LPR Update

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Most of my usual blog readers can probably skip this post - it's an update about one of my health conditions that will probably be totally boring to most of you, but many of us who are dealing with this tricky condition have found it helpful to share our experiences. 

This is a follow up post to my initial post about LPR and laryngeal granuloma. If you want the full history, or to read the many comments and updates from other people dealing with LPR, please start there!

[EDIT: there is now a second update here.]

[EDIT: I've just posted a final update on my LPR adventures. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here (or emailing me) - you'll get much better responses and support there! ]

My previous post left off nearly a year ago - how time flies... 

Early 2013

I went and got a second opinion from an ENT I'd pegged as the best in the city. Sadly, even though this doctor had a lot of research under his belt, his patient care skills were horrible, and he had no more interest in figuring out why I was having these issues than anyone else I'd seen. He pushed PPIs on me, just like the original ENT, and didn't want to discuss anything else. He was so rough with me during the testing, and so abrupt and rude with me that I was on the verge of tears most of my initial appointment (during the follow up, I did not allow him to re-examine me).

Sometime in the spring during a moment of desperation, I decided to try the PPIs, but was thwarted after the first dose made me very ill - nauseous, pains in my stomach and intestines, bloating, belching, and had my dinner sit in my stomach all night. My (GP) doctor agreed it was not a normal reaction to them, and that we best leave that be for now. I've continued to muddle along without them. (I continue to suspect I've had low stomach acid for years now, and think that may be why the PPIs made me feel so ill, nuking the little remaining acid.)

Through the spring, I was waking up with more and more acid in my throat, and as my GP and I theorized about why this might be, the topic of rebound effects was mentioned in passing. I decided to experiment, and stopped my nightly Gaviscon (which I'd been taking for many months by then) cold turkey. Wouldn't you know, I had an almost immediate reduction of morning acid. I suppose the ingredient in the Gaviscon that was an acid reducing substance was too much "base" for my stomach, and was telling it "better make more and get things back to normal!" The increase in acid was so gradual it didn't occur to me this was the cause. I have continued to avoid regular use of Gaviscon since then, but use it occasionally if I get a flare up.

Mid 2013

Eventually, I became suspicious about a rebound effect with the Sulcrafate and did a trial without it as well. Wouldn't you know, I experienced another drop in morning acid when I stopped it! I've continued to avoid using it unless I get a severe flare up (occasional use does not seem to cause the rebound effect, same as Gaviscon).

I continued the rest of my lifestyle modifications - not eating/drinking 3 hours before bed, sleeping on an incline (and trying to sleep on my left), no acidic foods/drinks, trying not to slouch... those have all been helping.

At some point I tried drinking alkaline water, as there were some studies about it neutralizing and preventing pepsin damage, but I found that (like the Gaviscon and Sulcrafate) after more long term use, I started getting a rebound effect, and had to discontinue. I may be more prone to rebound effects than most if I do in fact have low stomach acid, so this may not be the case for everyone, of course!

A somewhat random tidbit I came across over the course of the year was how histamine intolerance can cause reflux. Over Christmas 2012 and early 2013, I had the most sudden onset of hives on my back - something I'd never suffered from before. After some sleuthing, my GP suggested it may be histamine related, and wouldn't you know I'd recently started eating tons of sauerkraut and fermented foods to help with my gut health. Apparently sauerkraut is one of the highest histamine foods that exists! After several weeks of these hives, I dropped the diet changes, and within days they went away, never to return. Everyone has a natural limit to how much histamine from foods their body can process, and I guess I found mine.

Later on, I learned that there are also some theories around long term antihistamine use contributing to histamine intolerance - interesting to me, since my severe hayfever in the summers, and milder allergic rhinitis the rest of the year had kept me on some form of antihistamine most of the last couple years. I'd even increased from primarily using Claritin to using extra strength Reactine in the summers because my throat was so itchy (I think the acid was also irritating it and making it more sensitive). So I've managed to wean myself off antihistamines for this coming winter and my doctor would like me to do immunotherapy for my hayfever after the new year so that I don't have to take antihistamines so excessively, and hopefully also to help with my body's general inflammation and sensitivity.

Late 2013

Thanks to a person who found my blog, I discovered a Facebook group for LPR sufferers. It's been very interesting having others to share with! 

I started (on my GP's suggestion) a trial of Melatonin at night - 3 mg at first then 6mg. It has been shown in studies to be one of the only things aside from surgery that can encourage the LES (lower esophageal sphincter) to tighten up. Hard to say if it's been helping significantly, but doesn't seem to be doing any harm, so will keep with it.

As for supplements, aside from the Melatonin, I am still taking slippery elm, and DGL and licorice tea as needed. Also, still using L-Glutamine, Vit B, Vit D, magnesium, fish oil, probiotics, CoQ10 and the digestive support/vitamin blend protein powder stuff I get from the clinic I go to. (In addition, for other chronic conditions, I've been supplementing potassium, iron, DHEA, and occasionally D-Ribose, and have been treated with various antifungal medications. I've been able to avoid taking antibiotics the entire year - knock on wood!)

I haven't had any major voice loss episodes (like where I have to stop speaking for multiple days) in the last several months, but carrying on one-on-one conversations is still very taxing to my throat. Even in a quiet place, constant one-on-one conversation for 2 hours is enough to really irritate my throat/vocal chords. In loud places, much less will do it. But less constant conversation has been easier, and I do feel like my recovery time from overuse has decreased a bit over the last six months or so, which is great!

Lately, I've been having trouble staying on my left when I'm asleep, and with the dry winter air inside, I often wake up on my back, mouthbreathing, dry mouth and throat, and pretty acidy. As soon as I am conscious and start salivating/swallowing again, things improve quickly. If only I could make myself keep my mouth shut and continue to swallow each night! Anyone have any tricks for this??

Improvement has been small and slow, but I feel I've gotten better more than worse over the last six months or so, so I hope that this trend will continue. Things I'd like to do/try in the coming months/year are: 

  • Make another earnest attempt at regular meditation practice, since it's been shown to help repair nerve/neurological issues (if this is indeed partly due to PVVN).
  • More yoga and exercise (if my other chronic issues allow it), for stress reduction and muscle tone.
  • Increase Vit B intake (I've found the B complex can be acidic itself, so it's been a bit hit and miss with how much I can tolerate).
  • Find some zinc carnosine to try, as it's popular in Japan for reflux, and has had good results in studies.
  • Staying better hydrated.
  • Continue to work on improving my digestive system's functioning and stability (a lifelong issue), and getting rid of candida.

I think that's it for now! I will add more if I remember anything else... As always, comments are welcome, please share your story and post any updates you have!

Comments

Amazon.com in the U.S. has quite a few options for zinc carnosine. I hadn't heard of it, but I'll definitely give it a try, too.

And here is a water intake calculator: http://nutrition.about.com/library/blwatercalculator.htm My sister found out she had chronic dehydration, too, and we were both shocked at the amount of water we're supposed to drink, but we both feel much better a month into the program.

To help us out, we use an iPhone app called "Daily Water" - https://itunes.apple.com/us/app/daily-water-water-reminder/id463705111?mt=8 It lets you set alerts for when you should be drinking water and has a helpful log to chart how much you've had. I realized quickly that without it, I fall back into bad habits.

I've got to look some more, it can be tricky to find which sellers will ship to Canada... Thanks for the water app tip, that's fantastic!!! There really is an app for everything these days...

You should also look into the Buteyko method for breathing, it has been known to help with this.. Best of luck!

I also have LPR and I had a granuloma in the left vocal process. I was on prilosec and nexium for about 6 months plus zantac. I also did not speak for about 6 months during that time to allow the granuloma to heal. I also do the diet and lifestyle changes that you mentioned. I have a very, very low fat low acid diet. I eat lots of ripe bananas, instant oatmeal, almond milk, salmon and other fish boiled in water. I am currently off all the medication and as of the last scope, the granuloma is healed and it is not bright red like before. The ENT said it does not look that bad. Through this experience I dropped from an overweight 167 to an underweight 138 and am now keeping between 153-155, which I want to maintain. I can currently speak pretty comfortably although I feel some tightness in my left thraot and jaw which may be TMJ also. I don't have to clear my throat all the time although during and after a meal, I may get some post nasal drip which goes away after awhile. I am just relieved that I can speak pretty comfortably right now. I also take probiotics (Pearls), digestive enzymes with my meals (Absorb Aid Digestive Support), DGL licorice before each meal, I make aloe vera juice from the gel of aloe vera leaves I buy at shoprite, 300 mg of magnesium citrate, 600 mg of calcium citrate, 5000 IU of D3 per day of each. I also just started taking melatonin 3 mg at night before bed and I will increase to 6 mg per night soon. I also take ginger supplements with my digestive enzymes because I read it may quicken digestion.The only thing I can recommend that you might not be doing is I stop eating 5 hours before bed. I don't think 3 hours is enough time to empty your stomach safely. It depends on what you eat and how much, but if you have slow digestion like me, I try to give myself enough time. My last meal is also light and all carb which digests quickly. Also what I do is about 1 hour before bed, I take a tums 1000 and I smash it into powder in one of those pill smashers, then put the powder in warm water and then gargle for about 10 minutes with it. Tums has a PH of 10 which is very alkeline and I feel it deactivates any pepsin or acid that may have creeped up into the back of my throat. Through gargling you also end up swallowing a small amount which is good for your whole upper GI, upper sphincter, esophagus, and lower sphincter. I do this every night. It seems to help with my speaking. Small frequent meals of low fat low acid foods helps alot. Don't stuff yourself. Its the worst thing you could do. I still burp alot but they mostly feel like gas coming up and not acid. I don't get heartburn. All the symptoms are in the throat area. I wanted off the PPi and zantac as soon as possible but they served the purpose of helping the throat area and granuloma heal. One type of PPI made my stomach sore but I tolerated the nexium and prilosec pretty good. Now my focus is on strengthening my digestive system as much as possible to get the food out of my stomach as quickly as possible and resting and protecting my throat area from my stomach.

Thanks for all the tips - sounds like you are on the right track! I've found limiting food in the evenings really helps as well. Early dinner and only a small snack or tea after that, not too late. If I push it, it's noticeable!

It's a real game of patience, the throat tissues seem to be unbelievably slow to heal... But I've been seeing slow progress and lessening of symptoms too, so full steam ahead!

I have LPR and found Dr. Jamie Koufman's recommendations to be effective. From a NY Times article, "To relieve heartburn and reflux symptoms, Dr. Koufman suggests a strict two-week “induction” diet with nothing below pH 5 — no fruit except melons and bananas, no tomatoes or onions but plenty of other vegetables, whole grains, and fish or skinless poultry. High-alkaline foods include bananas (5.6), broccoli (6.2) and oatmeal (7.2)." Link to article is here: http://well.blogs.nytimes.com/2011/11/07/tired-of-feeling-the-burn-low-a...

Indeed, steering clear of acidic foods and citric acid has a huge positive impact on my throat and voice problems. Hopefully one day I can reincorporate, but for now it's worth the avoidance efforts to be able to converse at least a bit!

I recently concluded I likely have LPR (relatively mild) and just came across this article:

http://chriskresser.com/more-evidence-to-support-the-theory-that-gerd-is...

The sixth comment there is from Jaeme Kaye, who says he recovered on The Fast Tract Diet by Dr. Robillard.

" I was diagnosed with LPR, and put on ranitidine & the “kill me now” low-acid/no-fat/high-carb diet. My symptoms got much worse, and overall health got worse. Frustrated, I found the Fast Tract Diet by Dr. Robillard mentioned here on the Kresser website. It is the exact opposite of the Dropping Acid diet, and within just a few days my LPR was reduced by 90%. I was off the ranitidine within a week as well (make sure to step down the use of any acid meds, to avoid rebound – I went from 150mg. to 75mg. then nothing). I am now one month on the FT diet, and still doing well! Almost like flipping a switch. LPR symptoms are almost non-existent (unless I cheat on the diet). The other possibility is gluten-intolerance, since this can also manifest as LPR symptoms (the FT diet eliminates grains & wheat until symptoms are under control, then can try adding things back in to see if you are sensitive)...I too was a singer and do public speaking for my job. My voice was getting so bad from the LPR inflammation that I quit singing and was afraid I would lose my job. After a week of the FT diet, my throat inflammation was reduced enough that I was able to sing a bit while I was driving in the car. I can now speak for several hours without vocal-fold pain or gravelly voice. I am just amazed and thrilled. Best wishes to you!"

So I think I'll be checking out that book. :)

Hi Jenifer - 

I've played around with low carb diets myself (though not so low fat) - the problem for me is that I am really low weight already and have to be careful that I don't just end up losing more weight! That said, I almost exclusively eat white rice as my carb source these days - all the other grains and starches tend to upset my system too much. SCD, Gaps - not even an option, most of what is in them (lots of sweet potatos, squash, egg, etc.) makes me sick!

The tricky thing with acid - I do think part of my original problem was low stomach acid - is that my throat is so damaged and hypersensitive now that I really can't handle eating/drinking/supplementing any acid, as if it contacts my throat (while ingesting or through burping) it triggers horrible coughing fits and also my voice quickly errodes again. Very frustrating...it's a bit of a catch 22.

I'm hoping that with the progress I've been having lately (http://arianek.com/lpr-update-2-finally-healing) eventually my throat will become less sensitive, and maybe incorporating acidic foods or even HCl will become an option. My doctor and I have also been talking about treating for SIBO to see if it helps things as well, since my symptoms are pretty in line with what would be expected with it. Such a fine balance not making things worse and testing out all these theories...

 

ariaenek, thanks for your reply, and glad to hear you are doing better. Still researching a lot, found this at Earth Clinic:
http://www.earthclinic.com/CURES/acid_reflux3.html#sthash.FvK4aTLq.dpuf
Linda from Palestine, TX: "I have LPR (Larngopharyngeal reflux). I drink 4 oz. of Aloe Vera juice each morning on an empty stomach. I am able to eat anything I like, without heartburn or indigestion, which also curbs the LPR created by the acid reflux."

So guess I will try that. Also, I am taking Lugol's iodine and SSKI, which are supposed to be specific for throat issues. Mucus buildup is my main problem, constant clearing of throat etc.
Here's something about how SSKI helps with coughs:
http://www.thehealthyhomeeconomist.com/sski-the-best-cough-expectorant-y...

As usual, one (wo)man's prize is another's poison! I'm avoiding iodine (it's a mast cell degranulation trigger), and aloe (because it has some latex-like proteins). Hope you find something that helps though!

Could you explain what you mean re iodine being "a mast cell degranulation trigger"? Iodine is an essential nutrient, hard to see how one could get and stay healthy sans iodine in the diet.

Hello Ariaenek,
at the moment my throat is burning and all I can do is to concentrate on nothing else than this.
Reading and doing hours on the net ,my anxiety is also pretty bad.
If I can just very quickly start with the fact that I had this issue from Spring 2012 till spring 2013 ,it was as horrible as it is now.
I know I was overweight ,divorced and overeating,red wine and then it all started ,it was horrible half year until I somehow improved my diet and also took omeprazole for 4months with motility drug domperidon.
There is this this interesting observation my diet was better and we moved house and it was very hot summer ,we were always out -lots of vitamin D ,also I started being carefree and happy, did fall in love, became pregnant (no acid reflux,LPR or heartburn at all throughout pregnancy) had healthy baby boy and I was happy.
I must say until he was 1 all was ok then I put 2stone on ,lots of stress because of stepchildren, anxiety started returning and then after (I can only guess) flu and viral infection and sinusitis this LPR came back. 3years of no symptoms. I have baby to look after but I feel tired, angry, miserable, irritated, I feel like doing nothing, my throat is burning, the mucus is there, nose is running and stomach rumbling and some burping. I feel very down but reading your blog was such a pleasure to do so and so many informations, I don't know where to start. I wonder how are you feeling after such a long time of battling this crazy LPR ?
Also what do you think about the suggestion of better diet, lots of sun and outdoors and just being genuinely happy ,do you think it can help or is just in my head. Thank you