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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Meadow: Reducing Orthostatic Intolerance with Oral Rehydration in Patients with ME/CFS

Discussion in 'Active Clinical Studies' started by mango, Feb 21, 2016.

  1. Sasha

    Sasha Fine, thank you

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    I wish I understood enough of the physiology to have a sensible conversation with you about this! But I will have a go.

    I'm aware that there's a reflex that's supposed to help with OI if you just take a massive drink of cold water (which I've tried, totally ineffective in my case). But the ORS intervention, like the saline, seems to be to do with trying to jack up our blood volume (which is known to be generally low in PWME, though I don't know if that's so in all PWME+OI cases). Presumably that's because we don't have good enough ANS control to stop our blood heading to our boots so if there's more blood volume in the first place, at least more of it will stay in our brains and hearts on upright posture (?).

    A lot of PWME+OI have observed improvement in their OI with IV saline and it seems to be a pretty common treatment for PWME+OI who see US specialists. I've tried putting loads of salt on food and drinking electrolyte solutions and have found them to be completely ineffective, and do indeed pee the water straight out again - but they didn't have glucose in them, like the solution that Dr Medow is trying.

    I don't think that one would need to drink the whole litre of ORS in one go (though I'd be interested to know what Dr Medow is having his patients do). Maybe one could drink it throughout the day for the best benefit. But I find that I am often thirsty, especially on waking - I suspect a lot of OI patients are. I think it's to do with the (anti-diuretic?) hormone that stops you needing to pee in the night not being produced properly, among other things.

    It's interesting that Dr Medow says:

    Using noninvasive measurements of heart rate and blood pressure by Finapres and oscillometry, cardiac output and peripheral arterial resistance by inert gas rebreathing, cerebral blood flow velocity by transcranial Doppler ultrasound, and regional fluid shifts by impedance and venous occlusion plethysmography, we have acquired preliminary data in ME/CFS patients with OI demonstrating superior restoration of orthostatic tolerance with ORS.

    and he's doing what looks like a well-designed randomised trial to look at it (open-label but objective measures - though I wish N was bigger, but presumably he's done a power calculation, and the within-patients control will help).

    As a patient waiting decades for clinical trials to produce something I can use, I sometimes take the approach of trying things that are likely to be harmless but seem promising (getting my doctor's OK first, usually) as a short-cut to bypass both my biomedical ignorance and the long wait for the science to deliver. This looks like a good candidate for this approach (I'm seeing a cardiologist soon and I'd like some anecdata for him, as well as his advice about trying the full treatment safely). So for now I'm trying a little N=1 study of my own on a low dose - 2 doses of 200ml of ORS spaced out in time - daily for a few days to see if I notice a pick-up. I did do better yesterday but I want to give it a few days in case that was a fluke or me just pushing things as a result of expectancy (which I won't be able to keep up, if that was the case, due to the PEM that would result). I keep records of when I lie down and for how long so I'll have reasonably good data.
     
    Last edited: Feb 23, 2016
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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I drink several glasses throughout the day. About half of my fluid intake is Vitalyte, the other half is plain water.
     
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  3. shannah

    shannah Senior Member

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    I'm sure you wouldn't be drinking it unless you felt some benefit. How much do you think it helps?
     
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I just feel less thirsty.

    Besides helping with thirst, I find that when I don't drink Vitalyte for several weeks, my dry eyes get much worse, even though I'm also supplementing with flax oil and fish oil. Within a few weeks of restart drinking Vitaltye, my dry eyes improve. I have no explanation for why that happens, other than improving uptake of vital nutrients.
     
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  5. ahimsa

    ahimsa Rarely on PR now

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    The WHO ORS recipe is one of the recipes I use when I mix up an electrolyte solution at home for myself. I have another recipe that uses baking soda instead of the trisodium citrate. I have not noticed much difference between the two recipes, actually, when it comes to how much they help. But they do help.

    It's definitely a temporary fix, yes, but it helps me to sleep better. It's common for me to skip dinner and drink a liter of this. I am NOT skipping food for weight issues. I don't have any weight issues, actually, but would not care how much I weighed at this point. (Vanity is completely gone because all I want is to feel better)

    I skip dinner when I'm too exhausted to eat. For me, having Orthostatic Intolerance (NMH and POTS) makes me feel much worse after eating (splanchnic pooling). Drinking this mixture makes me feel better. I also take midodrine, fludrocortisone, time released potassium (prescription) and salt tablets.

    I used to buy the unflavored Pedialyte. But that's so expensive *and* that has environmental issues (energy and materials to make/ship all those plastic bottles is bad for environment even if I end up recycling them).

    I've been doing this for years. I don't drink it every day. I alternate between drinking 2 liters of water and 1 liter of this mixture or drinking 3 liters of water per day. No weight gain problem. It's a pretty small amount of glucose.

    I have all four ingredients (powder form). I just mix the right amounts in water, chill in the refrigerator before drinking (doesn't taste as bad). Also, I use about 1/2 the amount of glucose (aka, dextrose) that's listed above.

    I started a thread on this a while back asking about whether some sugar (meaning glucose/dextrose, not sucrose) was helpful for patients who have OI in order to help absorb the sodium better. There was no real consensus. But I feel better when I include the dextrose so I always add some.

    By the way, you can buy bottles of powdered Potassium Chloride (KCl), at least in the USA. They're available in supplement stores or on Amazon.

    Oh, and I did check with my cardiologist to make sure it was not too much potassium for me since I'm taking prescription dosage (some generic version of Klor-Con, 10 mEq, about 750 mg). He said it was fine, didn't seem to think there was a problem.

    The bottle I have is NOW Foods brand. The bottle says 1/8 teaspoon = 0.7 gram (weight) = 365 mg potassium. Which works out to about 1/4 teaspoon per liter of water for the recipe above.

    Sorry if I rambled on too long (that's a problem for me, LOL) but I hope this is helpful to someone.

    Edited to add: For me, this is purely a short term treatment to help ease my symptoms a bit. It's like taking ibuprofen when there's pain. It makes me feel better but I don't fool myself that it's actually solving any of my underlying problems.
     
    Last edited: Mar 4, 2016
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Jonathan Edwards I am so happy to read your post on this because this is exactly what happened to me in Nov 2014. I had one liter of IV saline mixed with Magnesium at a hospital outpatient infusion center over a three hour infusion rate and I developed "flash pulmonary edema" and had to be rushed to the ER. My BP dropped off the measurement scale, my HR went into the 150's and my pulse ox dropped to 84 and I was gasping for air and thought I was going to die.

    My cardiologist could not explain what occurred and said this could only happen to someone in congestive heart failure (which I do not have.) It was not until I saw my mast cell specialist in July 2015 that he said pulmonary edema from IV saline is common in MCAS patients due to third spacing. He said that histamine makes all the membranes more permeable and fluid/saline does not go where it is supposed to and can end up in the abdomen or lungs. He said that IV saline for an MCAS patient must be given over a 6-8 hour infusion rate for one liter and never any faster.

    I absolutely agree with his explanation but still wonder about the role that the Magnesium played as I now learned that I have a rare antibody that attacks the calcium channel called "N Type Calcium Channel Ab" (test run by Mayo Clinic via my doctor.) Have not spoke to doc yet and do not know quite how to interpret the test but do wonder if the Magnesium played a role in addition to the infusion rate of the saline in light of my MCAS and third spacing.

    Do you have any thoughts on this? Am posting b/c I fear that it could apply to others but they would never know (as I did not know) and per what you wrote above, IV saline is not as benign as people think.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    I thought that too and never dreamed of what ended up happening to me. I think this was one of the interventions that probably came the closest to killing me.
     
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  8. Avengers26

    Avengers26 Senior Member

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    @ahimsa Can you post or PM your recipe using baking soda. It's worth a try. Thanks.
     
  9. ahimsa

    ahimsa Rarely on PR now

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    The one I'm using now is 3/8 tsp. salt, 1/4 tsp. potassium chloride and 3/8 tsp. baking soda per liter of water. Plus 2-3 teaspoons of dextrose/glucose powder. (this appears to be optional but seems to help me)

    I've seen recipes online that are slightly different from this. Use these keywords (no quotes) with google - WHO ORS recipe baking soda - to find different options.

    Note that many of online recipes use table sugar (sucrose), and quite a lot of it, instead of dextrose. I don't care for something that sweet and don't think it's necessary at all for folks who don't have diarrhea or vomiting (the main reason most people an Oral Rehydration Solution).

    I hope this is helpful.

    Edit - Here's another ORS recipe that uses sodium citrate. It's in grams so you'd have to find conversion tools online to make it teaspoons. Also note that it uses more dextrose than patients like us need.

    13.5 grams dextrose/glucose
    2.9 grams sodium citrate
    2.6 grams sodium chloride (table salt)
    1.5 grams potassium chloride (common salt substitute)
    1 liter water
     
    Last edited: Mar 12, 2016
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  10. jimells

    jimells Senior Member

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    I certainly understand your skepticism. I'm skeptical too, even though I went to the Emergency Room three times in recent months to get a liter of saline via IV, about one hour to infuse. Each time I arrived at the ER in a wheel chair and left on foot. So something definitely happened. Each treatment seems to help me for about a week. I asked my GP for a standing order for IV saline so I don't have to go through the whole ER routine each time, but she refused and wouldn't give me a reason why.

    There is some research to support the use of IV saline:

    http://www.ncbi.nlm.nih.gov/pubmed/26446285
    This study has the usual problems of subjective questionaires, open label, and no comparison groups. Plus we don't know from the abstract what variety of OI these patients are dealing with. Even POTS has several varieties. I hope the proposed study will subgroup by type of OI.

    I don't think much of any website called "pro health" (that seems to imply that other websites are "anti-health"), but I found this article by David Bell to be interesting:

    http://www.prohealth.com/library/showarticle.cfm?libid=12384

    This is an interesting study, although I have no idea how it fits into the whole ME / POTS / low blood volume problem.

    http://circ.ahajournals.org/content/111/13/1574.long
    Like most POTS studies, there is no distinction between hyperadrenergic POTS and neuropathic POTS. I wonder why. It sure would be useful to know if the anomalies in this study apply to both types. I don't think there has been any followup on the idea that the kidney may be involved in POTS somehow. Personally, I would find that line of research much more interesting than a study of patients drinking salt-sugar water.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    When I cannot eat food for an entire day b/c of MCAS reactions, I put 2-3 tablespoons of dextrose powder and one teaspoon of sea salt into a 16 oz bottle of water and find this very helpful. Am not sure if it is relevant to anyone else but wanted to share just in case.
     
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  12. Avengers26

    Avengers26 Senior Member

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    @ahimsa Thank you. I took sea salt, potassium gluconate & sugar mix last 2 days & I liked it. I will order KCl & dextrose & try it.
     
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