Valtrex users--What dose and how long?

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Jul 28, 2009.

  1. mezombie

    mezombie Member

    I think I might be able to convince my doc to prescribe Valtrex. I would like to try it as Acyclovir worked for me for a while many years ago.

    What is most doctors recommended dose for reactivated EBV, and how long, on average, do people stay on the drug?
  2. Slayadragon

    Slayadragon New Member

    Hi Zombie,

    Dr. Guyer has used Famvir and Valtrex from quite a number of years. If I remember correctly, Valtrex is about 3x as strong as Famvir in terms of the mg. Meaning that 3000 mg of Valtrex (a frequently used dose of the Valtrex) is equal to about 1000 mg of Famvir.

    1000 mg was way too much for me back in 2007 (before I moved) though. He advised decreasing the dosage a lot, which I did. The drug still sapped my strength though. Even six months after I stopped taking it, I remained much more sick than when I started. Weak, reminding me of what my grandmother was like when she was dying of leukemia.

    It may have been that the Famvir was just a really good match for the viruses that I had in my body. And certainly I had a lot of viruses. And my decline may have been due to the amount of mold in my house increasing during that time.

    I was unable to tolerate antibiotics at that time either. If you're able to tolerate them well now, then maybe that's a good sign that you'll be able to tolerate a good bit of the antiviral as well. I hope so.

    A lot of people stay on that drug for years, often pulsing it, if they note a good effect. I've seen people take it for a while until the benefits slow down, then get some more benefit when they move to Valcyte. It seems like that stepping stone approach (killing off some of the less resistant viruses before moving to a drug that kills a wider spectrum) may be easier on the system. Switching from, say, Valtrex to Famvir may be helpful at getting a wider spectrum as well.

    Best, Lisa
    [This Message was Edited on 08/02/2009]
  3. ladybugmandy

    ladybugmandy Member

    dr. lerner prescribes high doses of depends on your body size. i take 4 g a day but i have met some men who take 6 g. according to dr. lerner, most people have to take it forever.

  4. mezombie

    mezombie Member

    Thanks for the feedback.

    My doc doesn't have much confidence in antivirals. He is more Lyme oriented and so goes for killing of bacteria. He feels once those are under control other infections like EBV and HHV6 will be supressed by the immune system.

    I'm not in a position to try Valcyte right now, but I do have fond memories of the brief reprieve from brainfog I got from Acyclovir. So I want to give Valtrex a try.

    I ordered the Valtrex by mail, so I'm not sure of the dose I'm getting. I think my doc prescribed 500 mg to start, going up to 1000. I'm not beyond ratcheting it up. I will check to see how much Valtrex would be equal to the 1600 mg Acyclovir I took earlier.

    My doc is not convinced major herxes are a good thing; he feels they stress the immune system too much and just wear the body down. BTW, I never "herxed" on Acyclovir.

    I wish I could find a doctor who treats BOTH the "Lyme" and the reactivated viruses, but it seems like there are two camps and not much discussion between them!

    Taking antivirals "forever" sounds awful. Thanks for the warning. But the pulsing and switching to Famvir now and then is something I forgot about and good to kep in mind, so thanks for that.

    Rocephin works well on cognition as well, and seems to have long-term effects. Of course, so does Valcyte.

    It's so hard to know if bacteria or viruses are causing the problems. I suspect it's both, and more, and that the immune system is dysfunction is a major player.

    Well, I will try Valtrex for a month (it took very little time for the Acyclovir to have an impact) at least.

    Thanks again for your input.

    [This Message was Edited on 08/03/2009]
  5. ladybugmandy

    ladybugmandy Member

    mezombie...i have heard of a few people taking valcyte or acyclovir at lower doses and for short periods of time and having success...but it seems that after a few years, this stops working for them.

    i have no idea why dr. lerner's approach of high dose continunous antivirals seems to work for his patients (or so he claims)...maybe this technique discourages resistance virus from emerging? no idea....

    best of luck
  6. mezombie

    mezombie Member

    That's what worries me; they can stop working.

    Who knows if the viruses develop genetic mutations that make them resistant to the drugs?

    I'm concerned as I could never get Acyclovir to work again. I would be devastated if the same thing happened to me on Valtrex.

    I think I may focus on antibiotics a bit longer.

    Sue, I know you tested negative at IGeneX for Lyme, but have you ever considered going to a Lyme Literate MD (LLMD)? I ask because Lyme really is a clinical diagnosis, and you may respond to abx. There are many different kinds of abx (also anti-parasites) used depending on the patient, and even more combinations.

    I mention this because I know you've had heck of a time with Valcyte and this might open up some treatment options for you.

    Good luck to you, too!
  7. ladybugmandy

    ladybugmandy Member


    thank you. i did have an appt with an LLMD in NYC but cancelled it. perhaps i shouldn't have. i did do a trial of antibiotics for a few months but nothing happened - good or bad.

    i did begin to respond to valcyte and valtrex last year but the valcyte was stopped for a while and now i am back to square 1 even though i restarted the drugs 2 months ago.

    i'm pretty sure i need higher doses of valcyte (like 1350 mg a day or something). many of dr. lerner's patients take this..but my liver can't handle it.

    i'm getting too sick, tired, and poor to try new things. i will wait approx. 6 more months to see if the drugs start working. if they don't, i am not waiting around for cancer with a cement block in my head in a nursing home for the next 30 years...i'm out.

    good luck

  8. heapsreal

    heapsreal New Member

    I take it from previous threads you have left dr lerner and seeing someone else, hows that going? What new treatments are you trying? Hope you start feeling better soon.
  9. heapsreal

    heapsreal New Member

    I found with antivirals that its not out of the blue feeling better, just very slow steady improvement. I had a constant brain fog and crashed regularly, even when pacing. When starting famvir i wasnt sure it was helping till 3 months when i realised i hadnt crashed and brain fog was clearing, as we can have episodes like these normally but it kept going for about 8 months when i crashed, but could have been the winter flu thats getting around over here, once over this bug am back to where i was.

    I had tried other short courses like 4-6 weeks and didnt really notice much, which is why i think these short courses arent long enough, as well as other well known cfs docs saying minimum 6 months on AV's.

    I still have fatigue, post exertional mailaise i recover from better, brain fog much more berable then pre AV's, and lot less crashes that i recover from much better. All this improvement is shown in my blood tests (lymphocyte testing). Im still looking for more improvement. Im going to stop in a few months, that will be 12 months on AVs then see how i go, i will have blood test before coming off and a few weeks after coming off and take it from there.
  10. ladybugmandy

    ladybugmandy Member

    thanks heap. there is not going to be any feeling better, i dont think. i am still on the valtrex and valcyte and being followed via phone/fax by dr. leo galland in NYC. also on liver supplements and some artesunate.

    tried to send blood to redlabs today. stole some butterfly needles from a lab but my mom couldnt push the tube in hard enough so it didnt work! ughh..this is the 1st time i tried to draw blood on my own lol

    how are you?[This Message was Edited on 08/04/2009]
  11. ladybugmandy

    ladybugmandy Member

    why not just stay on the AV's?

    which lymphocytes do you test? CD57 etc?

    i used to notice small improvements over time - very slow - maybe it will happen again. i am just depressed and discouraged. stopping the drugs make it all come back, the virus will always be there and become resistant, i will lose my drug plan, etc....just all bad.

    i only stopped the valcyte for a couple of months and i am all the way back to square 1 again, even after 2 months of the drug now.

    i am very glad to hear that you are noticing improvements, thought. gives me a little hope:)

    thank you
    [This Message was Edited on 08/04/2009]
  12. heapsreal

    heapsreal New Member

    If i start to go backwards i will go back on AV's, just wanting to know if my immune system can handle the ebv on its own, and my pocket will have more cash in it.

    Havent had cd57 tested. My tests are cd20,56,3,4,8 and cd4:8 ratio. My total lymphocyte cd 3,4,8 and 4:8 ratio were all elevated. Since famvir all have come down but cd3 and cd8 are still elevated out of normal range and cd 4:8 ratio is now below normal as is my neutrophil count. My doc says this is a positive sign although started me on immune strengthening supps as a low neutrophil count and low cd4:8 ratio is a sign of a weakening immune system. He said a high cd8 reading is a sign of ongoing viral infection and is coming down with the famvir.

    Due for a blood test soon so will be interested in the results.

    I know doc lerner was a bit restrictive with what other things you could try, hopefully this new doc can throw something into the mix for you that helps.

    I know depression is a struggle for you, but have heard a few people who have been resisient to AD's use avanza and effexor combined with good effects, its nicknamed rocket fuel, sounds good and something to think about if you havent tried this combo before.

    Sorry about your problems drawing blood, if i lived around the corner from you i would do it for you , its a bit of a specialty thing for me (my job)cannulating etc although i usually put things in them not take out lol. You may not have had the needle in the vein, which is why u couldnt push the tube in. Do you have any friends or friends of friends who are nurses that could help you out?

    Keep your chin up and keep researching,
    look forward to reading your informative posts.
  13. ladybugmandy

    ladybugmandy Member

    heap..thank you. i will be very interested in seeing your new results..please share them!

    i saw an immunologist here once who was no help...but i wonder if they take CFS more seriously now. that way, i wouldn't have to travel for these dang tests!

  14. chrissy12

    chrissy12 New Member


    I am not sure if I am a good one to ask, I am on high doses of both valtrex and valctye.
    Valtrex - I think 4 g and valcyte - 900 mg daily for 16 months.

    I have improved some, but it is slow. I am hoping for more improvement.

  15. chrissy12

    chrissy12 New Member

    How are you???? I haven't spoken to you for awhile...

    Are you still seeing Dr. Lerner at all??

    I am still at a 4 with good days and bad days. It is very frustrating. I know I will continue with Dr. Lerner for at least one more year, then I will see what happens.

    He seemed pleased with my 4. I don't get why my numbers aren't changing much. If I could see that happening, I might feel more excited.

    I know you have been struggling and I am sorry about that. I agree with you that we need the doctors to get informed so we don't have to travel so far. It takes a lot out of us.
    The friend I go with and I have been paying someone to drive us there. We are working on our next visit. There are some people who have lost jobs who are interested. It's crazy....

    I send you my best and please keep us informed with how you are doing....:)
  16. mezombie

    mezombie Member

    Thanks for your input.

    If I could get to Lerner, I might be on the same protocol that you are on.

    As it is, the only doctor that is somewhat local to me and at least looks into infections treats only Lyme. So that is who I am seeing and what I am treating.

    I just started on Omnicef, which is supposed to work on bacterial infections that particularly mess up the central nervous system.

    We shall see. I really wish I could get rid of the headaches, migraines, and light sensitivity; that I could read again instead of listening to audio books, and that I could understand something more complex than a simple novel once more.

    Yet I don't have the level of fatigue and weakness I used to, due to Lyme treatment, and that is certainly not something to sneeze about!

    Good luck to you!
  17. chrissy12

    chrissy12 New Member

    I have never heard of omnicef. Please let us know if it works for you. I have been on doxy a long time and still have high mycoplasma - bacteria....

    I haven't had headaches or migraines with this. However, I used to have them really bad. I don't know how old you are, but mine started pre-menopause, around 42. What really works for mine is progesterone. I take bio-identical cream, 60 mg twice a day. I swear by it. I hardly ever get a headache, including migraines. I can tell if I am not using the cream daily because I will start getting headaches. If you are dominately estrogen disposed, it can cause the headaches/migraines. I had to miss school because I had them so bad. This is just a thought....
  18. heapsreal

    heapsreal New Member

    Ask your doc about switching to minocycline its suppose to have better tissue penetration then doxy and is used for similar conditions. Also maybe add azithromycin as this can get bugs that are resistant to doxy/mino. Make sure your looking after your gut with probiotics, take them away from antibiotics though.

    Also when taking antibiotics dont take them with any supplements that may have minerals like calcium, magnesium etc because they stop the absorption of these drugs.

    good luck.
  19. chrissy12

    chrissy12 New Member

    I just wrote the name down; minocycline. I see Dr. Lerner at the end of the month and will ask him about it. I tried azithromycin for many months, and some in my IV's and my mycoplasma numbers went way up and I had a bad reaction. I have never tried minocycline.

    I do take probiotics every night before bed. I think that's why my gut has been okay. Do you know if you can take calcium or magnesium during the day with antibiotics. I am getting conflicting answers to that question.

    Thanks, again!!!
  20. heapsreal

    heapsreal New Member

    Calcium/magesium is ok as long as its taken a few hours before or after antibiotics.

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