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Im back from my GP visit. Was it worth it?

Discussion in 'General Treatment' started by snowathlete, Nov 1, 2011.

  1. snowathlete

    snowathlete

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    Background: I have ME/CFS, had it diagnosed for a couple of years, and had it at least a year before that. I had mono when i was a teen very very badly. I dont catch any colds or anything, as my immune system is ramped up all the time.

    I read about Dr Lerner and Montoya's research, first on PR, and then on their own site:
    http://chronicfatigue.stanford.edu/infections/herpes.html

    I went to my GP, to ask for tests on the Herpes viruses which i am sure i have at least one of, because of my background. And the possible co-infections. I explained the research and said that i would like to get Valtrex, or similar drugs to treat the Herpes viruses if i do not have a co-infection.

    She was okay on the whole and I think she was sympethitic. But there were also clear signs of sceptism and an NHS bred default to highlight the 'treatment' on offer at the ME Clinic (CBT, GET, and Pacing). I explained that i had tried all three but none helped make my condition any better, and that that wasnt a surprise to me because i have a physiological illness. She wasnt familar with the co-infections, and doubted that the NHS would test for them. But said she would look into it, and the Herpes tests. She said she would read what i gave her, which was a copy of the research, the experts involved, their treatments etc.
    I explained that i had researched many different ME 'treatments' but that this one really stands out and has been properly studied etc. I also fit the demographic and told her that.

    I expect that the end result will be some simple Herpes tests, but that i will have to get the other co-infection tests myself privately (does anyone know where i can get these done?) I will probably end up having to buy the drug myself, though i mentioned that some people in the UK are on these drugs by prescription!

    So, i have to sit and wait on that....what do you think?
     
  2. Sparrow

    Sparrow Senior Member

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    I'm in sort of a similar position, except am in Canada (and thankfully my doctor has not mentioned GET or CBT). I've been able to get my doctor's help in getting the viral and co-infection testing done, but I have to pay for it myself. I'm not sure whether or not she'll be willing to prescribe Valcyte for me if I do come back with the results I expect I will. But I'm hoping that somebody will, particularly with that Stanford stuff to be able to present to them. I know it shouldn't matter, but I think the Stanford name gives it more credibility. Or at least makes them more willing to listen than to dismiss it out of hand. Worth a try anyway, I think.

    I have largely given up on having medical support, testing, or treatment for the ME/CFS stuff that I don't have to pay out of pocket for. The information just hasn't trickled down to their level yet, and nobody wants to do things that aren't old standbys. Right now I'm just hoping I can get access if I AM willing to pay.
     
  3. snowathlete

    snowathlete

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    the injustice of having the illness has become as bad as the illness itself.

    when im well i am going to make someone listen and appologise. you just wait and see.

    i agree that the stanford heading helps, mind you, i still got the comment, "Im not sure i would want to prescribe a drug on the basis of some research done in the 'USA'"...
     
  4. *GG*

    *GG* Senior Member

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    What's their problem with the USA? Blind nationalism or is it just because they belong to a Union? I hope you gain your health back and can follow through on making your gov't acknowledge their blundering of ME.
     
  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi, ggingues, I doubt it has anything to do with the USA. I suspect its code for "I am not going to listen to anyone" which just happens to include USA researchers. Its a sign of adherence to dogma and out-of-date protocol. Its the bad side of tradition. This also world-wide, not just the UK - the adherence to "evidence based" medicine is about evidence that fits their viewpoint, there seems to be a bad case of avoiding any evidence they don't like. Bye, Alex
     
  6. snowathlete

    snowathlete

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    Couldnt agree more. I suspect that my GP was just paying lip-service to the idea, but i will get a letter or call in a week saying no.
     

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