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New HHV6 result

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vamah, Aug 14, 2013.

  1. vamah

    vamah Senior Member

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    So, I have been on valcyte for not quite 6 months now. Just got back new hhv6 titer. It has dropped to 1:320 -- that is from 1:1280 in January. One doctor is telling me that that is a good result and means the valcyte is working. Another thinks that, after 6 months, I should be testing normal at this point and should consider going back to 900 mg twice a day instead of once. I had basically followed the Montoya protocol of 900 twice a day for 3 weeks then once a day after that. I would appreciate if anyone has experience or knowledge about this kind of situation. I'm not sure what to do. I have been feeling really bad lately -- insomnia (even with meds), muscle pain, fatigue. Don't know if its hhv6 or something else. What do I do if it isn't responding to valcyte? That's pretty much the nuclear option already, right?
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    just keep plodding along with valcyte as long as theres no liver/kidney issues or drops in white blood cell counts. Look more into ways of improving immune function, immunovir, inosine, ahcc etc etc

    I think thats a good sign that your titres are coming down. Generally are you feeling better then pre valcyte though?

    I think our bodies get that run down that we should also look into hormones and adrenal dysfunction, i think this can help especially once we are on top of infections and immune system.

    Im sort of in the same boat as u at the moment, i think an immune system transplant would be good lol.

    cheers!!!
    roxie60 and vamah like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Do they have full body transplants yet? Or is that called birth?

    Sushi
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    wouldnt that be nice. I think just to be anaethitised for a week or so would be great.
    jimells, WillowJ and Nielk like this.
  5. vamah

    vamah Senior Member

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    Thanks for the advice. Actually, aside from a few good days here and there, I would say I have been feeling worse generally. So, in a way, it is a relief to know that there is a reason for this: the virus is still using my body as a playground. It also confirms that my decision to leave my job ( today is my last day!) is the right one? On the other hand, it is frustrating that my immune system sucks so badly that the virus can still be there after being on a powerful antiviral for so long. Let me know when they come out with that immune system transplant! :p
    roxie60 and heapsreal like this.
  6. vamah

    vamah Senior Member

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    Do you know if imunovir is available in the US? It looks to me like it's not.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think those in the US use inosine supplement or order it from Canada.
    The best priced i have been able to find is these guys http://brandmedicines.com/index.php?main_page=product_info&products_id=746 but the cost can start to mount. I have decided to order inosine and take 1000mg twice a day and see if it increases my nk numbers as much as immunovir did. If it works then its a much cheaper alternative. There is a reasonable amount of research showing the supplement inosine helps improve nk numbers and function.
  8. Ema

    Ema Senior Member

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    I've had good luck with inosine supplements.
    heapsreal likes this.
  9. vamah

    vamah Senior Member

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    Thanks. Just ordered inosine on amazon. Will see if it helps.
  10. SOC

    SOC Moderator and Senior Member

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    @vamah~
    I was feeling worse at around 6 months, but was feeling quite a bit better not long afterwards, if that's any encouragement.

    HHV-6 is neurotropic, so it's not always easy to get at. That might be why it takes longer to treat with oral medications than some other infections.

    Drs Klimas and Rey are suggesting inosine for low NK cell function.

    Something to consider -- if you are feeling worse, you could be having an IRIS-type reaction, in which case increasing immune response might be risky. My suggestion is that you hold off on the inosine for a couple of months. Just a suggestion, though. :)
  11. vamah

    vamah Senior Member

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    Thanks. I will discuss these things with my doctor. Am also going to ask about being tested to see if I have chromosonally ( I know that's spelled wrong, but it is the best I can do today) integrated hhv 6. Somewhat concerned about the possible implications for my kids if that is the case, but it would explain a lot.
  12. SOC

    SOC Moderator and Senior Member

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    Yeah, that's a scary thought. My daughter also has ME/CFS and is engaged to be married. Both of us had active HHV-6 infections. Could it be that I passed it to her genetically and therefore she might pass it on to her future kids? Nasty, even frightening, idea. I'd be interested to hear what your doctor says about chromosomally integrated HHV-6.
  13. vamah

    vamah Senior Member

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    So, I saw my dr today and am going to go back up to valcyte 900mg twice a day for a couple months, then retest and see what my titers are. Didn't get around to discussing CIHHV-6, mostly because I didn't feel up to it today. I've also started inosine -- following a gradual dosing plan I found on this forum. If this doesn't kick its ass, I don't know what will. Having a crash this week after doing too much last week and feeling very negative today. Keep thinking about starting a blog, as I used to be a writer, but don't know if I can form a coherent thought. :confused:
  14. SOC

    SOC Moderator and Senior Member

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    I'm glad to hear your doc is willing to put you back on the higher dose. You are being tested frequently for neutopenia and liver function, right? :)

    Dr Rey suggested inosine for my daughter for low NK cell function. Her protocol is: 250 mg daily for one week, 500mg daily the next week, and so on working up to 1500 mg. Then take 1500 mg for 2 months. I'm not sure where it goes after that -- if she just quits, or is retested.
  15. roxie60

    roxie60 Senior Member

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    Glad your titers are falling, sorry to hear about your job, are you leaving voluntarily (not that leaving due to poor health is voluntary)? Do you have a source of support ?
  16. vamah

    vamah Senior Member

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    Leaving job was voluntary. I physically could have kept working, but I knew I would never get better if I did and would probably get worse. I am fortunate that my husband's salary can support us (he was making about 80-90% of our income even when I was in the workforce). We will have to make some lifestyle changes as we still have 2 kids in college, but we will be fine. We have gotten by on much less when we were first married and I stayed home with our twin babies. :p

    As for my titers, I am glad they are lower, but really they should be under 80 after 6 mos of valcyte. Started the higher dose yesterday and I am already descending into valcyte hell, but I have been there before. Hopefully it will be less severe this time.
    Sparrowhawk, SOC and roxie60 like this.
  17. yarnee

    yarnee

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    I switched to working at home my income drastically less but its worth it.
    heapsreal and vamah like this.

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