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Just got diagnosed.

Discussion in 'General ME/CFS Discussion' started by JBoneske, May 22, 2018.

  1. JBoneske

    JBoneske

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    Been a long haul but a year and a half into this fun time and ruling everything out I’ve just been diagnosed with CFS.
    Not sure how I feel.
    Dr wants me to try valtrex and see what happens.
    I guess it helps to finally have an official diagnosis psychologically. As you know this really sucks but at least knowing helps somewhat.
    How much is to be determined I guess.
     
    Mel9, RebeccaRe, alkt and 1 other person like this.
  2. denlander

    denlander

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    The late DR Lerner , a physician not a psychologist used Valtrex as a treatment for many years. Some patients were helped. We were unable to reproduce Dr Lerner's results but the side effects are minimal if the patient is not allergic.
    The thought is that valtrex may combat a virus that is afflicting the patient and their immune system.
    Derek Enlander MD
     
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  3. JBoneske

    JBoneske

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    Interesting.
    Interesting. I’m really not ecpecting this to work but I’ll try it. I’ve read that it works if you have an active EBV virus going on. I have EBV as does 90% of population does but mine is not active.
    Another thing to study up on before I get my hopes up.
     
    alkt likes this.
  4. JBoneske

    JBoneske

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    Well my insurance isn’t going to cover Valtrex. It’ll be $731 for 90 pills. Would I be better off not even doing this with inactive EBV anyway?
     
    alkt likes this.
  5. JES

    JES Senior Member

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    Wow, that's an insane price, nobody in Europe pays this much for it. Are you sure there are no cheaper generic versions available? Also you could simply take acyclovir which is usually much cheaper, the only downside is that you need to administer it more frequently and with a higher dosage than valacyclovir.

    Valtrex is also active against VZV, HSV-1 and 2, so there's a chance it might work even if you don't have active EBV. Also the definition of "active EBV" is different depending on which doctor you ask. Most non-CFS doctors would consider nearly all EBV antibody results as inactive and indicating past infection. The criteria of active EBV according to some prominent CFS/ME doctors is discussed in this treatment roadmap:
     
  6. Timaca

    Timaca Senior Member

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    You could consider investigating why your insurance won't cover the Valtrex. Sometimes a few questions and some persistence will get you what the doctor has ordered. It's worth a try. I've had success doing that.....
     
  7. JBoneske

    JBoneske

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    Ok.
    What’s your success?
    Thanks
     
  8. Timaca

    Timaca Senior Member

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    I argued with my insurance company over covering the IV rocephin I had been prescribed and after a long battle it worked.They covered it.
     

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