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General Survey re: Anti-virals

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

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @WillowJ When you said you used famvir at low dose, do you remember what the dose was? No worries if you don't. What types of things did you try to boost the immune system? Also wasn't sure which supplement you were referring to that you quit? Did you mean Monolaurin or something else?
     
  2. Ema

    Ema Senior Member

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    Thanks. It's been a tough year. My ankle is better now. But it will probably always be a weak spot.

    Cidofovir is probably considered one of the more potentially toxic AVs due to the risk of kidney damage. That's why you get it with all the fluids and have to take a special med with it to protect your kidneys. That said, I've never heard of anyone getting kidney toxicity from it and I tolerated it just fine. There is supposedly an oral form, brincidofovir, coming to market eventually that will not have those risks and will be obviously easier to administer.

    I don't think that there is a typical time limit. Valcyte, I typically hear 18-24 months. Medicare covers it (knock wood so far) and I pay nothing out of pocket. So as long as my labs are good, I'll carry on. I will probably carry on with Valtrex much longer than that even since the toxicity risk is so low.

    But hopefully we will also have some other options to choose from in the coming years. AVs are still just a band aid for me anyway.
     
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  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Ema Thanks for explaining re: Cidofovir and I was not familiar with that one. I really am wanting to take something in pill form without any injections or IV's in the ideal world. I admire you and everyone so much who has tried different anti-virals for years and your info has been incredibly helpful to me.

    I've been very sensitive to meds in the past so when they say less than 1% could get the kidney or liver damage, I would be the one in the 1% LOL. I am hoping to start with Famvir or Valtrex and hoping this is what my Dr. suggests.

    That is great that Medicare covers your Valcyte and I did not realize that. I still have private insurance until Aug 31st and then we lose it and will switch to some form of Obamacare coverage which is why I don't think Valcyte is an option for me.

    I am glad your ankle is getting better (and I love the other thread hearing about your puppy!)
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl43

    Cidofovir may be better known as Vistide. The new oral form brincidofovir (available maybe 2015) sound very promising. Under trials it has been called cmx001 and it is looking good so far.

    Sushi
     
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  5. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Also, to anyone who knows the answer, if someone does not test positive for CMV, would Valcyte not be indicated for them?
     
    Last edited: Jul 20, 2014
  6. Hip

    Hip Senior Member

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    I think you are right with this analysis, and of course the same thing occurs with interferon for enteroviruses: Dr Chia found many ME/CFS patients do get much better with a course of interferon, sometimes achieving full remission for as much as a year after taking interferon, but then ME/CFS comes back again.

    Though one might have hoped that if you significantly reduce a viral infection using a course of antivirals, then the immune system might thereafter be able to keep the viral infection in check on its own, much the same as when you use antibiotics to significantly curtail a rampant bacterial infection, the immune system is thereafter able to keep the bacterial infection in check (if it couldn't, the antibiotics would be pretty useless).

    Perhaps, as you suggest, it is because our immune systems don't have the ability to keep these viruses in check, so that even when the antivirals have brought the viral infections under control, these infections slowly return after you stop the antivirals.

    This makes me wonder whether those who have achieved significant improvement from a course of Valcyte might benefit from thereafter taking a lower dose of Valcyte (say a quarter of their previous dose) in order to try to keep the virus at bay, and thus maintain their health gains. Using such a reduced dose will lower costs and presumably lower potential side effects. Or do doctors not recommend the indefinite use of Valcyte?
     
    Last edited: Jul 20, 2014
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  7. Hip

    Hip Senior Member

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    ME/CFS has been linked to HHV-6, Epstein-Barr virus, enteroviruses (specifically coxsackievirus B and echovirus), cytomegalovirus, parvovirus B19, Chlamydia pneumoniae, and others. So if you are positive for HHV-6, Epstein-Barr and/or cytomegalovirus, Valcyte would be appropriate, and may well help. Most of the adult population are positive for HHV-6, Epstein-Barr virus and cytomegalovirus, as these are very common viruses.
     
  8. Hip

    Hip Senior Member

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    I recently came across some interesting looking Russian antivirals and immunomodulators:

    Anaferon, which is stated to be effective against herpes and cytomegalovirus infections. Anaferon contains antibodies to gamma interferon. Although I am a bit confused as to why this product is classed as a homeopathic medicine.

    Licopid, an immunomodulator which enhances suppressed immune response, and can suppress autoimmune reaction.
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  11. knackers323

    knackers323 Senior Member

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    How long does it take to see some indication if an AV is having some effect?
    I know there is no exact answer but roughly.
     
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  12. ukxmrv

    ukxmrv Senior Member

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    I had good effects from Valtrex in the first week.

    (and I'm not normally a good responder to drugs)
     
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  13. Min

    Min Senior Member

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    I have never in three decades been tested for viruses nor offered antivirals, only psychobabble.
     
  14. ukxmrv

    ukxmrv Senior Member

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    Did you not see Prof Mowbray in the 1980's or any of the publicity around VP1 or entroviruses Min?
     
  15. SOC

    SOC Moderator and Senior Member

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    That's a good point. I believe several of the doctors experienced with AVs in ME are using Valcyte to knock back CMV and HHV6 infections, then using long-term Valtrex to try to keep the viruses suppressed. Valtrex, while a first-line treatment for EBV, is not all that effective for active CMV and HHV6 infections. It is, however much safer, cheaper, and doesn't require frequent blood tests to check for serious side effects. The expectation is that Valtrex will keep the latent infection suppressed even if it can't effectively stop replication of active infections. I hear that this treatment plan has worked for some patients.

    Unfortunately, it didn't work for daughter and I who both got HHV6 AND EBV reactivations while on prophylactic Valtrex. It took 2 years off Valcyte for the viruses to reactivate, though, which I'm willing to consider a positive situation. :)
     
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  16. SOC

    SOC Moderator and Senior Member

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    It varies a lot, as far as I've heard. I suspect that one factor in the variation is how crapped out your immune system is. AVs don't kill infected cells, they just stop viruses from replicating. Your immune system still has to do the hard work of killing off the already infected cells. My guess is that if your immune system is very weak and the infection is rampant, it takes your immune system months to start to even make a dent in the infection, and years to finally clear it. If your immune system is not as seriously impaired, or the infection is fairly limited, you might see benefits in a few weeks, but it still can take years to knock the infection back into latency.

    My daughter felt a bit better within 4-6 weeks of starting Valcyte. Her progress was very slow, but steady over 20 months. I was much sicker than her when I started Valcyte. I felt no difference for 4 months, then worse for 2 months (IRIS-like reaction), then suddenly a lot better after 6 months. After that my progress was also very slow, but definitely upwards.
     
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  17. Hip

    Hip Senior Member

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    I don't think you are going to get any viral testing on the NHS; you'd need to pay for it yourself. You can ask your GP to refer you to TDL testing lab, who can test for HHV-6, EBV, cytomegalovirus, parvovirus B19. Don't get the TDL enterovirus test, because their test is no good for chronic infections.
     
  18. Min

    Min Senior Member

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    Thank you
     
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Hip I want to try to re-word my question b/c I think I didn't ask it clearly. What I was trying to ask is, if hypothetically a person had active IgM antibodies showing active infection through a/v testing and only was positive for EBV (and not for HHV-6 or CMV) would Valcyte not be indicated for them? Versus if they had IgM for all three viruses, then Valycte is the best choice? For me now it's still hypothetical but just want to make sure I understand. Thanks again for any info.
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @ukxmrv What specifically did you notice from Valtrex in the first week and which virus(es) were you treating? I apologize if you already posted this elsewhere!
     

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