The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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. purrsian

    purrsian Senior Member

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    I've got a GP appointment tomorrow and I'd like to ask about trying IV saline, even just once. I've been having GI problems so she told me to use osmolax, but I've started feeling pretty bad. Looked up how it works, which is by holding water in the intestines so it's excreted, making the stool softer. So I think that I probably have hypovolemia and the osmolax has exacerbated things. I've also had a cold, which is further confusing things and making it hard to attribute the cause of various symptoms :(

    I've missed my first two weeks of college because my cold + CFS + POTS + GI issues has just been too hard to handle. I'm getting a little behind in study, and I have a few things coming up over next few weeks (engagement party, exam, interstate friends visiting, dad's bday). I was hoping to be able to convince my GP that trying IV saline might give me a boost to get through this difficult stage. I haven't tried POTS meds yet though, mainly because I'm scared it will make me worse. I tried salt tablets last year and even when tapering the dose and eating before taking it, it gave me terrible constipation and postural hypotension (don't usually have).

    Does anyone have any advice on how to approach it with her despite not trying any POTS meds yet? I'm just struggling so much and I'm scared that they will make me worse, which would just break me right now. I'm already at the point where I often wish I just didn't exist, because existing is so difficult. Not in a suicidal way - definitely not thinking like that, in a 'life is just too hard and I don't know how to handle it' way.
     
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  2. 5150

    5150 Senior Member

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    What is your diagnosis? Ohh man, so much to do... so little time.

    Sorry to hear about your situation and your current condition as they relate to each other.

    Frankly speaking, it sounds difficult, really hard. College is demanding enough of your energy without struggling due to health. And all those good things that you listed above in your post, as much fun as they are, are still just as draining of energy as the bad things on the list. Because for us, Stress is stress... good or bad. Both take away energy. I would think that you putting off the schedule for doing the "fun" college things (the majority of them) , is the way to go ; due to the way your energy is at risk of being sapped to the point of Trouble. I would concentrate on school, getting through your classes(That is why you are there, right?), and just do your school work. ok, very occasional outings...!

    Is the Health Center at your college aware that you're ill? And that you may need extra TLC? Please, talk with them, check in. Ask first, is anyone there familiar with CFS / ME ? If so, that is your person! There aren't that many doctors who know much about it. We are trying to teach them :) Or if you're in a metro area, seek a CFS/ME literate Dr. I am quite sure you can be treated really great for your cold at the Health Ctr., but a common cold is not the Problem that ME/CFS can be.

    Remember, those "things" coming up next week can all take a second seat to you taking care of yourself, mainly by pacing (conserving your energy) in all tasks, so you may have some reserve when needed. This Is Where You Take Charge: you know you have a condition requiring your extreme close awareness / or it will make you sicker.. You are also a full-time college student and you have some expectations about doing well with that... it was a big commitment when you chose to go off to school. I would place my precious energy there, and maybe next year can be more toward the "fun" things.

    Look up a good CFS/ME doctor in your area, if possible. Do that in advance. Be prepared. Then,consult with that doctor.

    Last but not least, Keep your parents in the loop.I hope you can do that, to talk about your physical condition and how it is impacting your school life. Also, never underestimate the caring feelings your friends have for you. Can you share your situation with a good friend(s)?

    ps your Health Center might agree to an IV bag of more than just saline, considering the fluids one loses during a bad cold. All the Best to you.
     
    Last edited: Mar 6, 2017
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  3. purrsian

    purrsian Senior Member

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    Diagnosis is CFS and POTS (tilt table test positive). CFS diagnosed in 2006 but probably got sick gradually since glandular fever in 2003. POTS diagnosed May last year after my symptoms changed a bit.

    I'm currently only doing part time college - two lectures Monday and one Thursday, 3 hours per lecture. I unfortunately can't do any less, otherwise I won't get the bachelor degree as the max time to complete it is 8 years (4 yr full time or 8 yr part time). Luckily, some subjects are online, which is much easier. I'm studying acupuncture at a college that also teaches things like myotherapy and naturopathy, so they're really good about disability accomodations. I have registered with the disability service and can have extra time on exams and easily defer exams if needed. For practical subjects, there is an 80% attendance requirement, but I can get this waived as long as I show I am keeping up. So far, I've had to defer one exam (due to the salt tables - hypotension debacle) and get the 80% attendance requirement waived for a practical subject because I missed one too many lectures.

    Unfortunately, not too much in the way of CFS specialists in my state (QLD in Australia). I've been to GPs that supposedly have extra knowledge about it, but nothing ever really helps much. I've got an appointment with a neurologist who is supposed to be knowledgeable about dysautonomia and POTS, but that's not until October (yup, I booked in when diagnosed in May!). My current GP seems fairly good, although not especially knowledgeable in CFS, but is willing to learn and knows I'm pretty knowledgeable about it.

    I definitely do keep my parents in the loop. They've been the most supportive people during all this. I also have my fiance, who does so well for a man who has barely ever been sick in his life. Then I also have my sister and his immediate family, who are like my second family. I don't really have any friends anymore aside from the ones coming up at the end of the month (they live interstate), but my two families and my fiance are better friends than any of my old friends ever were. I don't have the energy for any other relationships lol

    I hadn't actually thought about the fact that you lose fluids during a cold. It now makes even more sense why I've felt so terrible despite the cold being over (aside from a few sniffles still) - I've probably started off hypovolemic, lost fluids due to osmolax (and now diarrhoea today), plus lost fluids due to cold, plus some of my limited energy was getting taken by my immune system doing it's thing (for once lol). I took some berroca and added table salt earlier today and I think that has boosted me a bit. I last took osmolax on Sat, so hopefully that's starting to get out of my system. I might actually ask her for IV saline to ensure I don't struggle as much with my POTS while we are working out my GI issues. At least that sounds to her like it's only temporary, then if it really helps I can beg her for more lol
     
  4. Valentijn

    Valentijn Senior Member

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    A GP might be difficult to convince, depending on how holistic, open-minded, and/or educated they are. If a doctor doesn't believe that vitamins do anything in the human body, they probably won't think that fluids do either :p

    But there's usually some NDs (Naturopathic Doctors) or holistic MDs around who have experience using IV vitamin & mineral infusions. They'd probably have no problem giving saline a try.
     
  5. Learner1

    Learner1 Professional Patient

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    ... and if you find one, you might also benefit from high dose IV vitamin C.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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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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  7. cyclamen

    cyclamen

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    Dear Dr Edwards,
    And still patients which got saline IV declared very often that they made them function much better than anything else. Some find them especially helpful to fight of an impending crash.

    Very resently a study documenting the benefit of IV saline in refractory POTS from Dr. Grubb and colleagues has been done.
    Notably, the majority of patients who participated in the study voluntarily stopped IV saline within six months of starting it, because their symptoms were improved enough to not need it. These were all patients who had failed prior medications. Also interesting, patients reported an improvement in symptoms for more than 3 days, but the volume provided by saline is known to be removed from the body within one day. Maybe this is different with chronically hypovolemic folks, it might take longer with them.

    https://www.ncbi.nlm.nih.gov/pubmed/28185102
     
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  8. purrsian

    purrsian Senior Member

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    I don't believe that the laxative caused the hypovolemia, I think it was already there causing my POTS. Just thought it might've exacerbated things, since I already drink a very large amount to try and manage the POTS, thus same intake but more loss in stool.

    I'm ok if she says no, but I hope she has some idea of something to try. My GI problems only started this year but it just is hard to manage when it makes my POTS worse. Just feels like test after test with no abnormal results, spending all this time waiting for results with nothing to ease the struggle.
     
  9. Sasha

    Sasha Fine, thank you

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    I've also read many accounts of PWME with OI feeling epic after IV saline - so epic and so quickly and so reliably repeatedly (after it's worn off) that I've found it hard to square it with expectation effects. I must admit that I'd like to try it. I'm no biologist but while what you say makes sense, the anecdotal evidence for IV saline seems unusually strong to me. I wonder if there's some mechanism involved here that isn't what one would expect.

    Last February, we were discussing a big $$$ NIH study of oral saline in PWME by Dr. Marvin Medow (sp?), in which he said, "OI in ME/CFS is often accompanied by either [POTS or NMH]... Intravenous fluids can alleviate these symptoms". I wonder how he's got on with that. (The NIH project link is here and I don't quite get how to see updates but I don't think he's published - I don't see anything in PubMed either.)

    This is very interesting. I had a consultation with the cardiologist who is attempting to treat my OI with drugs and he mentioned that if I tried a course that was effective then I might be able to come off the drugs later and maintain that improvement without them. I didn't think to question it at the time (too much to get through) but it's surprising that having one's OI symptoms treated for a while would actually resolve the problem. I don't understand how that would be. Does anyone have any thoughts about this? It's not as though masking symptoms without tackling the underlying cause would normally permanently fix the problem. (Or is it, @Jonathan Edwards? Sometimes being given an anti-inflammatory can shut down chronic inflammation, I think?)

    Thanks for posting, @cyclamen - I'm very interested in this topic and it's helpful to talk through the theories and the pros and cons (Jonathan did point out in the other thread some of the potential dangers of saline infusion, which is well worth reading).
     
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  10. Sasha

    Sasha Fine, thank you

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    Argh, paywalled. :(

    Way to stop patients helping their doctors. :(
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think so , Sasha, I think the mechanism is likely to be exactly what one would expect- the placebo effect of an IV injection. That will last longer than the saline (and the mechanism cannot just be the volume if it lasts longer than the saline) but will wane after a matter of days. A re-setting of a control mechanism is very unlikely to mirror the time scale of a placebo response.

    The quoted study from Grubb merely adds to my scepticism. The methodology is abysmal - as poor as PACE. If this is the best 'science' on this topic then I think we can be pretty sure there insetting in it. Asking for testimonials over the phone is not a valid way of doing physiology!

    I have great respect for the ME patient community but we need a level playing field. GPs are not going to be encouraged to help by being presented with poor science that makes no sense.
     
  12. Sasha

    Sasha Fine, thank you

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    Thanks, @Jonathan Edwards. I'm not sure what I think about a placebo effect in relation to OI. I have it myself, and it's pretty unforgiving - expectancy or not, there just comes a point when you can't stay upright any more, presumably because you're not getting enough oxygen to the brain, and for people with OI that's severe enough to treat, we're on a pretty short leash. But I take your point.

    I'll ask my cardio what the evidence base is for any long-lasting effects of a fixed-term course of drugs on OI. You're right that we need to pay close attention to methodology.
     
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Indeed, I have had orthostatic intolerance all my life, being tall. I have had to collapse to the floor on a number of occasions. But a quantitative reporting of the severity of OI over time is not easy and if I remember rightly the quoted study does not even try to do that.
     
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  14. jimells

    jimells Senior Member

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    Dear Professor @Jonathan Edwards

    I share and appreciate your skepticism regarding IV saline. How could it possibly act differently from drinking water? I have absolutely no idea - which is no surprise considering my limited education. And yet it is clearly different, at least for me. In late 2015 I went to the Emergency Room three times barely able to stand. Three times I received IV saline only. And three times I was able to walk out unaided. If this was a "placebo effect", then this anecdote is support for the idea that mind magic actually exists and thinking the wrong (right?) thoughts can actually cause dramatic physiologic effects.

    Naturally I reject that hypothesis, as I'm sure you do too. Something physiological is happening that does not happen by simply swallowing the water. I wish someone would find out what it is.

    I, too, am appalled by the poor quality of this study. It is doubly disappointing because Blair Grubb is one of the few researchers in the US that know something about POTS. He has been researching and treating patients for decades. I fail to understand why they can not design a proper study. It seems to me that it should be pretty simple to blind the subject to whether they are receiving saline or not: set up a screen next to the bed with a hole for the subject to stick their arm through. Certainly all the times I have received IVs I could not tell if anything was going into my vein except by watching the bag of salt water.

    One big difference between the fraudulent PACE research and poorly-done POTS research is that there is no large body of patient anecdotes reporting improvement from exercise and therapy, whereas there are many reports right here on this forum of dramatic temporary improvement from IV saline. I'm pretty sure you would agree that patient anecdotes should not be dismissed just because researchers don't understand the mechanism. I'll bet there are many researchers embarrassed to admit they once insisted that no bacteria could possibly live in the stomach and any patents claiming a benefit from antibiotics were simply mistaken.

    It's quite upsetting to think about where the research would be today if Drs Fluge and Mella has simply dismissed their cancer patient reports of improved ME symptoms after cancer treatment. It's equally upsetting to think about the consequences of Fluge and Mella using the sloppy methodology of the POTS study under discussion,

    I can perhaps offer a few clues about the physiology regarding my own case. I believe I meet the criteria for hyperadrenergic POTS, as published here. When I am sick enough to go to the ER, symptoms include elevated heart rate and blood pressure, feeling overall hot while experiencing cold and sweaty hands and feet, overall weakness, difficulty keeping muscles relaxed (I have to make a conscious effort to keep legs relaxed), and tremors. As I understand it, these are all symptoms that can be caused by up-regulated adrenergic receptors.

    Many years ago I took a course in first aid, and my ER symptoms reminded me of circulatory shock. I find it very interesting that IV saline, a standard treatment for shock, appears to be an effective treatment for a POTS crisis, which of course isn't really circulatory shock, but does vaguely resemble it.

    Professor Edwards, I hope my arguments will persuade you to look beyond the poor methodology of POTS studies and consider the possibility that IV saline may actually help. So far, I have not been able to convince a GP to write a standing order for saline; my most recent GP insisted I have "primarily a psychological disorder" even while sending me to the ER for saline (Huh??). Fortunately there are two local ER docs who will order saline, although I am forced to endure the whole ER ritual in order to get it.
     
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  15. eljefe19

    eljefe19

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    My doctor at the OMI clinic prescribes IV saline and it is definitely not placebo effect for me, it's essentially a temporary cure. Nothing short of amazing actually.
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear @jimells,
    As I understand it the placebo effect includes situations where the patient gets better for whatever reason and attributes the improvement to treatment X when in fact X made no difference. It sounds as if you have adrenergic discharges and in the absence of any true shock these are likely to resolve on their own after an hour or so. So we have no way of knowing whether the IV saline made you better.

    I agree that one does not discount anecdotes out of hand. However, one does not base recommendations for treatment on them either, unless one has good reason to think they genuinely indicate a useful form of treatment. The Helicobacter story ended with a proper controlled trial. That is what is needed here.
     
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  17. Mij

    Mij Senior Member

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    @Sasha I didn't get a paywall to read the link:

    Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome.
    Ruzieh M1,2, Baugh A3, Dasa O3, Parker RL3, Perrault JT3, Renno A3, Karabin BL3, Grubb B3.
    Author information
    Abstract

    BACKGROUND:
    The postural tachycardia syndrome (POTS) is a heterogeneous group of disorders that results in symptoms of orthostatic intolerance. Excess blood pooling has been observed to cause low effective circulating volume in the central vasculature. Consequently, acute volume loading with IV saline has emerged as a potential strategy for clinical intervention. We evaluated the impact of acute volume loading on both the signs and symptoms of patients suffering from POTS.

    METHODS:
    Fifty-seven subjects screened from our population of POTS patients and assenting to participation were administered the two surveys by telephone. Subjects completed each survey twice, before, and after initiating IV hydration therapy. The Orthostatic Hypotension Questionnaire (OHQ) was used to assess change in clinical symptomatology, while the short form 36 health survey (SF-36) was employed to assess the impact of IV saline infusion on quality of life.

    RESULTS:
    Fifty-seven patients were included in the analysis. The average number of medications trialed before referral for IV hydration was 3.6 ± 1.7 medications. Saline infusions occurred with mean frequency of 11.3 ± 8.5 days and at a mean volume of 1.5 ± 0.6 l per infusion. The mean change of the OHQ was 3.1 ± 0.3 (95% CI 2.6-3.7; P < 0.001), with significant improvement in all the composite scores. The mean change in the SF-36 form was 19.1 ± 2.7 (95% CI -24.6 to -13.6; P < 0.001).

    CONCLUSIONS:
    Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from POTS. Further work should explore its efficacy as a bridge study for patients of high symptomatic severity.

     
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  18. JamBob

    JamBob Senior Member

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    I can see how the boost in cortisol could be a good explanation of the beneficial effect of IV saline.

    In Japan, the GPs give out drips for anything and everything. They have large rooms dedicated to drip-provision. When I had a cold my (japanese) work colleagues made me go to the GP surgery. I was taken to this large room full of beds where everyone was on drips and was put on a drip myself. When you feel unwell, drips seemed to have a really fast warming and hydrating effect that I don't think you can achieve drinking lots of water. I drank litres of water every day out there as it was very hot but it didn't feel warming or rehydrating when I was sick with a virus.

    After that experience I though of drips as amazing and wondered why UK GPs don't offer them for colds and viral infections (if you asked for one in the UK - I'm sure the GPs would laugh in your face :)). However, as someone who now doesn't make cortisol, I find that when I get a cold, my temperature drops and I get freezing cold. If I take some HC, I get a boost (in temperature) and a temporary feeling of wellbeing. The feeling of improvement* from a drip could therefore be from the increased cortisol you get from having a needle stuck in your arm.

    I'd like to try one now I have OI to see if I get any effect. I don't make my own cortisol any more so it would be possible to see if the boost in wellbeing was from cortisol or not.

    *It may also be that I get some benefit from drips due to T1 diabetes as hyperglycaemia during infections can make you feel really thirsty even if you drink lots of water.
     
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  19. Sasha

    Sasha Fine, thank you

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    Thanks, @Mij, but that's just the abstract - I was hoping to see the full paper (but now it doesn't sound as though I was missing much!).
     
  20. jimells

    jimells Senior Member

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    Yes, your explanation strikes me as reasonable. It is a situation I deal with nearly every day. I am allowed only nine Imitrex pills a month for migraine, which is frequently not enough, so it is always difficult to decide when a headache is going to be bad enough to justify a $20 pill, and when I should just wait it out and save the medication for another day.

    The thing is, the hyperadrenergic symptoms don't resolve in an hour or so. When I go to the ER, I am typically laying on the table for hours before I actually receive the saline; it usually takes about an hour to empty the bag. There is no improvement in symptoms while I am waiting for the IV to start, but by the time the IV is done, I am feeling better, which is obvious enough to the ER doc that he notes the improvement in his report.

    It would certainly be interesting to measure noradrenaline just before and again just after the IV. 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???
     
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