Is it hard to convince docs to give IV saline?

[BlahBlahBlah]

I used to do the try drinking a pint of cold water to push up BP thing but didn't find it worked. Could drink 6litres plus, was put on slow sodium but still felt constantly dehydrated and with salt cravings

 

[CFS_for_19_years]

Dr. Bell gave IV saline to his patients for 20 years and said that none of them derived any benefit from taking oral hydration. When he retired and his patients couldn't find anyone to prescribe the IVs they deteriorated.

 

[Jonathan Edwards]

No it's given over 2 hours although I sometimes run the first few hundred mls in on full and then slow it down

The the 'sudden boost in blood volume' would be no more sudden than going to the pub for a couple of pints of beer, I think.

 

[BlahBlahBlah]

The the 'sudden boost in blood volume' would be no more sudden than going to the pub for a couple of pints of beer, I think.

I'm under 2 ME specialists, they would disagree with you there

 

[BlahBlahBlah]

The the 'sudden boost in blood volume' would be no more sudden than going to the pub for a couple of pints of beer, I think.

Tad insensitive comparison considering some of us (me included) have never had a drink in a pub or could never drink a pint! Luckily my 2 specialists understand and have started to give me life outside of been vedbound all my adult life

 

[Marky90]

IV infusions have a reputation for strong placebo effects. In trials of TNF inhibitors for rheumatoid arthritis I have been studying recently as part of my work as an expert witness I noted that about 20% of people given a placebo infusion they thought might be a TNF inhibitor achieved a clear benefit for one to two weeks. However, none showed benefit at a month. In the Norwegian rituximab study I think 15% of patients given placebo reported a response, even at 6 months.

That sounds very reasonable. When patients have been sick for a long time, some part of the function decrease is likely to be hinged to a "sad" brain.

I did not get a placebo effect from rituximab myself, but I might have done if I didn't weekly test my function level by cycling. I remember feeling upbeat and vitalized, but it was only because I was actually undergoing treatment. The PEM remained the same. And i swifly felt crap again.

On the FB-group for the patiens taking rtx privately there are quite often reports of improvement. But then a week later there is a backlash, indicating to me that the improvement was placebo.

 

[Marky90]

By the way,

If the IV-saline effect hypothetically is not placebo, I would propose a potential reason could be simple: When you increase the blood volume, you presumably decrease the direct effect presumed pathological molecules have on surrounding tissue?

 

[deleder2k]

The the 'sudden boost in blood volume' would be no more sudden than going to the pub for a couple of pints of beer, I think.

Going to the pub is great. I feel almost healthy after 5-6 pints. Not sure what causes it, but it is recommended on an occasional basis

 

[purrsian]

Going to the pub is great. I feel almost healthy after 5-6 pints. Not sure what causes it, but it is recommended on an occasional basis

I used to get this too, although now I have alcohol intolerance and it makes me crash hard after 2 drinks. There's a thread on here somewhere about it and it seems we either feel great with alcohol or it makes us feel truly horrible, no in between. I do miss that almost healthy buzz from alcohol!

 

[Hip]

What if the benefits of IV saline for POTS are not much to do with any increase in blood volume it may produce, but instead are due a change in blood electrolyte levels, which can alter muscle tone, as well as altering the degree of blood vessel vasoconstriction.

Tighter muscle tone is better able to compensate for the symptoms of POTS, because tighter muscles help prevent blood pooling in the lower limbs. This is why some POTS doctors suggest strengthening the lower limb muscles through gym work, etc, in order to reduce POTS symptoms on standing.

A bag of IV saline contains sodium chloride at similar concentration to that found in the blood, but I understand the bag does not usually contain the other blood electrolytes such as potassium. Thus blood potassium concentration will probably be lowered a bit as a result of receiving IV saline (as the saline will "water down" the blood). A lowered potassium level in turn decreases muscle relaxation, causing increased muscle contraction and rigidity, which as mentioned will relieve the symptoms of POTS.

Lowered potassium level also results in increased blood vessel vasoconstriction, which again would compensate for and help relieve the symptoms of POTS.

So a temporary lowering of blood potassium levels as result of receiving intravenous saline might help explain why POTS symptoms seem to improve after such saline IVs.



It would be easy enough to prove or refute this potassium theory: the theory would predict that if you administered a bag of IV saline containing both potassium chloride as well as sodium chloride at physiological levels, that IV would not improve POTS symptoms (because you would not get any lowering of potassium in the blood). And this would be in contrast to administering a regular IV bag containing sodium chloride only, which as we know will improve POTS symptoms.

 

[CFS_for_19_years]

@Hip, the kidneys would respond to "watered down" blood by retaining more electrolytes such as potassium to restore the blood back to the normal balance. This would be happening the entire time the IV was being infused and afterwards as well.

 

[Jonathan Edwards]

What if the benefits of IV saline for POTS are not much to do with any increase in blood volume it may produce, but instead are due a change in blood electrolyte levels, which can alter muscle tone, as well as altering the degree of blood vessel vasoconstriction.

Tighter muscle tone is better able to compensate for the symptoms of POTS, because tighter muscles help prevent blood pooling in the lower limbs. This is why some POTS doctors suggest strengthening the lower limb muscles through gym work, etc, in order to reduce POTS symptoms on standing.

A bag of IV saline contains sodium chloride at similar concentration to that found in the blood, but I understand the bag does not usually contain the other blood electrolytes such as potassium. Thus blood potassium concentration will probably be lowered a bit as a result of receiving IV saline (as the saline will "water down" the blood). A lowered potassium level in turn decreases muscle relaxation, causing increased muscle contraction and rigidity, which as mentioned will relieve the symptoms of POTS.

Lowered potassium level also results in increased blood vessel vasoconstriction, which again would compensate for and help relieve the symptoms of POTS.

So a temporary lowering of blood potassium levels as result of receiving intravenous saline might help explain why POTS symptoms seem to improve after such saline IVs.

It would be easy enough to prove or refute this potassium theory: the theory would predict that if you administered a bag of IV saline containing both potassium chloride as well as sodium chloride at physiological levels, that IV would not improve POTS symptoms (because you would not get any lowering of potassium in the blood). And this would be in contrast to administering a regular IV bag containing sodium chloride only, which as we know will improve POTS symptoms.

We can refute this already Hip. Drinking saline will expand the blood volume just as much as IV over a similar time scale. All ingested fluid has to go through the vascular compartment. So the argument against volume expansion is the same for dilution.

Over the last fifty years vast numbers of people have been given IV saline while monitoring their potassium levels in hospital wards. IV saline makes very little difference to potassium levels unless given repeatedly (many litres) in the absence of potassium intake. The blood contains only a tiny proportion of body potassium because almost all of it is in cells (the opposite to sodium). Blood levels can vary widely between about 3.2 and 5.5 mequ/L without any noticeable clinical effects. If low potassium has any effect it is muscle weakness, not rigidity (calcium does that).

 

[Lindberg]

@Jonathan Edwards, you mention above that calcium causes rigidity - would that be too low amount of calcium or too high? Or perhaps in relation to something else?

And another question if you have the time - if POTS is about autoantibodies towards the autonomic nervous system, what happens with the autoantibodies during a sudden rise of bloodvolume due to IV saline? And what happens with the amount of autoantibodies when the immunsystem is triggered, for instance with a regular virus?

I have ME, POTS and experience myotonia where IV saline helps during fullbody episodes. During minor episodes rehydration solution helps but isn't enough when it's more severe. The sudden fullbody myotonia episodes, including much worse dysautonomia, happens when the immunsystem is engaging in a virus (the day before I even know about the virus) or during the hormonal shift right before my period. As I've mentioned, in these cases IV saline helps tremendously. I don't know the mechanism behind it all, it's just the way it works.

 

[Jonathan Edwards]

@Jonathan Edwards, you mention above that calcium causes rigidity - would that be too low amount of calcium or too high? Or perhaps in relation to something else?

And another question if you have the time - if POTS is about autoantibodies towards the autonomic nervous system, what happens with the autoantibodies during a sudden rise of bloodvolume due to IV saline? And what happens with the amount of autoantibodies when the immunsystem is triggered, for instance with a regular virus?

I have ME, POTS and experience myotonia where IV saline helps during fullbody episodes. During minor episodes rehydration solution helps but isn't enough when it's more severe. The sudden fullbody myotonia episodes, including much worse dysautonomia, happens when the immunsystem is engaging in a virus (the day before I even know about the virus) or during the hormonal shift right before my period. As I've mentioned, in these cases IV saline helps tremendously. I don't know the mechanism behind it all, it's just the way it works.

Very low calcium causes tetanic muscle contraction or rigidity, but it has to be far lower than would occur with an IV saline infusion.

We do not yet have much evidence for POTS being due to autoantibodies. We have a suggestion that autoantibodies might be involved in some ME from the rituximab trial but it is only a suggestion. So far even for ME there is no consistent evidence for an increased incidence of any particular autoantibody. And for POTS I think we know even less.

IV saline will only produce a tiny increase in blood volume. It might be 100ml at most distributed in 10 litres of extracellular fluid and maybe in fact in a volume more like 25 litres, including the intracellular space, so a 1% shift or less. By the time you have had 100ml, the kidneys will already have started getting rid of it and they can do that very quickly. By the end of an IV infusion of a litre most of that will be in the bladder or the loo.

So the change in autoantibody level will be insignificant. With a viral infection antibodies are not produced for several days. The important ones take about three weeks to be made, which is usually after you have got better. Antibody production is not in fact much to do with getting rid of an infection, other parts of the immune system do that early on. The point of making antibodies is so that next time you meet the virus it cannot take hold at all.

 

[BlahBlahBlah]

To throw in an extra thing I had a month of IV ringers lactate which has electrolytes. I still felt better than no IV but switched back to saline

 

[Lindberg]

Thank you @Jonathan Edwards for replying. I guess the body works constantly with sudden electrolyte adjustments in respons to a lot of different things, so the subject is quite complex. (Even if one should leave any autoantibodies out of the question.)

Many people with ME seems to have to pee a lot during crashes - just like the water breaks when you are having a baby. Perhaps that's a possible clue to how the need for electrolytes and IV saline fits in the picture?

 

[BurnA]

The important ones take about three weeks to be made, which is usually after you have got better. Antibody production is not in fact much to do with getting rid of an infection, other parts of the immune system do that early on. The point of making antibodies is so that next time you meet the virus it cannot take hold at all.

Would you mind explaining in a little bit more detail what you meant by "The important ones" ? What would distinguish these from other antibodies?

 

[Hip]

I have ME, POTS and experience myotonia where IV saline helps during fullbody episodes. During minor episodes rehydration solution helps but isn't enough when it's more severe.

I don't know if it helps, but the World Health Organization released a new formula for a rapid oral hydration fluid, which I believe is designed to rehydrate faster and more effectively. It is intended for developing world use, where IV saline may not be available. This new formula is detailed here. You can make your own just by adding the following to a liter of water:

Sodium chloride 2.6 grams
Glucose 13.5 grams
Potassium chloride 1.5 grams
Trisodium citrate 2.9 grams

I wonder if this would work slightly better than just drinking water and salt.

 

[Lindberg]

Thank you, @Hip - I will look into that! The paralysis episodes comes so quickely so it would be good to have things that helps nearby and ready. The ER in my town nowadays knows what to do if I have to come in without being able to speak or move but it would be better to have something at home that helps equally. Thanks again!

 

[Hip]

@Lindberg
Most of the ingredients of the WHO oral hydration fluid you can find in your supermarket. Glucose is available in the supermarket, and potassium chloride is found in "Lo-Salt", a brand of low sodium table salt, which by weight is two-thirds potassium chloride, and one-third sodium chloride. So that means the 1.5 grams of potassium chloride used in the formula would be provided by 2.25 grams of Lo-Salt.

Trisodium citrate powder you can buy quite cheaply on places like eBay.

Note that because it contains citrate, trisodium citrate has an alkalizing action on the body.