Dehydration-like feeling next day after exertion?

I've noticed I only get dry mouth which lasts all day and all night if my immune system is activated and I don't mean because of a cold.

My immune system used to activate every 2 weeks for about 3 weeks at a time. Whilst this 3 week period ensued my mouth would be incredibly dry and I'd feel rubbish. When it stopped I had a lot more energy and felt better.

If I take beta glucans and there's something to be gotten rid of in my body then the dry mouth will ensue again. Once the viruses and I assume bacteria have been cleared using the glucans this all calms down and the dry mouth stops completely. It then stays that way for quite some time. To be honest I've only had my dry mouth come back after a vaccine or one or two days of a bad cold or virus.

The dry mouth symptom which plagued me for years has essentially resolved.

For example I just took some ghanian quinine and lomatium dissectum tincture and dry mouth comes back. I'm confident this isn't because of the alcohol.

So I've come to the conclusion that ME patients when there mouth is dry must be suffering from a weak immune system activation that doesn't clear any viruses or bacteria but attempts? To stop the person getting worse. Which might be why we can remain at a certain level for awhile before deteriorating...but who really knows!

All I know is I've had a dry mouth twice in the last 6 months and both times were due to vaccines or infections after vaccines where beta glucans were taken to ramp up the immune response. So I'm convinced it's all related to the bodies attempt to clear something....unsuccessfully.
 
Forgot to add. When I'm in this state it doesn't matter how much water I drink. It makes no difference. Until the immune activation passes. 6 months ago it wouldn't pass and I'd spend 2 or 3 weeks with a dry mouth and this caused dental and mouth wound healing issues.
 
Hi @Dom, thanks for sharing your experiences. I don't doubt your description of your symptoms, but I wonder how you know that they are caused by immune activation, and why beta glucans are used for this. Can you point to some research evidence to support this use. I did a quick Google search and couldn't find anything that seemed relevant.
 
I have a slightly different view but let me be clear this is about my own experience, and a few others I know, and I don't think it can easily be generalized. This is because we lack quality evidence of what is going on, its far too anecdotal for us to be sure.

I have a sore dtry throat all day, every day, though there are periods where it goes a way for a few hours to a few days. Several years ago I had a gastroscopy and they found nothing. This is normal, its not a blatant structural problem.

On the OI side I have neurally mediated hypotension. The dry throat often gets worse in a crash, but not consistently. I also have salicylate sensitivity, which can impair mucus membranes. However I have almost beaten my salicylate sensitivity now. Was it the things I did, or was this going to happen anyway?

On OI I think the evidence is now trending to showing nearly all ME patients have it, including one variety that does not show up on a tilt table test.

Drinking water does not resolve the dry throat, no matter how much I drink. It can make swallowing very difficult, as food can easily get stuck in my throat. I wonder if this has something to do with an impairment of throat mucus production? In any case I prefer to eat food that is either wet or greasy. I also drink water when I eat, always. However, I have issues with eating my gluten free bread, unless I toast it, which makes it even drier. For some reason toasting makes it easier to swallow. Is it because untoasted it absorbs more throat mucus? I don't know.

Medicine is hung up on structural lesions, but I personally think we should also be thinking biochemical lesions. Changes in biochemistry alter physical function of a tissue. That will not usually show up on X-rays or other scans. Medicine has barely touched this concept.
 
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@Trish I guess there's a possibility it's pathogenic (pathogen causes the symptoms) and there's also a possibility based on studies that it could be microbiome adjustment (more natural anti biotics are produced in the gut making the host feel unwell).

Here's what I found earlier re antimicrobial and therefore possibly microbiome (theory being if more beneficial bacteria exist which beta glucan is meant to provide then someone might feel much worse for a few weeks until that adjustment phase passes):

https://www.nature.com/articles/mi201786

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8230556/

https://academic.oup.com/femspd/article/27/2/111/506882

https://www.researchgate.net/public..._AND_ITS_USE_AS_PREBIOTIC_IN_ACIDOPHILUS_MILK

Immune modulating:

https://www.frontiersin.org/articles/10.3389/fimmu.2020.00658/full?report=reader

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC2721983/

Feeds monocytes and neutrophils, activates t cells:

https://www.researchgate.net/public...t_of_PGG-beta-glucan_on_neutrophil_chemotaxis

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3202617/#:~:text=In particular, binding of β,cells under in vivo conditions.

Unable to find all references from my original reading but these are the ones I was able to track down.

Speaking purely anecdotally b glucan is probably one of the only things left I can tolerate that (based on the above) has an immune action which...does not activate glandular fever or other viruses in such a way as to basically make me much worse. Which many other things that I've tried 100% do. (Should point out when I first took beta glucan my symptoms became much worse anyway. But then started to improve after 3 weeks. I've waxed and waned with every single vaccine this year (much to my annoyance)) and generally each time I've waned I feel worse for several weeks before improving. I had microbial/bacterial infection symptoms uti/stomach upset/drained of energy - with each waning 10 days after vaccination. I've no idea what causes it. Really wish to god I knew.

I'm unaware of any studies that bring everything above together as an in Vivo human study or something relevant to ME patients.
 
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This is something very new to me. Since I had the covid vaccines I now go through periods of time where I feel very dehydrated but I know that I'm not because I drink fluids throughout the day. I don't feel thirsty and my mouth isn't dry.
 
@Dom

I posted something here regarding viruses and what Ron Davis (OMF) found in pwME.

I feel 'viral' a lot. I've had RNA/PCR testing when I felt this way and nothing comes up.

I will say though that every 3 years or so, I do get a reactivation of a virus (EBV or HHV6 possibley) that can last for many months. It feels quite different.
 
Mij said:
Xerostomia, dry eyes and dry skin can be symptoms of autonomic dysfunction. When I'm in PEM, the dehydration/dry mouth can't be replenished with fluid.
Click to expand...
I don't really have a dry mouth but feeling incredibly thirsty for no reason is an early sign of PEM for me. And yes, it doesn't matter how much I drink, the thirst just stays, it is unquenchable for quite a while.
 
@Mij interesting. Thanks for the link. There's certainly lots of things it could mimic.

Personally though based on several other experiments I've done my dry mouth only seems to come on with anything that's immune modulating or it happens a few days into a cold or the third instance is it comes on totally out of the blue and not even due to PEM. I'd just get it constantly with say a week off every month. I'm really glad it's not that bad anymore it was causing me all sorts of dental issues.
 
Dry eyes is a very common symptom associated with getting older lso I reckon it’s difficult for any of us 50 plus to definitely attribute it to ME.

other than that I definitely get much more thirsty during PEM, not surprisingly needing to go to the loo a lot more too, sometimes quite soon after previous visit.

I only get dry mouth when I wake up and think I probably snore or at least have my mouth open when sleeping
 
Is it possibly a matter of degree?

If I don't use any eye drops within a 24 hr period I will wake with my eyes glued shut.

Is this also true for dry eyes due to screen time or getting older? (It's a real question)

Interestingly this started years ago with tearing -- my eyes would water when going outside (back when I still could do that). Then it became dry eyes maybe a year after that.
 
I use both. But I'm rather flaky about which I use when. Especially at night I just grab for a bottle and whichever one I grab is what I use. But I use them multiple times a day and every time I do I have a collection of grit lining my eyes.

ETA: the gel I use is still in a drops bottle it is more viscous but still you can squeeze it out of the bottle.
 
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