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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?
