1. < MAC & Bronchiectasis

Best nebulizer for MAI

Posted by wabashacabin @wabashacabin, Jun 7 9:37am

Diagnosed 2.5 years ago with MAI. Totally asymptomatic and watching and waiting. I see Dr Miller at USF in Tampa.
I have a Medline neb machine and use the LC Sprint cup and tubing. I would like a more efficient been machine, quieter if possible. Can you help me???

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blm1007blm1007 | @blm1007blm1007 | Jun 10 8:44am
In reply to @happyhealthyme "I've been following the exchanges on which nebulizer would be preferred, which, of course, gets to..." + (show)
@happyhealthyme

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?

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RE: "Is there something I might be missing, something I might not be noticing?"
I wish I had an answer for you but I am so new to all this I wouldn't know if you are missing something. Sorry.
I am reading and learning and hoping I don't have to start anti-biotics with the amount of MAI they are finding in my sputum, and as well, I do feel well overall..... for now.

REPLY
mokie | @mokie | Jun 11 11:18am
In reply to @blm1007blm1007 "I also have MAI. Diagnosed in August of 2022. I am curious due to your stating..." + (show)
@blm1007blm1007

I also have MAI. Diagnosed in August of 2022. I am curious due to your stating you are asympotomatic with MAI. For me I lost about 30 lbs before I was diagnosed. So for me at this time it is the weight loss with the need to regain weight and what follows are the only symptoms I have. Symptom: A feeling, such as a feeling of a lump of some substance, at the back of my throat.....that constantly comes up to my throat and causes me to want to clear it out every minute of the day. That is how it is for me. It is worse after I eat anything.
Is that how it is for you, the need to constantly clear the throat????

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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

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Jun 11 1:55pm
In reply to @mokie "Do you possibly have GERD? This is silent acid reflux. This means you have acid travelling..." + (show)
@mokie

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

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TO Mokie Needing to clear my throat started nearly 10 years ago and got worse each year. Diagnosed with BE in August of 2022. Yes I have a Hiatal Hernia that was found in Oct. 2022 at NJH. Yes, silent reflux. Yes and thank you....I stay away from all those things, foods etc. that would irritate and make the acid reflux worse and sleep elevated.
Pneumonia.....I had two very bad pneumonias at the same time in the mid 80's. Legionella and Mycoplasma (I am lucky to be alive at 81 and 8 months) and possibly walking pneumonia in the mid 60's. Yes at National Jewish in Denver it is my understanding that they do believe acid reflux is often involved with Bronchiectasis. My philosophy is "Most things happen due to more than one reason." I believe it to be true with BE. Thanks for your great reply. Barbara

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