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Week 10 on Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by undcvr, Jan 13, 2011.

  1. undcvr

    undcvr Senior Member

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    I just got my HHV6 test results back today. It is 1:320. That is the exact same number when I tested for it 3 weeks into the Valcyte. The feelings I am going through now are indescribable. It didnt even budge.

    All that hope and expectation washed down the drain just like that.

    Either the strain that I have is resistant to Valcyte or that Valcyte just isnt a very good drug for HHV6. Either way I do not know what to do now.

    Has anyone tried Vistide ?
  2. Timaca

    Timaca Senior Member

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    Your antibody titers won't drop until about 6 months into treatment. Test again in 4-6 months.

    Best, Timaca
  3. undcvr

    undcvr Senior Member

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    Timaca, I will be lucky if I can get my doc to extend the treatment. He only believes that I should be on it for 3 months max. He is very conservative.

    Did yours drop only after 6 months ? What was your dosage ?

    You cannot imagine the level of despair I was feeling when I got those results back.
  4. Rita

    Rita Senior Member

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    Don t be so sad, viruses are very difficult to erradicate.Its a long term course.A marathon.
  5. Rita

    Rita Senior Member

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  6. Rita

    Rita Senior Member

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  7. undcvr

    undcvr Senior Member

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    Thanks Rita, I dont understand what is HHV6 specific transfer factor ? I mean they innoculate cows with HHV6 and then obtain their Colostrum ?
  8. SOC

    SOC Moderator and Senior Member

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    Have you shown your doctor the research done by Dr Montoya and Dr Lerner?
  9. undcvr

    undcvr Senior Member

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    Sickofcfs, how long were you on Valcyte before the viral load dropped ? What is a realistic viral load of HHV6 for pple with cfs to hope to get ?

    I have not shown them to him but we discuss it alot.
  10. SOC

    SOC Moderator and Senior Member

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    I don't think HHV-6 titres are very reliable indicators of illness. The best source of information about tests is the HHV-6 Foundation which Rita linked above.
  11. Timaca

    Timaca Senior Member

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    I sent you a private message in response to your PM to me.
    Don't despair. IgG antibody titers don't drop that fast.
    Timaca
  12. undcvr

    undcvr Senior Member

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    Thanks I saw that. I was doing these weekly posts thinking that I would just need about 3 months. Dont think that I will keep them up if I am going to be doing it on the long haul. I responded to your PM too. I am taking BHT.

    I didnt realise I was being impatient, my doctor was so sure that 3 months was all I need. I am so tired of trying to re-educate every virlogist and immunologist I meet.
  13. Timaca

    Timaca Senior Member

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    I was on valcyte for 9 months. A friend of mine was on it for 8 months (he is totally well now). Another friend was on it for 11 months. I know of people who are going on it for a second time after having done a first round of it. I wonder where your doctor got the 3 month figure....

    Best, Timaca
  14. undcvr

    undcvr Senior Member

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    He whipped out a book in a drawer under his desk. Its the figure for patients undergoing kidney transplant with CMV. Even that protocol has been extended to 6 months now.
  15. AliceZ

    AliceZ

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    Undcvr-

    I gave my doctor a copy of Dr. Lerner's May 2010 paper (it can be accessed for free on his website) and I can't recall exactly the length of time he describes folks being on the antivirals but it's something like 2.4 years average. I've been on Valtrex and Valcyte for about 5 months now, and after bottoming out am finally getting better, very slowly but surely. I was very frustrated by not seeing results in the 2-10 weeks Dr. Lerner writes about in that paper, and decided to stick with it after posting on this site and reading responses from folks like sickofcfs. In Dr. Lerner's October 2010 paper, also accessible on his site, he describes longer times before folks start feeling better, like 5 months.

    I invested in a Heart Rate Monitor, which has helped me immensely in seeing the very small, gradual progress I am making. I don't know if I'd find it very useful if I was functioning at a level 7 or so, but I function at about a 4 on Dr. Lerner's scale. The improvement in heart rate (It used to beep constantly if I tried to do something as simple as walking across the house at a normal pace) has been a vivid and objective measure of improvement. I have also found that using the HRM helps me to figure out when a crash is coming and to avoid it, as I tend to just try to work my way through being tired. Now that I'm getting better I'm using the HRM to help make sure I don't overdo it, because when I started feeling better a few weeks ago I kept overdoing it because I was feeling better and then I would crash for several days and wonder if I was really getting better or whether I had imagined feeling better and was just fooling myself.

    I have also found a significant reduction in formerly chronic low-grade ENT infections with the antivirals. Chronic ear, sinus, eye, tonsil and gum infections, some of which I've had for 40 years, are basically gone.

    It seems to me that if you aren't having any significant side effects from the medication and you can arrange it with your doctor, it would be worth it to extend your trial period on the Valcyte before determining whether or not it's helping you.

    Good luck with it all.
    Alice
  16. Rita

    Rita Senior Member

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    Sorry, I do not know which method they use, but I know they make special transfer factor for EBV, HHV6 and CMV.
    They are manufactured in researchednutritionals and only sell to doctors.
    There are also special homeopathic products to lower EBV antibodies by a European laboratory called Labolife.No dont know if also for HHV6.

    I know that Nexavir is made from pork liver, I wonder if it will be good to eat pig liver,from pig very healthy, of course.
    Or maybe the cooking breaks down the products interesting. Nexavir is too expensive,450 dolars month.
  17. Rita

    Rita Senior Member

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    Nexavir (Kutapressin) for ME/CFS
    With thanks to a blog of cfssufferer. http://livingwithchronicfatiguesyndrome.wordpress.com/. Nexavir may improve ME/CFS symptoms because it:
    1. Inhibits EBV,
    2. Inhibit HHV-6,
    3. Is anti-inflammatory,
    4. Is antiviral,
    5. Is an immunomodulator (Nexavir may help shift the immune system away from Th2 dominance.),
    6. Enhances blood flow in the brain (as measured by a SPECT scan.). This increased rate of blood flow may be a consequence of the Bradykinin effect which involves dilation of the blood vessels.

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