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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Help with AntiVirals!! Hubby has it now.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Zensational, Sep 17, 2012.

  1. Zensational

    Zensational

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    Orlando, Florida
    I have had CFS/ME for 28 years. My viral levels are: Very symptomatic. Now have partially empty sella.
      • EBV NUCLEAR ANTIGEN IGG....8.0
      • EBV Ab VCA, IgG......................8.0
      • CMV Ab, IgG ..............................6.3




    • ParvovLrus B19, IgG..................4.6


    My husband recently had his EBV levels checked and they are:
    • EBV VAC IgG................................534.0
    I am wondering why his levels are so high compared to my levels. Do the levels go down the longer you have the disease?
    Most importantly, we are trying to decide on an antiviral. He has taken Acyclovir for several months but not much improvement. We are thinking of trying generic Valtrex or perhaps Famvir. Our doctor said that Acyclovir is a lot cheaper and should do the trick. Are we not giving it enough time? I have read that some people are having good results with generic Valtrex.
    Any personal advice on any antivirals would be appreciated. Also links to good prices.
    Thanks
     
  2. SOC

    SOC Senior Member

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    USA
    It has been speculated that after a long-term infection our bodies don't produce antibodies well so our antibody titres could be low even when the level of infection is high. By that logic, it's possible that your husband could have antibody titres much higher than yours even if you are sicker -- it would be a sign that his immune system is working better than yours.

    Dr Lerner has mentioned that many of his patients have poor response to Valtrex generics other than the Mylan and Teva brands. You might want to have your doc specify those generics only on your prescription, just to be sure.

    I've heard Famvir is also effective for EBV and has less side effects, but I don't have personal experience with it.

    Most PWME have to take antivirals for 18-24 months for them to be fully effective. Several months doesn't seem to be anywhere near enough for us. I have been on antivirals for more than 2 years and am much better, but still have a way to go. Many PWME don't notice much effect in the first several months.

    Have you seen Drs Klimas/Rey? They're good with that kind of stuff and (relatively) close to you.
     
  3. Zensational

    Zensational

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    Orlando, Florida
    Thanks,
    I suspected that might be the case with a relatively new infection for him.
    I have not seen Dr Klimas or Rey. I'll look them up. I know Klimas is in Miami.
    Are you taking the Mylan or Teva generic valtrex and how much/often?
     
  4. SOC

    SOC Senior Member

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    USA
    I believe it's the Mylan brand I'm taking. I take 4000mg daily -- 1000mg 4x over the course of the day. I also took Valcyte for a little over 2 years, but that was for HHV-6, not EBV.

    I'm really impressed with Dr Rey. I've improved functionality in the months I've been under her care. My daughter will be seeing her next week to get a maintenance plan even though she is currently in remission . I highly recommend the Klimas/Rey group.

    Our family experience, which may not apply to everyone, is that the sooner you get aggressive antiviral treatment, the more likely it is you'll recover.
     
    vli likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    ignoring the blood test results, is hubby feeling better on antivirals??
    Valtrex will more easily get acyclovir blood levels higher then just taking acyclovir. Also famvir is used when valtrex doesnt seem to be effective and also doesnt have the possible side effect of valtrex which are kidney stones.
    I think after awhile blood test results dont reflect how one is going, i totally agree with SOC about not producing antibodies if been sick for awhile as this happen to me with ebv, several years after having ebv i tested totally negative???

    cheers!!!
     
  6. Zensational

    Zensational

    Messages:
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    54
    Orlando, Florida
    He is not feeling better on acyclovir but has only been on them a few months. Several years ago, after a period of great stress with his sisters, he started becoming symptomatic, sleeping long hours at night and then several hours during the day. Finally we got his EBV levels checked and since it is fairly early in the infection I am optimistic that he will recover and have a normal life.;)
    Valtrex will more easily get acyclovir blood levels higher then just taking acyclovir.
    So since he has had kidney stones and has a propensity to them neither Valtrex or Valacyclovir would be adviseable. Is that correct? I just looked it up and it says that if you take high doses of Valtrex or Valacyclovir, which we need to in order to fight the virus, then it can cause kidney disease/stones.
    So that leaves what?...back to Acyclovir or Famvir. Maybe a combination of those two.
    I am not really familiar with famvir but wonder if that combo would work.

    Do most people try combinations of antivirals? I suspect that he has all the viruses I have but just hasn't been tested.

    Now that we are both down with we are trying to help each other. I just had a case study done on me for EBV which was a series of IV's of a substance which I can't mention right now because of FDA regulations,
    but if it ends up lowering my viral levels and my Nagalese levels then I will let you all know for sure. I will have my blood levels rechecked and my Nagalese level rechecked end of October. My previous nagalese level was 2.5.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
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    4,802
    australia (brisbane)
    just try famvir first up say 500mg twice a day for a few months before u notice things.

    cheers!!!
     
  8. Zensational

    Zensational

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    Orlando, Florida
    Is the generic Famciclovir as effective as Famvir? It is very expensive, but fortunately he has health insurance with a $500 deductible per calendar year. After that it's covered.
     
  9. Ema

    Ema Senior Member

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    I take generic Famvir - 500 mg/three times a day. I've only been on it for about 3.5 months though so not really enough time to know if it is making a difference yet.
     

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