and Gerd

Posted by Granny @goddard, Sep 16, 2020

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,

@sounder27

Painter2 Your advice is perfect! And what a great way to picture it…get things flowing again.
The docs believe that my hiatal hernia caused silent gerd and nighttime aspiration caused the bx and Mac. I sleep on a wedge as well and have sleep apnea, afib and Arthritis to boot!! It all keeps me busy! Lol

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Yes, can't sleep without my wedge….I wonder if your arthritis is from your inflammation? Mine is better on a higher alkaline diet, lower carbs and sugar….I can always tell when I've been cheating… who knew staying healthy would turn into feeling like a part time job ? 😉

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@painter2

You misunderstood me…this has nothing to do with NJH…they are excellent and I do not believe I would be alive today if I had not chosen to go there. My new pulmonologist and his associates in my town are extremely excited to work with NJH and have nothing but praise for them. They were very surprised He wasn't working with them, so, this was probably about his ego. He did a terrific job diagnosing my problem but I completely rejected his solution of using the 3 antibiotics because my family has a history of liver disease and my body doesn't always handle antibiotics very well….I could not imagine being on three for an entire year. So I did some research & I found out NJH was supportive in some cases of alternative solutions esp. with patients with GERD because some believe we tend to reinfect ourselves. NJH was willing to work with my local doctor so I sought their advice.
If you notice my comment on sputum cultures? He actually told me cultures were "not the method the school he went to recommended" which I had already researched and I knew was incorrect…. he just wasn't keeping up with current procedures.
At my next visit he mentioned something about "they were starting to use them now…."
It's very important to listen to our doctors but we also have to know what our bodies are capable of.

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And….the clincher….when I arrived in Denver for my 1st appt. I met a lady my age who had been treated by her local doc for the first year at home with the antiobiotics & it was working but her liver was failing so I truly believe it was Gods way of letting me know I was doing what was right for my situation…..

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@goddard

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?

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I think it's a doctor by doctor issue. I have seen 2 pulmonologists and one ID doc in my group practice. The first pulmo fired me because I dared ask him to allow his own ID doc to be consulted! The second pulmo and the ID doc work together and with NJH and my primary provider like a real team! IMHO it's an ego thing.
Sue

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@painter2

Yes, can't sleep without my wedge….I wonder if your arthritis is from your inflammation? Mine is better on a higher alkaline diet, lower carbs and sugar….I can always tell when I've been cheating… who knew staying healthy would turn into feeling like a part time job ? 😉

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Painter2 yes it is inflammation. I also have a nerve being pinched in my cervical area that’s causing great pain in my arm. My ortho doc has prescribed prednisone which I’m not thrilled with but will take hoping it doesn’t aggravate my afib too much.
I will try the alkaline diet. Thanks

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@painter2

Mentors?

I think this was supposed to go to Granny….😳 I'm still doing something wrong

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Side note:
@painter2 – you are posting perfectly! Here's an article to help understand how replies work.
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

You're doing great.

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@poodledoc

Hello 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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Hi poodledoc. I believe mine happened in that order also.

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