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UK NHS: Antivirals, anyone?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sasha, Aug 6, 2010.

  1. Sasha

    Sasha Fine, thank you

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    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?
  2. SOC

    SOC Moderator and Senior Member

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    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. :rolleyes: 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:
  3. maryb

    maryb iherb code TAK122

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    Sasha Dr Wright will test for viral infections if you ask him, also Breakspear, Dr Myhill will also I would think but wouldn't be able to prescribe for them now. The problem is the anti-viral meds are horrendously expensive and not many can afford to be on them a long time. The problem is you need to keep testing to check on your levels and that again is expensive.
  4. ukxmrv

    ukxmrv Senior Member

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    Sasha, I'm in the UK but have had to pay for most of my viral and immune system tests. Occasionally I find a hopital that will do one or two. For example I have a HTLV-1 test at St Marys in London.

    It's very unusual in the UK for one to be referred to an Immunologist who will do the extensive tests that are mentioned on this group. The NHS doesn't recognise many chronic infections or treat them.

    I had a private HHV6 test and also paid for a XMRV one. Even after having tests the NHS doesn't recognise them as valid and rarely offers an help. Every now and then after seeing a consulant I might have something useful prescribed - i.e. I got Imunivor on the NHS for a while. It's very rare though.

    Redlabs in Belgium also does a series of different tests

    http://www.redlabs.be/red-labs/our-science/chronic-fatigue-syndrome.php

    Once tested some meds can be bought as generics from India but others are just too expensive.
  5. Sasha

    Sasha Fine, thank you

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    Thanks, guys - it's clearly a complex issue. I'll have to mull it all over and think how to approach my GP. It's going to be difficult if the NHS doesn't recognise the value of treating chronic viral infection.

    Fortunately I had my dose of CBT/GET a few years ago and come out the other side unscathed (by just truthfully reporting that I was too ill to establish a stable activity baseline and hence to start on grading up, which they accepted, to their credit).

    I'm wondering whether to wait a couple of months to see how XMRV pans out before approaching my doc. I think that once we're talking retrovirus, it will be a whole new ballgame and the question of treating chronic viral infections in the context of having XMRV would make more sense to them, possibly. I'm hoping the Alter paper will be published in PNAS in the next few weeks - I think the CAA put on their website that the paper was now in press so it shouldn't be long.

    Strange days...
  6. garcia

    garcia Aristocrat Extraordinaire

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    Hi Ukxmrv, can you describe how you came to be prescribed imunovir on the NHS? Also why did they stop prescribing it?
    Many thanks,
    garcia.
  7. ukxmrv

    ukxmrv Senior Member

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    I saw a private consultant and he then sent a letter to my GP. My GP wrote an NHS prescription for the drug at the dosage recommended. The consultant agreed to monitor my progress. Another ME patient recommended the Consultant as this process had worked for them.

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