1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

HHV-6 Virus and CFS (need info please!)

Discussion in 'General ME/CFS Discussion' started by Gingergrrl, Jun 18, 2014.

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    My ND tested me for HHV-6, as I had never been tested before, and I had read about it on this forum. I had mono from EBV in 2012 and currently have high EBV titres. Well, I learned today that I also have high HHV-6 antibodies.

    But when I researched on-line, the HHV-6 Foundation said that the IgG test at Lab Corp (which is what I had) is pretty meaningless and only shows that one has been exposed some time in their life.

    Is this something I should be concerned about and, would it change the course of my treatment?
     
    merylg likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
    IgG antibody testing for HHV-6 is not thought by many docs and researchers to be a reliable measurement. It shows exposure yes, but levels can be influenced by immune function. Could you be tested for HHV-6 by other methods to try to learn more about whether you have an active infection? For instance an IgM test or a serum or plasma PCR, or a quantitative PCR on whole blood?

    I test negative by IgG yet others I know who tested negative were found to have active infections when gut tissue was tested (they had this test because of severe gut problems).

    Since treating HHV-6 is a "big deal"--very expensive drugs (like Valcyte) that have side effects for many--you don't want to chase it if it isn't active.

    Sushi
     
    merylg and Valentijn like this.
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    @Sushi Thanks for the info and I will ask my ND if she thinks further testing is worth it. I know I could never tolerate a drug like Valcyte so that is not an option for me.
     
  4. SOC

    SOC Senior Member

    Messages:
    5,367
    Likes:
    6,465
    USA
    @Gingergrrl43, as you probably realize from reading the info at the HHV6 Foundation website, there is no completely reliable test for active HHV6 infection. The best doctors use their medical judgement based on multiple factors including symptoms, and how high the titre is compared to when you most likely had the original infection. Since most of us get our original HHV6 infection before the age of 2yo, a high titre in a middle-aged person is suspicious when it might not be in a 6yo.

    IgG titres drop over time if the infection is not reactivating. That is the reason we give booster vaccines, including the "shingles vaccine" which is actually a chicken pox (VZV) booster. By the time one is middle-aged/elderly IgG titres for childhood infections often drop into or near the negative region. That is why having a high (not slightly high, but distinctly high) titre in adulthood is a clue (not a certainty) that the infection is active or has recently been so.

    So if you have a high titre AND symptoms typical of the infection, a knowledgeable doctor will probably diagnose active HHV6. If you also have documented immune dysfunction, that makes the diagnosis even more likely.

    Some doctors like to watch herpesviral titres over time. If your titre decreases after 3 months with no treatment, then it is more likely (again, no certainties here) that the infection is past, not active. If your titre increases in 3 months, then it's likely that the infection is active (and you've wasted 3 months not getting treatment ;)) because your antibodies should not increase if there isn't an active infection to fight. If your titre stays the same in 3 months (which is quite likely as they don't change quickly) it's a toss up.

    This is all probably irrelevant if you can't tolerate a drug like Valcyte since that's the only medication to treat HHV6. Just so you know, Valcyte is not necessarily a difficult drug to take. Two members of my family had no side effects at all from multiple rounds of Valcyte treatment, and both went into remission. I was the sickest of us and I did have a bad stretch the first time I took Valcyte, but no side effects at all the second time. I did not go into remission, but got a huge improvement. I have no hesitation at all taking it under careful medical supervision.

    All that said, Valcyte is hideously expensive, so if you can't get insurance to pay for part of it, it's probably out of the question. It's supposed to go off patent next year, so the price should go down considerably after that, thank goodness.

    If you had EBV in 2012, it's not surprising that you have a high IgG titre. That doesn't necessarily mean you have an active EBV infection. If you never recovered from the mono, however, that's another story.

    What treatment is your ND recommending based on your titres?
     
    Sushi, madietodd and heapsreal like this.
  5. vamah

    vamah Senior Member

    Messages:
    591
    Likes:
    682
    Washington , DC area
    I disagree that the trest you had is meaningless. Yes, most people are exposed to hhv6 as children. What matters is not whether you have a positive titer at all, but how high it is.
     
    SOC likes this.
  6. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    Now I am not sure what is considered a slightly high titre versus sky high in HHV-6. Does anyone know the numbers? I believe with Lab Corp if the number was over one it was positive and mine was six (but I would have to find the paper to confirm and working off memory.)

    Also, can EBV or HHV-6 go into your heart, brain, etc, and cause problems (even if the infections are not current?) I am trying not to scare myself but doing so anyway :aghhh:.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,417
    Likes:
    4,814
    australia (brisbane)

    Do u have high total lymphocytes and/or cd8 t cells? This at least indicates some type of infection going on and cd8 common with ebv/cmv/hhv6.
     
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    @heapsreal How would I know if I have the things you mentioned above? Is that a separate blood test? I checked my results from Lab Corp and it said above .99 is positive and mine was slightly over 6.0. Is that a high number or just moderate?
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,417
    Likes:
    4,814
    australia (brisbane)
    total lymphocytes are generally done in basic tests like a full blood count, cd8 t cells are measured in lymphocyte sub set test.

    Im not familiar with lab corp titre testing, at a guess all i can say is it shows u have atleast had the infection. it does seem quite high above .99, so may mean a possible current infection, hopefully someone else chimes in to confirm this. total lymphocytes and the t cell testing can help your doc make an educated guess that hhv6 is active. if u get these tests in a few months and they are all still high then this is more evidence that hhv6 is an issue? EBV can also increase lymphocytes and cd8 also.

    If one cant afford or cant tolerate valcyte, then famvir is an option which may help as it has helped others with hhv6 and cmv. Maybe lowering ebv may be enough to improve immune function that will turn the immune system on to hhv6??

    Sorry there just isnt any black and white answers, but can pick up alot of clues i guess. The only way to know is if u respond to treatment??
     
  10. SOC

    SOC Senior Member

    Messages:
    5,367
    Likes:
    6,465
    USA
    An EBV IgG of slightly over 6 on the Lab Corp test is generally considered high and a possible clue to an active infection. However, if you had EBV relatively recently, your titre could be that high even if the infection is not active.

    Did you get the full set of EBV tests: EBV Early Antigen, EBV Viral Capsid Antigen, EBV Nuclear Antigen?

    You can read more about what the results of those tests mean here.
     
    Last edited: Jun 21, 2014
  11. SOC

    SOC Senior Member

    Messages:
    5,367
    Likes:
    6,465
    USA
    Oh drat, @Gingergrrl43, were you talking about HHV6 tests, not EBV test?

    This is what the HHV6 Foundation says about the Lab Corps ELISA IgG test:

    As I think I've said before, there is currently no absolutely definitive test for active HHV6.
     
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    @SOC I actually don't remember my EBV titres and don't have the info with me but remember the #'s were very high for IgG, IgM and early antigen. I was not totally surprised b/c I had mono in 2012. I was more surprised about the high HHV-6 b/c I didn't know I had it at all!
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,208
    Likes:
    3,741
    USA
    Thanks and that is good to know. I kinda feel like I would be going in circles trying to pursue the HHV-6 any further.
     
  14. SOC

    SOC Senior Member

    Messages:
    5,367
    Likes:
    6,465
    USA
    It would be odd to have a high IgG-VCA, IgM, and IgG-EA at the same time. A high IgM indicates that you're early in the primary infection, which is unlikely if you had the primary infection in 2012. However, if you do have a high IgM, then you definitely have an active EBV infection.

    More than 90% of us get HHV6 before the age of 2yo, I believe. Few of us are aware of the infection. It's generally mild in children and clears easily and quickly. The problem arises when it reactivates later in life. If it persists it can infect cardiac and neurological tissue. :eek: If you haven't already, you should do some reading at the HHV6 Foundation.

    Here's something from the HHV6 Foundation to get you started
     
    heapsreal likes this.

See more popular forum discussions.

Share This Page