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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 Community Support Volunteer

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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 Community Support Volunteer

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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.
     
  10. Woolie

    Woolie

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    Hi, I've been on valtrex for eight months now. My MECFS had an severe acute viral onset 24 years ago when I was 25 - I never tested positive for EBV but it had a lot of the hallmarks, plus I was still in the age range for it, so figured maybe EBV was the place to start. In NZ, there's not uch opportunity for testing, so you just have to try and see (and even then, only if you import and pay for the drugs yourself and your doc is up for it).

    First three months, I definitely noticed a change, and that was backed up by my partner who recorded numbers of days in bed. It was great and I thought it would continue, but the last four months, the pattern seems closer to my previous baseline. Is it possible we can respond for a while, then fail to do so?

    I'm pretty high functioning and my MSCFS has a very flu-like, relapsing-remitting pattern, with few allergic complications. So I figured I'd have as good a chance as any with the valtrex. But maybe I'm just too old, and my immune system is just too damned screwed up now. Or maybe I have other viral infections. I haven't give up though and will keep documenting it for another eight months before deciding.
     
    Little Bluestem likes this.
  11. Woolie

    Woolie

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    On a related point: What about latent viruses? Your views please!

    In my latest reading I've discovered that latent herpes viruses in our B cells can mess up our immune reactions very badly - they can alter cytokine production so badly as to produce many of the key MECFS symptoms on their own. And these latent viruses cannot be killed by antivirals (those can only stop infection of new cells). In fact, latently infected herpes cells can reproduce themselves - including their viral contents - and this process is again untouchable by antivirals, which only target the bit where the virus independently infects a new cell. I also read that latently infected B cells can even live longer than normal B cells (even become immortal - then you have a tumour). Lerner's idea is that if you stop the recruitment of new uninfected cells with antivirals, and do it for long enough, some of your latent viral load will have to go down, simply because some of the infected B cells will eventually die of natural causes and there's no new ones to take their place. But maybe that doesn't actually impact enough - especially if these infected cells are as hardy as they seem to be - and capable of replicating themselves and their viral contents to boot?

    Perhaps a better answer is to complement antiviral therapy with a B-cell killing drug like Rituximab, and maybe there are others too? I did read that statins are good at selectively killing latently infected B cells, at least in vitro, but other members of this forum warned me off those completely. Has anyone else ever thought along these lines?

    There remains the rather unsettling third possibly: that the virus itself is no longer the problem. Rather, our prior fight with it (or whatever we fought) has somehow caused our immune system to learn very bad habits. I tend not to favour this idea, because to me it seems odd to think that a perfectly healthy 25 year old's immune system could go so awry from one infection - however severe - that the impact would still be felt 24 years later. It makes more sense to me that there's something "driving" the abnormal response, and that would be a virus.

    Is there anyone out there who has any thoughts on this?

    Thanks!
     
    L'engle likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What dose of valtrex are you on? Theres talk that sometimes we need higher doses for deeper tissue penetration of the antivirals. Im thinking that maybe even higher doses for short period of time and then back to a maintenance dose for crashers where we think viruses are reactivating??
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its my understanding too that antivirals dont work on latent infections, but i guess staying on av's all the time is going to be there ready for when they do, or one can wait until they have viral symptoms and hit it with the antivirals??

    I have a theory that reactivation and replication are 2 different things, although a virus cant replicate unless its reactivating, if that makes sense? So antivirals only stop the viruses replicating and multiplying but they can still reactivate/wake up and suck the life out of us.

    What i have found is i still have crashes on antivirals but they arent as severe as pre avs and recover quicker, maybe the long term avs has reduced the viral load so when they do reactivate its a much smaller viral load?? I think there may be some mechanism in antivirals that pushes the virus into a latent state, but at some stage they will reactivate unless we can totally clear the virus??

    Maybe we are wasting taking antivirals when the virus is in a latent state, maybe long term it could work better to let the virus reactivate and then hit it hard with the antivirals as thats when the antivirals can do their job.

    B cells carrying viruses is a theory i think some experts are looking at in the USA, there was talk of a trial of rituximab and valcyte. Also herpes viruses could be hiding out within our nervous system and brain in a latent state. I would also like to see an ampligen and antiviral study done.

    I guess the main problem with the herpes sub group is that we cant totally clear the virus from our bodies and for many their immune system isnt strong enough to keep viruses suppressed after antiviral treatment. Thats why we try the immune mods etc to kick our immune system into gear especially our nk function. Herpes viruses have a way of avoiding the immune system by turning down our interferon production which then lowers our nk function, sneaky buggers.

    cheers!!
     
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  14. Woolie

    Woolie

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    @heaspreal, I'm om the Lerner protocol, 4x1000mg daily. As you say, dose is everything. Lerner's idea is to space the doses as evenly as possible throughout the day, because each dose has an effectiveness that is time limited (about 4 hours, I think). So you want to maximise your protection.
     
    SOC likes this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cool, you cant go much higher than that.
    Many use a lower dose due to cost, so have room to increase the dose?
    I guess the next step is maybe look into trying another antiviral??
     
  16. josephine2

    josephine2

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    And of course any other info you can provide would be great. Thank you so much in advance to anyone who responds![/QUOTE]

    I've just started Famvir with very long dx with EBV - I actually drink Guiness once in awhile and realize this might not be a good idea. But suffering with illness - is even this small escape forbidden?
     
    L'engle likes this.
  17. Woolie

    Woolie

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    Have found a good source, using one of the online pharmacists on pharmacychecker.com. USD1.36 a 100mg pill. So you see, way, way cheaper than the next step up.

    Oh, and heapsreal, your idea of pushing the virus to go lytic and then attack it is exactly what they do for EBV lymphomas. Its a brutal business, though, and not one Id be willing to risk. I'll try to find some links to articles.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Alldaychemist have good priced avs. Not sure which av you referring to maybe typing error 100mg dose? Not sure which av comes in that dose
     
  19. Woolie

    Woolie

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    Oh, sorry, 1000mg. Alldaychemist is a good price! Still, the pharmacychecker adds a level of safety that I quite like.
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    "I've just started Famvir with very long dx with EBV..."

    @josephine2 Just curious what dose of Famvir you are taking and how it is going so far?
     

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