Oh wow, that's great to hear. Do you have a port or are just doing normal ivs? How much have you improved?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
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)Oh wow, that's great to hear. Do you have a port or are just doing normal ivs? How much have you improved?
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''
Cort has an interesting post on it here, on his forum worth reading:
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