LPR, (Silent Reflux) Hiatal Hernia, BE, MAC Infection
Anyone out there with all l have listed to deal with?
I have not been diagnosed with LPR or specifically Acid Reflux (tested for this, no findings) but now truly believe I do have the symptoms of LPR/Silent Reflux.
The LPR possible symptoms are worse at night. Burning sensation in the mouth/tongue.
Has anyone been diagnosed with LPR/Hiatal Hernia along with BE and MAC?
If so, how much clearing of phlegm/mucus are you having to do during the day ....and .....upon those wake up times between the short hours of sleep.... from one wake up period to another.....and once one is able to fall back to sleep.
I wake up to walk down the hall to do as my bladder has asked me to do and then I have to clear my trachea/throat/or esophagus of what is annoying me and keeping me from easily going back to sleep.
Any similar stories?
Barbara
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@sylvermoon8 I looked Reflux raft up. Thanks for mentioning it.
So often they test and say nothing found....but we know something is wrong.
It just could be the wrong test and hope they do have a true test for what bothers us.
Did the dry mouth show up before the Reflux raft or after???
My experience: I use to get dry mouth, I would wake up with dry mouth because I was breathing through my mouth at night when sleeping. I didn't know that until it was brought to my attention. I now tape my mouth, yes, tape it closed at night with 3M NeXcare tape. I use a small piece of the tape that reaches above my upper lip to below my bottom lip. It solved my dry mouth.
Barbara
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1 ReactionI found Reflux Raft helped my reflux
https://refluxraft.com/
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2 Reactions@blm1007blm1007
Gaviscon uses seaweed to mitigate the effects of GERD. It works well. However, if you are ever on other antibiotics, they may need spacing in time from the Gaviscon as it can lessen their effects. Gaviscon can be quite effective with GERD, so don't be afraid of it.
Mokie
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1 Reaction@sylvermoon8 Thank you very much. I do have that pillow. Thank you so much for sharing.
@blm1007blm1007 My prior pulmonologist advised strongly against feather pillows as they can give rise to a certain type of pneumonia. I had to get rid of my down comforters and down jackets after that. Never had feathers pillows.
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1 Reaction@lilianna
I sleep on my left side; the body pillow keeps me in place. In the MedCline system there is a hole for your (left) arm to go through, which should make using the wedge more comfortable. With GERD you should sleep on your left side. Yes, I do slide down as well sometimes by morning. But all in all, the system I think is an excellent prescription for dealing with GERD. You have to get used to it, though, and there are some (but very few) nights I do not use it. The result of using the system has shown up favorably in my endoscopies. Thanks for your note.
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2 Reactions@blm1007blm1007
Hi: Barrett's would be diagnosed by endoscopy and your gastroenterologist, so if you are concerned and haven't had a scoping, you probably should. I have no symptoms -- it's called "silent GERD." I discovered MedCline about 10 years ago; it's a company here in San Diego. I use the company's reflux system, which has been very effective for me. In fact I am on my second set of wedge and body pillows. Yes, the system is somewhat expensive but very sturdy and long-lasting. The benefits of using the system have shown up in my endoscopies through the years. (I also take a low-dose PPI.) I will say it takes time to get used to the system. MedCline itself recommends a 30-day break-in period. MedCline is happy to speak with customers, so don't hesitate to call them. Thanks for your note.
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2 Reactions@paxmundi Yes some people rid themselves of the feather pillows after hearing the same thing from their pulmonologists. Meaning other BE/MAC patients posted on one of the Mayo BE threads exactly what you said.
I have been sleeping on them for over 30 years. I believe I have had BE for at least eight years ......meaning five years before being diagnosed with BE/MAI in 2022/2023.
So far, not yet, I have not had a cold and can't remember when the last time it was that I had a cold. No pneumonia since the Legionella with Mycoplasma pneumonias in 1987.
Yes to Covid for a short 48 hours before feeling just fine after taking a short stint of Paxlovid. I had Covid thanks to Mercy Rehab facility that lead me to believe I didn't need to wear a mask with only four people in the room(s). Up to that point I had been wearing a mask in public and of course should have continued my practice of wearing the mask during those three visits to the rehab facility. My fault for my allowing medical people (Lung rehab respiratory therapist) to sway me into thinking "No need to wear the mask." That was February of 2024 when I had Covid.
Thank you for sharing what you heard, it is important to hear and keep it in mind.
Barbara
@andiesposito When I was not getting anywhere with my PCP after telling him something was wrong a good few times I searched, read, searched and did come believe I had 'water brash'/silent reflux. However, nothing was found at NJH in 2023 when they did the endoscopy, the Esophageal pH Monitoring, Bravo Capsule Test etc. etc. I had it all since they tend ti believe acid reflux plays a role in developing BE.
Who knows....do I or don't I. What I do know is that I have a burning tongue after finding myself having slid down the wedge and on my back at night. So, for me I believe it is LPR and will do all we know for it to hopefully control it....but not ready for PPI's just yet.
However,
1. What do you mean by a low dose and do you take it at night before bed?
2. What medication in particular do you take for it?
3. How long have you been taking it?
Thanks for your response.
Barbara
@helenkiwi62 I just read up on Reflux Raft as I thought this would be a good alternative to PPIs. However, one of the ingredients is a form of licorice ingredient. The last couple of times that I have had licorice, and that includes anise cookies, I reacted to the licorice. I get leg cramps. I used to be able to eat licorice with no issues whatsoever, but the last two times I have had licorice in any form, I have developed leg cramps. I know that licorice can cause this. After the first time I had a cramping problem, I tried to think of what it was that I may have ingested or done to cause those cramps. I remembered I had eaten licorice candy. When I read up on licorice, this is one of the things that can develop, cramping. So I guess that, unfortunately, I would be unable to use Reflux Raft. Has anyone had issues using Reflux Raft? If it’s not one thing it’s another! You think you have found a good alternative and then poof, no you haven’t