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Still researching LPR, some articles say only surgery will cure it, thoughts?

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GERD & Acid Reflux
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Posted 7/14/2011 1:23 AM (GMT 0)
I'm on twice daily PPI and twice daily Zantac 150, plus strict diet, trying to see what sets it off, which is a lot. It's way early for me in the whole process, but some of the articles I am reading are freaking me out.
Posted 7/14/2011 2:00 AM (GMT 0)
Stay away from those articles. They do nothing but worry you.
The main thing to remember is if medicine doesn't help the do the Nissen.
Posted 7/14/2011 9:36 AM (GMT 0)
How long do you give medicine a chance to work, before considering the surgery. I am still having the reflux at night, but have only been on ppi that works for the most part about 6 weeks. Even with Carafate I can tell my upper chest and throat are sore this morning. What does seem to be better is my heartburn and gastritis, but the nightly reflux continues. I see my GI on the 25th, but wanted others thoughts as well.

Thanks,
Sewfun
Posted 7/14/2011 11:29 AM (GMT 0)
Thanks, Joy.  You're right.  I need to start to just relax about this whole thing.  Time will tell.

KatherineG

Posted 7/14/2011 2:20 PM (GMT 0)
Katherine,
You said something about finding out what sets it off. Do you have an inkling that you might have specific triggers?

I'm the pest who keeps on posting about keeping a food journal/log to see if you have specific foods that trigger reflux. A lot of us have sensitivities/intolerances/allergies to foods, often foods that are totally unrelated, that set off the esophagus, stomach, even the colon or heart - as they are all connected. You can easily search my posts using the search box at the top of the page.

I was able to stop my stomach from jumping/refluxing/squeezing by avoiding my list of trigger foods - which all happen to contain sulfite, although others have different intolerances such as MSG. It's hard to figure what gelatin has to do with maple syrup until you start to do searches!
Posted 7/14/2011 2:54 PM (GMT 0)
Hi Alcie,

Well, I'm in the process of trying to see what makes it worse.  I seem to have problems every day, regardless but I'm trying to make a note when certain foods make it worse, for example, almond butter caused me a problem, so I'm avoiding it now.  Apples and bananas seem to be ok.  Plain chicken seems to be ok.  I've just not been eating much though, very small portions and very plain bland food, saltines.  Yogurt bothered me.

I had an endoscope and it showed acid damage but no eosinophils so the Dr. said to just follow the GERD diet and stay on the PPIs for several months.  Did not mention allergy testing at all.  So, I'm just trying to pay attention on my own.

Thanks,

KatherineG

 

Posted 7/14/2011 3:00 PM (GMT 0)
I was on low dose of ppis for about six years then everything went into overdrive. I took high doses of ppis and h2s for three years before the surgery. Those last three were misery.
Posted 7/14/2011 3:10 PM (GMT 0)
I bet they were, Joy! 

I realize I'm probably in for the long haul.  Which is why I came looking for some advice and info.  I like the Dr. I saw but sometimes I think people can help each other in different ways.  All I know from him is what I've posted, 3-9 months minimum on PPIs and GERD diet.  I'm taking 2 protonix and 2 Zantac 150 per day.   

I like the info. I've been able to gather from this forum.  Lots of good ideas, tips and support.

Have a nice day,

KatherineG

Posted 7/14/2011 3:13 PM (GMT 0)
It sounds like you're already on high doses.
Posted 7/14/2011 3:45 PM (GMT 0)
Hi Joy,

It's 20 mg protonix 2x per day and Zantac 150 2 x per day.  The Zantac is sort of supplemental and can be taken or not but I seem to need it.  We tried 1x per day on the protonix and it didn't cut it.

This is why I'm not too thrilled.  I'm also eating very carefully.

I think part of my issue is it went on undiagnosed for several months, so who knows how long it'll take to calm down. 

Thanks for your support.  You are nice to help people out, as I'm assuming your are in pretty good shape reflux wise after your successful Nissen?

KatherineG   

Posted 7/14/2011 3:55 PM (GMT 0)
I consider my surgery was a success. That's why I'm pro-surgery.
Posted 7/15/2011 3:35 AM (GMT 0)
Hey Katherine,

This is what I do and lately I been feeling pretty okay.

I dont take any drugs only natural supplements....

I think you said you tried DGL right? and did you try the enzymes? Did you try probiotics? Mastic Gum?

This is what I am currently taking and it has been a little better not completely superbbb but better.

I eliminated all white flour, ALL of it pastas, white rice, crackers, cookies, dough, pancakes, breads.....

Try going gluten free also...It was hard at the beginning but got better at it....
Try eating brown rice this helps me...
I also eat gluten free bread...
For my spread or sauce? I use hummus gluten free one
I also eliminated all my dairy..... but I eat goat cheese seems to be better for me....

I also seperate my fruits from veggies... I eat my fruits for breakfast...

I also eat almond butter but I know you said it bothers you...

Apples help me also
Try papaya and I juice celery and carrot juice.....


Just suggestions you dont have to follow these but see some of the things I do help you at all... Well keep us posted...

Sorry I am not sure if you said you were also going to see a Naturopathic Dr or not?
Posted 7/15/2011 12:01 PM (GMT 0)
Hi Nickles,

Yes, I am going to go to a Naturopath to see if I can get some good suggestions.  I had a friend with moderate reflux and it helped her eliminate it.  Mine is more severe than hers was but I figure it is still worth checking out.

I have tried the DGL.  It didn't seem to do much either way and I think it was contributing to my gas problems.  However, I plan on giving it another try at some point.  Right now I am taking a probiotic and digestive enzymes, which I do think help my digestion a bit.  They don't seem to help the reflux per se but I figure better digestion over time should help, I hope.

The only dairy I have had recently is a slice of organic part skim mozarella (1 slice) and it seemed to be ok.  Yogurt bothers me.

I also thought about the Gluten free thing but have not committed to it. My friend told me that the naturopath will test for gluten and dairy intolerances so I'm just going to wait.  Mostly because organic saltines seem to help my reflux so I don't want to give them up. That's another thing, I've been trying to eat mostly organic fruits, veggies and crackers. Again, just figured it couldn't hurt.

Apples, bananas, plain chicken, saltines and certain veggies seem ok.  Also, tiny, tiny portions. Apple juice is ok, I've been adding benefiber to it.  I bought some Miralax to try also.

I have reflux everyday no matter what but I can tell when something makes it worse, such as the yogurt and almond butter for examples because I suffer for hours.

I've never tried mastic gum or papaya.  What is mastic gum?

I know you have a strong opinion on PPIs, etc. but I am still on them and probably will be for quite some time, so I want to make sure any supplements I take do not interfere with them.  I would like to wean off eventually.  But, since I am newly diagnosed and it went on for months before it was figured out (LPR), I really need to keep it under control as much as possible for several months so that I can heal and I need to do my best to keep the acid out of my throat and vocal chord area.  Plus, my endoscope showed acid damage.  I still have reflux but it is improved on the PPIs, I can sleep at least, although I have to be elevated.

It's funny, my LPR was misdiagnosed for months as colds, allergies, bronchitis because of all of the coughing, hoarseness, throat clearing and mucus. I might have even had some colds, but the LPR was making them even worse. Now on the PPI, the mucus is basically gone and I think that is why I can actually feel the reflux now.  Looking back, I can remember times after eating when I would have a lot of mucus and can see the connection.  I wish I had found this all out sooner.

Thanks for sharing your ideas, Nickles.  I'll keep in touch with you regarding my Naturopath appt.  It's about 2 weeks away still.

KatherineG

 

Posted 7/15/2011 8:20 PM (GMT 0)
I believe in finding out for each person what their triggers are, if there are any. I don't believe in bland diets or going gluten free or going no dairy just because it worked for someone else. Do your own testing - keeping the food journal and then doing "challenge testing" (with an allergist if you have serious symptoms!!). I don't hold with the fad-of-the-week. I don't care if it's called "organic." It can still be a trigger.

I also don't believe in rushing into surgery, although I needed it after I was in a bad wreck that pushed my stomach into my chest. If you have a completely caput LES or other physical reason - not just a food intolerance - then it may be necessary. I'm not against surgery, just saying it's life changing, so try everything else first.

I can eat tomatoes, but not commercially prepared tomato sauce, because of the additives. I can eat individual spices, but not the mixed ones with preservatives. I can eat home-made bread but not commercial stuff - with caution because I am also becomming wheat sensitive, but not allergic ... yet.

I am lactose intolerant, but can have 1 little container of Activia yogurt of a couple of slices of mild soft cheese, like mozzarella.

All probiotics are not equal. I have taken some that do not work - cheap ones. I get results with Phillips Colon Health, but you have to try the brands yourself. They can help with gas, reduce pain. I need it twice a day, plus the yogurt. Only eat fruit after eating a meal - lessens gas supposedly.

My suggestions are what works for me. Keep up with your own testing. It takes several months to get a good list. You often have to test things twice because of eating two possible triggerss.
Posted 7/16/2011 5:24 AM (GMT 0)
Mastic Gum-Helps to soothe the stomach and heal stomach lining.

Check out this site...I keep in contact with this dr.'s assistants...
http://www.endfatigue.com/tools-support/Eliminating-Chronic-Acid-Reflux-And-Indigestion.html
Posted 7/16/2011 12:26 PM (GMT 0)
Hi Katherine,
My LPR was also mis-diagnosed as cold/flu for a month. I might be a few months ahead of you in healing.

As alicie stated a food log is great! I am on a super strict diet (started 3 weeks ago) and it seems to be helping immensely (in addition to the PPI)

I still have a few issues here and there (which still really suck), but its not as bad as before when the pain was soo intense I couldn’t eat solid foods.
My doctor also had LPR, told me it took him a year to cure it. You basically need to figure out what you can and cannot eat, unfortunately it takes time and a lot of trial and error.

I monitor my progress by measuring my RSI score like every 2 weeks to a month. This way you can see if whatever your doing is making you heal or not.

RSI Score link:

http://www.enttoday.org/details/article/531917/Rating_Laryngopharyngeal_Reflux_Severity_How_Do_

Two_Common_Instruments_Compare.html

I have gone through quite a few older post on this forum, its seems a few people have completely cure there LPR through diet alone, which is great news!
Remember stress and worry make LPR worse, so try to relax! Keep us posted your progress.

-Jesse

Post Edited By Moderator (stkitt) : 7/16/2011 6:38:25 AM (GMT-6)

Posted 7/18/2011 12:39 AM (GMT 0)
Nickles - thanks for the link, I'll look into it.

Alcie - thanks for the info, yes I am keeping track of foods and my reactions to them. I seem to always have some reflux but I've found some foods that are less troublesome than others. I agree with you about the surgery. I'm not trying to get surgery at this point, it's way too early, and I hope I won't ever need it. I just wanted to see what people with LPR have experienced, as I have read more than 1 article that said LPR for many is not curable without surgery. I like getting the feedback from the forum. Everyone's story is a little different and it provides a plethora of different info. I agree with you that everyone has to find what works for them. I think the probiotic I'm on is working (Ultimate Flora), but maybe I'll try Phillips Colon Health next.

Jesse - Thanks for the link, I'll check out that scoring system.
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