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Is it hard to convince docs to give IV saline?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by purrsian, Mar 6, 2017.

  1. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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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  2. eljefe19

    eljefe19

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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.
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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.
     
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  4. eljefe19

    eljefe19

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    @Jonathan Edwards Interesting! I mean, I've had to go to the ER I was so sick, and just given IV saline I felt 100% better with 1 or 2 bags of saline. I would be honestly shocked if it turned out to be placebo.
     
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  5. Dainty

    Dainty Senior Member

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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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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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!
     
  7. purrsian

    purrsian Senior Member

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    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.
     
  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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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
    http://www.fightingfatigue.org/dr-bells-live-q-a-on-immunesupportcom/
    http://www.medscape.com/viewarticle/576986_5

    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


     
    Last edited: Mar 7, 2017
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  10. 5150

    5150 Senior Member

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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.
     
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  11. 5150

    5150 Senior Member

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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?
     
    Last edited: Mar 11, 2017
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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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.
     
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  13. Lindberg

    Lindberg

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  14. 5150

    5150 Senior Member

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    @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.
     
  15. BlahBlahBlah

    BlahBlahBlah

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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
     
  16. BlahBlahBlah

    BlahBlahBlah

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  17. BlahBlahBlah

    BlahBlahBlah

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  18. purrsian

    purrsian Senior Member

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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.
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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?
     
  20. BlahBlahBlah

    BlahBlahBlah

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

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