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valtrex for CFS

Posted , 7 users are following.

david59662
david59662

Hi guys,

Hope you had a nice xmas and new year, i did my best.

Still struggling with my CFS a good 14 months on. Still feels like i am going downhill each month. So has anyone tried Valtrex, specifically has anyone in the UK asked their GP about prescribing it for CFS ? It does seem to have miraculous effects for some people, reading forums and some studies undertaken. Seems well worth a go.

Thanks

0 likes, 16 replies

16 Replies

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  • Fidd
    Fidd david59662

    Posted

    Don't think that there's good evidence either way, so it will really depend on your GP. Some are happy to let patients try what they want, others are more wary.
    • david59662
      david59662 Fidd

      Posted

      Thanks mate. Yeah my GP thankfully has so far been very open minded.

      I think with illnesses like CFS and especially in my case where i am in gradual decline there is no point in NOT trying. Different if you were relatively stable but worsening symptoms means it's worth trying things. There are some miraculous ttestimonials on formus with folks using valterx, make of that what you will.

  • jackie00198
    jackie00198 david59662

    Posted

    David:

    Happy New Year to you. I believe Dr. Jose Montoya, of Stanford University in California, prescribes Valtres. Or maybe Valcyte? In any case, you might want to listen to his lecture on YouTube. Very interesting. He's one of the foremost ME/CFS specialists in the U.S. You could also check out his website. Typically, before prescribing these anti-virals, doctors do bloodwork tests on patients, I think to help them see if patients might respond to these medications. 

    • david59662
      david59662 jackie00198

      Posted

      I'll run trialing out valtrex with my gp in due course. I just started on LDN.
  • GeorgiaS
    GeorgiaS david59662

    Posted

    I see that it's an antiviral for Herpes. Grapefruit Seed Extract and the herb Myrrh are antiviral, and antibacterial. That's what I use and they really help.
  • sylvia17461
    sylvia17461 david59662

    Posted

    David I take it you asked your doctor about auto immune disease (hashimotos)🎥🎥🎥🎥🎥🎥🎃💊
    • david59662
      david59662 sylvia17461

      Posted

      Hi Sylvia, only recently but (arrogantly i think?) the doctor said because my thyroid was in range=no problem. They only tested TSH and free T4.

      I'm doing a private test for the thyroid anti-bodies. I am so sick of the NHS and GP's (not all) being so airy fairy when it comes to my health. I'm pretty sure hashimotos can mean you thyrois levels are normal ?

      Anyway doing the test soon. Thanks

    • sylvia17461
      sylvia17461 david59662

      Posted

      Hi David yes I had many many thyroid blood tests and always came back normal so = nothing wrong !!!!! I felt soooh Ill foggy brain , lack of concentration wooziness unbalanced pain and discomfort in joints , pins and needles , numbness, inner tremors , thudding heart and of course terrible fatigue . After years of this I saw a new gp , she said She could see how Ill I was and she should try me on thyroxine even tho my tests said I did not need it but she wouldn't because if something happened to me and she had prescribed something that my tests showed I did not need, my family could sue her and as she had just bought the practice she was not prepared to do it , but if I paid to see a doctor privately he would most likely prescribe it . She told me where to go and that is what I did !! He started me on a low dose of thyroxine , upped it over three months , amazing!!!  50/60 % better. I was never tested for hashimoto but the treatment for it is thyroxine which is of course why I became so much better !! I had been " diagnosed" with CFS it is only 19 years on that I was tested for hashi and proved this is what I have been suffering from. So I am very skeptical about me/cfs symptoms are very similar . Wilsons syndrome has similar symptoms may be worth checking out. I hope this gives room for thought David good luck I have met some very arrogant doctors in my 19 years of struggling hope you have better luck . 

       

    • david59662
      david59662 sylvia17461

      Posted

      Thanks Sylvia, i assume then with the thyroid anti body test that will determine whether i have hashimotos or not ? I need some luck in terms of having a concrete diagnosis, in many ways i hope occurs. I've read that LDN can benefit hashimotos ? 19 years and you still got there in the end ?WOW.
    • sylvia17461
      sylvia17461 david59662

      Posted

      David for a concrete diagnosis I was told the thyroid ultrasound was the key apart from the antibody tests . I am not sure what LDN is I will look it up you say it helps with the immune system ? Any port in a storm lol 

       

  • michila
    michila david59662

    Posted

    hi my 16 year old daughterwas diagnosed 2 years ago with cfs/me and has undergone tests with a sleep clinic.she has been taking bio melatonin for the last 3 months along with a energy light 2x 1/2 hour blasts in the morning when awake.its pushed her bodyclock back by 2 hours so far so is awake most days by midday.even though she still suffers from exhaustion aches and confusion at times shes alot better for taking them.anything is worth a go if it may help.
    • david59662
      david59662 michila

      Posted

      Thanks Michila, melatonin helps put me to sleep but i can still often awake in the middle of the night. An energy light sounds interesting.
    • michila
      michila david59662

      Posted

      we were recommended the blu lite made by phillips for my daughter because  the white lite can bring on migranes to light sensitive people which most cfs/me sufferers are.the one we got has a clock and an alarm on it as i want to try to get her as independent as i can with waking as she hopefully will start college in septebmer,fingers crossed. x

       

  • andrei20455
    andrei20455 david59662

    Posted

    Cycling Valtex completely eliminated symptoms of my CFS.

    I take 1g of valtrex twice a day(every 12 hours) for 4 consecutive days, once a month. I am a male and weigh about 180lb. ATTN, recovery mechnism is delayed, for the first 6-8 weeks I saw no improvement, and then I had full recovery. Also, I tried 500mg – it does not work for me.

    Here is my story in greater detail:

    My condition started with a flue and then continued with all the standard horrific symptoms. After two years of research and a couple of molecular cell biology courses, I narrowed my hypothesis down to Epstein-barr virus and HHV1 – high antibody titters kept on showing up in my bloodwork. Based on the information I could find, it seemed that EBV is suppressed by Valtres only at high concentrations while HHV1 is suppressed at both high and low concentrations. So, I started taking Valtrex – 1g ever 8 hours. After a couple of weeks i clearly felt that my body was suffering side effects from Valtrex. My stool turned white and I started loosing weight. I stopped after a month. And then, about 6-8(approximate) weeks since I first started (and so 2-4 weeks after I stopped taking Valtrex) I had a full recovery. Energy, comfort of being in my own body and sleep all returned. That was so odd! Recovery lasted about 6 weeks, and then I relapsed back into CFS. So, I started experimenting, and

    to keep the long story short, I discovered that the minimum dose was 7 1g pills of valtrex taken consecutively at 12 hour intervals ( I take 8 just in case). Recovery is delayed by 6-8 weeks, and then lasts another 6 weeks. So, to keep myself from relapsing I started taking it every month as described. And I have been feeling well since.

    I know Valtrex does not work for everybody, and I know that it works for some. I never tried Valcyte, I don’t know if cycling that in a similar way helps for other types of hhv not affected by Valtrex

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