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Rituximab, Equilibrant & Valcyte Experience thus far

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by energyoverload, Oct 17, 2013.

  1. energyoverload

    energyoverload Senior Member

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    London
    I thought it would be worth sharing my experience with Equilibrant, Rituximab and Valcyte thus far.

     
    I trialled Equilibrant for a total of 7 months at 3 tablets twice daily. I initially weaned up the dose but experience a significant feeling of inflammation in my head that was quite unbearable. This lasted some 6-8 weeks. Unfortunately Equilibrant didn't seem to have any noticeable beneficial effects whatsoever despite the strongest herx I have had to any intervention.

     
    So I ended up getting Rituximab, I had around 5 infusions. To my amazement after quite some months, I began to experience 'fleeting' moments of quite dramatic improvements in global symptoms. These moments lasted from around 6 hours to a whole day at a time. These periods had been the greatest level of improvement I have experienced since getting ill, but unfortunately the sticking point is these improvements did not become more frequent or last of a longer duration.

    I also tried methotrexate at 15mg/weekly for 12 weeks as I believed the beneficial effects of Adenosine A2a agonism on inflammation might prove useful in this disease - this is the only intervention that has significantly improved my heat intolerance and POTS symptoms. But unfortunately it did not help with sleep, weakness, pain or any other symptoms. I terminated treatment at 12 weeks because of elevated gamma gt levels.

     
    So now I'm onto Valganciclovir.900mg Once Daily. I wonder somewhat if I had of been on it whilst having the Rituximab if the results would have been greater, but who knows!? So far I've only been on it two weeks and I'm getting moderate headaches every so often helped a lot by naproxen and codeine and bad heart pains that do not alleviate with aspirin, but fortunately these have not been as bad the past few days. I will get LFTS CBC's etc retested in about a week. Also taking milk thistle to protect the liver and maintaining good water intake. Will let you know how I get on.


    Energy
    Sparrowhawk and vli like this.
  2. vli

    vli

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    CA
    I have to say, your experience with Equilibrant doesn't seem unique. i'm sure there're other threads here by ppl who've said they felt no improvement with it either.

    Seeing your location, do you mind my asking who you got a script for valcyte from? A doc in London?

    vli
  3. PGHCFS

    PGHCFS

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    Pittsburgh, PA
    Interesting.
    I like Equilibrant, I've been on it for 9 months and I really think it is helping. I've also added Inosine and L-Lysine -- I think the combo is helping me, but everyone is different. I certainly still have some bad days, but nothing like before I started these three supplements.
  4. energyoverload

    energyoverload Senior Member

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    PGHCFS, That's interesting your experience. As I know L-lysine may help inhibit herpes viruses possibly by arginine depletion, the inosine like a cheap version of immunovir and equilibrant for enteroviruses. Do you think the inosine made the biggest difference or it's probably impossible to tell. VLI, I'd rather not say.

    Energy
  5. SOC

    SOC Moderator and Senior Member

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    Equilibrant helped me, too. I had parvovirus and coxsackie infections that cleared up with a low dose of Equilibrant. I felt generally better, but I wouldn't call it either a rapid or a huge improvement. I went off it for about 6 months, but some of my labs got worse and I had more "minor" infections, so I'm going back on it again as soon as I get my hands on some. :)
  6. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Is Equilibrant prescription only? I thought you could just order it off Dr. Chia's website?
  7. SOC

    SOC Moderator and Senior Member

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    It's OTC, no prescription. You order it here. I just did it a few minutes ago, so I'm pretty sure it works. ;)
    RUkiddingME and Sparrowhawk like this.

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