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1:1280 titers

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by mstrlucky74, Jul 16, 2013.

  1. mstrlucky74

    mstrlucky74

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    Hello all,

    I seen two docs that drew the attached bloodwork but both say the HHV 6 is NOT active. I convinced one to give me Valcayte, although very reluctant, because he was aware of Dr Montoya. My main symptoms are extreme fatigue and brain fog. I also discover my ejection fraction for my heart was a little low and I had an enlarged left ventricle( I am 39yo). Maybe this is the virus???hmmm. Well I have had the Valcayte for 6 motnhs already and have not taked it. I am really worried about the side effects and potential long terms problems associated with taking it. I am thinking of making another appointment with my doc and asking him to put me on Valtrex or something a little less aggressive. Are there any supplements that can help lower my titers? Any other thoughts??? Thanks a lot..

    Attached Files:

  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish there was but i dont think there is any supplement that will help. I have tried bucket loads of supps and nothing worked. Famvir might be a better choice of antiviral if your worried about side effects of valcyte. It helped me to a certain degree with cmv but i did need valcyte to nail it. A few others have seen viral titres go down with famvir too.

    The general word on the street is that valtrex is good for active ebv and can help keep cmv and hhv6 down once valcyte has got them under control. Famvir is just as safe if not safer then valtrex in some respects and is used instead of valtrex for those who have a history of kidney stones. There is some evidence that famvir can lower viral load of cmv and hhv6 but not as good as valcyte. valcyte is generally the drug of choice for active cmv and hhv6.

    I think its worth trying famvir and then also work on other aspects like immune system and hormones etc Before i could get valcyte i was thinking of trying valtrex and famvir together to see if it add an additive effect on cmv, so thats an option??

    I hope this helps.
    cheers!!!
  3. mstrlucky74

    mstrlucky74

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    Maybe I should try the Valcyte then.......but I am stuck on thinking there will def be bad side affects and more than likely long term issues due to the use of the Valcyte...THanks.

    BTW, is 1:1280 igg HHV6 titers high?
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There is some evidence from people here that using an antiviral like famvir or valtrex for 6 months first can reduce the side effects of die off type symptoms when they start valcyte.

    The first few valcyte studies dosed patient with high doses straight off with 4 tabs a day then after a few weeks down to 2 tabs, now it seems many are starting off with just 1 tab and if they feel alot worse on that and have problems managing this then they cut the tablet in half, doses are slowly increased upto 2 tabs if needed??

    The other things is that many of us take supps to protect the liver, myself i use NAC and lipoic acid as they do have a more direct protective effect of the liver then many other supps. As long as your doc keeps an eye on regular blood work monitoring liver and kidney function as well as blood cell counts then personally i think its worth it.

    I suppose you have to weigh up the long term risks of hhv6 infection versus the risks of taking valcyte????
    jimells likes this.
  5. mstrlucky74

    mstrlucky74

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    Thanks....but I am still wondering if I have an ACTIVE infection if the doc said it's inactive. He gave me 450mg pills.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Going by the hhv6 site it appears that you have active hhv6.

    I dont have experience with titres as i cant get them done in australia only can tell if its igm or igg but we then go off cd t cell test where cd8 t cell elevation is a strong indicator of viral reactivation. Maybe getting tthis t cell test can help u confirm this with your viral titre test.
    mstrlucky74 likes this.
  7. globalpilot

    globalpilot Senior Member

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    There was somebody on the CFSExperimental list who found a study showing the herb melissa was effective against one of the herpes viruses. She has another one but tried it hoping it would work on her variant and it helped her tremendously. She was growing the herb in her yard and tincturing it herself.
    I can't rmeember much else except it really helped her - can't even remember her name though. But it's in the archives and I think if you search on melissa tincture you should find it.
    mstrlucky74 and heapsreal like this.
  8. Ema

    Ema Senior Member

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    I think it is high enough to signify an active infection as well.

    Ema
  9. mstrlucky74

    mstrlucky74

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    Thanks everyone....very much
  10. mstrlucky74

    mstrlucky74

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    Is (1) 450mg Valcyte tablet twice a day enough?
  11. mstrlucky74

    mstrlucky74

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    BTW. I have had extreme bloating and a few other GI issues along with anxiety for about as long as I have had this brain fog and extreme fatigue. Has an active HHV6 infection been shown to cause GI issues or anxiety or is it the other way around? Thanks. Sorry for all these questions. I am just so glad I have found this site. I have not been myself for about 6 years now. My quality of life stinks....hopefully I will be on the road to recovery soon.
  12. mstrlucky74

    mstrlucky74

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    So can I start with that low of a dose?
  13. globalpilot

    globalpilot Senior Member

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    I haven't heard of a connection but there could be one I suppose if it infects your gut. It will be interesting to see if tx helps your bloating and anxiety.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think 1 tab a day is mostly what people are starting on and some only a half if they react badly to 1 tab.
  15. mstrlucky74

    mstrlucky74

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    Thanks a lot!!!
  16. jimells

    jimells Senior Member

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    Gut problems are very common here. In my case, I seem to be unable to absorb many carbohydrates. The bacteria in my large colon love the unabsorbed carbs. They grow like crazy, creating lots of gas, bloating, pain, and diarrhea. It looks like I can no longer eat beans, wheat, rice, oats, rye, high fructose vegetables and fruits, etc. But corn and diary is OK, so far. I avoid FODMAP foods, that seems to work pretty well.

    http://en.wikipedia.org/wiki/FODMAP

    http://shepherdworks.com.au/disease-information/low-fodmap-diet
  17. SOC

    SOC Moderator and Senior Member

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    The ME/CFS docs I've heard of using it are using higher doses. I would be concerned that too low a dose could result in developing a Valcyte-resistant strain, which would be very bad. :eek: This is something you should discuss with your doc before you take a low dose of Valcyte.

    Most people start with 450mg and work up to their full dose over a few days to a week. The package insert is very serious about NOT breaking the pills, but I have heard at least one person say their doc said it wasn't a big deal. I wouldn't try it, especially if I was worried about complications from Valcyte.

    The most common dose for Valcyte that I've heard is 1350mg daily.
    heapsreal likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A few people who see dr montoya have said he now startts some patienrs on lower doses and slowly builds up. Recently saw something from lerner where he starts at 1 tab and increses dose every 3 days until the desired dose and eventually doses are tapered down to maintenance dose. But this is hear say from others here.
    SOC likes this.
  19. Butydoc

    Butydoc

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    I'm a patient of Dr. Montoya. He started me on a very low dose of valcyte because of my severe reaction to the drug before. I started on 225 mg and increased the dose to 900 mg/day. It took approximately 2 1/2 months to reach that dose. He has no problem concerning splitting the valcyte tablet. By starting on the lower dose, I suffered no ill symptoms from this drug. This is dramatically better than my first experience with valcyte. I've been at the therapeutic dose for the past 7 mo with clear improvement. He plans to keep me on this drug for 1-3 years. He also added colchicine as an anti-inflammatory drug.
    Dr Montoya no longer starts on a loading dose because of the frequency of severe side effects. He feels this does not compromise the results.
    Gary

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