Dry eyes, laryngopharyngeal reflux, pepsin

I've not been around much as I developed a big problem with my eyes, and had an ongoing problem with my throat.

I'm cutting to the chase as it has taken me ages to piece things together and finally (have had my eyes tested etc, done a lot of trial and error for relief of both probs).

So I have found I have a condition called LPR also known as silent reflux.
I've also just found out that there is a connection with the dry eyes/sinus/tonsils problems.
Here is one paper:

A new therapeutic approach for the Dry Eye Syndrome in patients with laryngopharyngeal reflux: first data - PMC (nih.gov)

there are several others,
eg

A combined treatment for patients with dry eye and associated laryngopharyngeal reflux: a real-life approach - PMC (nih.gov)
also videos re LPR (not to be confused with GERD or basic heartburn).
and the role of pepsin as opposed to stomach acid.

anyway
I'm posting this just in case it helps anyone else.

 

Found this guy who seems to know what he's talking about and does his research.
LPR Treatment: the Supreme Therapy Guide – Refluxgate

this paper is also informative
Reflux Revisited: Advancing the Role of Pepsin

Reflux Revisited: Advancing the Role of Pepsin - PMC (nih.gov)

this is also interesting

Reflux Revisited: Advancing the Role of Pepsin - PMC (nih.gov)

 

Thanks @Sly Saint.
I have swollen eyes blurred vision and sinus infections since LC maybe this could be a contributor in some way.

 

Just in case anyone is further interested in this problem (ie LPR and other issues caused by it) I found this video of an ENT specialist (US) who is very good in explaining all the pros and cons of various treatments on offer. Surprisingly this seems to be an area where the US are playing catch-up. Apparently in Europe the use of alginates is far more common and they are only just coming on the market in the US.
Refreshing tho to hear her say that yes stress might play a role but we all get stressed and it's important to check that nothing else is going on; as she says when you get these nasty symptoms of course you're going to feel anxious, but the stress comes as a result and is not necessarily the cause.

Code:

https://www.youtube.com/watch?v=zV0a4AYTxTU&t=315s

 

Thanks @Sly Saint, sounds interesting, I can’t open the link though?

 

I think I may have this condition. How are you treating it?

 

it's not a link; you need to cut and paste it.

hah well that's an ongoing story.
I have been reading loads. I eventually managed to speak to an NHS doctor who also thinks it might be LPR (referred to as silent reflux on NHS) and wanted to put me on PPI's. Suggest anyone does their research on these; can be nasty to come off and play havoc with your digestion/microbiome.
Plus there is a lot of both research evidence and patient evidence that they do not work for LPR.
Dr wasn't happy when I told her that.
I've started with diet/lifestyle modifications which is pretty restrictive(I'm a vegetarian and already have a restricted diet because of kidney stones) and tricky with ME as I have to not lie down.
I'm also going to pay for a pepsin test (not available on NHS).

 

I use a product called Frutin gastro gel for reflux, I can’t tolerate PPIs.

I thought I had asthma for about a year bc reflux was silent to start and made my chest feel v tight. Took lots of steroid inhalers and was really freaked out by it, but once I got the reflux under control (lots of Frutin, no coffee on empty stomach, no spicy foods or v fatty foods, limited desserts and chocolate), tight chest went away.

I also have dry eyes at night.

 

I can understand pepsin causing irritated eyes but why dry eyes I wonder.

 

That's interesting as they don't contain alginate, so they just form a barrier in the stomach. As far as I can find out so far alginates actually inhibit pepsin activity as well as forming the barrier.

I tried the uk version of Gaviscon (main ingredient sodium alginate) for a few nights but it gave me very dry mouth (possibly due to the calcium carbonate in it) so I stopped using it.

 

A very good source of info:

Dr. Jamie Koufman - LPR, Acid Reflux, Chronic Cough & GERD Specialist

 

Alginates: From the ocean to gastroesophageal reflux disease treatment (turkjgastroenterol.org)

 

I got my results back from the pepsin test; both positive. So at least I know now and have an indication of how bad it is.
So will read the info provided with the results and try and follow what they advise. They also have provided me with a letter for my GP which also includes research paper references; useful particularly where prescription of PPIs is concerned.

 

I have a very long history of LPR and live in New York. So I have seen three of the top experts on LPR - the ENT Jamie Koufman, the ENT Jonathan Aviv, and the gastroenterologist Philip Katz. They all attribute the rise in the incidence of esophageal cancer to LPR.

The mainstay of their treatment approaches is lifestyle modification. All of them recommend raising the head of one’s bed by at least 3 inches, if not more, so that you sleep at an angle, allowing gravity to reduce the severity of nighttime episodes of silent reflux.

But aside from that, the lifestyle changes are fairly extreme. For example, Koufman recommends that patients drink nothing but highly alkaline bottled water, eat only alkaline foods, remain upright for 4 hours after eating, and consume no food after 7:30PM because, in her view, the digestive system “slows down” at night. In other words, enormous self-discipline, and the ability to spend most of the day upright, is necessary. If that fails, she regularly refers patients to surgeons for Nissan fundoplication or other newer, unproven surgeries.

Aviv has a similar treatment approach but one that is a bit easier to implement - remain upright for 3 hours after eating, avoid all late night snacking, consume acidic foods that are high in antioxidants (e.g. blueberries) mixed with alkaline foods so the overall pH is not acidic.

In my case, Koufman recommended fundoplication. Aviv was against it, saying it often turns people with autonomic issues into “swallowing cripples” who can’t get food down from their mouths into their stomachs. I went to Phil Katz for a third opinion. He ran a number of tests and said I wasn’t actually refluxing food or liquid at night. He said the mechanism that causes pepsin to move into the upper airways is not really understood, and suggested that it may be aerosolized. He was against surgery in my case and basically said there’s a lot more speculation than hard science into the causes of LPR.

My personal view is that virtually everyone with ME/CFS has some degree of dysautonomia as a result of small fiber neuropathy and/or vagus nerve dysfunction, slowing down peristalsis and in some cases resulting in gastroparesis. There are tests that check for this type of dysfunction - gastric emptying studies, a newer test called the Smart Pill, even upper endoscopy, which sometimes finds food in the stomach 12+ hours after eating. Unfortunately, the few medications that treat gastroparesis either have serious neurological side effects or are antibiotics like erythromycin that affect the microbiome, have potential cardiac side effects, and are not recommended for long-term use. Again, this leaves lifestyle changes as the mainstay of treatment. Of course, one lifestyle approach that none of these experts recommend but that isn’t terribly hard to implement is to eat small meals more frequently instead of large meals less frequently.

 

more info this time on effect on ears (which I also have),
Acid Reflux & Ears (GERD & LPR): Concern of Damage? - drewisdope

 

see this thread
https://www.s4me.info/threads/using...ed-to-higher-migraine-risk-study-warns.38258/

 

Sjogrens?

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.

 

I have dry eyes, not from Sjogren's or LPR, but from year-round allergies. Genteal Severe Eye Gel is an over-the-counter product that works great for me. It's one my eye doctor told me about.