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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Oxygen and saline- for symptom relief to be added into the Primer for ME

Discussion in 'Action Alerts and Advocacy' started by Fred1234567, Jul 26, 2012.

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Do you agree that oxygen and IV saline should be added to the IACFS/ME Primer?

Poll closed Feb 26, 2013.
  1. Yes- I have benefited from oxygen and IV saline and would like to see these treatments in the Prime.

    27.3%
  2. Yes- I have benefited from oxygen and would like to see this treatment in the Primer.

    0 vote(s)
    0.0%
  3. Yes- I have benefited from IV saline and would like to see this treatment in the Primer.

    18.2%
  4. Yes- I have not tried either treatment but if it helps some patients it should be added to the Prime

    54.5%
Multiple votes are allowed.
  1. Fred1234567

    Fred1234567

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    Hi like many ME sufferers I am pleased with the IACFS/ME Primer it is a great step in the right direction. I was surprised however that the benefits of oxygen and IV saline which help many people with severe ME were not mentioned as treatment options.

    I am bed-ridden with severe ME and find both oxygen and IV saline very helpful before them I could not talk/walk or concentrate at all. Now I am able to do a few wee things in my bed a little bit of typing etc..

    Has oxygen and or saline helped you? Do you think these treatments should be added to the Primer?
     
    Xandoff and ggingues like this.
  2. taniaaust1

    taniaaust1

    Messages:
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    5,184
    Sth Australia
    Thanks greatly for starting this. I havent got to try IV saline (so had to vote for the last result) but Im so really needing it as I completely collapse while out often (low blood volume to my brain when standing) even thou Im on Florinef. Recently I collapsed onto a roadway while trying to cross a road and wasnt able to get back up, so this situation is dangerous. I never can leave my house alone due to this.
    Saline IVs could really change my life if I could get a doctor to agree to them.

    Getting these things added to the primer may make quite a difference to many who cant currently get these therapies they may need. It woulld help doctors to at least consider them.

    It may also help some of the bedriddens, to be able to get out of bed!!!, so important to be added to that primer so it can cater for all severity of ME/CFS.

    Im not sure about the oxygen therapy thou as Dr Cheney used to talk about "oxygen toxicity" in ME patients. .. but if its helping some, it should be considered for the primer too so patients who it may help, may get an opportunity to trial it if they wish to do so.
     
  3. Fred1234567

    Fred1234567

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    I read Dr Cheney's comments on oxygen toxicity in ME patients but that is completely the opposite of my and many other patients experiences. Like all ME treatments what helps some does not help and or may harm others.

    In contrast I've had horrendous reactions/relapses due to conventional drugs eg amilytripline and endronax.
     
  4. Xandoff

    Xandoff Michael

    Messages:
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    Likes:
    184
    Northern Vermont
    Fred1234567

    Good luck with your improvements. I suffer from Chronic pain in my spine and neck. My first symptom was pain in my neck that grew worse and was misdiagnosed for seven years. Thankfully I am not bed ridden, but I have days. Good luck and keep us posted.
     
  5. Xandoff

    Xandoff Michael

    Messages:
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    Likes:
    184
    Northern Vermont
    Hi ALL,

    Has anyone used a Oxygen and Saline infusion for chronic pain? It seems intuitive to me that this would be helpful for my chronic pain. Any advice or experiences would be appreciated. I think my CFS ME specialist who I see every four months (360 mile round trip) would consider giving me an infusion if I had the details. Currently taking GcMAF.
     
  6. taniaaust1

    taniaaust1

    Messages:
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    5,184
    Sth Australia
    A less then month trial of amilytripline left me with damage (as it slows peristalis) . I had to see bowel specialist and almost needed surgery (prolapsed bowel) due to what that amilytripline did and now are on permanently on laxatives due to it.

    So I agree.. for some of us.. quite possible these other things may be less harmful then some of the other things often recommended for us. The success of saline would depend on if someones blood volume is low (Id think it also would be good in those who have issues with dehydration due to various ME reasons) and what symptoms these things are causing. There needs to be lots of consideration on the whys of the symptoms.
     
  7. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,184
    Sth Australia
    Saline IV is usually used for OI. If your pain was due to OI stuff say Headaches due to POTS.. it then could help something like that.
     
    Xandoff likes this.
  8. 2tired

    2tired

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    0
    Pecatonica, IL
     
  9. 2tired

    2tired

    Messages:
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    Likes:
    0
    Pecatonica, IL
    Hello, I am new here and what brought me to this sight was I am researching Oxygen or IV therapy. I found that after having my throat stretched , which is an out-patient surgery that I felt really good after. I have had 3 so far and every time time I have felt so good. Let me tell ya radiation and chemo was horrible with having CFS. My sisters and I figured it had to be the oxygen or IV but after coming upon your website I guess it is the both of them. Now my worry is how do I manage to get that type of treatment? I have had CFS and disabled because of it since 2008 and find it so frustrating to get any type of treatment that is out of the norm. Why do Dr.s not think that we should have the right to have a life to enjoy. Boy with cancer, when I at first refused treatment because, I was kind of relieved not to have to suffer anymore they were all over me wanting me to change my mind but, with CFS they just kinda send you off like Oh well we can't give that to you for what you have. By the way it was my mother that made me change my mind.
     

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