1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Did You Have Yourself a Crashy Little Christmas?
Jody Smith may have dodged a holiday bullet this year. She's hoping. Only time will tell. How did you fare?
Discuss the article on the Forums.
  1. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    As stated previously my HHV-6 titers are 1:1280 and my doctor gave me Valcyte about 7 months ago but I never took it because of the side effects Well I went ot another MD today and she gave me acyclovir for my HHV-6 titers. I guess she had no clue as from what I read on here it has effect on HHV-6 virus:mad::(. I believe Acyclovir is Valtrex, correct? Thanks
     
  2. Ema

    Ema Senior Member

    Messages:
    3,512
    Likes:
    4,010
    Midwest USA
    No, acyclovir is different though they are related. Valacyclovir (Valtrex) is the prodrug to acyclovir.

    I took acyclovir for a while and it didn't do much for me. I have done much better with Valtrex personally.

    I understand your concern over Valcyte but I think that is a good option for HHV6 as long as you monitor your liver function. If I hadn't ended up on cidofovir IV, I would have done Valcyte for my EBV/HHV6/CMV infections for sure.

    Ema
     
  3. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA

    No, it's a different med from Valtrex (valaciclovir), but it's activity is low for beta herpes viruses (CMV, HHV-6, HHV-7). It is most effective for alpha herpes viruses (oral and genital herpes, chicken pox), next for gamma herpes viruses (EBV) and least effective for betas. Might be helpful in keeping HHV-6 suppressed, but it looks like it's not all that effective for treating active infections. Did your doc have a rationale for using it as opposed to one determined to be more effective for HHV-6? If you don't want to take Valcyte, another -- but less effective -- antiviral like acyclovir or Valtrex might be your next best bet.
     
  4. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    Sorry everyone it is Valacyclovir I have.....ooops
     
  5. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    Well, if you don't want to take Valcyte, Valtrex is an alternative, although much less effective. I hear that Famvir (famciclovir) is working a little better for HHV-6 than Valtrex. That's just anecdotal evidence, though.
     
  6. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    Thank you...guess it can't hurt to try and if no effect than I guess I will try the Valcyte
     
  7. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    You do know it's not likely to work quickly...?
     
    Ema likes this.
  8. Ema

    Ema Senior Member

    Messages:
    3,512
    Likes:
    4,010
    Midwest USA
    I took Famvir for about a year before acyclovir. Valtrex was by far more effective for me but I'm sure we all have slightly different things going on. I think you could even mix Famvir and Valtrex. I think some members of the forum have done this...

    I still think Valcyte is probably the better choice if it was me.

    Ema
     
    SOC likes this.
  9. jimells

    jimells Senior Member

    Messages:
    548
    Likes:
    948
    northern Maine
    What length of time might be reasonable for a trial of Valtrex? I've been taking it for six weeks (I know, not very long) and I haven't noticed any improvement yet.
     
  10. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    I wouldn't give up on an antiviral until I hadn't noticed anything for at least 6 months. Your antibody titres are not going to be a good measure of infection because your body keeps producing antibodies long after the active infection is gone.
     
  11. Ema

    Ema Senior Member

    Messages:
    3,512
    Likes:
    4,010
    Midwest USA
    I think it also depends on the dose. If you take a lower dose, it may take longer to notice improvement.

    I agree with SOC, at least 6 months, possibly even up to a year.

    Ema
     
    heapsreal and SOC like this.
  12. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    My dosage on the bottle says 1 gram tablet. I have never seen that before. Is that a high dosage?
     
  13. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    My 21yo daughter takes 4 grams daily to keep herpesviruses suppressed. I, being.... um.... larger, take more. One gram of Valtrex is unlikely to do anything whatsoever for a chronic HHV-6 infection. A high dose might be of some help.

    If you really want to get rid of a chronic HHV-6 infection, Valcyte or maybe Cidovir, is what you need. Famvir is said to have some effect.

    1 gram is a low dose of Valtrex. It is often used to keep genital herpes suppressed in immunocompetent patients.
     
  14. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    Wow SOC......That's some food for thought. Okay I agree with you about the Valcyte but I also have reservations and say to myself what if my symptoms are not because of an HHV-6 infection and I go on this risky medication for nothing?
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,309
    Likes:
    6,384
    Albuquerque
    mstrlucky74

    There is also a safer, oral version of Cidovir that is in trials. It is supposed to be fast-tracked and (maybe) available in a year? (we hope!) You can look up CMX001 to read about it.

    Sushi
     
    Sparrowhawk, SOC and heapsreal like this.
  16. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    Neutropenia and liver problems are reversible if caught in time. That is why doctors who understand Valcyte require you to have blood tests every 4-6 weeks to check for those problems. If your WBC or liver enzymes start to go out of range, you just stop taking the meds.

    Some people feel awful for a period of time with Valcyte. I was one. It was like a really bad ME/CFS crash for about 10 weeks. But once it was over, I felt LOTS better than I had in years. My uncle and daughter had no problems with Valcyte at all. I'd take Valcyte again, bad stretch and all.

    Valcyte isn't as scary as a lot of people seem to think it is. It also isn't innocuous. It's a powerful medication for a serious infection. You have to be prepared for the possibility of having a bad stretch, or having to quit (because of side effects) before it clears the active infection. :)

    If you have an active HHV-6 infection and your infectious disease doc or ME/CFS doc thinks you need Valcyte, then you have a nasty infection that's doing a lot of damage all on it's own. I would think you'd want to clear that even if it doesn't take care of all your symptoms.
     
    jimells likes this.
  17. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    Thanks SOC.... A lot!!! Thing is my doc actually thought it wan inactive but he actually went to school withh doc Montoya and after i pleaded with him he very reluctantly gave it to me. My road block is even though my hhv-6 titer are 1:1280 i may not have an active infection and my symtoms may be due to something else.

    BTW..my white blood cells have always been about 3.1 to 3.7 all my life.....that is a bit out of range.
     
  18. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,489
    USA
    There's no way to be absolutely sure that your symptoms are due to any particular thing. Sometimes you have to do the best you can with the limited information you can get.
    That could be enough to stop you from taking Valcyte. Probably a good thing you're not sure you need it or want to take it. ;)
     
  19. jimells

    jimells Senior Member

    Messages:
    548
    Likes:
    948
    northern Maine
    A six month trial of an antiviral that probably won't work doesn't make a lot of sense to me. I've already been sick for 10 years - I don't know how much longer I can tolerate living this way. I'll call the doctors this week and discuss the idea of changing to Valcyte or at least adding or changing to Famvir.

    Thanks for the very helpful posts on this thread.
     
    SOC likes this.
  20. mstrlucky74

    mstrlucky74

    Messages:
    55
    Likes:
    7
    WHo said it WON'T work?
     

See more popular forum discussions.

Share This Page