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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    The way I have been looking at it, brain fog is a component of chronic "subclinical" encephalitis (or more appropriately perhaps encephalopathy). When it all boils down it is the lethargy, the mental fatigue and the cognitive dsyfunction which are the main components of disability and reduced...
  2. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    Sushi if you show the ID consultant a few HHV-6 papers they should not brush you off - there are heaps out there which do not need subscriptions. Even abstracts can suffice but the full papers are better. They cannot keep up with everything. Google HHV-6 and Encephalitis for example. I have to...
  3. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    If Roche had half a brain they would plunge their price of Valcyte 2 years ahead of the patemt expiry to suck off some profits from the CFS industry. They clearly dont have half a brain. The patent expires in 2015.
  4. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    Also PCR tests give us actual viral loads eg 2.3 log. Ten years ago we were just given a positive or negative result. So vira loads should be diagnostically helpful if we are doing monitoring of symptom reactivations.
  5. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    I think the higher IgG levels eg 1:1024 sort of stuff is highly suggestive of significant reactivations. I did a big batch in 1998 on patients with unusual malaIise or soft neurology and most of them came back at 1:64 - which were probably not significantly affected by HHV-6, even though they...
  6. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    I am trying to work on the assumption that judicious and timely use of high dose 800 mg five times daily of aciclovir might be reasonably effective for reactivations for 1-2 weeks. It is dirt cheap here in NZ and Valcyte is obscenely expensive. Most of our patients have no knowledge of HHV-6 and...
  7. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    America is streets ahead on this compared to the conservative "British Commonwealth" approach to medicine - ie. "if it isn't serious treat it and investigate it conservatively"
  8. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

  9. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    No HHV-6 is still fringey I started doing a lot of IgG's on patients (probably for my own selfish curiosity) back in 1998 after my son seroconverted following an MS like illness but the ageing head clinical virologist at Auckland Hospital decided they should not be doing serology IgG's for...
  10. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    Re carotid arteritis (aka. carotidynia) - If anyone is interested the study in the American Jnl of Neuroradiology from way back was excellent. Dr Burton knew something was going on with these army personnel and their families. http://www.ajnr.org/content/21/4/766.full. It was only my hunch that...
  11. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    I work as a GP and I am starting to take HHV-6 PCR snapshots when patients present to me with ~2 wks of soft neurological signs of reactivation. I picked a significant viral load up last week on a 35 year old lady who had the previous year sustained a moderately severe but transient carotid...
  12. Dr Jon Wilcox

    Rituximab or Methotrexate (Mtx) for CFS/ME

    We can only do tests which the Government is happy to fund, otherwise opatients in NZ dont like paying for tests. And they are much less curious than in the US. I put a 22 year old patient on steroids the other day - at her mother's request - and she said it was the clearest her brain had been...
  13. Dr Jon Wilcox

    HHV-6, HHV-7 Viral Loads & HERV K18 Expression in CFS

    Not a great study really. The unique cycles of reactivation of HHV6 (or whatever other neurogenic virus is likely to be the culprit) do not happen on a day to day basis. The reason why this research is so difficult is that testing has to be done at the appropriate time to catch any spillover...
  14. Dr Jon Wilcox

    Rituximab or Methotrexate (Mtx) for CFS/ME

    I have heaps of patients on MTX for rheumatic reasons - it isnt that bad. Just needs monitoring and folate. Esp compared to the severe disability and CNS dysfunction with CFS. If you are "lucky" enough to have psoriasis at least there is a more valid reason to trial MTX. I am sure you will not...