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Replies to "I also have MAI. Diagnosed in August of 2022. I am curious due to your stating..."
Do you possibly have GERD? This is silent acid reflux. This means you have acid travelling up your esophagus, but you can't necessarily feel or taste it. In some cases, it's because your pyloric valve is not closing fully to seal off stomach acid from backing up into the esophagus.
Untreated, GERD feels often as if you have to keep swallowing, like something is in the throat, you have to clear your throat, and the throat can even feel full or too small. Because of the proximity of lungs and esophagus, my Ear, Nose and Throat doctor told me that it's not uncommon for spray from acid reflux to get into the lungs. Now, couldn't MAC can get a foothold in the lungs, if that is a case? I am not a doctor, but I strongly suspect some folks with MAI/MAC may be getting their illness from silent acid reflux or GERD. It will be tough to get a doctor to say this is "for sure," however. You can have GERD for years and not know it. Certain foods and stress are two of the sources of GERD. For example, alcohol and caffeine bother some, milk products such as cheese and ice cream others, and still others have trouble with greasy foods (like pepperoni pizza), or acidic foods such as tomatoes or pineapple. Even chocolate can affect those with acid reflux. Apples bother me. The list goes on. Yes, the bacteria live in water and earth, but what is close to our lungs (our esophagus, food, etc.) is also a possible source--at least no doctor disagreed with me when I raised that point. My ID doctor said, "That's a very interesting point." I took this to mean he didn't want to get involved in any previous missed diagnosis since my regular doctor never figured out I had GERD: it was a nurse practitioner who did. I kept coughing, being short of breath, and it always was worse when my job was hectic. Just something to think about. Here is the timeline: GERD finally diagnosed; MAI diagnosed; anti-biotics prescribed; break from antibiotics; amikacin prescribed. By the way, I also had pneumonia often. There's a connection to GERD, I believe.
I know this is long-winded, but I am afraid if you have untreated GERD, your MAI will worsen. Getting the GERD treated will help you. I may be wrong, but I wanted to add some information.
Best regards,
Mokie
I've been following the exchanges on which nebulizer would be preferred, which, of course, gets to be quite confusing. I've been using my old Omron Micro Air portable (hand held) nebulizer for years for Ipratropuim Bromide, and more recently, for 7% saline. It seems to be working just fine for these - makes a fine mist. Is there something I might be missing, something I might not be noticing?