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Saline therapy

Discussion in 'General Treatment' started by Elizabeth3333, Sep 14, 2018.

  1. Elizabeth3333

    Elizabeth3333

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    Greater NYC area
    Anyone have real success with IV saline? How often were you doing it? For how long? I'm looking for real advice and stories, thank you!
     
  2. drob31

    drob31 Senior Member

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    Before I ever had CFS, I had some stomach issues and I could keep food down, and the saline IV was like the most super charging thing I've ever felt.

    But I bet it's related to increasing blood pressure and blood volume for myself.

    I probably have hypovolemia.
     
    Judee likes this.
  3. BlahBlahBlah

    BlahBlahBlah

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    Sorry old thread but was just searching saline. I’ve been on it daily for 3.5years, best thibgthats ever happened to me and has helped me so much. If I don’t have it within 2 days I’m really bad again
     
  4. Elizabeth3333

    Elizabeth3333

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    Oh wow, that's great to hear. Do you have a port or are just doing normal ivs? How much have you improved?
     
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Doing IV saline in ME CFS is not a long term thing sadly. If you ask Dr David Bell, he admits patients feel a lot better but of course, pee it all out, until they have it again and again, which knackers you veins eventually.

    I'd also not get this done in hospital by sleepy staff as hospital based infections are a real risk, including at home if you're immune suppressed. Patients can change their own bags, but all it takes is one slip of concentration and you infect the port when you're putting a new line in, and that's it infection starts.

    IV sounds like a great treatment, but as a long term option is simply not viable. Like Dr Bell says, for some reason, our bodies need us to be in this low blood volume state. Hopefully someone will work out why one day, as whatever it is, it's not obvious why subsets of ME CFS patients become so crippled by this awful 'effect' of their illness, having no circulation to go around to sit or stand upright.

    Quote here on Phoenix Rising regarding IV saline:
    ''It is the most effective treatment for severe ME/CFS that I have found in my 21 years of looking - Dr David Bell''

    Source: https://phoenixrising.me/treating-c...w-blood-volume-chronic-fatigue-syndrome-me-cf


    Cort has an interesting post on it here, on his forum worth reading:
    https://www.healthrising.org/forums...blood-volume-in-chronic-fatigue-syndrome.234/

    Blood volume in ME: Invest in ME - Dr David Bell PDF document
    http://www.investinme.org/Documents/Research/David Bell Blood Volume in ME Sep 15.pdf
     
    Last edited: Oct 19, 2018
  6. BlahBlahBlah

    BlahBlahBlah

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    I have a central line. I left the house on average once a year, I now go on holidays (but only to the same couple of places which involve not long times in cars), can spend so much more time sitting in my wheelchair, more alert and feel so much better. I have 3 holidays planned in the next 4 months but I will be in bed in the dark inbetween can don’t manage all day out of bed when on holiday but after over half my life (literally) being confined to bed it’s been amazing and I feel so much less ill (but still feel rubbish but not like I’m dying all the time)
     
  7. BlahBlahBlah

    BlahBlahBlah

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    My doctor thinks it’s not to do with just increasing blood volume but the sudden stretch on the baroreceptors by the sudden increase in blood volume that does it, not the actual blood volume itself. It makes a lot of sense when I read what the singnals sent from the baroreceptors send when I compare it to the symptoms.

    I don’t have a port but a central line. As you say it’s dangerous but I and my parents manage it at home (or out, I’ve connected up in all sorts of places). It’s not something to be taken lightly but after over half my life was spent bedbound it’s well worth the risk
     

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