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New.. Need help need to vent.

Discussion in 'General ME/CFS Discussion' started by Jonjay, Aug 17, 2013.

  1. RedLineBoy

    RedLineBoy

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    Sushi, Does it matter which antibody OP has? Regardless, exposure occur sometimes during his life. So with that said I personally do not think which test was order really helps in order to determine treatment path.

    Any MD will tell you that no treatment exist for such viral infection. In a way they're so right. You can't get ride of it but you can treat the symptoms of it. Believe it or not that is what everyone on this board is doing, treating symptoms not curing them.

    I hate to break the bad news to you but you WILL not feel yourself again as you once did in your childhood. CFS is no joke and over time it gets worse and worse for some and for some it just stays the same.

    This is coming from someone who is dealing with this nonsense disease for over 11 years in mild form. You can still walk, talk and function as longest you believe in yourself.

    I believe in myself and I will not let CFS control mylife. I will control CFS.

    I recommend that days you feel off, take nuvgil or provigil whatever makes you feel good. Also start taking L-Tyrosin, CQ10, Acetyle L Carnitine and Alpha lipoic acid.

    This will give your body the power it needs to fight EBV and help your body protect its self from this disease.

    How is your cognitive?

    I don't mean to sound harsh but this is the realty.

    Thank you
    Redline
     
  2. RedLineBoy

    RedLineBoy

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    Oh, I heard Olive Leave Extract seems to kill herpes virus but I have not found reliable study. I'm sure someone here can say something about Olive Leave.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    RedLineBoy wrote:


    Not only treating symptoms but putting viruses into into a "dormant" state and reducing or eliminating the titers for active infections. This does seem to need maintenance though.

    Many are also killing off bacterial infections, improving immune function, gut function etc. So I would not agree with the statement that
    Yes, it is the reality for many who are not getting appropriate treatment, but it is not the reality for everyone.

    Yes, the type of antibody does matter.

    Sushi
     
    beaker and taniaaust1 like this.
  4. RedLineBoy

    RedLineBoy

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    From experience one tends to feel fatigue despite viral infection being undetected. Once your expose to one of the symptoms your brain plays a trick of symptoms regardless if infection is active or not.
     
  5. taniaaust1

    taniaaust1

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    You said you have had this illness for 11 years in mild form, from your post it comes across that you have very little understanding at all of ME/CFS presenting more severely which it does for many of us. Many of us CANT walk, talk or function at times and it is nothing whatsoever to do with believing in ourselves. I have issues just looking after a cat (I may of killed one in the past due to not being able to look after my pet due to being so ill).

    I have to have gov home support as I cant even look after myself and cant even leave my house alone due to collapses I have when Im over doing it or on my feet too long (which isnt at all long), this is nothing whatsoever about not believing in myself but rather due to the damage the ME/CFS has done (possibly viral damage?) to my autonomic system etc. I have to be pushed in a wheelchair by supportworkers when we go out shopping.

    Unfortuately thou my ME can be controlled some (by highly restricting activities), it cant truely be all controlled as such as there are things in life one NEEDS to be doing (eg eat food, get some meals etc) which for some may be overdoing it with their level of ME/CFS. If You can control your illness with your beliefs, it isnt what many of us here have.

    Your post is very out of touch to just how disabled many of us are (and its nothing at all to do with our thought patterns or "beliefs"). Some like yourself may be "fixed" or really helped by CBT but for many of us, that dont help at all as we have something different to you.
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    Great. Why don't you go tell that to terminal cancer patients, and some quadriplegics while you're at it. And maybe some advanced MS and Parkinsons patients.

    There is zero excuse for this sort of "mind over matter" BS. We are physically disabled due to a biological illness which effects different people to different degrees. Don't you dare extrapolate from your "mild" CFS to conclude that moderate and severe patients are somehow sicker because they fail to adopt the right mindset.

    It's disgusting enough when healthy people do it, and you should damned well know better.
     
    taniaaust1 and Sea like this.
  7. RedLineBoy

    RedLineBoy

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    You guys are misunderstanding me. I never said CFS patients can push their self out of situation with some mind trick. I know some people are just more sick than others. That is all I'm trying to say, nothing more.

    But we all do believe that onset of CFS is cause by viral infection.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This is one theory amongst many. So it isn't accurate to say that "we all believe" this, because the pathogenesis is complicated and there are a host of possibilities. There are probably complex combinations of factors that need to come together for a person to develop ME/CFS.

    Sushi
     
    Valentijn and rosie26 like this.
  9. taniaaust1

    taniaaust1

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    Nope. Many of us dont believe that at all. Most of us would probably say that CFS is possibly a mixed group of illnesses which may have various causes.

    ME thou may well be caused by a viral infection but I wouldnt even certainly say that, who knows it could end up being a bacteria or something else which can be transmitted. Your quote is no more then a theory.
     

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