As far as I know, I've never been tested on the NHS for all the viruses that people mention on this forum such as HHV6 etc., let alone been treated with antivirals, despite having a sympathetic GP. I had a referral once to an immunology consultant who took a history, said that I was clearly suffering from a repeatedly reactivating viral infection, and promptly sent me to the local ME/CFS clinic for some CBT/GET.
Has anyone in the UK attempted to get a battery of tests for these various bugs and embarked on antiviral therapy? I seem to remember that Jonathon Kerr was involved in some research that basically cured some people who had tested positive for HHV6 (fuzzy memory of this) but I got the impression that such infection was relatively rare even among CFS patients so didn't follow up.
I've been a bit lazy on this! Does anyone have any experience? Either on the NHS or by going private?
See the HHV-6 Foundation and read about testing. http://www.hhv-6foundation.org/testing.htm
HHV-6 testing is notoriously unreliable in detecting reactivated infections.
Did your immunology doc test your natural killer cell function? IF
your natural killer cell function is low and if
the immunology doc thinks you've been reactivating viral infections (herpesviruses, I assume), then you are certainly justified in asking how your poorly functioning immune system is supposed to deal with these recurring infections without antivirals.
I'd ask for immune function tests (NK cell function
, in particular) before I did anything else if I was in the UK dealing with NHS. You want to get out of the psychosomatic camp and into the immune dysfunction camp, asap.
Might save you from getting pitched into their CFS psychbabble stuff. If your immune system is
dysfuntional, you'll have a lot better chance of getting tested for reactivated infections because they would be considered likely consequences of impaired immune funtion.
Because of the way most herpesvirus tests are interpreted, you're not likely to test positive for an active infection unless it's your first infection. The assumption is that if you're not immune-impaired then you don't get a reactivated herpesvirus infection, even if your titres are very high.
Some healthy people maintain a high antibody titre, so a high titre isn't definitive
for an active infection. However, if you are immune impaired AND have a high titre, a knowledgable doc might interpret the results differently.
I'd also suggest getting tested for herpesvirus infections when you feel bad -- muscle aches, pain, sore throat, swollen lymph nodes -- anything that looks viral. You'll more likely get a useful measurement at that time than you will when the viruses have gone latent again.
I tested "negative" (in the US) for all the usual infections and assumed that I didn't have them until I finally figured out the way my PCP was interpreting my test results. My EBV titres were sky high, but were reported to me as "negative" because healthy people can have titres that high, so the high titre didn't matter, because it clearly wasn't my first infection. This is a common interpretation, apparently. My HHV-6 titres were also high, but it's very difficult to diagnose active
HHV-6 infection unless it's a primary infection.
Once I got correct diagnoses, I got antivirals and they do seem to be helping. They may not be the whole story, we'll see, but every bit of improvement helps. :Retro smile: