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A Little Poisoning Along the Road to ME/CFS
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Valcyte + Famvir Success with only mildly elevated titers

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by mojoey, Aug 1, 2011.

  1. SOC

    SOC Senior Member

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    We need an expert here. :D Wish we could get one.

    There are so many subtle details that are hard for us laypeople to keep up with. I read a lot, but there's very little I'm sure about.

    This is what I'd heard... I found it again at the HHV-6 Foundation website
    http://www.hhv-6foundation.org/research/hhv-6-testing

    [My bolding]
     
  2. BiancaS

    BiancaS

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    Not sure how testing is done in the US, but exactly because of the insensitivity of the antibody testing or PCR, in Germany many doctors are using the Lymphoccte Transformation Test, which basically is the level your lymphocytes are reacting to certain antigens, ie my antibodies showed that my EBV is not active, but th LTT revealed sky rocket high titers, which means that my lymphocytes are actively fighting the virus. If it was latent, the activity level would be rather low, but mine showed clearly an active fight by my immune system with the EBV virus. Here, they are treating high titers, irrespective of whether it is regarded "latent" or "active", as a high titer means that your immune system is hving a horrible time dealing with the virus and not having capacity for other fights (bacteria, parasites).
     
  3. SOC

    SOC Senior Member

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    That sounds very sensible to me. I am completely mystified why the US medical community is so committed to these insensitive tests. No one has ever even mentioned LTT to me here. :rolleyes:

    I look around at ME patients who are clearly sick with viruses that look like various herpes viruses but are told their tests don't support the diagnosis and I'm reminded of a line from Terry Pratchett:

    I think this is Granny Ogg speaking:
    "There's no point in looking at a dog and saying it's not a dog because a dog doesn't look like that."
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Bianca, the LTT you mention sounds like the lymphocyte sub set test my doc uses too. Lymphocytes are a generalised immune response to viral infections, certain lymphocytes like cd8 are common in herpes viruses.

    I have also read that herpes viruses are always doing their dirty work ie trying to make us sick, so even when supposedly dormant they are actively doing something but not replicating, its when they replicate they increase the amount of virus in us and antivirals stop this replication but not stop them from trying to cause havoc in our nervous system. I suppose a very low viral load just isnt strong enough to make an impact on us(non cfs/healthy people). Long term av's are used in the hope that they burn themselves out, sort of like dieing of old age. I hope they die of old age before i do??

    Cheers!!!!
     
  5. Daffodil

    Daffodil Senior Member

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    my NYC doctor told me that a very old patient of his had no elevated titres at all..i think everything was lower than normal..so he thought that was weird, that perhaps she wasn't producing antibodies..she ended up responding to acyclovir and going back to graduate school f/t and published papers and stuff. she had had CFS for 15 years i think.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Daff, originally i had IgG antibodies to ebv and now i dont produce any antibodies for some reason, this loss of antibodies to ebv is also written in Oslers web, so maybe a common occurrence.

    cheers!!!
     
  7. saint

    saint Senior Member

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    Is Eqillbrant a prescription med? I have terrible hay fever - another misery to add to the fibro. I've never heard of it, but would like to try it. I have to take antihistamines constantly.

    thx
     
  8. saint

    saint Senior Member

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    I am following Famvir protocol for fibro, but my fibro doc told me Valcyte better. Bought it and ended up paying $500 for it. I have been totally unfamiliar with antiviral use in this disorder, as my doc never prescribed it for me, even though have EBV & Parvo.

    Can you please tell me what you meant by "one high dose of Valcyte to get into CNS"? How many mgs. of Valcyte is that?

    thanks.
     
  9. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I think she means taking all 900mg at once as opposed to dividing it into two doses per day - to have the most impact on the CNS and piercing the blood brain barrier.
     
    SOC likes this.
  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Just curious, what kind of doctor runs all these tests? Do you see an immunologist or virologist?
     
  11. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Immunologist/CFS doc. My advice would be to google Cfs+doctor+city. Then call and ask if they prescribe Valcyte. Make sure they are in the know so to speak.
     
    SOC likes this.
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @PearlGirl26 thanks! I am not actually looking for Valcyte. I was just wondering what type of specialist tends to run all those blood tests.
     
  13. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    No problem! If they do prescribe Valcyte, it's a good indicator that they know the correct tests to run (just my $.02). Any CFS doc worth their weight is not only familiar with Valcyte, but uses
    it on patients who fit the right profile as so far, it's the only treatment that's been researched and proven on a subset of patients. Valcyte knowledge=good litmus test.

    Case in point, my first CFS doc diagnosed me with adrenal fatigue and wanted to give me cortef and vitamin C. Didn't run any tests for HHV6, Parvo, CMV, etc. I don't think he even knows they are factors. Valcyte is completely off his radar. I switched soon after.
     
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  14. SOC

    SOC Senior Member

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    I have never before heard of Valcyte being prescribed for fibro. It is a serious and potentially dangerous medication used only for active CMV or HHV6 infection. It should be used under close supervision by an experienced doctor. Frequent testing is necessary to avoid very serious side effects. It is also extremely expensive -- $4000-$6000 per month.

    Are you perhaps confusing Valtrex and Valcyte? Valtrex is used for EBV, HSV, and VZV. It is safer and much, much cheaper than Valcyte. Famvir and Valtrex are in the same class of drugs and are used for the same infections

    Valcyte isn't known (or expected) to be effective for Parvo. I have been told there is no established treatment for Parvo, and the typical treatment path is to eliminate other infections and support the immune system so that it can fight Parvo on it's own. In some particular cases, IVIG has been used for Parvo.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    famvir/valtrex have also been shown in Dr Lerners research to be a successful treatment for cfs/me with active ebv only.
    Famvir/valtrex are also used to prevent cmv/hhv6(organ transplant) as well as keep those viruses down after being treated with valcyte and other cmv antivirals? SO they do have some effect on most herpes viruses.
    Famvir is also know to be effective against hep B, to what extent i dont know?
     
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  16. SOC

    SOC Senior Member

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    What I was told by a certain ME/CFS specialist with experience with antivirals is that Valcyte is needed for active CMV/HHV6, but Valtrex can help keep them suppressed once they're not active. It had something to do with the stage of replication at which the particular antiviral works.
     
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its worth having a shot at trying valtrex and famvir for cmv/hhv6 as a large majority of people on these types of forums wont ever get the chance to try valcyte unless things change drastically with cfs/me, either just dont have the money or the health system doesnt cover it. Its a shame. Even valtrex and famvir are expensive for many of us, i know it makes a big hole in my budget.

    if they can stop the virus replicating at a certain stage then theoretically it should lower viral load. My first 12 months on famvir almost had my immune labs back to normal and symptom wise is the best i have felt since having cfs. I shouldnt have regrets but i wish i didnt stop famvir after 12 months. But the information out there on how long to treat someone, dosing etc is still not black and white.

    I think its a matter of trying whats available to you.
     
  18. SOC

    SOC Senior Member

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    Absolutely. Ideally we take the best medication available for the given infection, but sometimes that's not available either for economic reasons, or because the medication is contraindicated for us for other reasons. In that case we need to go for the best we can manage.:)
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When cfsme is recognized for what it really is than hopefully these meds will be more available.
    I don't think valcyte has long until it's patent ends. So hopefully it will be cheaper but also more meds come out for these infection, which will come under a patent.
     
  20. SOC

    SOC Senior Member

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    Valcyte is supposed to go off patent in 2015. As you say, that will make it much cheaper. Of course the pharmaceutical companies will then present the next, better AV which will be horribly expensive. :rolleyes:
     
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