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Turbocharging the body's healing efforts
MAC & Bronchiectasis | Last Active: Mar 13 3:12am | Replies (36)Comment receiving replies
@blm1007blm1007 yes I have an MAI infection in addition to BE. Diagnosed at essentially same time. I have no history of lung issues so I suspect my BE was caused by the NTM. The only mucus I experience is largely after eating, I get the sensation that I have to clear my throat for the first 10-15 mts. I also mainly only cough while eating, and often feel like food/drink is going down wrong tube. I have had a workup for swallow dysfunction and gerd and nothing was found. I am headed back to speech therapy to see if there is anything they can do for me from a PT perspective despite the negative test results. Since being part of this group I can see that others struggle with that feeling of mucus in the throat but mine is limited almost entirely to eating/drinking, so not sure what to make of it. I would not have thought it related to my lungs, but given others experience, hard to say. I am of course worried about aspiration and NTM, as perhaps my eating/drinking issues are how I got infected in the first place, but I can’t seem to get either my ENT or GI doctors interested, but perhaps given my negative test results that is not unexpected. It’s frustrating for sure given the risk of NTM with aspiration.
Replies to "@blm1007blm1007 yes I have an MAI infection in addition to BE. Diagnosed at essentially same time...."
I also have some version of this aspiration issue. I didn’t test as having a swallow issue, but I calmed it down considerably by eating more slowly, and watching my eating while in conversation with others. I used to grab a couple of nuts as I dashed out the door and that could trigger it. Sometimes even saliva. So there is something going on. But again, slowing down made a lot of difference. It happens far less frequently now.
Drs. Colin Swenson and Wendi Drummond have a great episode on aspiration in their NTMTalk podcast, which is terrific across the board. Of course, found out about it right here! So grateful for all you kind folks here.
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The first time mucus came up to my throat after eating it was so dramatic, it was one HUGE glob. I was shocked and said to myself 'What the heck is this?" That was the beginning of it all.
I also have that feeling of mucus in my throat pretty much all day long...that's not how it was in the beginning. For me, chewing a small piece of stick gum does help stop the feeling in the throat of sticky mucus just sitting there, that feeling subsides with chewing the gum many times. Never did I chew gum before, but to get the relief of that feeling it is worth it to me. Hopefully no bad dental problems surface. My last tooth cavity was when I was ten, lucky me.
Yes the ENT and GI probably feel there is nothing they can do more since the tests proved negative. It is all so frustrating for all of us with wanting to find out what the cause is of our symptoms. At least for us, and all of us, who have been told we have BE/MAI, we have learned what to do for ourselves with the help this Mayo blog.
I know you were planning on going hiking and hope you have, or had, an enjoyable and good experience.
Barbara