New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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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. zzz

    zzz Senior Member

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    I had normal titers for all herpes viruses (no active infections) when I took IV ganciclovir. This is before Valcyte came out; Valcyte is a prodrug for ganciclovir (i.e., it metabolizes into it). I took the ganciclovir based on a positive stealth virus test by Dr. John Martin. I was on the ganciclovir for seven weeks, and it did wonders for me; by the end of treatment, I thought I was going to be able to go back to work soon. No such luck. But three months later, Valcyte was approved by the FDA, and I immediately started taking it.

    I had headaches and a low-grade fever constantly from the beginning of my illness (actually, my final relapse); they went away two and a half years later during the ganciclovir treatment and stayed away while I was on Valcyte. Whenever I went off the Valcyte, they came back, though. Finally, after five years on Valcyte, I was able to go off it without the headaches or fever (except very occasionally), and with no other negative side effects.

    Virus levels can be very high in the CSF even when they're low in the blood, and I think that's what happened to me - hence the headaches. I think it just took five years to wipe out a virus in my brain, which as I have explained in another thread, I have reason to believe was herpes zoster. Valcyte crosses the BBB very well, and is very effective against zoster. But you can have a very active case of a virus in your CSF that will never show up on standard blood tests.

    In my experience with ganciclovir, I also noticed that it seemed to have immune modulating properties, based on the way my recovery progressed. My doctor thought that was very possible for the same reasons I did. Then, six weeks after the ganciclovir treatment ended, my immune system crashed, and I started getting various unusual (non-herpes) viral growths. My doctor said he hadn't seen an immune system failure like that outside of end-stage AIDS patients. So he brought in a couple of top infectious disease docs, and they took one look at me and decided I had HIV. They did all sorts of tests - HIV-1, HIV-2, and a few nonstandard HIV tests. Everything came out negative; this didn't surprise me, as I knew I didn't have HIV. My CBC was also basically normal, implying normal T cell counts. So based on my experience with the ganciclovir (which I could no longer afford), I told my doctor that I thought when Valcyte became available, I could make the viral growth go away. My doctor, of course, was skeptical, and I can't blame him.

    But sure enough, within a week of when I started the Valcyte, the viral growth quickly started to disappear, amazing my doctor. Yet while it was still disappearing, a growth of a different strain of the same virus appeared elsewhere on my body and began growing rapidly, as if my immune system weren't there. My doctor happened to run into Dr. Anthony Komaroff at the time, and told him all about this. Dr. Komaroff said he had never heard of such a thing. Meanwhile, I figured that maybe I had to pulse the Valcyte to get rid of the second growth (which was by now already scheduled for surgery). So I went off the Valcyte for two weeks, went back on it, and sure enough, the second growth rapidly started to disappear, and I canceled the surgery. Both growths soon disappeared entirely. So did a large wart that I had had on my left index finger for 40 years - you can't even tell where it was now.

    So Valcyte is indeed a powerful immune system modulator, at least in my experience, but like other immune system modulators, it needs to be pulsed for best effect.
     
    Last edited: Jun 22, 2014
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  2. ffoxx

    ffoxx

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    I just found the site, and this is my first post, so please excuse any mistakes. What is 'pulsing' a course of Valcyte? (in reference to the June 22 post from ZZZ) Also, what dose of ganciclovir worked for you?
    I finally found a GP who takes CFS seriously, but has just begun to investigate it.
    I'm so glad to find Phoenix Rising!
     
  3. SOC

    SOC Senior Member

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    Pulsing is taking the medication for a short while, then not taking it for a while, then taking it again for a short while... and so on. Pulsing is not generally recommended for antivirals because there's a high risk of developing an antiviral-resistant form of the virus. Then you'd really be up a creek. There are already antiviral-resistant forms of EBV because of people not taking their antivirals correctly.

    ME/CFS patients usually need to take Valcyte for about 18 months continuously. Some of the most experienced doctors using Valcyte use either 1350mg or 900 mg daily. I think they often use the higher dose for 6-12 months, then the lower dose for as long as is needed.

    If your doctor wanst to know more about using Valcyte, you should do some research on the work of Dr Martin Lerner and Dr Jose Montoya.

    What infection do you have that you want to treat with Valcyte?
     
  4. ffoxx

    ffoxx

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    Cytomeg

    Cytomegalovirus. I'm not sure of the acronym of the test, but it was for a longstanding (old) infection. The doc said that the high range reading was .62 (point six two), and my reading was 3.0
     
  5. zzz

    zzz Senior Member

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    When used to treat herpes infections (such as CMV), which is the only use of Valcyte approved by the FDA, Valcyte should not be pulsed. It may be necessary to stop the treatment briefly if side effects such as neutropenia develop, but as long the drug is well tolerated, it should be used on a steady basis.

    @SOC has referred to the work on Dr. Martin Lerner; he has a well established protocol for the use of Valcyte which is extremely similar to the protocol I used when I was treating myself.

    Pulsing is used only when Valcyte is used as an immunomodulator. I discovered this use on my own, and Dr. Jose Montoya has independently discovered it. I related my own personal experience, but there is very little data on how this should be done effectively in the general case. Especially since there are more established and less toxic immunomodulators about which much more is known (such as Imunovir), I would not recommend the use of Valcyte as an immunomodulator, and therefore would not recommend pulsing it. Instead, you should use one of the established protocols, and be sure to have periodic blood checks to make sure that you are safely tolerating the drug.
     
    Last edited: Jul 13, 2014
    SOC likes this.
  6. SOC

    SOC Senior Member

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    Yeah, there isn't much else for CMV other than Valcyte. Daughter and I took it for HHV6, and were very happy with the results.
     
  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @mojoey I don't know if you are still on the board as your post was from 2011 but I was wondering which anti-viral you ultimately tried and how it worked out for you? I am currently on Famvir and still gathering as much info as I can. I am hoping you are feeling better now... fingers crossed...
     
  8. Daffodil

    Daffodil Senior Member

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    you can find mojoey on his site, healkick.com
     
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  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Daffodil Thanks for the info and I looked at healkick but the site doesn't seem to exist any more. It re-directs to healclick but you have to be a member and I couldn't figure out if there was a way to contact Joey. He wouldn't know who I am anyway and I don't want to bother him! I am just gathering data on Famvir and trying to compare dosages, lengths of time taken, etc. Thank you so much for the info though!
     
  10. nells49

    nells49 [banned as spam]

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    Its helped me a lot too.
     
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  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @nells49 I am so glad to hear that and wondering if you are comfortable sharing what dose of Famvir, how long you took it, and what your improvements have been? If not comfortable, I totally understand and no worries!
     

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