Meadow: Reducing Orthostatic Intolerance with Oral Rehydration in Patients with ME/CFS

shannah

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Sugar usually causes problems for those with ME and severe yeast issues. I would think the sugar in this would do the same, wouldn't it?
 

Sasha

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Sugar usually causes problems for those with ME and severe yeast issues. I would think the sugar in this would do the same, wouldn't it?

I don't know. I don't know if it's going straight into the bloodstream from the gut. In his grant statement, Dr Medow makes a reference to "co-transport" of glucose and sodium, and I wonder if that's something to do with getting into cells by piggybacking one molecule on another (or am I talking rubbish, @Simon?).
 

Sasha

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Come to think of it, I had some bloating when I drank my 0.4 litres, so I guess it's not going straight into the bloodstream. :(
 

Scarecrow

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In his grant statement, Dr Medow makes a reference to "co-transport" of glucose and sodium,
https://en.wikipedia.org/wiki/Oral_rehydration_therapy
The co-transport of glucose into epithelial cells via the SGLT1 protein requires sodium. Two sodium ions and one molecule of glucose (or galactose) are transported together across the cell membrane via the SGLT1 protein. Without glucose, intestinal sodium is not absorbed. This is why oral rehydration salts include both sodium and glucose. For each cycle of the transport, hundreds of water molecules move into the epithelial cell to maintain osmotic equilibrium. The resultant absorption of sodium and water can achieve rehydration even while diarrhea continues.[39]
 

Gijs

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This therapy isn't going to help. Only for a couple of hours than you go to the toilet and pee and the effect is gone :)
 

Sasha

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This therapy isn't going to help. Only for a couple of hours than you go to the toilet and pee and the effect is gone :)

That doesn't seem to be the case with people who have IV saline and this sounds as though it could be better (according to Dr Medow's preliminary results).
 

Scarecrow

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This therapy isn't going to help. Only for a couple of hours than you go to the toilet and pee and the effect is gone :)
If there is something in particular that you want or need to do, then it could be really helpful, even if the effect is relatively short-lived.
 

Sasha

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If there is something in particular that you want or need to do, then it could be really helpful, even if the effect is relatively short-lived.

And yes, having a couple of hours of being actually functional on top of my current hour every other day would be brilliant.

But I think it's going to be better than that. :) I don't think Dr Medows would be bothering with a trial, otherwise.
 

Scarecrow

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I wonder if the ratio is critical, then, and the trick is not to neck too much in one go?
I'm not sure how critical but there does seem to be an optimal osmorality.

There's a quick and dirty recipe in the wiki article and it's different to the WHO ORS proportions.
A basic oral rehydration therapy solution can also be prepared when packets of oral rehydration salts are not available. It can be made using 6 level teaspoons (25.2 grams) of sugar and 0.5 teaspoon (2.1 grams) of salt in 1 litre of water.[17][18] The molar ratio of sugar to salt should be 1:1 and the solution should not be hyperosmolar.[19] The Rehydration Project states, "Making the mixture a little diluted (with more than 1 litre of clean water) is not harmful."[20]
 

Sasha

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I wonder what the long-term effects are of taking this (or the WHO stuff)? The pharmacist said something about some of the stuff being to put minerals back into patients who'd lost them through diarrhoea (or something - not sure I got that straight). Our purpose is different.

I wish Dr Medow was on the forums! We need a rehydration expert!

@Butydoc, @Jonathan Edwards, is any of this up your street? We're wondering about whether oral rehydration salts (glucose, sodium and other stuff) would mess up the guts of PWME (those who have candida, etc.) or would have problems being taken daily (for instance) in the long term.

I'm hoping against hope that in the right proportions, the glucose gets absorbed from the gut so fast that it doesn't get a chance to mess anything up.

(The thing we're discussing is in the first post of the thread.)
 
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Jonathan Edwards

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I wonder what the long-term effects are of taking this (or the WHO stuff)? The pharmacist said something about some of the stuff being to put minerals back into patients who'd lost them through diarrhoea (or something - not sure I got that straight). Our purpose is different.

I wish Dr Medow was on the forums! We need a rehydration expert!

@Butydoc, @Jonathan Edwards, is any of this up your street? We're wondering about whether oral rehydration salts (glucose, sodium and other stuff) would mess up the guts of PWME (those who have candida, etc.) or would have problems being taken daily (for instance) in the long term.

I'm hoping against hope that in the right proportions, the glucose gets absorbed from the gut so fast that it doesn't get a chance to mess anything up.

(The thing we're discussing is in the first post of the thread.)

I am a bit doubtful that anything can be achieved this way, Sasha.

If you pee out the water after you rehydrate then it has got into your blood volume so taking glucose as well would not seem likely to do anything more. The real problem is that your blood volume is constantly controlled by hormones and nerves and you cannot really change it much - unless you are actually starved of input. If you take in more than your control mechanism can handle you may end up with pulmonary oedema and severe shortness of breath. If the difference with IV is that it is so fast that your kidneys cannot pee the stuff out as fast as it is absorbed then I would worry it was dangerous. Before we had proper intensive care units people used to go into pulmoary oedema regularly when an enthusiastic doctor gave them IV saline they did not need.

It would be interesting to see what actually happens in this study - assuming it is done competently.
 

Simon

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I don't know. I don't know if it's going straight into the bloodstream from the gut. In his grant statement, Dr Medow makes a reference to "co-transport" of glucose and sodium, and I wonder if that's something to do with getting into cells by piggybacking one molecule on another (or am I talking rubbish, @Simon?).
I'm not the encyclopedia you take me for, but @Google is:


Sodium-glucose transport proteins - Wikipedia, the free encyclopedia
(two sodiums per glucose in the gut)
 

Sasha

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If you pee out the water after you rehydrate then it has got into your blood volume so taking glucose as well would not seem likely to do anything more. The real problem is that your blood volume is constantly controlled by hormones and nerves and you cannot really change it much - unless you are actually starved of input. If you take in more than your control mechanism can handle you may end up with pulmonary oedema and severe shortness of breath. If the difference with IV is that it is so fast that your kidneys cannot pee the stuff out as fast as it is absorbed then I would worry it was dangerous. Before we had proper intensive care units people used to go into pulmoary oedema regularly when an enthusiastic doctor gave them IV saline they did not need.

It would be interesting to see what actually happens in this study - assuming it is done competently.

And there I was thinking that this would be a relatively safe thing to have a go with. :(

So when you drink water, it goes from the stomach to the bloodstream to the kidneys and then you pee it out? It doesn't go straight from your stomach to your kidneys (pardon my medical pig-ignorance)?

It sounds as though Dr Medows has already seen promising results, though. He's certainly measuring a ton a stuff, and it will be interesting to see how it pans out. I'm glad he's in NY - you'd think it would make it easy to recruit patients to the study.
 

CFS_for_19_years

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Electrolyte replacement drink that Dr. Cheney recommended that I've been using for at least 18 years (used to be called Gookinaid):
http://www.vitalyte.com/products/electrolyte-replacement/fruit-punch-kilo-jar.html
vitalyte.png
 

Sasha

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Jonathan Edwards

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How much do you take, and how often? Do you glug it all in one go or space it out throughout the day?

It seems to have different ratios than the WHO stuff so I'm not sure that should be a guide but I'm curious!

Dear Sasha,
I have to say that I am bemused by all this. Drinking the mixture in any large amount would seem likely only to make you fat from the sugar and go to the loo a lot.

It seems that a litre of saline IV is given over anything from 2 to 8 hours. But if you drink a litre when you are not seriously thirsty you will pee most of it out within an hour. So the IV route is not even faster. So there is no sudden stimulus of baroreceptors or something that you do not get just by drinking. That makes it seem to me that the water has nothing to do with it. Maybe it is just a matter of increased salt intake, which you can do by putting more on food.

It sounds as if it does need proper investigation with adequate controls. I certainly would not want people having indwelling central lines.
 

lansbergen

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During flares all mucosa are dry but I have no desire to drink a lot. After the flare I need liquid. Nowadays I drink a few glasses royal club bitter lemen diluted with water.
 
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