Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Water the only cure

Discussion in 'General ME/CFS Discussion' started by fjack1415, Nov 1, 2014.

  1. fjack1415

    fjack1415

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    Puerto Vallarta, Mexico
    The only time I went into complete remission was when I made a serious attempt to rehydrate. I cut down on coffee (no more than three cups a day) and made sure to drink approx. two quarts of water a day. Within two months I was symptom free. Unfortunately I had a work problem (my management at NASA had decided to get rid of me) that caused me to go into several grueling work cycles that resulted in yet two more relapses and I have never again gotten to the level of health I enjoyed for that short time in the fall of 1992.

    I remark that I was very dehydrated from years of alcohol abuse and drinking huge amounts of coffee (22 cups a day). I was already two years sober and two years into the CFS (which started overnight following several months of a protracted pneumonia) when I made the decision to try to drink enough water to maybe make a difference. I may not have had the determination to do this without the support of Dr. Batman-Gehlij, an Iranian physician with a published book on the essential role of water in the human body. (When I started to drink coffee again because of my career crisis he fired me!)

    Later, in 1994 following the prescriptions off a specialist in ME/CFS I took loads of supplements, vitamins, amino acids, colloidal silver, injections of royal jelly you name it but all this was as nothing compared to the restorative effect I had gotten from simply rehydrating. (Well a summer of a great romantic relationship with a lot of "bedrest" was key too in this recovery.)
     
    Last edited: Nov 1, 2014
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  2. adreno

    adreno PR activist

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    Water isn't a cure for anything, except thirst.
     
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  3. fjack1415

    fjack1415

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    Puerto Vallarta, Mexico
    The only time I went into complete remission was when I made a serious attempt to rehydrate. I cut down on coffee (no more than three cups a day) and made sure to drink approx. two quarts of water a day. Within two months I was symptom free.

    I was encouraged to try this by Dr. Batmanghelidj an Iranian physician who has devoted his life to studying the physiology of water in the human body. See his web site http://www.watercure.com/

    Unfortunately I had a work problem (my management at NASA had decided to get rid of me) that caused me to go into several long grueling work cycles that resulted in yet two more relapses and I have never again gotten to the level of health I enjoyed for that short time in the fall of 1992.

    Later, in 1994 following the prescriptions off a specialist in ME/CFS I took loads of supplements, vitamins, amino acids, colloidal silver, injections of royal jelly you name it but all this was as nothing compared to the restorative effect I had gotten from simply re-hydrating. (Well a summer of a great romantic relationship with a lot of "bed rest" was key too in this recovery.)
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Interesting title.
    So glad you felt better from rehydrating. No doubt being dehydrated can make one feel unwell.
    With regards to water and ME it can be an issue with people experiencing POTS for sure. But too much water without replacing electrolytes can have serious health consequences. Also, as per my experience of ME it comes with the need to pee about a dozen times a day. I can't maintain hydration simply by drinking more water.

    Since you've had relapses where repeating the water cure had no effect I think it might be possible to look at events as water improved health issues (due to alcohol coffee consumption?) that made you initially feel better but the underlying illness of ME did not improve but got worse over time. And yes it can be a crap shoot when downing supplements. Especially without a lot of thoughtful research and setting up a system for personally testing your reaction to the things you try.

    There are so few Dr's prepared to take this illness seriously and who are willing to try promising treatments. We are left on our own.
    Here you will find many threads on a variety of topics related to treatment protocols that have been tried. But it will take a lot of research on your part to learn what might be useful to try given your symptoms and how you ought to go about trying things for best effect.
    Good Luck.
     
  5. fjack1415

    fjack1415

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    Puerto Vallarta, Mexico
    I believe were it not for my work at NASA (I was a scientist there) I would not have suffered any more relapses and would have remained symptom free. When I mention grueling work spates, try three months of 18 hours a day 7 days a week. After that I was in bed for a month or more. Re: alcohol. Ironically, I got CFS at about the same time as my very last relapse on alcohol. I had quit (I am an alcoholic) in 1988 but it took another 21 months of occasional slips to quit for good. My last drink was in March 1990 just one month after CFS symptoms began. These began overnight following a several month long bout of pneumonia.

    With all the work related relapses I went down the tubes with more than CFS. My adrenals were shot. I had mycoplasma infection. My brain chemistry was screwed. I got a cellular potassium insufficiency problem. I was really beat up.

    Of course you must have salt too to go along with the water! I believe there is too much emphasis on reduced salt in the establishment press. Not less salt, but more water, that is the problem. And better salt, Like real sea salt. (Yikes, here in Mexico they do not fluoridate the water, the fluoridate the salt!)
     
    Last edited: Nov 1, 2014
  6. fjack1415

    fjack1415

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    Puerto Vallarta, Mexico
    We are composed principally of water. It has many physical states depending on how it is functioning in the body. It is critical to homeostasis. No water you die. So exactly how much water do you need? Just when you are thirsty? That is OK if you are a kid, but we tend to lose our thirst signals as we age. I aver the entire elderly population is dehydrated and suffers many many diseases as a consequence. But the drug companies are not about to tell people this. No bucks right now in tap water.
     
  7. Kina

    Kina

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    And when you re-hydrate and still feel like crap, what accounts for that. People with ME are not merely dehydrated. :(
     
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  8. fjack1415

    fjack1415

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    Puerto Vallarta, Mexico
    I did not feel like crap. I was completely well after re-hydrating Please read what I wrote on subsequent relapse. I worked 18 hours per day 7 days a week for three and a half months with, of course, lots of coffee again lots of stress again, and less water again. Were it not for this catastrophe in my career I have no doubt I would still be well today. I never meant to imply CFS was a result of being dehydrated; but in my case I am pretty sure that dehydration was among the several components in the overall etiology of my CFS. But it also needed the earlier EBV infection I believe and and the long bout of infectious illness (pneumonia) for the condition to kick in, which it did overnight. I felt I should report on my case and so that others may benefit. It is yours to take or leave.
     
  9. adreno

    adreno PR activist

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    Dehydration is not a disease, ME/CFS is. Water does not cure diseases.
     
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  10. Kina

    Kina

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    I wasn't talking about you. I was talking about people with ME keeping themselves adequately hydrated, yet still have the same symptoms. Why would water intake put you in 'remission'? What is the biological explanation for that because the body is a complex thing that requires more than water to survive? Does drinking adequate amounts of water only work for ME or other diseases too? Maybe it would better to have a different thread title that reflects what you are trying to say more accurately because it definitely sounds like you are suggesting water is a cure for "CFS". If that were true we would all be well. The truth is that like adreno said hydration cures dehydration, not disease.
     
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  11. JAM

    JAM Jill

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    That generally goes away after a few days. The analogy I have heard is that your body is like a sponge, if it is dry water just flows over it for a while as the tissue slowly hydrates, then once it is damp it absorbs water. Not sure how true that is, but it has helped people I know stick with it past the peeing every 10 minutes stage. The general rule I follow is 1/2 an ounce of water per lb of body weight. So at 120 lbs. I drink at least 60 oz of water a day. I think that would decrease with a person who is considered morbidly obese though.

    And I agree, dehydration does not in any way cause ME/CFS, but being hydrated does help with overall health. Water intake is one of the things I measure carefully along with fiber intake and exercise to determine what is enough, and what is too much. We all have to find what works for our bodies, even healthy people. Having a disease makes it so much trickier.
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    I routinely drink more water now because of POTS symptoms. I have been doing this for a few years. I have yet to stop peeing about once every hour and a half. That includes using an electrolyte drink (off and on as I can afford it).

    I agree that being hydrated is important but it doesn't seem to want to co-operate and as a result I not only have the POTS which is somewhat improved with an electrolyte drink but I have sjogren's like symptoms. But then my ME came about slowly over a very long time.
     
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  13. JAM

    JAM Jill

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    That would be upsetting. I hope you can find a solution soon.
     
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  14. Valentijn

    Valentijn Senior Member

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    Prior to getting ME I almost never drank alcohol and literally never drank coffee. I drank lots of water. And I still got sick.

    Probably because ME has nothing to do with dehydration.
     
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  15. SOC

    SOC Senior Member

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    Have you looked into hormone deficiencies such as low aldosterone? Fludrocortisone to replace aldosterone can help keep more water in your blood so you don't just pee out all the extra electrolyte water you drink.
     
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  16. SOC

    SOC Senior Member

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    This sounds like POTS aggravated by self-imposed dehydration from over-consumption of alcohol and coffee, not ME/CFS.

    POTS can be a very problematic condition, as can dehydration. Treating either (or both) can relieve some symptoms if a person with ME/CFS is also suffering from POTS, as many of us do. Neither treatment cures ME/CFS.
     
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  17. leokitten

    leokitten Senior Member

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    I'm not trying to be against you but I do also wonder if you really have ME/CFS and not just POTS or something else caused by your lifestyle.

    Proper hydration as a treatment will make almost no difference with real ME/CFS, I've tried it as well as many other people.
     
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thanks for the suggestion @SOC I don't know anything about most medical topics and what medications might be useful. Whenever I read about this stuff now it goes in just fine (I understand it) but I never retain it. The possible exception being neurological info because I've had epilepsy for years and so have read neuro previously as a result and so some of that at least sticks.

    Mostly I rant. I waited way too long before seeking help because I had gone to Drs for various symptoms as they appeared and over time felt that nobody was going to help and we were constantly moving from country to country city to city. Now I'm not able to get to my Dr. and the last time I saw him I couldn't even convince him to let me try Low Dose Naltrexone. I do need to get to him somehow though as my husband has managed to get the paperwork for a disability claim for me. Right now I'm not even in the city where my Dr is as I don't have a home to go to (I'm with relatives).

    If I do get to see my Dr. though I will make a point of mentioning hormone deficiency.

    As it happens, as a result of this thread I decided to push water today. I wanted to see if I could get any small additional benefit if I drank more. It's very hard for me to do. I don't know why this is but it's always been hard for me to drink very much and as idiotic as it sounds trying to drink more practically makes me gag.
    I now have a headache, something I've managed to do without for some time now.

    Anyway, that's way more info than the question asked for. I'm not good at sharing but am in some kind of mood.
    I blame it on the water. :D
     
  19. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    That has actually happened to me. I had stomach inflammation at the time, but I imagine there could be a number of causes.
     
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  20. Mr. Cat

    Mr. Cat Senior Member

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