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Low blood volume - how/whether to increase it

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sasha, Apr 3, 2010.

  1. Sasha

    Sasha Fine, thank you

    Like many of us with CFS I have orthostatic intolerance and although I've not had it measured I'm assuming I probably have the low blood volume that often goes with it. Dr Bell said that 80% of his patients with CFS had reduced blood volume, red cell mass, or both.

    My doctor advised increasing my salt and water intake; I'm up to 5g salt/day and decided yesterday to measure how much I drank and how much I retained. I drank 3.3 litres (just drinking in response to thirst) and peed 3.8 litres, having been to the bathroom 17 times (there will be some measurement error but it's clear I'm basically not retaining what I'm drinking).:(

    I've been reading about this and it's clear that according to Dr Bell and others, CFS people with low blood volume have a hard time increasing it - we just pee out any increased fluid intake. Dr Bell has written a very interesting account of trying a daily saline drip on 25 CFS patients; most benefited, some to the extent that they were able to return to normal life; however, it requires having a permanent catheter inserted for the line and infection (potentially severe blood infection) is pretty much inevitable at some point. Dr Bell points out it's not a cure, it just improves the symptoms.

    As Cort points out on one of his treatment pages, erythropoietin has been trialled in CFS twice and both times increased blood volume but not patients' health.

    So, questions:

    *Is there any point trying to increase our blood volume - would it actually improve our health if we did?

    *Has anyone managed to go from peeing out whatever they drink to retaining some and managing to increase their volume? If so, how?

    *Does increasing salt intake have any effect?

    *Has anyone been treated for diabetes insipidus (the symptoms of which are excessive thirst & peeing alot)? What with? Did it help your CFS symptoms or just mean you peed less?

    Right. off to the bathroom...
  2. flybro

    flybro Senior Member

    I have had a lot of dizziness with this disease.

    I have had low blood presure most of my life. I havn't been tested but I assume I have OI. I pee a lot, drink a lot, and sometimes sweat like a stuffed pig at night.

    If I wear black clothing I get crytalised salt lines. I went form not sweating to suddenly in my late 30's consatntly dripping in sweat, as a child when I was being tested for a range of gentic illness the fact that I didn't sweat was considered to point towards a genetic illness.

    After reading the electrolyte drink thread, my partner spoke to the local pharmacist and he recommended, something called dioralyte, which is an electrolite repensishment drink .

    Its only been a short while since we've been trying it, my partner tried it to. One sachet a day and I have had much less dizzyness, we both noticed almost instant imrovement in cognition, and skin had that healthy glow.

    I'm doing lots of other things to help myself but this is a reent one in my arsenal.

    In the UK a GP can prescribe dioralyte so you may not have to pay for it if you are on benefits.

    If you purchase the sachets over the counter they are 2.00 ish for a box of ten sachets.

    It comes in different flavours I've had blackcurrant so far and its real yeuchy, but its OK diluted with juice in a small mineral water bottle.

    If any one gives it a go could they PM me to let me no how they get on with it.
  3. xchocoholic

    xchocoholic Senior Member

    I'm not sure why this works but taking 2 AZO w/ probiotics twice a day has corrected this for me ... kow ... I had to stop taking my multi and B complex too ... those always made me urinate more frequently and leak. IMHO, this points to the fact that I keep having urinary tract infections but I haven't seen my URO yet to ask him. And I'm not sure if this would even show up on a test. So many of those tests only detect massive amounts of imbalance ... I can handle the AZO better than cranberry juice and it's easier ... the regular AZO made my bladder burn ...

    I can go hours now without urinating ... my friends are shocked ... lol ...

    I wonder how many of Dr. Bell's patients were women and how heavy their periods were. I came up extremely low when I was peri menopausal and bleeding heavy. I was told I'd need a transfusion if I continued to bleed like that. Does his study say ?

    I'm not sure what to look for as far as low blood volume, but I can have blood drawn now without it hurting or my viens rolling so maybe mine's ok now ... I'm still a wimp though and have to lay down ... lol ... I salt load everyday but no more than the RDA of 2500 - 3000 ... any more makes me feel pickled ...

    I tried researching how blood is manufactured in the body but didn't get anywhere. I finally gave up researching this and decided that eating right and taking the supplements I could handle and needed was the best I could do ...

    tc ... Marcia

    Oh and I do all this and still have orthostatic intolerance. I've improved since I started taking essential aminos but not nearly enough ...
  4. kerrilyn

    kerrilyn Senior Member

    Sasha, it seems we are often thinking of the same things at the same time :)

    I'm planning on doing the drink = pee test too. I have always been like a camel, I don't drink much and I think one of the reasons is because I don't enjoy running to the bathroom every 5 minutes. For the longest time I thought 'I must have a small bladder', but that's likely not why. I've also noticed that when I urinate the toilet bowl water often stays clear - probably not a good thing. If I pee in a cup for a doctor it's yellow, so I've never been too overly concerned. I have a family history of Type 2 diabetes.

    I'd only heard of diabetes insipidus recently (Rich mentioned it on the forum) and I that got me thinking. The only thing is I don't have excessive thirst (at times I guess I do) but I think I ignore my thirst more than I should and I wonder if someone with diabetes insipidus could even do that? I seem to be peeing more frequently, like going and then going again shortly after and getting up in the middle of the night now, BUT only at certain times of the month.

    I also read about water intoxication recently, when I was reading about diabetes insipidus (I think) but can't exactly remember. That I seem to get, and possibly it's been another subconscious reason why I don't drink much fluid. If I drink too much fluid, I don't feel well. A few months ago, I had a pelvic ultrasound and drank massive amounts of water without peeing - it is torture on many levels - but the one thing I really noticed was how nauseated/dizzy I felt. Any thoughts on that?

    Xchoc: What is an AZO? Yes, I too think excessive bleeding is not helping any on these symptoms for me either.
  5. Andrew

    Andrew Senior Member

    Los Angeles, USA
    The Canadian Consensus document has a section with several approaches for orthostatic intolerance.
  6. biophile

    biophile Places I'd rather be.

    During the earlier years of symptoms, I noticed being thirsty a lot and often relished the sensation of drinking. However, after the illness changed course, I lost the sense of thirst to the point where I started getting dehydration headaches because I forgot to drink enough. There was also worsening of symptoms relating to blood flow (limbs feeling half asleep, cold intolerance, cold extremities).

    Around this same time I was reacting negatively to a course of intravenous EDTA chelation therapy. I wondered if my blood volume was reducing, because it literally felt like it was. Then the blood tests said haptoglobin was 1/3 of the minimum cut off point of normal (but no indication of a blood disorder) and bilirubin was slightly high (not a big deal). At the time I suspected this was either a sign of "functional" liver stress (the liver area felt weird), or the byproducts of my body reducing overall blood volume by breaking some of it down.

    I think those blood tests eventually returned to normal after a few months. I was still trying to go for regular walks so I doubt the above was just another consequence of that magical cause of all things "deconditioning". The newly acquired or worsened digestion symptoms (not IBS) caused a relatively rapid weightloss, so an alternative explanation is that the body was reducing blood volume for this reason.

    There was a brief stage of positive effects during the course of this therapy before the negative effects became overwhelming. It was delivered via a saline drip at least once a week, so perhaps the benefits were from the saline drip? Not sure why I reacted so negatively to it over time. Some may say it was "toxin redeposit", others may say "nocebo effect"? A few months later I wondered if the EDTA had induced a zinc deficiency. Over-exertion may have been another cofactor.

    The body is going to prioritise blood to critical systems, so can a reduced blood volume help to explain cold intolerance and partial numbness/tingling or coldness in the extremities? The body is obviously not perfect and doesn't always react in the best way, but perhaps the body has reduced the blood volume for a reason, to compensate for CFS.

    Some have proposed these type of symptoms are just the effects of elevated levels of circulating adrenaline, but this mechanism has not been proven. I doubt the severity of such symptoms in CFS patients will correspond to the same elevated levels of circulating adrenaline as would be expected in healthy people who experience similar symptoms in an "adrenaline rush". Think of how very unlikely it is that such high levels of adrenaline are present in your blood 24 hours a day! Unless adrenergic receptors have become hypersensitive to normal levels of circulating adrenaline?

    Although I like putting extra salt on food, I have not seriously tried the oral salt therapy. Does it have to be sodium based, can it also be potassium based, or does this counter-act the desired effect of the sodium? Does consuming large amounts of salt have consequences over time, or are these largely avoided if one has low blood pressure? Can too much salt disrupt absorption of other nutrients or cause gut disturbances?
  7. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA

    I've been helped by AZO, too. I don't think it means you have an infection. I would look into interstitial cystitis instead. (You can check out various websites to see if this might be true for you I don't have any specific ones to recommend, but found very useful info when I googled.)

    I think my bladder gets irritated (there are certain foods and drinks), and the pain or discomfort makes me need to pee frequently. Watching these foods (acidic and other) and taking AZO occasionally, helps it settle down and surprise, surprise, I'm not needing to live near a bathroom. What a relief. I can drink more water, and pee less frequently!

    For essential aminos, are you taking specific aminos, or a combination product? If you've already discussed this, please just refer me back.

    Grandma fly,

    I'm not finding dioralyte in the US. (I did notice they had a sugar-free version of it.) I'm sure there are equivalent products here. That's great if you can get it by prescription. (And congratulations. I'm so happy for you.)


    I'll check out the Canadian Consensus again. There is so much great information on these forums that I forget what I so want to remember.

    Thanks all for this discussion.
  8. richvank

    richvank Senior Member

    Hi, Sasha.

    In my hypothesis, the low blood volume in CFS is caused by central diabetes insipidus (not to be confused with diabetes mellitus). People with CFS do not produce enough antidiuretic hormone (vasopressin). The result is that the kidneys dump too much water into the urine, and the person becomes thirsty and drinks a lot of fluids, but never catches up with the loss, and thus develops low blood volume and the problems that go along with that (such as OH and POTS).

    The low secretion of vasopressin occurs because of glutathione depletion in the hypothalamus, in my view.

    To raise glutathione, it is necessary to correct the partial block in the methylation cycle.

    If you want to read more about this hypothesis or the treatment that is based on it, go to and click on CFS/M.E. and then on my name.

    I hope this is helpful.

  9. Sasha

    Sasha Fine, thank you

    Thanks, flybro - I wonder if this is anything like the electrolyte drinks that people mention elsewhere on the forum. I tried one of them yesterday (Gatorade, often mentioned) first thing before getting out of bed because I gather that that's what Dr Nancy Klimas recommends. It seemed to make me more and more thirsty! I have read on Elisabeth Rybak's blog Dr Levine's advice that that salt tablets are no longer recommended for OI because by putting a large dose of salt in the stomach causes it to draw water from the bloodstream; I wonder whether electrolyte drinks might do the same wheras salt with food wouldn't (because the food would slow absorption).

    I'll look into dioralyte, though, and will post on it if I try it.
  10. Sasha

    Sasha Fine, thank you

    Yes, we're marching in step, kerrilyn!

    I have never thought of myself as having "excessive thirst" but now realise that that's because I thought it meant "feeling intense thirst". I never feel intense thirst because when I start to feel thirsty, I drink! But then I feel thirsty again fairly quickly; so perhaps that's what is meant by "excessive thirst".

    Incidentally, I was shocked when I measured all this yesterday and realised that I had visited the bathroom to pee 17 times in the day! I really had no idea it was anything like that. I'd have guessed 8 or 10 if I'd been asked and I'd never have guessed at the volume either. It's like OI all over again - I've not recognised the main symptom and once I've measured the necessary stuff it's been a revelation.
  11. Sasha

    Sasha Fine, thank you

    Thanks Rich - I took a look at the refs but they're over my head, I'm afraid! In the UK we have to go first to our general practitioner (or "GP", a non-specialist doctor) and if necessary, get referred to a specialist for anything he/she can't handle. My GP would be unlikely to try anything unproven or controversial and also wouldn't refer me on to a specialist without being convinced it's a good idea. I appreciate your efforts to work up a sound theory, though, and your responsible attitude in recommending that people are supervised by a physician.

    UK people - has anyone in the UK run this by their NHS GP/specialist? If so, what reaction did you get?
  12. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    Ionozed water

    I attended a meeting with my doctor about ionized water. He felt that if it works as they claim then we wouldnt need the extra fluid. I have only talked to one other that has tried it. If you can find a place that sells the machines they may give you as much water as you wish so that you may try it out. You would have to get the water everyday. The gal that I found here is over an hours drive away, otherwise I would be giving it a try. Has anyone tried it?

  13. potsrecovery

    potsrecovery Guest

    Hey Sasha
    Perhaps a campaign to increase blood volume may be most effectively waged on multiple fronts. If we just focus on salt and fluids we could be counteracting that measure with, for example, poor diet choices such as foods and drink which are diuretic (cause you to lose fluid). Some of the fronts I am aware of are:
    -salt with diet
    -diet limiting diuretic foods and foods high on glycemic index
    -elevating head of body when sleeping
    -orthostatic exercising - a conditioned body sustains blood volume better (see Dr. Levine et al reseacrh)

    Happy Easter!!
  14. Dr. Yes

    Dr. Yes Shame on You

    Hey glenp,

    Not judging this one way or another at the moment, but the ionized water thing sounds highly questionable to me.. So just beware of snake oil..
    heyitisjustin likes this.
  15. Lesley

    Lesley Senior Member

    Southeastern US
    Caffieinated beverages also have a diuretic effect.
  16. creekfeet

    creekfeet Sockfeet

    Eastern High Sierra
    A couple of weeks ago I had a pelvic ultrasound and drank so much water I was nearly in tears by the time I was checked in to Imaging. The ultrasound tech started on me and I was still biting back tears. All this time my sister, who accompanied me for driving help and moral support, was telling me that I could do it though I was saying I couldn't. She had had the same test several times before, and she got through it fine. So I should be able to. Well, I wasn't, and finally the ultrasound tech said I could go empty my bladder halfway. Halfway? That was difficult but I managed to pee a while and then stop, though I still felt full. Got back on the table, ultrasound began again and the tech said that my bladder was still actually very full and before had been too full! So part of the reason for my extreme discomfort might have been that I drank more water than necessary. But now, looking at your story, I'm thinking that part of it might also have been from the low blood volume problem. I too was dizzy and nauseous. It wasn't just needing to pee bad, it was feeling truly terribly ill.

    So... low blood volume... we drink more water to try to increase blood volume... the volume of liquid in our bodies increases but it's not like we get an immediate increase of blood cells with that. Instead we must be getting more diluted blood, eh? Does that make any sense?
  17. Sasha

    Sasha Fine, thank you

    Sorry to hear you had such an awful time, Creekfeet. I'm glad you had your sister there for moral support!

    I don't think we're getting diluted blood - my understanding is that if you have OI as part of your CFS you are likely to have low blood volume but also might have a problem with retaining extra water that you might drink to try to increase your blood volume - so even if you drink a lot, instead of the water rehydrating your body (i.e. moving into your blood) it goes quickly into your bladder instead which means you just pee it straight out again.

    The big question is: what can we do to retain more fluid in our blood and does it actually help our health if we do? I think this is a more complex question in OI within CFS than in straight OI; or maybe for some people with OI within CFS (since there are lots of different types of both OI and CFS).
  18. Sasha

    Sasha Fine, thank you

    Hi potsrecovery, Happy Easter and thanks for posting!

    I hadn't been aware of diuretic foods so looked it up here, which says:

    "Salt and Sugar retain water in the body [...]

    Some diuretic foods include

    Cranberry juice
    green tea
    brussell sprouts
    raw onions

    [...]There are also many herbs [...] that act as diuretics.

    These diuretic herbs include coffee, green tea, dill, licorice, rosemary, mint, and probably many more."​

    This says that sugar helps retain water but high GI foods are sugar; help!

    I've raised on another thread a question about whether raising the head of the bed is safe if you are hypotensive supine, but no-one has been able to answer (I'm awaiting an answer from my general practitioner but would be surprised if he knows). I tried lying on a tilted mattress for a few hours and felt very ill. I'm now trying it in small doses to see if I can build up.

    I wish Dr Levine would do a study specifically on OI people who also have CFS - I think we have some specific biological issues (perhaps within certain CFS subsets) such as diabetes insipidus that complicate the issues and PEM would make his reconditioning programme out of reach for most of us. I'm trying to implement some of his programme very, very gradually. I'm looking forward to seeing it in print when his publication comes out in the summer.
  19. camas

    camas Senior Member

    This may belong in the compression garments thread, but I've noticed that when I'm wearing the g-suit that I don't feel the need to run to the bathroom evey half hour as usual, which seems counterintuitive especially given the tight girdle pushing on the abdomen and the fact that I have mild interstitial cystitis.

    (I don't want to give the impression that the g-suit is some kind of magic bullet, but I have found it helpful when it comes to anything that requires standing in one place. I'm mostly using it in the kitchen.)
  20. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    TY Dr Yes

    Thank you for the link. The rehab physician that I see is interested and open to anything that may help us. The therapy place that we went to for the meeting has the machine there, and anyone that is interested can go and get their water daily for free and try it out - I would give it a 3 week trial if I had something close by - and apparently for us it would need to be fresh daily, not any longer, so a difficult thing for us to try unless we had someone pic the water up for us daily


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