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13th week of Valcyte

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by undcvr, Feb 3, 2011.

  1. undcvr

    undcvr Senior Member

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    So far all seems pretty good. I went for 2 mile runs twice this week. I came back feeling alrite and was not incapacitated by the runs. Not bad considering that it is the winter months that I usually have to stop all physical activities and hibernate if I want to avoid a relapse. So basically since November I have been improving and rather quickly. In many ways the improvements have been very noticeable.
    I have been able to do physical activities even before the valtrex or the valcyte. I credit this to my diet i put myself on. It was just that everytime I did excercise I would then be passed out on my bed for a few days. It was scary. This is the first time that I think that I am able to get some amount of fitness back.

    Some questions still bother me:-

    If, like i think, I have been recovering even before the Valcyte, why is it that only the highest dose of Valcyte works for me ? The lower doses did nothing. Same for Valtrex.

    Once I go off the Valcyte, what then ? A relapse ??? So this isnt even a recovery at all, just some bizzard cosmic joke of a temporary succor. And I'm the punch line. So not funny.

    I am also bothered by sneezes and a not-too-clear throat which I hope to put down to just winter blues and infections. Otherwise if I test neg for the ebv the next time round and if I am still sneezing, then there could probably be another virus or bug somewhere inside me. I was supposed to go for more tests for a whole bunch of viruses and bacteria but I put it off for awhile just becos I was so sick and tired of being stuck with needles and I wanted to see if ebv was it. I know the chances are pretty low given that anyone with cfs is probably coinfected with something else too.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    its always 3 steps forward and 2 back, sometimes 3, im taking 2 back now, it sucks, but u have to try and ride out the storm.
  3. undcvr

    undcvr Senior Member

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    Since I am on the Valcyte, I have decided to go on the methylation as well :

    7.5 mg Leuvocorin (am)
    7.5mg Deplin (pm)
    15 mg methylcobalt (Source Naturals)
    5 mg Dibencocize ( S.N.)

    Unfortunately, it feels like I am falling sick and relapsing. I really wish it was 'say it aint so', but this keeps on happening. Will there ever be a time when there will be no detox reaction ?
  4. Grape Funk

    Grape Funk Senior Member

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    Undcvr, you still exercising like you were in previous weeks? playing tennis 3 hours and running daily?
  5. undcvr

    undcvr Senior Member

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    Now on hindsight I am going to put down the mini relapse I am going thru to methylation therapy. It coincides with the time frame when I started to feel 'off'. At that time I did not associate the 2 but now it makes sense given the high doses of stuff I took. Also the symptoms are very transcient and passing and I am feeling back to my old self again.
    What is interesting also is that just taking high amounts of active folate was not enough to trigger the detox reaction from methylation, i really had to take methyl B12 too for that to work. I was thinking that fixing the folate cycle for dna/ran synthesis itself would help some, but it did not.
    It has been a week since the detox symptoms started and I am feeling much better. I am also able to recognise the symptoms of detox better. For the whole week I basically had brain fog where my short-term memory just disappeared. Everything seem to be inflamed. Nausea, lightheadedness, headache. I would double the dose of every supplement I took but nothing seemed to work. It would seem like a cold or flu except that those symptoms themselves were very transcient and passing. Mild sniffles at most, no fever. I was thinking that on the Valcyte, if I triggered the immune that it would rev upwards. That if ordinarily it could not handle ebv or hhv6, it would be able to now. For the record, this is one of the shortest detox period in years. Mine usually lasts longer than a week. A few months is not uncommon where I would be totally incapacitated. There is definitely some amount of IRIS going on for each round of detox.

    I am going to try running tomoro.
  6. undcvr

    undcvr Senior Member

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    Wanted to go running yesterday but instead went out to hit some tennis at a request of a friend's. Played for almost 3 hrs. After effects were abit tricky to deal with as I felt like I was getting some PEM. But I went to bed early and with the help of ldn and trypt got in about 12 hrs of sleep.

    Woke up late this morning, but also woke up feeling rested. Residual PEM but very low grade. If anything my whole body feels incredibly sore and I will take alot of NSAIDs for that.

    Still experimenting with what my new limits are.
    Previous round of methyl detox took about 1 week to recover from.

    Feeling funky today but functionable. I am guessing that if I had a day job, I would have been able to make it into the office. I would have arrived late for work though.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    sounds promising though. Pity u dont live closer, i dont mind a game of tennis, but 3 hours would kill me, lol.

    Have u tried the cyclo yet??
  8. Grape Funk

    Grape Funk Senior Member

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    undcvr , whats your status like, you still prevailing?
  9. undcvr

    undcvr Senior Member

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    I am doing fine thanks for asking. Been busy runninng around and getting things done since I am not housebound anymore. Also means I dont post so much, lol.
    Still on the Valcyte and on a few other therapies as well. In general I run about 2 miles 3 times a week now, its been a really nice feeling. Sometimes I get alittle PEM but nothing a good nite's rest cannot take care of. Sleep more soundly too in general. Its been awhile since I have had my last overstimulated day.
  10. Grape Funk

    Grape Funk Senior Member

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    good to hear man, sounds like valcyte is doin its job
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    doing well, good onya!!

    cheers!!!
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Glad to hear you are doing fine. Just curious if you get a "runner's high"?

    GG
  13. undcvr

    undcvr Senior Member

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    No, dont think i have ever experienced one at all. As far i it concerns me, it is a myth. I know of many pple who say they get it though.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    thanks for the response, I don't experience a "runners high" since becoming sick.
  15. undcvr

    undcvr Senior Member

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    I just thought I should mention that besides taking the Valcyte, I am taking about 3 other antivirals as well. I am hoping my doctor will approve one more. This is by choice and a decision that I made myself based on all the research that I have done and based on how my body is responding to them.

    It is an educated and experimental guess to the basis of where my CFS actually came from. So I am on my own 'trial' as well so to speak. I dont know if this is what has affected my response to the Valcyte and there is so little research out there on this that I dont know how to streamline what I am taking even if I wanted to.
  16. Timaca

    Timaca Senior Member

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    undcvr~ What other antivirals are you on? And which one do you wish to add and why?

    Best, Timaca
  17. undcvr

    undcvr Senior Member

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    I know I want to add Isentress becos it is an integrase inhibitor and works on DNA viruses as well.
    Right now besides the Valcyte, I am also on Valtrex, Amantadine and Tamiflu (when I can get it). This is all HIGHLY EXPERIMENTAL and as of yet there is no research out there that shows that any of them help. But I do feel better on them and I do not think it is a placebo effect.

    My decision to take Valtrex and Valcyte together comes from the fact that they work on different sites on viruses. I am taking these AVs on long term protocols and not just as directed. Altogether all these AVs work on various different sites on viruses and different viruses. There is no research out there that they work at all. I am doing this just based on my experience with cfs and the realisation that the medical community really dont know what they are talking about sometimes.

    I seem to have a hole in my immune system that lets viruses in. I have had planar warts that I could never get rid off after trying for 15 years. Nothing worked. I am also prone to falling sick. It is very seldom an all out crash, but it does debilitate me in my daily general work. Putting the pieces together, this is the best conclusion that i can come up with as to what might work for me or not. I am also noticing that despite the high dose of Valcyte daily, there are times when I do feel like I am falling sick. So there are other viruses in play as well. It does not help that I am trying to run 2 miles 3 times a week to find out where my immune system is now.
  18. Grape Funk

    Grape Funk Senior Member

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    What do you plan on using the integrase inhibitor for though? As in what virus, or explanation did you come to to say "this is the drug i need."
    I also see Amantadine, i'm guessing would be used for the respiratory system defects(i get that as well) and i'm guessing the Tamiflu for the general Flu like symptoms, runny nose, sneezing etc.

    One more thing, have u been alternating them at all, ie. all with valcyte, none but valcyte? to see progress
  19. undcvr

    undcvr Senior Member

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    It is experimental, I have no explanation. I do know that when an anti viral works on various sites of a virus, these sites are present on other viruses as well. It is just that there are not much studies out there. So when I say I am taking Tamiflu, it is indicated in the Influenza (A ?) virus but that my not be the only virus it acts on and I may not be taking it just for that virus either. That is my rationale.

    I do not alternate them with Valctye, I am only stacking them with Valcyte. I am not going to alternate them cause that is one of the ways viruses become resistant to AVs. Valcyte works, I know that. It is just that I cannot raise the dosage of Valcyte anymore and occasionally when I push myself I am still feeling run down.

    Another thing, I have had the flu shot this season. Theoretically, I do not need the Tamiflu since it only works on that one Influenza strain. But I am noticing that it is still working so that theory, when it comes to my body, is becoming very suspect.

    I have not fully researched the integrase site on viruses and still need to keep reading. What I do know is that all viruses have them and it is the site on the cell that the virus uses to 'integrate' itself into it. I also know that that specific site on viruses mutates very quickly. Perhaps explaining the only temporary recovery seen in patients taking ARVs for XMRV if it was not just the XMRV Isentress is targeting. I think Isentress will show up to be a very versatile AV drug in future anyway even if it cannot be used alone. IMO, monotherapy was never the way to go either.

    And then there is the other factor of that we just do not know exactly how all these AVs work and there maybe other genetic processes in the body that it can help. Eg, stray incomplete viral particles just floating around and doing damage, viruses inserting themselves into genes and staying there seemingly latent but not. Some of these hypothesis are so far out of mainstream that they are not even considered. But if there is anything that anyone with CFS knows is that we need radical out-of-the box alternative theories to explain what is happening to us.

    Btw if you read up about Tamiflu, its antiviral effects is described much broader than the general public thinks. Other drugs to look into are definately the anti malaria, anti TB drugs.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi undcvr, i noticed a difference when using valtrex with famvir, i think it had an additive effect and i also think that because i have taken february off of cycloferon i am not feeling as well. So im going to get my lymphocyte test done next week and start back on cycloferon. It will be interesting to see my lymphocyte test after being off it for a month.

    cheers!!!

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