• Welcome to Phoenix Rising!

    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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  1. L

    Quick Scanner for Viruses

    Vaccines . . . For me, it's one of the only things that fits the picture (and even the timeframe). AISA syndrome has already been talked about in this article back in 2011. https://www.ncbi.nlm.nih.gov/m/pubmed/22054760/
  2. L

    Enterovirus Discovery at Stanford--Will a Treatment Follow?

    @Hip Sorry. I should have written "provoke out of latency". My brain's not what it was! Thank you. Your reply confirmed what I suspected. I'll keep bimbling along. All the very best.
  3. L

    Enterovirus Discovery at Stanford--Will a Treatment Follow?

    @Hip I have read suggestions that "provoking" a virus while treating can help clear it from the system (in its acute form?). Would this theory in any way transfer to enteroviruses in their non-cytolytic state? It was on this forum I read that, I believe. Any information on treatment of...
  4. L

    What causes dehydration/electrolyte imbalance

    It seems many posts are missing the point that you were using ketosis prior to your illness without problems. Your experiences are roughly in line with mine. I'm sure the issues arise from a hormone imbalance which is central to many of our issues, keto or otherwise. I think the hypothalamic...
  5. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    I've lost count of the amount of times I've asked to trial antivirals or even certain antibiotics. Heck, they won't even test for 80% of what I ask for!! I'm in the UK, and I have very little hope for any level of treatment. Feeling very lost at the mo.
  6. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    Exactly this!! I'm so glad I'm not alone, but it is very upsetting knowing there are others suffering so horribly. I'll perhaps reply in more detail when o have a bit more energy. Best wishes.
  7. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    I've only had run of the mill tests; EBV, CMV and alike. My test results always show I am a picture of health. I catch every bug (not good with a 5 year old daughter) and always feel ill and deathly. I have an immunologist referal in the pipeline and I can hopefully ask GP for a cardiologist...
  8. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    I saw that post of yours. I find your insights extremely helpful. Your contributions surely can't be overlooked. If researchers aren't using your obvious talents, there is something seriously wrong! Hopefully my heart symptoms will ease. I'm currently unable to exert myself in nearly any way. No...
  9. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    I think what I'm really asking is, is dysfunction/damage with regards to the heart (possibly from enteroviral infection) an irreversible condition, or like Dr Myhill postulates, more of a mitochondrial dysfunction/impairment that can greatly improve given appropriate protocols? Reason I ask is I...
  10. L

    Why did antivirals (valcyte, etc) for SEIDs fail?

    Hip, may I ask your views on coxsackie and it's long term effects on the hearts of sufferers; particularly those of us with ME who have a chronic not acute presentation. I can't get any doctor to pursue investigations as I don't present any acute symptoms (even though I am bedridden and exertion...
  11. L

    Attempting to identify members of my subgroup - Subcutaneous Fat Loss

    I do! And muscle wasting beyond what would be expected through lack of use. Catabolism is a mechanism of many of the known issues within our illness bracket. Muscle, collagen, fat etc etc breakdown was quite common I thought. It certainly is reasonably well documented within the realms of...
  12. L

    Easily out of breath

    I believe Dr Myhill calls this 'cardiomyopathy secondary to mitochondrial malfunction'. This certainly fits the bill for me. There are other potential factors also and many of them can be driven by a pathogen or toxin. Keeping calm about it is easier said than done! It's a bloomin nightmare!
  13. L

    Chest wall pain and fatigue

    For me, chest pain/angina is definitely associated with mitochondrial dysfunction. Pretty sure this is a well documented phenomenon eg Cheney, Lerner, Myhill. Nowadays if I do too much, angina is often part of my PEM experience. It's scary as hell. Just another thing the doctors dismiss.
  14. L

    Constant crash anyone?

    I've been lurking on PR for some time . . . Knowing I'm not the only one who is in a perpetual low energy state is reassuring (but at the same time horribly upsetting). A major issue for me is the catch 22 of finding any type of help within the NHS and the detrimental effect on my precious...