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My possible Valcyte miracle!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RUkiddingME, Apr 20, 2013.

  1. RUkiddingME

    RUkiddingME Senior Member

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    Christopher, Ruthie24, cph13 and 6 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Wow, that's fantastic! Congratulations! I'm really glad you're so much better and I hope you're enjoying every minute.

    Thanks for posting about this. I've got high HHV-6 titres and am trying to get Valcyte.
    RUkiddingME likes this.
  3. SpecialK82

    SpecialK82 Senior Member

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    Congratulations RU - How exciting!! Wish you all the best as you test out your new limits and engage with your surroundings everyday. Please continue to post and let us know how you are doing, I would love to know if your HHV-6 titers have gone done in accordance with your symptoms. I haven't read you entire blog, so please forgive me if you have answered this already. I have heard several people report that while taking AV's for their high EBV titers, that the titer levels didn't seem to rise or fall according to how they felt.

    So happy for you - Woohoo!!! :balloons:
  4. Scavo86

    Scavo86 Senior Member

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    Congrats :) very happy for you! Are you still on 900mg twice a day?
  5. RUkiddingME

    RUkiddingME Senior Member

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    Thanks Scavo!! On 900 mg a day at breakfast. Was only on 900 mg twice a day for first three weeks.
  6. RUkiddingME

    RUkiddingME Senior Member

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    Thanks so much it's all so hard to believe!! I will post my viral titters as soon as I get my results back. :)
    SpecialK82 likes this.
  7. RUkiddingME

    RUkiddingME Senior Member

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    Thanks! It is truely amazing! I am enjoying every second. I hope you can get your hands on it. It took me 1.5 years to convince the drs to put me on it.
    Sasha likes this.
  8. Scavo86

    Scavo86 Senior Member

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    Thanks for letting me know, I am starting Valcyte in 2014 so am in the process of trying to price it all up.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    rukiddin u have joined the placebo group with myself, soc and a few others who have improved lately on valcyte but because its not published in the NY times, it isnt proof it helps.

    Thats great u have improved, now we have to try and get a group of us who can exercise to a level of normal people without getting pem etc. I find i dont feel sick all the time but just have that bit of lethargy left, still sleep issues and restless legs but even they arent as severe as they once were.

    maybe we need a thread of valcyte responders and nonresponders with dosages used and length of treatments, also other antivirals would be good to see too.
    john66, Creekee and merylg like this.
  10. RUkiddingME

    RUkiddingME Senior Member

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    Thanks Heaps! Yep until we make the NY Times we are full of S@&t right? Lol. Sure would be nice to have a nice survey like the Famvir one done up for Valcyte, unfortunately my brain is still too fried to attempt anything like that, plus it is hard to have all the ex and current Valcyters to visit the site and see a survey without getting notified of its existence. I am always so surprise to see how many of us were physically active in sports and very athletic in general prior to illness onset. I do believe it could be one of the triggers in viral reactivation.
    heapsreal likes this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Many just move on i think when they get to a certain level of function, me i hang around as i want that 100%, 80% not enough, still fluctuate alot too due to sinuses etc I think i want the 100% so i can get back into sport, i think that makes it frustrating for us X sports people.
    merylg and RUkiddingME like this.
  12. Captain-Ger

    Captain-Ger

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  13. RUkiddingME

    RUkiddingME Senior Member

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    Hey captain, I just found this old post of mine, hope it helps, also if you go on my previous blog entries, I have all my viral numbers listed at the bottom. Here are the tests I had done;

    HHV6 IgG and IgM panel, Herpes simplex 1 and 2, EBV early antigen, EBV EBNA AB, EBA VCA IgG and IgM and natural killer cell panel. To confirm my elevated HHV6 I also had a Rapid HHV6 culture, antigenimia and Nested PCR through Wisconcin Viral lab (positive)

    I also had a thorough workup last year which included:

    CMV IgG and IgM, M. Pneumoniae AB IgM, Parvovirus IgG, Coxsackie, Lyme panel, heavy metals, B12, all hormones. Hope this helps
  14. Captain-Ger

    Captain-Ger

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  15. RUkiddingME

    RUkiddingME Senior Member

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    Hi Cpt, I only got tested for PCR through the WIsconsin Viral Lab. I have my test in front of me, my report says that I tested positive for active HHV6 infection by rapid culture/antigenimia assay which they state is the most sensitive test they have for detecting active HHV6 infections. I tested negative on PCR for both EBV and HHV6. Report says that negative PCR suggests but does not prove the absence of HHv6 or EBV. If you look at the link below, it's very confusing as to which test is the best one as it also depends when your blood is drawn if the virus is shedding or if you are in a flare up. My doctor said I was very lucky mine was detected as their are many false negatives. Good luck :)

    http://hhv-6foundation.org/research/hhv-6-testing
  16. RUkiddingME

    RUkiddingME Senior Member

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  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    A possible miracle! I am surprised someone hasn't objected to that considering how much flack people get for using the 'c' word. Maybe you are experiencing abnormal wellness beliefs that are causing you to engage in wellness behavior. ;)

    Seriously, it is very encouraging to hear that someone has found an appropriate treatment. :thumbsup:
    jimells likes this.
  18. RUkiddingME

    RUkiddingME Senior Member

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    Thanks :). That's why I didn't use the cure word. It's my miracle. The fact that I am not stuck in bed unable to use my body or any of my senses like before is a miracle for me and proof that Valcyte is doing something. I am currently functioning about 30% of normal.
  19. jeffrez

    jeffrez Senior Member

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    Promising news for those of us with HHV-6 who are trying to get Valcyte. Thanks for the report, so glad you're getting some benefit and I hope it continues for you. :- )
    RUkiddingME likes this.
  20. RUkiddingME

    RUkiddingME Senior Member

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