1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

9 weeks on Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by undcvr, Jan 6, 2011.

  1. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    I have been trying to get my doc to increase the Valcyte up to 1800mg again becaused of the winter months but he wont budge. Right now I am convinced that it is the HHV6 that is causing many of my CFS symptoms. When I was on the 1800mg dose I felt so much better.

    I started to feel really debilitated over the summer months of August. It was only by Septemeber did I do any blood test and it showed HHV6a and EBV in my blood. I went on the Valcyte in the first week of Nov and by the time I had my second blood test in the later part of Nov, EBV was 'Not detected' on PCR Qualitative. This I attribute to the Valcyte. HHV6a was still in my blood. It seems to me that HHV6a is becoming a virus that is very underestimated by doctors. Valcyte is supposed to work on the whole family of Herpes viruses but the virus has still persisted in me until today. I am quite sure that viral titers have gone up in the winter months because I feel worse. HHV6a is not an innocuous virus just because it is in 90% of the population. I think that if u are one of those unlucky few that has an immune system that cannot suppress it, it can do alot of damage that doctors are not aware of.

    Initially i was supposed to be on Valcyte for 3 months, but it looks like I may need to be on it for longer.

    I have no money to pursue XMRV/MLV, not even to test for it. For me it stops here and I will manage it with what I can. I know that the Herpes family viruses are not the whole story to this jigsaw puzzle of a disease, but that is as far as I will go in terms of looking for a cure. In fact deep down inside, I dont think there is one and it is just something that I will have to manage for the rest of my life.
  2. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    My daughter and I have had substantial improvement after 1 year on Valcyte at 1350mg. I don't think 3 months is turning out to be enough for PWCs. I think the most experienced ME/CFS docs using Valcyte are finding that 18 months is necessary. Some people need quite a bit longer.

    It's important to remember that Valcyte only stops the virus from replicating; it doesn't kill it. So if you have a massive infection, you need to wait for the death of the presently infected cells and their replacement with healthy cells.

    I think that HHV-6 was probably causing many of my symptoms, especially the cognitive ones, too. I'm not convinced that pushing HHV-6 back into latency is going to resolve all my symptoms, but it will substantially improve my quality of life while I wait for more/better treatments. And having a neurotropic infection running wild in one's body can't be good for it in the best of times.

    As I recall, HIV patients were (and maybe still are) treated with anti-herpetics like Valcyte before antiretrovirals. I'm guessing we're in a similar position -- we need to treat the runaway infections secondary to whatever is causing our immune systems to malfunction.

    I've heard the Valcyte side-effects are much less with lower doses, so I'm not surprised your doctor isn't interested in giving you 1800mg.

    I didn't have much improvement until about 6 months, and there have been occasional setbacks along the road -- especially if I didn't rest A LOT, even when I felt good.

    Be patient, if you can manage it, and let the Valcyte do it's job. Get LOTS of rest so your body has time to heal.

    Good luck!
  3. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    'I'm not convinced that pushing HHV-6 back into latency is going to resolve all my symptoms'

    Thanks for your supportive words sickofcfs. I was thinkiing of the same thing you were. Say I do push HHV6a into latency, then what ? I mean it is so contagious, so infectious, I will definitely get it again. And then what ? More Valcyte ?? Seeing the way that it is showing up in so many PWC it has to be that part of the immune arm that is malfunctioning. Gotta get these docs to look into it more. My blood work came back fine even on the first 3 weeks of the induction dose. I was taking Shark Liver oil to counteract any white blood cell suppression the Valcyte might do. In fact my WBC count came back higher than it has ever been before.
    I am not so sure this is a good thing though as HHV6 infects white blood cells. Am I allowing it more host cells to invade and infect ? Any thoughts on that ?
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    Try using a lower dose of valcyte and add famvir as some people on here with hhv6 have had lower titres from famvir. Your white cell count may have come up from the cycloferon as well. I suppose it all takes time to improve, it just sucks having to wait. I hate the ups and downs of this illness as its the thing that harms your psychological wellbeing. Im having a downer at the moment, a real ground hog day thing, just have to ride it out, lol.

    cheers!!!
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    As I understand it -- and I could be wrong -- if we push our HHV-6 infections into latency, our immune systems may not be able to keep it there. However, if we kick it down far enough, it make take a while (years) to break out again. In the meantime, we've had a better quality of life and research has had a few more years to work out better treatment for ME/CFS. :D And we've had a few years without HHV-6 wreaking havoc on our hearts, brains and goodness knows what else. Surely that can't be bad.

    I don't know about increasing white blood cells with HHV-6. "Immune boosters" haven't made me feel better and sometimes made me feel a little worse. Since the XMRV revelation, I've avoided supplements that increase immune cells, on the off chance that it could spread an XMRV infection. If I really felt immune boosters were helping me, I might rethink it, but under the circumstances, I stay away from them. That's just my personal, not-particularly-well-thought-out choice. ;)

    We haven't had our white blood cell counts drop too low in the year we've been on Valcyte at 1350mg. They've been at the low end of normal, but not below, so we haven't had to worry about it.... yet.
  6. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    No this was before the Cycloferon. This was on the Shark Liver oil (standardised for Alkylglycerols) only. My dose of the Valcyte now is 900mg, Famvir 1 gm. Its not enuf to get me thru the winter. Well at least we can all agree that this sucks.

    What this means is that basically I am now on Valcyte, Famvir, Shark Liver Oil and the Cycloferon and still not feeling well. - sigh -

    I want everything NOW dammit ! That was probably the way of thinking that got me into trouble in the first place.
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    Sorry to hear you're having a downer at the moment, heapsreal! That's one of the horrors of this disease IMHO. Just when you start feeling a bit better, or you finally do something you've been dreaming of doing for weeks (months, years), you get hit with another down period. It is discouraging. Glad you have the strength of mind to recognize that you just need to ride it out. :D
  8. energyoverload

    energyoverload Senior Member

    Messages:
    105
    Likes:
    54
    London
    do you think valcyte is worth taking? i am very willing to wait like 6 months + before any improvement as I have been on AZT and Tenofovir now for almost 9 months and my health is getting progressively worse, regardless. I just need to buy myself more time until some more useful research comes out...

    heapsreal i hope you start feeling bit less rough soon :(

    thanks for any advice guys :D
  9. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    If you are positive for HHV6, EBV, CMV and your titers are high, yes go for it, it will make a difference. What sucks for me is that initially I felt a very big difference right at the beginning. Then my dose got reduced and I feel weak again.
  10. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    Sickofcfs, off the top of your head can you remember the immune boosters that made you feel worse ?

    Its interesting that you say that your WBC count is normal but on the lower end of the range. Same here and all cfs-ers report that. Taken as a whole all our WBC count comes in on the lower end of the normal range. These doctors just dont get that, its an ongoing infection !

    And at the same time becos it is not out of range, we dont really qualify for any sort of treatment. Its crazy !
  11. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    As I've said before, you'd have to pry the Valcyte out of my cold, dead hands. ;)

    It's the only thing that has given me any major improvement. I've moderated symptoms with some other treatments, but this is different. I'm just better, not fully recovered by any means, but undeniably better.

    I was bedbound most of last fall and nearly bedbound over the winter. A year later I'm working (at home) about 15 hours a week. I feel pretty good most of the time, but I'm very careful and take it very easy. My quality of life is vastly improved, which I desperately needed.

    My daughter was not quite so ill as I was and has still had a substantial improvement. She, too, has to be careful not to overextend herself, but she lives a fairly normal life -- college, quiet social activities, light exercise. :D

    All that said, if you don't have an active herpesvirus infection, Valcyte is not likely to help. The problem is that HHV-6 is notoriously hard to test for. Three different doctors told me I didn't have an active HHV-6 infection. Dr Lerner, who has a lot more experience with ME/CFS and herpesvirus infections, decided I did have an active infection and started me on Valcyte. I think the success of Valcyte treatment indicates he was almost certainly right.

    My daughter has had NO side-effects from Valcyte at 1350mg. I had a rough patch at about 5 months, but it was not as bad a my worse ME/CFS symptoms, so it wasn't that big a deal to me. :D

    So, in my opinion, Valcyte is probably worth a try.
  12. 5150

    5150 Senior Member

    Messages:
    161
    Likes:
    47
    I have no money to pursue XMRV/MLV, not even to test for it. For me it stops here and I will manage it with what I can. I know that the Herpes family viruses are not the whole story to this jigsaw puzzle of a disease, but that is as far as I will go in terms of looking for a cure. In fact deep down inside, I dont think there is one and it is just something that I will have to manage for the rest of my life.
    _____________________________________________________________________________________________

    hi undcvr, you sound like you have a plan of action and that's a good thing for you; but i don't understand why you would not want to know about xmrv, even if there's nothing you can do about it(now). just having awareness of what we are up against would seem to bring a degree of relief, even if it's only a mental relief. to me, knowing is far better than not knowing...but that's just me.
  13. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    Crazy, innit? WBC count is lowish, lots of indicators of something wrong, but because the WBC count is (just) within "normal" range, we must be perfectly healthy. Sheesh! It hardly needs years of specialized education to draw those kinds of cheap rule-of-thumb conclusions.

    Gosh, it's been a while since I thought about the immune boosters. I'm pretty sure one was beta glucan. I think another two were astralagus and larch arabinogalactan, but I'm not so sure of those. Sorry.
  14. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    Sickofcfs how is HHV6 hard to test for ??? It is a standard PCR qualitative, every diagnostic lab has the test. It is how they interpret the quantitative test that is the problem with my doctor. My titers are 1:320, many doctors do not see that as an active infection, they would just dismiss the result. Only my virologist was open to interpreting it as an infection and not as a past infection. That was the break that I got that made a big difference for me.
  15. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    No 5150, I dont have a plan of action. My only plan of action so far is to keep pestering my doctor to raise the dosage of the Valcyte for me. So far it is not working. When I was on the induction dose, 1800mg, I felt like I was completely cured. It seemed like I had come to the end of my journey and the fact that the Valcyte worked so well validated that for me it could be that HHV6 was the cause of my cfs.
    XMRV/MLV and HGRV I am not so sure that they cause cfs. They could just very well end up being one more of the viruses that we are more prone to. On top of it all, i really believe that cfs is an immune disorder so they might not be able to find the answer 'out there'. The problem is 'in us' but that is where doctors just dont know how to start searching.
    Why cant it be that if I put down the HHV6 infection in me, it will give my immune system a chance to heal and go after the other viruses ? XMRV has been found in healthy normal people too. It maybe that they have a super immune system or it may also be that if we were ordinarily healthy our immune system would be able to keep the virus down. I am not holding my breathe on that though. If it could happen, it would have already happened long ago.

    I for one believe that 'ignorance is bliss' and 'what i do not know, cannot hurt me,' so no, I dont want to find out about the XMRV, not yet. :)
  16. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    Read this about testing from the HHV-6 Foundation: http://www.hhv-6foundation.org/testing.htm It's not only a matter of interpretation.
  17. undcvr

    undcvr Senior Member

    Messages:
    792
    Likes:
    127
    NYC
    I guess my doc did not have a problem with that because the very first test that he issued for the HHV6 were the IGG and IFA tests like those mentioned on the website. He was looking for the virus indirectly through my IgG levels already. Its just that the conclusion he came to was: past infection even as my values were way out of range.
  18. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    My PCP said, "Healthy people can have titres in that range, so this is no evidence you have an infection." **sigh** TG for Dr Lerner.
  19. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    hi
    I just got some viral titers back.
    Lab was Quest.
    My HHV6 IGG was 1:40 H ( reference range <1:10)
    IGM <1:20 (reference range <1:20)

    My ID doc didn't think it was a current infection.

    What do you think?
  20. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    My question to your ID doc would be, "If the lab results are labelled HIGH and I have the symptoms of a viral infection, WHY would you say it ISN'T a current infection?" My guess is that you might get a variation of the same thing I got from my PCP -- that healthy people don't get reactivations of HHV-6. Notice the assumption that you're not really sick. Maybe your ID doc will have a better, believable reason....

    I'm thinking 4x above the reference range is a bad sign, but I'm no medical professional. Any chance you could see Dr Montoya (Stanford U) or Dr Lerner (Detroit)? You'd probably get a better evaluation from one of them.

See more popular forum discussions.

Share This Page