Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Dec 14, 2008.

  1. heapsreal

    heapsreal New Member

    Hi all,
    I have taken a 7 day course of famvir about 4-5 weeks ago and felt somewhat better but not sure if its just my usual up after being down, a week after finishing the famvir i started to feel headachy and glands started to feel sore, i let it go for 24 hrs with no change so I started the famvir again, it stopped the glands from hurting and the headaches and brain fog has improved but towards the end of the course I am sleeping alot more then normal(excessively), Im usually the insomniac cfs type. Aches and pains havent improved on famvir. Anyway Im after some advise from people who have experience with antivirals if they would look at my experience of famvir as working against my cfs. my cfs started with ebv and chickenpox. I have had some positive effect from inosine(similar to immunovir) but nothing lasting.

    Also looking at another course of doxycycline which helped a couple of years ago, especially with aches and pains which is driving me nuts at the moment.

    Previous blood tests show i have elevated lymphocytes especially cd8, cd3&4. Had another test just after first famvir course which i will get results soon from doc on next appointment. Using the lymphocyte subset test as a guide to how well treatment works.

    I think my main problem is its hard to know what is helping and what isnt because this disease is so variable.

    One more thing, antivirals are expensive here in australia and wondering if anyone has had success with using antivirals in a pulsing dose like 2 days on and 2 days off, or 1 week out of every month etc which would make it cheaper, but is a waste of money if its not effective means of treatment.

    Any advise is appreciated.
  2. ladybugmandy

    ladybugmandy Member

    getting worse soon after beginning antivirals is usually a good sign.

    i do not think you should pulse antivirals or you risk creating resistant viral strains.

    is there a reason you are not taking valtrex instead of famvir?

    have your antibodies to HHV6, CMV, and EBV been tested?

    how long have you been ill?


    [This Message was Edited on 12/15/2008]
  3. heapsreal

    heapsreal New Member

    For some reason in australia they dont test titre values, but have had previous infections to ebv, cmv and chicken pox,cfs started after chickenpox and ebv infection in 2002, 12-18 months ago I used femvir and had a similar reaction as the current one, changed to valtrex cause it was cheaper but didnt notice any changes better or worse, dose was 1gram a day, followed this for about 2 months then stopped. My dr test lymphocytes which have always been elevated which he thinks is probably ebv reactivating, was tested for hhv6 which was negative. My dr suggested taking famvir when crashing, he has some concerns about being on it all the time, my concerns were financial as it does get expensive.
    My understanding of antivirals is that it doesnt kill the virus just stops it from reproducing, higher doses like dr lerner suggests may kill the virus but that dosage is out of my league financially. Have seen some overseas pharmacy's that sell generic valtrex at a price i could afford but unsure of the import laws in australia, we have the toughest customs system in the world here.
    Thanks for your reply I appreciate it.
  4. ladybugmandy

    ladybugmandy Member

    sorry you are having to put up with all this in the UK!

    in june of 2009, the valtrex patent expires. after that, it will become MUCH cheaper.