Is it hard to convince docs to give IV saline?

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It is hard to understand why the researchers aren't doing these sorts of measurements - aren't they as curious about the mechanism as the patients???
This is the nub for me. If a doctor seriously thinks that IV saline is useful for ME and should be licensed and reimbursable then he has to be duty bound to do a proper placebo controlled trial. Anything else is simply giving the treatment a bad name. All medical science researchers have the same responsibility to get out there and do a decent study.
 
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I don't know why it would be that IV saline gives a stronger placebo effect than any of the hundreds of meds and supplements I've tried for this disease, but if it is indeed placebo, well I guess I'll take it.
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.
 

Dainty

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I highly doubt the reasoning that just because patients were feeling better without a CURRENTLY KNOWN medical explanation, therefore it must be a placebo effect.

I, like a lot of other people here, have done my fair share of alternative treatments. One of them even involved daily injections of heparin. I stopped when I noticed it wasn't making a difference. In that case I still have a needle stick that would presumably give a similar cortisol rush, but I was able to determine it wasn't actually helping me feel better.

I find consuming large amounts of salt as very important for my POTS. I wrote another post about it here. By the time I measured how much sodium I was consuming by simply listening to my body, it was much less than previously, but it was still over 5 grams/day. According to the FDA I should cap it at a max of 2.3g per day. My blood pressure was low and my sodium levels had just tested out as normal.

Back when I was severe, I needed to drink several glasses of unflavored electrolyte water (with something like this) per day, in addition to salting my food liberally, multiple times throughout a meal. I did this for years, and with gradual improvement of my overall health it naturally tapered off when my usual electrolyte water tasted too horribly salty by the third glass, and then eventually by the second glass, and finally down to nothing.

A friend of mine with similar issues was prescribed salt pills by her doctor, because she couldn't bring herself to eat as much salt as her body needed to counteract the orthostatic problems.

I wonder if for some people, the salt is the important factor to IV therapy? It's cheap to try, anyway.

As an aside: I grew up knowing how to regulate my electrolytes by taste because as a kid living in Cameroon we often had to walk for hours or sometimes even days on steep terrain in tropical heat. Replenishing electrolytes lost by sweat was absolutely essential. Each person carried two water bottles - one was plain water, the other was water with salt, salt substitute (potassium chloride), and sugar. This is a basic oral rehydration solution (ORS), and can also be used to replenish electrolytes for severe diarrhea.

This stuff tastes absolutely revolting if you don't need it, and delicious when you DO need it.

At least, that's always been my experience. We were instructed to drink plain water until we felt thirst for something else or a bit lightheaded, and if so try drinking the ORS. ORS brought immediate relief, and we'd keep drinking it until it began to taste disgusting, then switch back to water.

Another trick my mom taught me is sprinkle a little table salt directly on the tongue. If it tastes good, your body needs it. If it tastes bad, spit it out and forget it.

My dad tells the story about how when he climbed Mt. Rainier, he started feeling very ill, so bad he was doubting whether he could continue on at all. The leader of the group gave him a couple salt pills, and they immediately had an amazing revitalizing effect, to good as new.

Most people I talk to these days are very hesitant to let themselves eat as much salt as they want, because of all the info out there about how it's "bad for you" to eat a lot of salt. But everything I have ever seen and experienced firsthand and heard secondhand has been along the lines of what my mom taught me: your body knows how much salt it needs, just let your tastebuds guide you. This is why I will never drink flavored electrolytes, I can't rely on the 'yuck factor' to stop me when my body has had enough! It's also another reason junk food is bad for you, they mask the salt taste so you tend to get more than your body needs without knowing it.

Oh, and because I KNOW someone's going to mention "but there are people who need to be on a low-sodium diet" - maybe so, but my grandpa was one of those people, and he followed doctor's orders to the letter regarding the consumption of sodium, and it landed him in the hospital in serious condition because his sodium levels were far too low. If I hear "everyone should eat less salt" one more time I swear I'll rip my hair out.

Tl;DR: If you're interested in trying saline IV, try salt or unflavored electrolyte water. It might help.
 
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I highly doubt the reasoning that just because patients were feeling better without a CURRENTLY KNOWN medical explanation, therefore it must be a placebo effect.
That isn't the reasoning Dainty. It is much more complicated. But there are times in medicine when they say one should keep an open mind but not so open that your brain falls out. That applies to Hahnemann's homeopathy and I think it applies here. If we think the water and the salt expand the blood volume, which is what is supposed to be happening, we know that you can get the same amount of salt and water into the bloodstream and kidneys just as quick by mouth. So it isn't the expanding of the blood volume that is doing the job if IV works and drinking does not.

That means you have to think of some other reason and the broad-sense placebo effect of IV administration is the obvious candidate. Until the obvious candidate has been excluded it must be the favoured explanation.

I am all in favour of looking for unorthodox explanations. If fact I used to teach the students that the textbook explanations for why your feet swell up in heart failure and in nephrosis and liver disease are all wrong - because they are all wrong. Lots of things in conventional textbooks are wrong. Like the idea that rheumatoid arthritis is a T cell disease. My mind is so open that I have to hold on tight to my brain when I think - but this is a time when I refuse to let it slip!
 

purrsian

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Back when I was severe, I needed to drink several glasses of unflavored electrolyte water (with something like this) per day, in addition to salting my food liberally, multiple times throughout a meal. I did this for years, and with gradual improvement of my overall health it naturally tapered off when my usual electrolyte water tasted too horribly salty by the third glass, and then eventually by the second glass, and finally down to nothing.

A friend of mine with similar issues was prescribed salt pills by her doctor, because she couldn't bring herself to eat as much salt as her body needed to counteract the orthostatic problems.

I wonder if for some people, the salt is the important factor to IV therapy? It's cheap to try, anyway.

As an aside: I grew up knowing how to regulate my electrolytes by taste because as a kid living in Cameroon we often had to walk for hours or sometimes even days on steep terrain in tropical heat. Replenishing electrolytes lost by sweat was absolutely essential. Each person carried two water bottles - one was plain water, the other was water with salt, salt substitute (potassium chloride), and sugar. This is a basic oral rehydration solution (ORS), and can also be used to replenish electrolytes for severe diarrhea.

This stuff tastes absolutely revolting if you don't need it, and delicious when you DO need it.
Interesting stories, thanks for sharing :) I have troubles with salt tablets causing constipation and really bad postural hypotension, but I do love the taste of salt. I think it made a difference when I had berroca with table salt added yesterday. Fiance made a weird face and said it will taste gross, but I quite like it. Going to look at the drink you linked. I've tried gastrolyte and it seriously is horrible.

Are there any tests recommended to try and figure out what type of POTS you have to help indicate what meds to try, or is it just trial and error? I don't think I have hyperadrenergic POTS, but don't really know about other types much. I did notice I was urinating a lot more while I was feeling horrible (quantity and frequency) so maybe the regulatory hormones are involved?

It's frustrating how many poor quality studies are out there. It seems that everyone just wants to prove their point rather than actually investigate things. I read a list the other day of diseases that can cause POTS and it's so long - it's amazing there is still so little research.
 

CFS_for_19_years

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Dr. David Bell on "Intravenous Fluid as a Treatment for ME/CFS"
http://www.prohealth.com/library/showarticle.cfm?libid=12384
Introduction
The newsletter today is my first discussion of intravenous saline as a treatment agent for ME/CFS. I have now been using this treatment for nearly six years and wish to share my thoughts. While I plan to be open, honest and even blunt about this treatment, I will not compromise the confidentiality of the patients treated. I have nothing to sell, and I am not encouraging this treatment, as it has not been rigorously tested. However, I do not think I am witnessing a placebo response, and all things considered, it is the most effective treatment for severe ME/CFS that I have found in my 21 years of looking. But it has serious drawbacks and risks.
[...]
Results to Date
Over the past six years approximately 25 other patients have had placement of PICC line or Mediport and daily normal saline infusions. Three patients could not tolerate the IV fluids because it made them feel more ill, and the fluids were stopped after several days. Three other patients used the IV saline for three months and then discontinued it because there was no benefit. It caused no harm, but it was just not doing any good. So overall, 6 of 25 (24%) did not respond, and 19 of 25 (76%) have felt better with this treatment.
http://www.fightingfatigue.org/dr-bells-live-q-a-on-immunesupportcom/
Q: Ive read your article about IV saline making some ME/CFS patients improve. Have you tried having patients increase salt and water taken by mouth?

Dr. Bell: For reasons I do not understand, increasing salt and water by mouth does not seem to do the same thing as the IV saline.
http://www.medscape.com/viewarticle/576986_5

Administration of an intravenous (IV) infusion of 1 L of normal saline for several consecutive days to weeks to improve orthostatic intolerance and fatigue with CFS has been used successfully by Dr. David Bell, an internationally recognized expert on adult and pediatric CFS, as well as by other CFS clinicians.[36] The mechanism by which this intervention is effective is unknown and warrants scientific inquiry. There is some evidence in cardiology literature that increasing intravascular volume with intravenous normal saline can alter the autonomic response that triggers neurally mediated syncope,[37] a potential endpoint of neurally mediated hypotension with CFS.[29,38] A case report in the literature cites improved performance during graded exercise testing in a woman with CFS after daily treatment with 1 L of 0.9% saline via a central venous line over a period of 417 days. Improvement in a variety of cardiopulmonary measures as well as subjective report by the study participant of improved activity tolerance, reduced muscle fatigue and pain, and improved orthostatic tolerance were cited.[39] Although double-blind studies for efficacy are lacking, the use of intravascular volume expansion for relief of fatigue in CFS patients with orthostatic intolerance is regarded as a "reasonable option" in the scientific literature.[40]
ref 37: Burklow T, Moak J, Bailey J, Makhlouf F. Neurally mediated cardiac syncope: Autonomic modulation after normal saline infusion. J Am Cardiol. 1999;33:2059-2066
ref 39: Snell C, VanNess J, Stevens S, Bateman L, Keller B. Intravenous saline administration improves physical functioning in a patient with chronic fatigue syndrome. Med Sci Sports Exerc. 2006;38:S359

Pathogenesis and management of delayed orthostatic hypotension in patients with chronic fatigue syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/9292244
Abstract
The relationship between orthostatic hypotension and chronic fatigue syndrome (CFS) has been reported previously. To study the pathogenesis and management of delayed orthostatic hypotension in patients with CFS, a case comparison study with follow-up of 8 weeks has been designed. A group of 78 patients with CFS (mean age 40 years; 49% men and 51% women), who fulfilled the Centre for Disease Control and Prevention criteria were studied. There were 38 healthy controls (mean age 43 years; 47% men and 53% women). At entry to the study each subject underwent an upright tilt-table test, and clinical and laboratory evaluation. Patients with orthostatic hypotension were offered therapy with sodium chloride (1200 mg) in a sustained-release formulation for 3 weeks, prior to resubmission to the tilt-table testing, and clinical and laboratory evaluation. An abnormal response to upright tilt was observed in 22 of 78 patients with CFS. After sodium chloride therapy for 8 weeks, tilt-table testing was repeated on the 22 patients with an abnormal response at baseline. Of these 22 patients, 10 redeveloped orthostatic hypotension, while 11 did not show an abnormal response to the test and reported an improvement of CFS symptoms. However, those CFS patients who again developed an abnormal response to tilt-test had a significantly reduced plasma renin activity (0.79 pmol/ml per h) compared both with healthy controls (1.29 pmol/ml per h) and with those 11 chronic fatigue patients (1.0 pmol/ml per h) who improved after sodium chloride therapy (p = 0.04). In conclusion, in our study CFS patients who did not respond to sodium chloride therapy were found to have low plasma renin activity. In these patients an abnormal renin-angiotensin-aldosterone system could explain the pathogenesis of orthostatic hypotension and the abnormal response to treatment.


 
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5150

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There are some very experienced doctors who will tweak your bag with some extra goodies, if they know your case well. Vit B-12, glutathione, big dose of C, and more. These are the more experienced naturopaths, D.O.'s, and M. D.'s.
Too tired to remember.
 

5150

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Dear @purrsian,
I should not give you personal advice but in general terms most doctors assume that giving one off doses of IV saline is a waste of time and they have very good reasons for thinking that. I am 95% sure it is a complete waste of time. Having an IV set up will probably put your cortisol production level up but that will have more to do with the needle than the fluid.

When you drink a litre of water that goes to your blood stream within twenty minutes. It must do because you need to go and pee by then - which means it has got through the blood to the kidneys. Having IV fluid is no different. At least in terms of physiology as we understand it it is no different. In the case of people with acute gut problems like dysentery or cholera things are different but not if you are not having massive diarrhoea.

It is very hard to get hypovolaemic by taking laxatives because you get thirsty and fill up again. Certainly if you drink regular glasses of water or cups of tea there will be no problem. If blood volume is low it will be because of some shift in regulation and no amount of drinking or IV fluid will make any difference to a shift in regulation.

So if I were asked to prescribe IV fluid I would say no way because there is no physiological reason to do it and there is no clinical evidence that would override that on the basis of carefully controlled trials. As far as I understand it trying to interfere with the hypotensive symptoms associated with ME with any sort of drug or intervention is pretty much a waste of time and most likely to make the person feel worse.
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briefly, When I get dehydrated in the ME condition, while not being ever-watchful, I drink a recovery beverage which I make, plus use some good sea salt along with reverse-osmosis water. It's liquid that i need , and it needs to be delivered efficiently. If I can win that race: to become re-hydrated before going too far over the hill, by putting liquid in soon as possible, then I will recover and will have won that fight. This process is done by *drinking* the mix.

So, is all we are talking about-->it's just *IV*saline/mixes that cause placebo responses? or can it also occur from "drinking" virtually the same ingredients that go into the bag? I have had only 3 or 4 bags administered due to the illness, but many others thru life. Each has helped, some more than others... probably related to how sick I was at the time. Wish it was not such a high financial output: $250. for one. Seems pretty high? what is the cost in your own geographical locations?
 
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So, is all we are talking about-->it's just *IV*saline/mixes that cause placebo responses? or can it also occur from "drinking" virtually the same ingredients that go into the bag? I have had only 3 or 4 bags administered due to the illness, but many others thru life. Each has helped, some more than others... probably related to how sick I was at the time. Wish it was not such a high financial output: $250. for one. Seems pretty high? what is the cost in your own geographical locations?
Drinking salty water could give a placebo response as well as having it IV but if you feel dehydrated you probably are, so the response is a true physiological benefit from replacing fluid. However, that can be achieved just as well by mouth as IV. The main reason for giving saline IV is in a situation where the personal is too ill to drink or may vomit, otherwise it has no advantage.
 

5150

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Drinking salty water could give a placebo response as well as having it IV but if you feel dehydrated you probably are, so the response is a true physiological benefit from replacing fluid. However, that can be achieved just as well by mouth as IV. The main reason for giving saline IV is in a situation where the personal is too ill to drink or may vomit, otherwise it has no advantage.
@Jonathan Edwards Dr.Edwards, I would like to say thank you for your tireless work with a bunch of very sick people.You are such a tremendous asset for us, and I hope that we also bring some joy into your life! Thank You.
 
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Hello, I've been on daily IV saline for nearly 18 months and no one can believe the difference in me.

I have to disagree with the cortisol theory as I have it through a central line. Having it daily and accessing my line is utterly routine and def not enough to cause a cortisol spike.

My Dr who tried it is open minded and has come up with a theory after our experiences. He thinks it's the sudden boost in blood volume and the effect/stretch this has on the barareceptors (please excuse my spelling). After learning about bararecrptors she the signals they send it makes so much more sense. Also I've found if I have IV saline very slowly (say over 8 hours) I don't have any benefit yet run it in fast (1L in under 2 hours) and I'm so much better which is reflected both in how I feel and in my obs


@Jonathan Edwards
 

purrsian

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Always great to hear everyone's views, I love that we can access so much knowledge and experience between each other! I'm not currently looking too hard into saline therapy, as I'm not sure my doc will be into it, but she has recently mentioned stimulants. I'm reading up on them as I have time off from study this semester and might be an ideal time to try new meds. Apparently they can also help with orthostatic issues due to causing vasoconstriction, so it might be beneficial for fatigue and POTS. But if it doesn't work for me, will probably look back into saline therapy.
 
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My Dr who tried it is open minded and has come up with a theory after our experiences. He thinks it's the sudden boost in blood volume and the effect/stretch this has on the barareceptors

@Jonathan Edwards
But I doubt the boost is any more sudden than drinking saline. You can drink a litre in under a minute and it will be absorbed in a few more minutes. Is IV saline given in less than 15 minutes?