Oral rehydration for low blood volume in orthostatic intolerance - tips?

[Sasha]

Dr Marvin Medows is doing a trial of IV saline vs WHO oral rehydration solution (ORS) in a clinical trial in PWME+OI. He says he has preliminary data that the oral solution may be better than the IV, but it's important that it's a glucose/sodium solution. I've tried electrolyte solutions without glucose before and they've done nothing.

Prof Edwards has warned that overhydration via IV is known to lead to awful things such as pulmonary oedema so I don't see this as risk-free and I think we should be cautious. Some PWME here on PR have been using electrolyte solutions for a long time but I don't know how many have used a glucose/sodium solution - though some have.

My cardiologist has agreed that I can try a litre a day (and not more than a litre) of a home-made oral rehydration solution (7 tsp sugar/1 tsp salt - but note that the WHO stuff has additional ingredients). He thinks I'll get enough potassium from food. He thought I should give it a go for a couple of months (I was surprised - I thought he'd expect to see results immediately).

I suspect that this is one of those areas in which there's no good evidence about how to best take ORS, and there seems to be a bit of a chasm between cardiologists and autonomic specialists with possibly different advice from each, so I'd like to tap into the community's experience in terms of what people have been told by our doctors.

My doctor expected that drinking ORS before bedtime would mean I'd be up all night peeing but it hasn't and I'd say I'm waking up less dehydrated (after only two nights, admittedly - might be a fluke).

Otherwise I'm taking 200ml at five points throughout the day and away from food to try to make sure it's properly absorbed but is the advice that that's necessary? I forgot to ask my cardio.

Do people drink it with straws to protect their teeth from the sugar?

Any other tips and wrinkles, or warnings?

 

[Valentijn]

Prof Edwards has warned that overhydration via IV is known to lead to awful things such as pulmonary oedema so I don't see this as risk-free and I think we should be cautious.

As long as the drip is slow, and discontinued with any bad reactions, I doubt it's particularly dangerous. Mine felt great, even at high speed.

Do people drink it with straws to protect their teeth from the sugar?

It needs very little sugar, from what I understand? I doubt it would be enough to make any difference.

I tried home-made and packaged for a while. At some point it seemed to contribute to swelling (specifically on my lower back, in a band), so I stopped it. I'll probably try it again soon. It was a bit weird, but the potassium and sodium tasted great to me, even though I was basically drinking salt water

 

[Sasha]

As long as the drip is slow, and discontinued with any bad reactions, I doubt it's particularly dangerous. Mine felt great, even at high speed.

I've read @Gingergrrl's post about having an extremely serious reaction due to her MCAS - I think whether it's safe is going to depend on a lot of things.

It needs very little sugar, from what I understand? I doubt it would be enough to make any difference.

I don't know what's considered a lot, TBH! Each 200ml drink has about 1tsp of sugar. But it's about seven times as much sugar as salt. The sugar seems to be the big deal because of a glucose/sodium co-transport mechanism getting the sodium into cells.

I tried home-made and packaged for a while. At some point it seemed to contribute to swelling (specifically on my lower back, in a band), so I stopped it. I'll probably try it again soon. It was a bit weird, but the potassium and sodium tasted great to me, even though I was basically drinking salt water

But no sugar?

 

[Jonathan Edwards]

I've read @Gingergrrl's post about having an extremely serious reaction due to her MCAS - I think whether it's safe is going to depend on a lot of things.

I don't know what's considered a lot, TBH! Each 200ml drink has about 1tsp of sugar. But it's about seven times as much sugar as salt. The sugar seems to be the big deal because of a glucose/sodium co-transport mechanism getting the sodium into cells.

But no sugar?

Dear Sasha,
I have to say this all sounds weird. Sodium does not go into cells - they mostly have potassium in them. Increasing blood volume would involve increasing plasma volume, which is full of sodium, not red cell volume. Maybe they are talking about sodium transport across gut cells.

And if glucose affects sodium transport across the gut into the bloodstream, which it might, all I can think is that absorption might be a few minutes quicker. If you did not absorb the water and sodium at all you would obviously have diarrhoea, since the water has no other way out! People regularly drink salty soup and they do not have to rush to the loo.

Can you actually make any sense of any of this?

 

[Sasha]

Dear Sasha,
I have to say this all sounds weird. Sodium does not go into cells - they mostly have potassium in them. Increasing blood volume would involve increasing plasma volume, which is full of sodium, not red cell volume. Maybe they are talking about sodium transport across gut cells.

And if glucose affects sodium transport across the gut into the bloodstream, which it might, all I can think is that absorption might be a few minutes quicker. If you did not absorb the water and sodium at all you would obviously have diarrhoea, since the water has no other way out! People regularly drink salty soup and they do not have to rush to the loo.

Can you actually make any sense of any of this?

I should make it clear that any gibberish is mine, not my doctor's! It was me making the assumption that the idea was to get the sodium into cells. So if the idea is to get it into plasma then yes, perhaps they're talking about getting it across gut cells. I don't know.

But if there's no purpose to the sugar, other than to get the sodium into the plasma a few minutes faster, why does the WHO stick a load of sugar into its ORS? And why does Dr Medow talk about this co-transport mechanism?

I suppose the WHO might spend money on sugar to make the salt water more palatable (that's what my cardio thought it was doing in there until I started babbling about this co-transport idea) but I don't know the cost vs budget issues.

I can't make any sense of it but, given my total medical pig-ignorance, I'm not well placed to. Totally up for knowledgable people to discuss it! I don't have a clue.

 

[Jonathan Edwards]

But if there's no purpose to the sugar, other than to get the sodium into the plasma a few minutes faster, why does the WHO stick a load of sugar into its ORS? And why does Dr Medow talk about this co-transport mechanism?

The WHO oral rehydration solution is for children with cholera who have no sugar in their guts because of torrential diarrhoea already. If you pour sodium into an empty gut it will not be absorbed. But if you had muesli or marmalade for breakfast the sodium should be absorbed fine as far as I can see. Otherwise everyone would be salt depleted.

 

[Sasha]

The WHO oral rehydration solution is for children with cholera who have no sugar in their guts because of torrential diarrhoea already. If you pour sodium into an empty gut it will not be absorbed. But if you had muesli or marmalade for breakfast the sodium should be absorbed fine as far as I can see. Otherwise everyone would be salt depleted.

So if you haven't had something containing glucose (not just carbs?) recently and you drink salt water, the sodium won't cross into the plasma? Do you think that's maybe why it's important for people with low blood volume to have the added sugar?

 

[Jonathan Edwards]

So if you haven't had something containing glucose (not just carbs?) recently and you drink salt water, the sodium won't cross into the plasma? Do you think that's maybe why it's important for people with low blood volume to have the added sugar?

Most carbohydrates are going to be broken down to monosaccharides like glucose in the gut I would think so it ought to be sloshing around. I would like to see evidence that people who are eating normally need extra sugar to absorb salt.

 

[Sasha]

Most carbohydrates are going to be broken down to monosaccharides like glucose in the gut I would think so it ought to be sloshing around. I would like to see evidence that people who are eating normally need extra sugar to absorb salt.

But aren't bacteria eating that glucose, and isn't that glucose making its own way through the gut wall? I wonder how long it hangs about in there, and I wonder if the salt can get to it, even in solution, given that it's all in a narrow tube.

If you eat salt with a meal then presumably it's all mixed in enough for it to get through the gut wall but you're not simultaneously taking in enough fluid to rack up your blood volume (?).

 

[CFS_for_19_years]

I must admit that a lot of this sounds like an infomercial, and I can't vouch for the science:
http://www.klemmerhead.com/vitalyte...y-article-fibormyalgia-lyme-disease-arthritis
(Note the poor spelling above: fibormyalgia)

A study by Bell and Streeten established that the average CFS patient has only 70% of the normal blood volume. To address this, Dr. Cheney recommends drinking one quart of an electrolyte solution daily on an empty stomach. The best one he has found is Gookinaid’s VITLALYTE™*. VITALYTE is rapidly absorbed into the blood stream through the stomach lining because it is isotonic – it matches the chemical concentration of the body’s fluids.
[...]
Gookinaid’s VITLALYTE passes directly from the stomach in to the blood and never enters the intestinal tract where the yeast flourishes. Only fluids similar in concentration to the body’s fluids are so easily absorbed. Water can cause the cells’ lining in the stomach to swell and slow absorption. Also, when the pressure of the water in the stomach forces water into the blood, it dilutes the blood and, when the diluted blood passes through the kidneys, they get rid of the excess water leaving a person almost as dehydrated as before drinking the water. On the other hand, solutions that are too concentrated can pull water from the body into the digestive tract making you even more dehydrated.”
[...]
From the March 2001 issue of the Cheney Clinic Online Newsletter

*As Dr. Cheney says, Gookinaid increases blood volume without diluting your blood because it has the same concentration of glucose and critical electrolytes (especially potassium, and sodium) as blood. This means that the water, glucose and electrolytes tend to stay in your circulation, instead of being absorbed into the tissues which would cause edema or being excreted by the kidneys, which would cause frequent urination and loss of the electrolytes and water.

http://www.klemmerhead.com/vitalyte...ticles/chronic-fatigue-syndrome-hypertension/
(should be HYPOtension)

In early 1997, some of the patients at the Johns Hopkins University Medical Center Chronic Fatigue Syndrome (C.F.S.) studies in Baltimore reported good results in becoming more functional using the electrolyte replacement drink known then as “Gookinaid E.R.G."

I couldn't find any published articles in peer-reviewed journals, just articles such as the ones above, written by Bill Gookin, the inventor of Gookinaid (Vitalyte).

 

[Jonathan Edwards]

I must admit that a lot of this sounds like an infomercial, and I can't vouch for the science:
http://www.klemmerhead.com/vitalyte...y-article-fibormyalgia-lyme-disease-arthritis
(Note the poor spelling above: fibormyalgia)
http://www.klemmerhead.com/vitalyte...ticles/chronic-fatigue-syndrome-hypertension/
(should be HYPOtension)

Yes, that sounds distinctly gastrobabble.

 

[CFS_for_19_years]

Yes, that sounds distinctly gastrobabble.

Oh no, not gastrobabble!

I think that's the noise my stomach makes when I eat too much.

 

[Jonathan Edwards]

But aren't bacteria eating that glucose, and isn't that glucose making its own way through the gut wall? I wonder how long it hangs about in there, and I wonder if the salt can get to it, even in solution, given that it's all in a narrow tube.

If you eat salt with a meal then presumably it's all mixed in enough for it to get through the gut wall but you're not simultaneously taking in enough fluid to rack up your blood volume (?).

The bacteria are in the colon, way beyond where the glucose is absorbed. After a meal about half is passed on from the stomach in 2 hours and then another half in another 2 hours. It then winds its way down the small intestinal for a few more hours. Glucose is likely to be sloshing around most of the day, especially if you eat unrefined carbohydrate. It will be squidged in with the salt and water if they have not already been absorbed in the stomach. Peristalsis produces thorough mixing.

 

[Sasha]

The bacteria are in the colon, way beyond where the glucose is absorbed. After a meal about half is passed on from the stomach in 2 hours and then another half in another 2 hours. It then winds its way down the small intestinal for a few more hours. Glucose is likely to be sloshing around most of the day, especially if you eat unrefined carbohydrate. It will be squidged in with the salt and water if they have not already been absorbed in the stomach. Peristalsis produces thorough mixing.

I wonder if the glucose gets absorbed while it's in the stomach, then...

I just don't know, really (as has been obvious from the start!).

 

[Sasha]

I took a break from this to try something else (that didn't work) so I'm back to trying this.

My cardio recommended a solution of ordinary salt and sugar, which I've been taking for a week with unspectacular (if any) effects but the WHO ORS contains potassium and @CFS_for_19_years quoted Dr Cheney, who said:

*As Dr. Cheney says, Gookinaid increases blood volume without diluting your blood because it has the same concentration of glucose and critical electrolytes (especially potassium, and sodium) as blood. This means that the water, glucose and electrolytes tend to stay in your circulation, instead of being absorbed into the tissues which would cause edema or being excreted by the kidneys, which would cause frequent urination and loss of the electrolytes and water.

...so this makes me wonder if the potassium is critical.

Is it plausible that it's important to have potassium in the mix, as well as sodium and glucose?

 

[Sidereal]

Potassium is critical to me. Sodium alone makes me worse. I buy potassium chloride salt replacement in a supermarket.

 

[Sasha]

Potassium is critical to me. Sodium alone makes me worse. I buy potassium chloride salt replacement in a supermarket.

Do you take it in an electrolyte drink, though?

The big deal about the ORS seems to be that the glucose transports the salt(s) into the blood and brings the water with it, so the ORS seems to be doing things that just eating salt and sodium and sugar won't do.

 

[Sidereal]

Do you take it in an electrolyte drink, though?

The big deal about the ORS seems to be that the glucose transports the salt(s) into the blood and brings the water with it, so the ORS seems to be doing things that just eating salt and sodium and sugar won't do.

I find that adding sugar to my water, sodium, potassium and chloride mix makes no difference but to each their own.