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Valcyte and Insomnia

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by soxfan, Jul 10, 2011.

  1. soxfan

    soxfan Senior Member

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    I am only on my third dose (450mg) of Valcyte and I am already having huge sleeping problems. The first two nights I couldn't fall asleep in spite of taking my sleeping meds. Then last night I woke up 5 times.
    I tried Valcyte 2 years ago and never even reached the 900mg because of the insomnia problems.
    Will this go away with time or will I have to either decide if I want to sleep or keep taking the medication?

    I am so upset that this symptom is happening so soon. Also it makes me very drowsy. The first day I took one and went out to do a couple errands. By the time I was driving home I could hardly keep my eyes open..

    Anyone else with these symptoms? Thanks.....
    redo likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I havent had any experience with valcyte yet, but will watch your thread to see how it go's. Is it an option to use valcyte every second day until u get use to it and maybe use another antiviral everyday like valtrex/famvir. When i get started i will be using just 1 valcyte a day along with famvir.

    cheers!!!
  3. redo

    redo Senior Member

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    Did it go away when you kept using Valcyte soxfan?
  4. soxfan

    soxfan Senior Member

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    I quit Valcyte because it was giving me such bad fatigue/exhaustion I couldn't even get up out of bed...doctor wants me to try acylovir now but I haven't started it yet.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ask for famvir soxfan, it can help with many of the herpes viruses without the toxicity of valcyte.

    cheers!!!
  6. undcvr

    undcvr Senior Member

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    The exhaustion and fatigue from Valcyte might actually be a good thing from a contrarian/Herx point of view but if it is too much it is still wise to go off it for awhile.
    What if the Valcyte did stop the virus from replicating and this awakens your immune system that has been suppressed by it for so long. The immune system attempts to rebuild itself correctly and to function properly drawing huge amounts of energy in its direction, causing tiredness elsewhere.

    To have had this illness for so long, it takes time to rebuild yourself up again.
  7. soxfan

    soxfan Senior Member

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    I had the exhaustion after only 6 days on 450mg. It was so bad I really couldn't function at all. The doctor hasn't any idea if it was a side effect or the Valcyte was actually doing something. He wants me to try the acyclovir now and try and start it that way and maybe build up to the Valcyte. I am going away for a week so it will all have to wait till I get home.
    My doctor said it shouldn't cause a herx effect....I was on abx for a long time for Lyme and never once had a herx so I don't really know what they are suppose to feel like. He also felt that at 450mg it shouldn't have much effect at all since I was on it for such a short period of time....confusing as always.

    I am not sure my immune system is suppressed. My doctor seems to think it is in overdrive as I never catch anything. I just have no clue.
  8. undcvr

    undcvr Senior Member

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    If your immune system is in overdrive why were you on abx in the past ? An over reactive immune system shows up as inflammation with auto-immune like conditions. Do you remember having any of those ? Did you ever have tests done on your NKC activity ?

    Also I think that whether over or under reactive, the whole point is a dysfunctional immune system that needs to learn how to function appropriately in various different conditions.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, I believe I tried Valctye for 2 months, I think the same Doc? I was the one to actually mention it, he didn't have any idea about it. I did not notice anything with it, perhaps this means I don't have much for the Herpes family viruses?

    GG

    PS Hope you enjoy your time away.
  10. undcvr

    undcvr Senior Member

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    GG what made you think of trying Valcyte ? Were your viral levels high ?
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I probably heard about it on this site, and just mentioned it to the Dr, and he agreed to give it to me. No viral levels are not high, I don't really see a Dr that has interest in that though. When the big XMRV news came out, I went and saw a Dr south of Boston, and had a lot of testing done, but he did not see anything to treat. The Dr was interested in whacking XMRV though, when more info becomes available, that was bout 2 years ago now.

    GG
  12. soxfan

    soxfan Senior Member

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    I haven't been on Valcyte in well over 2 months.. I just felt that there wasn't enough evidence that I had any type of reactivation in the virus's. Plus it was making me super tired (totally incompacitated) after only a week. I was retested for EBV and there was no evidence that it was a active infection but an old one even though the titers were somewhat high. At this point I am doing no treatments at all. Dr wanted me to try acyclovir but I haven't as of yet....
    I did have a nice vacation although fighting the extreme tiredness the entire time I did pretty well...thanks
  13. undcvr

    undcvr Senior Member

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    Are you saying that you did a PCR DNA and it showed up as 'undetectable' or that the only tests that were available to you were indirect IgG titers tests which cannot distinguish between old and new infections ? Very important difference.

    Its also not unlike EBV to come and go unfortunately.
  14. soxfan

    soxfan Senior Member

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    I had VCA-EBV IgG and IgM titers done. I am pretty sure it wasn't a PCR DNA. Also had The EBNA and the EA done. I don't think I have ever had the PCR test done by any of the doctors. I don't even think they would know where to send it to.

    I only know that the doctors said it indicated not active...because only the IgG showed anything. I will try to explain how it was said to me.. If the IgG and the EBNA show activity then it definately means old infection. Because I had no activity on the EA or IgM then the EBV is not in an active state. I am not sure I am explaining it correctly. He actually had some paperwork which showed the different scenerios of what each reading meant and I did see that with the two (EBNA and IgG) showing greater than 5.00 meant latent infection. So once again I am unsure what to do....I guess I could try the acyclovir and see what happens. I don't see the doctor for another month so I would have to wait till then to find out about the PCR testing..
  15. soxfan

    soxfan Senior Member

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    I was also wondering if the EBV was active what symptoms would I be having? I really wish doctors would use one lab to test for all this stuff because it is totally confusing when the blood is sent to different labs that use different values.....
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    IGG test is very unreliable in that it cant tell you if ebv is reactivating, lymphocyte sub set test showing elevated cd8 lymphocytes is another indication that ebv is reactivating. If u felt worse on valcyte then maybe try acyclovir, valtrex or famvir. Many use these first for several months and when they return to valcyte dont feel ill or have a die off reaction from the valcyte. Plus it takes time for av's to work like a few months to notice an effect and longer before showing greater improvement.

    cheers!!!
  17. undcvr

    undcvr Senior Member

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    Sorry but your doctor has to catch up with new interpretations of IgG and IgM results otherwise he is still leaving a huge gap of people with CFS is the dark. I'm gonna PM you and see if I can help.
  18. chloe

    chloe

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    Yes, I experienced this problem. Even before Valcyte I have had SEVERE insomnia. This is my regimen (and keep in mind, you should not automaticlally incoporate it, but make sure it is compatiable with your own regime, particularly watching out for the potential risk of serotonin syndrome). So, as it gets dark, I take
    L-tryptophan (Source Natural) 500 mg, 6-7 capules;
    Melatonin (Source Natural) 5 mg, 6 tablets;
    Tegretol 600 mg (for headaches, but also helps with sleep)
    Remeron 45 mg (for sleep)
    and sometimes I take 20 mg Ambien, but like to save it for migraines. I find that a half tablet of Ambien under the
    tongue works wonders for migraine, but YOU CANNOT DRIVE AND TAKE AMBIEN FOR MIGRAINES. I telephoned drug
    company to let them know of this wondrous therapy, but they didn't want to know - so you read it first hear, folks.
    Then, I often wake up once at night, and take an additional 4 capsules of 500 mg L-Tryptophan (Source Natural) and
    maybe an additional tablet of Remeron.
    For me, it has been important to use Source Naturals products. They are absorbed by the gut more quikcly, and seem
    so much more effective --- despite their cost. Really, when it comes down to it, we have little more than symptomatic relief 20 years into this disease. Disgusting? Absolutely. So I buy things that will reliably provide me my "symptomatic
    relief."

    I would also suggest trying to get evaluated by a sleep specialist. They may have some things they can do to improve your situation. This regimen I worked out for myself in conjunction with a sleep specialist whom I very much respect --- Alex Clerk, MD, in San Jose, California. Don't say you have CFS. He doesn't want to be a magnet. Just wants to treat
    sleep disorders. But he did numerous sleep tests on me, and finally I can go to sleep and
    wake up rested the next day --- even if it takes me 12 hours of sleep to feel rested!!!

    Good luck. I found Valcyte a very difficult drug to take, and ultimately had a manic episode on it and had to stop. But
    for the brief period of the manic episode, it was fun! I spent over $5000, but was able to retrieve virtually all of it. My
    doctor, Dr. Kogelnik, did not warn me that neuropsychiatric symptoms can be side-effects
    of these drugs. Schmuck!!
  19. soxfan

    soxfan Senior Member

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    I have been to sleep specialists and tried many different medications. I actually had a sleep study done last summer 2010. I have tried at least 10 different meds or more for sleep. The only one that will knock me out is lunesta but I don't wake up rested ever. That is still my number one problem and no matter what the docs give me it doesn't help me feel refreshed. I tried a quarter remeron once and was hungover for 24 hours! I can't take anything sedating (even a little piece) as it doesn't knock me out just puts me in that drowsy state for the entire night..maybe sleeping off and on. I even tried liquid trazadone so I could control the dose and that stuff was a nightmare..as soon as I got up to 16mg I would be terribly hungover but not asleep. I tried that for almost a month and then gave up.

    I have come to the conclusion that I will just have to deal with my poor sleep as nothing ever helps....i deal with it the best I can. I doubt I will ever take Valcyte again...I am not convinced I have any active virus's it would actually help. Thanks for the tips...I have actually tried everything you listed and much more!
  20. undcvr

    undcvr Senior Member

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    Sox there is a very interesting drug out there called Flexeril. It is actually marketed as a muscle relaxant but one of its side effects is that it promotes REM sleep. I like it and have used it alot. It does not knock you out like Lunesta or Ambien and when you wake up in the morning you don't feel groggy.

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