• 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. parabola

    Having issues with seizure activity it feels like.

    Is it definitely hpdd and not temporal lobe simple partials? I ask as I'm sure a lot of drugs could trigger seizure activity, and TLE partials definitely feel trippy...
  2. parabola

    EBV antibodies - converting U/ml to titer ratios?

    Thanks @Hip really appreciate your opinion. I have also been getting rashes which I think now may be linked to EBV reactivation, plus I am recently folate deficient which I suspect may be depletion by the virus or body sequestering it away from the virus, I need to do some more reading! I would...
  3. parabola

    Can weed cause Chronic fatigue?

    I believe it's like a storm of too much serotonin, though with ME genetics there is probably a lower threshold for it. I would also be interested to know what you found @andyguitar
  4. parabola

    Can weed cause Chronic fatigue?

    Following Davis' metabolic trap line of research, if pwme have some genetic predisposition to high serotonin levels then MDMA possibly has the potential to cause serotonin syndrome at a lower dose, and possibly kickstart the trap?
  5. parabola

    EBV antibodies - converting U/ml to titer ratios?

    Hi, My illness started with glandular fever over a decade ago, and these are my recent EBV results: EBNA IgG antibody * 25 U/ml (< 5 U/ml Negative) VCA IgG * >750 U/ml (<20 U/ml Negative) EBV VCA ab.(IgM) <10 U/ml (<20 U/ml Negative) EBV Early Ag ab.(IgG) * >750 U/ml (<20 U/ml Negative) I...
  6. parabola

    How to handle parties/social events when you HAVE to go

    Oh wow.. I was going to say, I took it for close to two months for Crohn's and didn't get the moon face at all. Have you had your bones and adrenal function checked since?
  7. parabola

    How to handle parties/social events when you HAVE to go

    Can I ask how frequently you were taking pred and how much?
  8. parabola

    How to handle parties/social events when you HAVE to go

    hi @hamsterman ! I have just bought some 5mg prednisolone to try as a PEM shield for one-offs. Can I ask how much you weigh? I am tall but quite slim so thinking I might be able to get away with a smaller dose. (BTW I was told several years back that the difference is prednisolone is easier on...
  9. parabola

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Well I've ordered some pred, fingers crossed it gets through customs OK. I don't even know if this is in an issue in the UK but I've go some harsh words ready for anyone who tries to stand in my way. The NHS provides **** all help !
  10. parabola

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Oh dear... So does that mean that taking the occasional 20mg of pred as a PEM-preventative during high-risk (winter) months might still be playing roulette?!
  11. parabola

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Would that not only apply to supra-physiological doses? I get symptoms of hypoadrenalism when fighting a virus (blood sugar dropping, hypo symptoms, adrenaline release etc) and it's really those symptoms that 'floor' me. So I decided to put it to the test by just bolstering physiological levels.
  12. parabola

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    In case this helps someone, this not only kept me reasonably functional through a bad cold virus (healthies were calling it flu, so who knows) it prevented any backlash in the aftermath. I started taking hydrocortisone at the first signs and did a short taper: Days 1 to 4: 0900 10mg 1430 5mg...
  13. parabola

    20mg prednisolone as a rescue remedy?

    It looks like @Hip has found the thread I was looking for, thank you :)
  14. parabola

    20mg prednisolone as a rescue remedy?

    A week or two ago I came across a post (via a Google search) which I'm sure was here on PR, where a member said that taking 20mg of pred either before or straight after some exertion helped as a rescue remedy to stave off or at least lessen their PEM. Now I can't find any such post for the life...
  15. parabola

    Would you use B12 and magnesium injections that have expired?

    As title. Hydroxocobalamin and magnesium sulphate in single-use glass ampoules, boxed. Expired 2014. Stored in a dark place since 2013 and moved to the fridge about a year ago, perhaps longer. I know some medical supplies are really conservative with the dates. Possible loss-of-potency issues...
  16. parabola

    Completely eliminated my severe anxiety symptoms with three supplements!

    Apologies, I have moved it to PM.
  17. parabola

    Completely eliminated my severe anxiety symptoms with three supplements!

    @asymmetry it is an oral spray not a body spray- can you image? :rofl: "You know when you've been Tangoed" Interesting, what are you using to make up your home made elemental? I have experimented with protein powders (to try and make a less carb-heavy version of elemental formula to help me...
  18. parabola

    Completely eliminated my severe anxiety symptoms with three supplements!

    Thanks I will look into it, what effects did you notice from it, in terms of symptom improvement? The thing that works best for me is an elemental diet (Nurtricia E028) and my colonoscopy/biopsies back that up. I'm supposed to be weaned off of it by now but currently 'stuck' on about 750kcal...
  19. parabola

    Completely eliminated my severe anxiety symptoms with three supplements!

    I don't know if anyone's already mentioned it, but this is a new turmeric spray product which is supposed to bypass the digestive system. I intend to try it myself (as someone who gets the squits from regular turmeric supplements) to see if it can lower my crohn's inflammation...
  20. parabola

    My embarrassing, ignorant questions!

    My understanding is that CFS = 'tired all the time', and has been weaseled into ME language as an easy way for ME to be classified alongside depressive illnesses which cause lethargy and hypersomnia. This classification is for the purpose of withholding insurance and social security since the...
  21. parabola

    Glutathione Suppositories

    I just found these and thought I'd search on here to see if anyone ever tried them. They also do a 1500 mg dose. I was thinking they might be helpful for my IBD too, but having read about the pH issue now I'm no so sure. I'll email them and ask if they're buffered and report back. Buttered will...
  22. parabola

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    I really can't put it down to anything else, it just came out of the blue because the bloat is ever-present. I have tested +/+ for C766T via the Yasko profile a few years ago but got so overwhelmed by all the info I did nothing about it. I didn't get any methylation start-up kind of symptoms...
  23. parabola

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    My GP is very 'vanilla' I'm afraid, I'm going this alone. I decided to stop the methyl B complex, but in other news after 5 days on it (and I keep a strict diary and am eating the same stuff daily at the moment- nothing else had changed), my constant bloating had gone down in the morning, which...
  24. parabola

    please join this facebook group to reinstate Dr John Greensmiths

    Does anybody know what became of him? I remember him writing into the newspapers
  25. parabola

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    Apologies for bumping an old thread, I have just been put on Dr Myhill's waiting list for this test and looking for some advice. I have just started (about a week into) taking a methyl B complex, with the intention of buying the other supps to properly implement RichVanK's simplified protocol...
  26. parabola

    "It's a poor sort of memory that only works backwards"

    I also suffer from this. Because of the nature of it(!) I can't remember how far back I've been having it, but I'm almost certain this started for me after glandular fever/ME symptoms began, as it would certainly fit with what my then partner thought were anxiety attacks, which never explained...
  27. parabola

    please join this facebook group to reinstate Dr John Greensmiths

    Does anyone know what happened to Dr Greensmith? He was a regular contributor to the letters page of my regional newspaper a few years back, raising awareness, but his letters stopped suddenly.
  28. parabola

    OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

    This has got me thinking, after reading through the threads about response to the common cold. Where a really obvious subset exists (people who feel better with a cold/people who feel worse etc) has anyone managed to collate this and find patterns in which supplements work or don't?
  29. parabola

    Anyone recognise this rash/welts around navel?

    Do you wear jeans with a metal button, back of which may be causing an allergic reaction? Any pics?
  30. parabola

    Feeling better before a cold?

    Every so often I'll get a day or two where I start to feel good, calm, Like inflammation is low, body temp is holding up well and staying constant, sleep is better, aches are less, energy better, PEM less likely to set in... Then I start to smell this smell on myself, something that I've...