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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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General Survey re: Anti-virals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jul 20, 2014.

  1. rosie26

    rosie26 Senior Member

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    @jimells Have you ever tried D Ribose ? It helped shift me up a level out of an agonizing severe level of ME. Gave me a little extra energy and as a bonus it has helped ease some awful nausea.

    Because of the little extra energy it gave - it helped lessen some PEM.
    Last edited: Jul 22, 2014
    jimells and Gingergrrl like this.
  2. RUkiddingME

    RUkiddingME Senior Member

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    Hi there, you might have seen my Valcyte blog before (link below) but its is the easiest way to explain my experience with anti-virals. I have been on Valtrex, Famvir and Valcyte. I'm also on LDN. I am overdue to update my blog but am in a short crash right now, post travel. I was on Valcyte 15 months with no problems and tolerated it like candy. I was off from April to June and now I am back on for six months. The three weeks before this travel crash were my most active in five years. I still have to nap every single afternoon but I have some quality of life!! I even drove myself to the mall and made to the store I wanted to go to near the entranced, shopped and drove home. I never thought I would be able to do that again! I am also wearing a heart monitor every day to make sure I don't over do it. On the days that my heart is beating too fast just when brushing my teeth, I know I can do absolutely nothing and it seems to help as well as electrolyte drinks every day. Good Luck :thumbsup:
    http://forums.phoenixrising.me/index.php?entries/valcyte-2013-14-month-15.1587/
  3. Hip

    Hip Senior Member

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    One other interpretation is that it is not the viral particles (and antibodies to them) that cause ME/CFS symptoms, but some other aspect of the herpes virus infection.

    For example, Dr Kazuhiro Kondo discovered the SITH-1 protein which is made by HHV-6 even in its latent state. Kondo's work indicates that SITH-1 may cause the psychological symptoms (mood disorders) of ME/CFS, major depression, and bipolar disorder. More info on SITH-1 in this thread.

    And, if as has been suggested, the symptoms of ME/CFS are due to inflammation (immune activation) in the brain, perhaps the severity inflammation does not depend on the number of viral particles (and antibodies to them) in the blood.

    Though certainly the possibility that Valcyte may be reducing brain inflammation by inhibiting microglia is very interesting.
    Last edited: Jul 25, 2014
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @RUkiddingME I just read your entire blog from cover to cover and it was extremely helpful as I am about to embark on the anti-viral journey. I will be getting all my test results on Mon so still don't know which viruses I have (besides EBV) or med yet. Your blog showed your ability to keep your sense of humor and find joy with your family throughout the experience which I really admire (and aspire to!)

    I have some questions for you and hope you don't mind!

    1) Was Valcyte your very first anti-viral experience or had you tried Valtrex and/or Famvir prior to Valcyte and found they did not work? I was not clear on the sequence.

    2) Was severe mono from EBV your initial trigger three years ago or was it something different?

    3) Did you have any cardiac/autonomic symptoms like tachycardia, POTS, OI, shortness of breath, etc, and if so did the Valcyte help those?

    Thanks in advance for any info and please keep writing the blog!
  5. RUkiddingME

    RUkiddingME Senior Member

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    So glad you enjoyer my blog! :):thumbsup:

    Valtrex was the first one I tried, at the time, not knowing it wouldn't do much for the HHV6. I was on very high dose of Famvir for four months and my doctor thought I should have seen a difference so I convinced him to put me on Valcyte, I just had a gut feeling that I would be one of the 50% who would benefit from it.

    I got sick in September 2009, the best and most active year of my life. I suffered from a very nasty cold and sore throat in August and early September the three week severe insomnia started followed by the severe fatigue and not being able to lift my feet when I walked. ( I tested negative for mono at the time). It was straight downhill from there.

    as with POTS, tachycardia etc. When I was still bedridden I would get POTS symptoms when getting up. At the very beginning of my illness, standing up still was already a problem. Even with Valcyte, if I over do it in any way I still pay. Having conversations wipe me out. I have days when I am very short of breath, a sign not to do anything. I also find chewing very tiring. when I'm in crash mode my eyes burn, I believe that's a sign that some inflammation is going on.

    What the Valcyte did for me is allow me to get up and dressed mostly every day. Being able to read again and to have my eyes open in a car is huge!!! Able to drive a short distance on a very good day and look perfectly normal in public without the wheelchair is so worth it. (Although I am a long way from saying goodbye to the wheelchair, I'm good for 200 steps on a very good day without it) I also don't feel like my head is swollen and about to explode. I think the HHV6 did a number on my previous smartness, because I have become stupid. :nerd:Can't even figure out simple equations etc lol. Unfortunately I am still Type A personality and can't sit still when I feel a little better. I don't need much to be happy and would be ok if I don't improve beyond this point. I lived the best life ever before getting sick and those memories can keep me going :)

    Best of luck to you!!:). let us know how you make out
    Nat
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @RUkiddingME Thank you so much for the info and I hope you keep up the blog! When you said you took a high dose of Famvir, do you remember how much it was? No worries if you do not remember.

    It sounds like our situations are a little different as I had confirmed mono/EBV as the cause of my symptoms but we have some other similarities. Did your POTS type stuff reduce or go away once you started the right anti-viral?

    You have a great attitude about life (from your posts and blog) and I am striving to be more like you every day!
  7. Rlman

    Rlman

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    Sushi, has Nexavir helped you? is yes how?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, a lot, though you have to use it a long time to get results. I no longer have herpes simplex outbreaks, my EBV reactivated titers have gone way down, no longer have canker sores (not sure if this is due to Nexavir or other treatment), and generally feel better after injections.

    Sushi
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  9. Charles555nc

    Charles555nc Senior Member

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    Ldn, low dose naltrexone 4.5mg, 300mcg selenium, lugol's iodine, molybdenum (detox), 2000iu of vitamin D, famvir, amantidine, organic grape juice, organic white and green tea are all stuff that worked for me. I didn't try anything low dose.

    Every couple months I do DMSA chelation as well to beat down heavy metals and strip biofilms.

    Just started colloidal silver...and tomorrow doing some hyperbaric oxygen.

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