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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Which Anti-Viral?- choice of 4

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by LiveAgain, Mar 28, 2012.

  1. LiveAgain

    LiveAgain

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    I saw an ME/CFS Dr. and she thinks my symptoms are related to high EBV (EA), also have high HHV6. She did say it could be from poor immune system and not the virus itself. Said we could do LDN or antivirals or both. I'm going to hold off on the LDN for now. I've been at this for 15 years and haven't tried an anti-viral yet. She gave me 4 choices - Nexivir (liquid), Valtrex, Acyclovir and Famvir. I (like many of us) am extremely sensitive to medication. I have children to take care of and cannot afford to feel much worse. My question is which one should I try that will WORK without terrible side effects? I know there's no guarantee on any of this - just trying to get a sense of which one people tolerate best and also works. I tried searching on here for info on the different choices, but it's hard for me to weed through all this information (brain problems). Famvir seemed fairly well tolerated by several people. Ok, I'm just confused - I'll take any advice. Can you tell me dosage as well? Thanks.
     
  2. SOC

    SOC Senior Member

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    The first thing to understand is that AVs stop viruses from replicating, they don't kill infected cells. Something still has to do the killing -- either old age (normal cell apoptosis) or your immune system. If you're relying on your immune system to do the job and it's doing it badly, or if you wait for infected cells to die a natural death, you are in for a long wait. So there's a lot to be said for improving immune system function so it can get down to the business of killing off those infected cells.

    See this table about meds and their effectiveness for HHV-6 from the HHV-6 Foundation. http://www.hhv-6foundation.org/clinicians/hhv-6-treatment
    From that page:
    Valcyte, however, is very difficult for many people to handle. My daughter had no problems with it at all, but I had the more typical bad couple of months early on. I suspect some type of IRIS-like reaction. Since you have been sick for 15 years, I would guess you would be more likely to have the bad patch than not, but there's no way to know for sure.

    If you have HHV-6 but don't want (or can't get) Valcyte, I would think that an immune modulator (LDN, for example) would be your next best bet.

    However, it's possible that if you deal with the EBV using one of the AV's your doctor is offering, your immune system might be better able to handle the HHV-6 on it's own. Daughter and I have taken fairly high doses of Valtrex with no problems. I haven't tried the other AVs your doctor is offering.

    Daughter and I have high HHV-6 titres and EBV titres that go up and down in the high range. The best we've felt so far is when we were on both Valcyte and Valtrex. Daughter is in full remission, but is still taking Valtrex -- it's very safe as long as you drink lots of water to protect your kidneys. I'm looking to add some kind of immune modulators because I think even thought the AVs are stopping the viruses from replicating, my body is not killing off the infected cells fast enough. I also thing if the immune system is broken, it's a good idea to do what I can to fix it. That's just my personal opinion, though. :D

    Unfortunately, it's a complex issue with no single good answer. I hope you can sort out the information enough to make some progress.

    Good luck!
     
    Persimmon likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi LiveAgain,

    Probably the best we are going to be able to do here is share our experiences with these meds--which is not a statistically valid approach, but may give you an idea of the range of responses

    I personally have done well with the combo of LDN and Nexavir--but I also do take GcMAF which boosts macrophages and they do their job against viruses and infections.

    Both LDN and Nexavir can require slow titration up to dose to avoid side effects--particularly LDN which is given in very low doses at first. Nexavir has been shown effective in treating EBV & HHV6, but not using the usual modes of action. I needed to take less frequent (3 times per week), and lower doses of Nexavir for the first two or three months. Perhaps by that time it had done enough work that I could tolerate higher doses.

    I don't have experience with the other meds mentioned.

    Best wishes with this choice! You can always try several at different times.

    Sushi
     
  4. jstefl

    jstefl Senior Member

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    First off, I don't think that you should dismiss LDN so quickly. I have been on LDN for just over a year, and I have had some success with it. With LDN, you can start with very tiny doses that won't affect your life. I started at .2 mg every other day. That was a small enough dose that it had very little effect on my daily life. I increased the dosage every couple of weeks, and it took me almost 6 months to get to the 2 mg/day dose that is helping me. If you are as sensitive to LDN as I am, it makes sense to me to get started as quickly as possible. I feel that it is better to start small and work your way up than to start with larger doses and live with the side effects. The whole principal of LDN is that you must take a small dose that clears your system quickly.

    If you have a HHV-6 problem, Valtrex won't help. I took Valcyte for 8 months for my HHV-6, CMV and Parvo B-19 problems. I was fortunate to be able to handle Valcyte quite easily, and benefitted greatly from it. The HHV-6 foundation has a very good website that describes treatments for the herpes viruses. See www.hhv-6foundation.org for details on antivirals. HHV-6, I believe, is more serious than EBV and needs to be treated.

    Valcyte is very expensive, and can be difficult for some people, especially those that have been ill for a long time, to handle. You will want to be certain that your insurance will cover it first. It was not a cure for me, but it sure was a big improvement.

    It does seem odd to me that your doctor is leaving this decision up to you. Ideally, your doctor should tell you waht you need. I guess that you are fortunate to have a doctor that will work with you, I haven't been that lucky.

    John
     
    L'engle likes this.
  5. Grape Funk

    Grape Funk Senior Member

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    Hey john, what worked best for you regarding the parvo b 19 virus ?
     
  6. ukxmrv

    ukxmrv Senior Member

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    I'm impressed by how easy Valtrex was for me. Bring sensitive to medication I started with a small dose and then added to it. Tests in the past have shown EBV, CMV and HHV6. The Valtrex had a quick effect on the burning limbs I suffer from at night and then a longer good effect on the viral symptoms (sore throat glands etc). Then I added the immune modulator Imunovir and over the past year my overall health has started a small improvement.

    Both have been gentle with no side-effects.

    If I could I'd like to try Valctye (and this was what my doctor suggested) but it's just too expensive.

    Not tried LDN or many of the other things suggested as yet. An earlier trial of Acyclovir did nothing for me oddly enough.
     
  7. LiveAgain

    LiveAgain

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    Thanks for the responses. I wish my Dr. hadn't left it up to me either! I guess she figured I'd research it and make a decision, but I'm finding this very complicated and confusing. I don't like the idea of doing both LDN and an antiviral at the same time. I won't know which is working or giving me side effects or what. We don't even know for sure that these viruses are causing the problem, but I'm going to take antivirals - sounds scary and risky? But I've got to try something - sick of living like this.
     
  8. jstefl

    jstefl Senior Member

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    Grape FunK:

    Valcyte seemed to take care of all of my herpes viruses. After Valcyte, they all tested at very low levels in the blood. The problem, of course, is that they can hide elsewhere. I have recently started a generic Valtrex to see if I can get rid of any EBV that may be hiding in my cells. Strangely, I have had more trouble with the generic Valtrex than I did with the Valcyte. I plan to continue this for at least a year.

    Live Again:

    I am taking a variety of things at this time. Taking one at a time will make it easy to know if one particular drug is helping, but my goal is to get better, not do research. The reason that we have so many different viruses is that our immune system isn't doing its job. I feel that I want to do everything possible to aide my immune system in this process.

    There is no antiviral that will "cure" you, especially if you have been ill for a long time. Even if you get better with an antiviral, there is a good possibility of relapse. I strongly believe that the answer lies in doing everything possible at all times. I am taking Valtrex, LDN, methylation, artesunate, Transfer Factor and Beta Glucan right now. In the past, as I mentioned, I took Valcyte. This combination has made a huge improvement in the way I feel. I have gone from spending most of my day sleeping to the point where I am able to do active things for three to four hours a day. I still need a nap each day, but I am getting close to not needing that every day.

    John
     
  9. ukxmrv

    ukxmrv Senior Member

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    Don't feel in a rush and think of it as a project where you can try different things and see which work out for you. You've got over a huge hurdle that many of us face in finding a doctor willing to prescribe different things to try.

    We all want to get well quickly but rushing and trying too many things at once may be detrimental to those of us with sensitivities to drug. Maybe try one at a time and add things as you learn what you can tolerate.

    Good luck. Please let us know how you get on.
     
  10. Ema

    Ema Senior Member

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    I am working through the choices of antivirals as well. I started with Nexavir and have definitely noticed improvement though I am thinking about adding Famvir as well. I did not notice any particular side effects from starting Nexavir though I did start at a lower dose (0.5 mL) and worked up to 2 mL daily over the course of a few weeks.

    As others have mentioned, the best type is often based on your own individual results and viral infections. With EBV, I would tend not to want to start with Valtrex or Acyclovir as they may not be as effective. Based on the research I've found, I would tend to go for Valcyte, Famvir or Nexavir, or some combination.

    You may also want to look back at earlier posts...there was one last week that contained the updated ME/CFS Treatment Resource Guide from Dr A. Martin Lerner who works extensively with antivirals. I thought it had some useful info.

    http://forums.phoenixrising.me/show...urce-Guide-for-Practitioners-amp-ME-CFS-video
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My vote is for famvir as it has helped me lower viral loads to ebv and cmv. Famvir isnt recognised to have an effect on cmv and hhv6 but it has helped many with these viruses and is cheaper and less toxic then valcyte. Its sort of the middle ground between valtrex and valcyte.

    cheers!!!
     
  12. m1she11e

    m1she11e Senior Member

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    I second what Heaps said!! I couldnt believe it but my Doctor who loves Valcyte has now stopped prescribing it for any of the Herpes family of virus' and has gone with Famvir instead. I never thought I would see this. Famvir has caused me no side effects (other than maybe some hair loss). I never got ANY sicker on it. It has lowered my levels of HHV6 tremendously.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thats good. My viral testing is showing things are almost back to normal there. I have probably been on famvir for a total of 2-3 yrs. Now im just working on the hormonal side of things as i have tested low there, probably adrenal fatigue from having these infections for so long. Valcyte just made me feel really yuk! Hard to explain just everything felt worse and i got really depressed on it. Im glad the famvir is working for us.

    cheers!!!
     
  14. Wayne

    Wayne Senior Member

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    Lemongrass Tea is Supposedly Anti-Viral

    I read a few weeks ago that lemongrass tea can be effective against herpes viruses. I bought some in bulk at the local CO-OP, and have been drinking it daily since. It seems to have lessened my episodes of viral overload. Perhaps you could start drinking some of this tea (quite benign from my experience) while you explore other options.

    Wayne
     
  15. HTree

    HTree

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    Sushi, John, (all):
    I'm not sure if you've responded before about Immunovir: but in your experience/knowledge, how does Immunovir compare to LDN? both are immunomodulators.... (in effectiveness, and side-affects, and how your body responded over time, etc?)

    and, compared to AVs you've tried?

    Many thanks!
    Htree
     
  16. LiveAgain

    LiveAgain

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    Thanks for more responses. I see this Dr. on Monday and need to make a decision. For those that said Famvir lowered viral load, did it also help with symptoms? I'm leaning towards Famvir. For those on it, what dose are you taking? Would love to do one pill a bedtime to hopefully sleep through any side effects, but thinking it's probably 2 or 3 pills per day, right? For those helped by anti-virals (any of them) how long before you saw any improvement? My worst symptoms are dizziness, brain fog, cognitive and perceptual problems. Thanks.
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have never taken immunovir, only LDN, so can't compare. I would think they work through different mechanisms though.

    As far as AV's I take GcMAF which is not an AV but activates the macrophages to do their pacman work which includes dealing with pathogens.

    Sushi
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    famvir has helped my overall symptoms although at this stage not a cure, it has also lowered my specific lymphocytes to ebv and cmv, i have been taking 250mg twice a day for two years now. I think these infections occurr because of our poor immunity, so maybe not the cause but treating definately helps, also takes time and will continue on them for awhile longer.
     
  19. Wally

    Wally Senior Member

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    You can go to Dr. Lerner's website and download a new physicians guide that he has published. The guide provides his treatment protocol for valtrex, famvir and valcyte.
     
  20. Wally

    Wally Senior Member

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