Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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TIRED,TIRED,TIRED

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Teri, Sep 27, 2014.

  1. Teri

    Teri

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    I took Famciclovir for over a year 500 mg 3 a day. My reactived EBV,CMV, HHV6,HHV7 HAS NOT IMPROVED. I have been taking Valacyclovir 1GM 3 a day for a week. Can't hardly stay awake feel like I got ran over by who knows what!!!! Extreme headache,sore throat, hard to breathe. Has anyone else had this? If so what did you do?
     
    Gingergrrl likes this.
  2. knackers323

    knackers323 Senior Member

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    Did you see any reaction either way from the famvir?
     
  3. Hip

    Hip Senior Member

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    Famciclovir and valacyclovir are quite similar in potency and their antiviral specturm, so if you did not obtain benefit from the former it is unlikely you will do from the latter.

    ———————————————————————————————————————————————————————————————
    Antiviral Drugs for Herpes Family Viruses
    ———————————————————————————————————————————————————————————————
    Valtrex (valacyclovir) · · · EBV, VZV, HSV-1, HSV-2
    Famvir (famciclovir) · · · · EBV, VZV, HSV-1, HSV-2
    Valcyte (valganciclovir) · · EBV, HHV-6, CMV, VZV, HSV-1, HSV-2
    Vistide (cidofovir)· · · · · EBV, HHV-6, CMV, VZV, HSV-1, HSV-2
    Falcigo (artesunate) · · · · EBV, HHV-6, CMV, HSV-1
    Nexavir· · · · · · · · · · · EBV, HHV-6
    Foscavir (foscarnet) · · · · HHV-6, CMV, HSV-1, HSV-2
    ———————————————————————————————————————————————————————————————

    Source: here.
    Sources for artesunate: 1, 2, 3, 4.
    Sources for Nexavir: 1, 2.

    Note: the drugs in red above have potentially serious side effects.

    Note: Valtrex (valacyclovir) is the prodrug of Zovirax (acyclovir)
    Famvir (famciclovir) is the prodrug of Denavir (penciclovir)
    Cytovene (ganciclovir) is the prodrug of Valcyte (valganciclovir)
     
    Last edited: Oct 6, 2014
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @Teri I am taking your exact dose of Famvir for two months but for EBV and VZV and do not have active titers on the others. I was wondering if you felt an improvement at any point from Famvir?

    I have never taken any other anti viral so cannot comment on the Valtrex. My CFS doctor felt we would know at six months if I was going to respond to Famvir. What led you to stay on it for one year?

    In my case, I've had a lot of confounding variables and too early for me to make a final decision if Famvir has helped so I am sticking it out for the full six mos.

    I'd love to hear any additional info that you can provide and wish you the best.
     
  5. JAH

    JAH Senior Member

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    San Jose
    I take valcyte and valtrex, and the combination really kicked my ass. Definitely felt run over by who knows what - completely flattened. I thought it was the valcyte, but when I ran out of the valtrex, I felt much better. (Surprised me because in the past valtrex alone seemed to have no effect at all, good or bad) One huge mistake I made was taking one of the anti virals at bedtime. I was waking up feeling unbelievably bad, death warmed over. I have stopped that and feel better upon waking.

    Good luck figuring things out, I know it's tough, I'm going through the exact same thing now, and it's been very rough,

    JAH
     
  6. JAM

    JAM Jill

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  7. Valentijn

    Valentijn Senior Member

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    There's not much about it in viral reactions because it can only happen in response to very specific bacterial infections. Spirochetes such as Syphilis and Lyme are the only things known to cause it.

    Someone wouldn't be "herxing" from antivirals or methylation, supplements, etc. They need to look for a different explanation of their symptoms.
     
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  8. JAM

    JAM Jill

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    I disagree. I herx one hour after upping my dose and am following the pattern exactly.
     
  9. Teri

    Teri

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    No but I was told it would take a year or longer. So after the year I got retested and my levels were higher than the first time.
     
  10. Hip

    Hip Senior Member

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    "The Jarisch-Herxheimer reaction is a reaction to endotoxins released by the death of harmful organisms within the body".

    Since there are no endotoxins in viruses, you cannot get a herx reaction when you are killing viruses.

    You may feel worse when you up your antiviral dose, but that is not a herx reaction.
     
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  11. Teri

    Teri

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    Thanks for the info!!! Now what I am sick of Drs one tells you one thing another tells you something different.
     
  12. Teri

    Teri

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    I was told it would be a year. But like I said I have had so many Drs tell me different things. I was also put on steroids and I felt good for about the first 4 months. Then I ended up at the hospital BP 185/125 and my BP is usually 100/70. It was not good.
     
  13. Teri

    Teri

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    Sorry you are going through this. I feel like just not taking anything and see what happens. In stead of getting my hopes up for nothing. Sorry having a pity party. LOL. I wish the best to you.
     
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  14. Teri

    Teri

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    I tested positive for Lyme in the past but not reactived.
     
  15. Hip

    Hip Senior Member

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    People often try Valtrex first, but this drug has a higher incidence of side effects than Famvir, so if you experience side effects, you might switch to Famvir, which is better tolerated.

    Valcyte of course is much more potent than Valtrex or Famvir, and tends to bring greatest improvements in ME/CFS symptoms; but Valcyte is expensive, and Valcyte can occasionally cause serious side effects, so you must have regular blood tests while on Valcyte to look out for these side effects.
     
  16. JAM

    JAM Jill

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    "An initial Jarisch-Herxheimer response at the start of the antiviral medication initiates successful treatment…” (This response entails a temporary worsening in the patient’s condition.)" http://www.masscfids.org/research/r...mprovement-in-a-subset-of-cfscfidsme-patients
     
  17. Valentijn

    Valentijn Senior Member

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    He could call the reaction a nuclear explosion if he wants to. But that doesn't make it a nuclear explosion.

    A Herxheimer reaction is very narrowly defined. If it's something else, it needs a different label.
     
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  18. JAM

    JAM Jill

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    It is all over the antiviral literature. I understand what you mean, but maybe they re-defined it or something, because that is not how it is used in the literature I have read. Granted, the term is a new one for me and I am just going on what I've learned in the last few months.
     
  19. Hip

    Hip Senior Member

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    A lot of people use the term "Herx" to mean something along the lines of "when I took drug X, I felt worse before I got better", but that's not really the correct meaning of the term Herxheimer response. But certainly this term is often used in this imprecise way.

    Herx really means that the potent endotoxins found within microbes are released into the body when those microbes die.

    The most well-known endotoxin is lipopolysaccharide (LPS), one of the most pro-inflammatory substances known to man. This is found in the cell walls of certain bacteria, so when they die, lots of LPS is released into the body and can cause symptoms of malaise.

    So Herx is a die-off reaction where endotoxins like LPS are released

    LPS, incidentally, may be part of the problem caused by leaky gut, because some speculate that leaky gut can allow small amounts of LPS from gut bacteria to enter the bloodstream, where it can cause inflammatory havoc in the body.
     
    Last edited: Jun 19, 2017
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  20. Gingergrrl

    Gingergrrl Senior Member

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    It is confusing to know what terminology to use sometimes and I know that the word "Herx" only applies to bacteria not virus.

    But there have been many posts that while the anti viral is stopping the virus from replicating, and hopefully your immune system finally kicks in to kill off the virus, there is a die off that occurs. There can also be an "Iris" reaction in which people feel sicker.

    I read one of Dr Lerner's studies where the anti-viral stops the full replication cycle but the virus is still trying to partially replicate which I would imagine is hard on the body and can make you feel sick.

    Of course all of this is different than just having side effects from a medication. Even in the hospital when I had side effects, the nurses and doctors often told me, "this is good and it means the med is working" and they were talking about autonomic meds and not anti virals (which they knew nothing about.)

    So it is very confusing b/c some side effects can be life threatening and should not be ignored. Whereas others are benign and tolerable. When I started Famvir I had headaches, facial pain and pain under my ribs but this completely went away and I have no side effects from Famvir and glad I stuck it out.

    Not sure if anything I just wrote is helpful?!!!
     
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