LPR Update 2: finally healing?

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Most of you regular readers can skip this post unless you're just curious - it's time for another update on my throat issues. I know there are tons of people out there struggling with LPR (hello!) and they seem to find their way to my blog in numbers that are pretty astonishing, so I wanted to share what's been going on lately. If you want to read further into my experiences with this, the next most recent post was at the end of 2013 and is here, and my first post from the start of 2013 is 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! ]

Before I get started, just a reminder that there is a great resource in the LPR support group on Facebook (feel free to tag me there if you want me to see your comment/post, there's way too much activity to catch it all). If you have questions or comments after reading this, please either post a comment at the bottom of this page, or post in the Facebook support group rather than direct messaging me through various channels. I can't always respond to all the messages, and this allows other people to respond to your post and make suggestions, as well as keeping the discussion in a public place so that others can learn too.

Finally: disclaimer, I'm not a doctor, yada yada, talk to your doctor!

Alrighty, so where were we...six months has flown by!

Early 2014

So, things basically continued fairly unchanged in the earlier part of 2014, up and down but pretty well par for the course. Reflux was still going on, especially at night, voice problems were still fairly bad, but for the most part I wasn't having to stop talking for entire days anymore. I was certainly still having to limit how much talking I was doing to prevent the throat pain and irritation from getting out of hand. Still very frustrating as far as social life goes, not being able to talk for very long or anywhere with much background noise.

In the previous post I mentioned how I'd discovered I had a condition called histamine intolerance - at the time I didn't realize what a big role this was playing for me in my overall health and especially the throat issues. More on that in a bit. Otherwise, I've still been having some dry mouth at night off and on, though it helped a lot having a humidifier running 24/7 over the winter (our house is bizarrely dry for such a humid climate). And as far as all the supplements and vitamins - frankly I don't think any of them were actually helping with this. If any of them were, I think the L-Glutamine and slippery elm were the main ones soothing things a bit.

So, I was muddling along, and one day I was talking to an artist friend online (who also has chronic health problems) about some health stuff, and one of the people following her saw what I'd posted and suggested I look into mast cell issues. Well, that girl was a HUGE help to me (and has subsequently become an online buddy as well, if by some chance you're reading this Kat, thank you!!!), sharing some obscure health knowledge as we folks with idiosyncratic bodies tend to do online. I had never heard of mast cells or their related dysfunctions before, and trust me it's a huge deep dive into a bunch more obscure medical info - I will have to write a separate post about it some day, I have so many posts to catch up on! But basically I learned mast cells are all throughout our bodies, and when triggered, they are what release histamines, ie. what happens during an allergic reaction.

Spring 2014

I did some reading, and was totally floored by how much of what was going on with me seemed to fit with some of the problems that can occur with mast cell dysfunction. Without getting into too much detail, I ended up discussing this with my doctor (and the allergist at his clinic), and we decided that I would do a little trial of taking a medication called Sodium Cromoglycate (aka. cromoglicic acid, or brand names Nalcrom/Gastrocrom/Cromolyn depending on where in the world you are) thinking that at best it might help a bit with some of my digestive issues and other allergies, at worst it's quite benign and will probably do nothing.

Well, both my doctor and I were pretty stunned when after only a few days taking this stuff, my reflux had dropped by probably 50%! Not at all what we were expecting to happen, but now that I've learned a bit more about it, it does make sense that it could happen. I guess the little mast cells in my stomach lining were working overtime and overproducing both histamine and consequently increasing acid, as that's what they do! (Details on histamine and acid production here - this stuff is complex science that I'm doing my best to learn, but forgive me if I'm making some little errors!)

I will get into this more when I write about mast cells and histamine intolerance in more detail, but you know how H2 blockers are a slightly less potent alternative to PPIs? Well, H2 blockers are actually histamine blockers, just like the antihistamines you take for hayfever or allergy to cats (known as H1 blocker). H1 and H2 blockers both block the histamine receptors from actually grabbing the histamine that the mast cells are producing - the H1 works mainly in your respiratory system, eyes, and nose, whereas the H2 works mainly in your stomach and digestive system. But the sodium cromoglycate works differently from an antihistamine - it is known as a "mast cell stabilizer" and instead of blocking the histamine receptors from grabbing the histamine (instead leaving it floating around in your body), it actually stabilizes the mast cells so they don't produce as much histamine in the first place.

The sodium cromoglycate hasn't had a massive effect on my other issues yet, though I hope with more time or possibly a higher dosage it could - it can take many months to reach full effect, and I am on about half the possible dosage. Thing is, you have to take this stuff religiously (I take it 4 times a day)...and unfortunately, it is also very expensive. I'm lucky that where I live, more expensive medications are subsidized by the government. Otherwise, even with extended health coverage, I would have been paying through the nose for it to the point where it might have been cost prohibitive to take.

I've been on it for about 3 months now (and am back on my Reactine aka. Cetirizine/Zyrtec for summer hayfever), and my reflux has improved about 60% at this point. Not completely gone by any means, but I am not waking up coughing at night anymore, my morning acidiness is only about half as bad, and by far the best improvement is that my voice has slowly been improving! My throat was very damaged between the lengthy respiratory infection and its after effects, and the reflux, so I know I have to be patient and give it a lot more time.

I still can't sustain conversation as long as I'd like to, or with much background noise, but I can now easily do day-to-day talking and some longer conversations. And my throat is also recovering much more quickly when I do tire it out (we're talking a day or two instead of a week or two). I'm hoping with more time it'll continue to heal, but even if it doesn't this is already a huge improvement over where I was a year ago!

I've been able to add the Gaviscon back in at night (I wait for my nighttime dose of sodium cromoglycate to kick in before taking it), and don't get any rebound from it anymore - it really helps with the nighttime reflux as a combination. And I've continued to sleep on an incline, though not always on my left anymore! Also, I've had to continue to avoid acidic foods (EDIT: and I mean a pH that is acidic on contact, not as in "alkaline diet" interpretation of acid, there's a big difference) and citric acid pretty seriously so far - it's one of the worst triggers of those nasty coughing fits thanks to the laryngeal hypersensitivity. 

Conclusions

Discovering that a big reason I started having the reflux seems to be overactive mast cells points a big finger at possible root causes, namely the hoards of antibiotics I took for respiratory infections in 2008/2009. My suspicion right now is that they really messed up my already wonky digestive system, and made the mast cells in my gut act up and/or shifted the balance of bacteria (which help to mediate histamine levels - they can even produce histamine if certain types overgrow), or possibly they messed up my DAO production (diamine oxidase is the enzyme that breaks down histamine). In any case, it resulted in excess histamine and acid being produced and lowered ability to process histamine, giving me reflux and wrecking those delicate larynx tissues. In any case, I am so glad I refused to get on PPIs, who knows how much more they would have screwed up my body. I'm not saying this choice is for everyone, but I knew it wasn't right for me (and my body told me so when I very briefly tried to take them, they made me so sick!)

The bad news is, I don't think this unexpected discovery of histamine and mast cell issues as part of the root cause is going to be the magic bullet for most people experiencing LPR. But if yours started after a major upset to your digestive microbiome (as can happen when taking long term/broad spectrum antibiotics), or you have other symptoms of histamine intolerance, it could be worth reading up on and talking to your doctor about. Be warned, histamine intolerance isn't well known, and is only well accepted in certain countries (especially Europe, notably Spain, the UK, and among integrative doctors in North America). My dietician was also familiar with it, so if you can find one who's pretty progressive and up to date on food intolerances, they might also be helpful.

And a final side note - I mentioned at the end of my last update on this that I was going to try zinc carnosine, a popular reflux remedy in Japan. Well, I did, and the next morning I was so sick! I was confused until I did a little digging into what zinc carnosine actually is - turns out its other name is "beta-alanyl-L-histidine". Carnosine is made up of two amino acids, beta-alanine and histidine. Histidine! Gosh, I wish they just called it that on the label - a good reminder to always do your research first... Histidine, once in your body, can easily be converted to...you guessed it, histamine! This might be helpful if your reflux is not related to histamine levels, but if it is, it just seems to make things worse!

Ok, I think that's it for today! Best to everyone who's dealing with this, I know it's not easy, but don't give up.

Further reading

Here are some starter references you can do some further reading on until I get the post about histamine and mast cells written up:

Comments

Thanks for the info on zinc carnosine. Sounds like it's worth trying.

Vitamin C and quercetin are natural antihistamines. And there are foods that naturally contain antihistamine action.
http://www.livestrong.com/article/134112-foods-that-act-as-antihistamine/

The advice here is for GERD, but could be applied just as well to LPR, I think. It's in opposition to most of the conventional wisdom on reflux:
http://www.homeopathicmd.com/2011/05/gastroesophageal-reflux-disease/

I would love to know the name of the functional medicine GP that you found in Vancouver. I have LPR and am struggling to deal with it without the PPIs.

Hi Yaari - I don't give out my doctor's name, but the clinic is called Connect Health. They have several integrative/functional doctors and naturopaths there. But I don't think you would get much different advice at most naturopaths - the natural treatments for reflux are pretty similar from most of what I've seen recommended online.

And unfortunately, long term I haven't actually had any improvement!

hmm I'm disappointed to hear that you have not had any improvement. The only thing that seems to help me is the PPIs but I'm not keen on staying on them for the rest of my life.

Yeah, only the Nalcrom/Cromolyn helped somewhat, but it hasn't had a lasting improvement as far as my voice, throat, etc. go... It just kind of takes the edge off without the nastiness of the PPIs. But I'll see what else happens when I get a GI consult later this year. Who knows...

Interesting about the Cromolyn. I discovered it years ago as the best alternative to anti-histamines - for seasonal allergies - the nasal spray and eye drops are amazing. I bet the histamine link is part of my reflux issue too. hmmm.

One more question - how do you create the incline of your bed? So far I've just stuffed an extra duvet between the box spring and mattress, which raises up the mattress at the headboard about 6 inches. It is so uncomfortable I can't sleep. Do you prop your bed up on books, or what?

Totally it's worked better for my terrible hayfever than anything, the antihistamines had essentially stopped doing anything! I was really surprised it helped the reflux, that wasn't even why I started it. ;)

Yeah, I have a foam wedge I bought online - our bed frame is way too heavy to prop up, so it does the trick. Google things like "medical foam wedge" or "foam reflux bed wedge", and you'll find some options. Mine is quite long so that it ends around my knees, so really most of my body is on the incline. Works decently and more comfortable than pillows or shorter wedges.

Never ending questions, sorry. Do you take the Sodium Cromoglycate orally for the reflux? is it a prescription? Or do you just buy over the counter nasalcrom nose spray and opticrom eye drops?

It's ok, I don't mind sharing my learnings. ;)

I actually have all three! I use the oral regularly - 300mg at bedtime year round, and up to 200mg 3 more times a day (morning, lunch, dinner) when my hayfever gets bad. And then if I still have additional nasal symptoms or itchy palate, or itchy eyes, I use the over the counter spray/drops. 

This stuff is like a miracle, wish I'd known about it earlier!

I also have LPR and a few years ago was dealing with a granuloma which eventually went away, with alot of effort and nexium, which I went off as soon as possible. When I feel like I am having throat and vocal symptoms again, I take 2 tums and smash them into powder. I then fill a half a glass of warm water and put the powder in it and stir. I then put a portion in my mouth and gargle with it so it is in the back of my throat. I then spit it out and then take another swig and continue until its finished. During the course of gargling a small amount is swallowed so it can coat my throat, esophogus and my stomach. I do this each night before I go to bed maybe about 30 minutes before I brush my teeth. Tums has a PH of 10 which is very alkaline. It seems to help deactivate any pepsin in my throat area that has gotten into my throat through acid reflux or burping. Dr. Koufmann feels that its the pepsin that is actually doing the damage, the little lobsters that attach to the throat when you reflux and activate when you eat anything remotely acidic. I do this every night whenever I start to feel any symptoms and it really helps with your speaking voice. It really washes the acid or pepsin out of the throat area. Then when you are sleeping it gives your throat a chance to heal if the acid and pepsin are washed away. Best of luck.