• 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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Search results

  1. tooth

    Staggering Incompetence

    How is this project going @ironlion37 ? I have also been on the exact same tangent for months and have been using that pdf from Compounders Lab as a reference. Only just came across your post here when searching around Google for some info today. Currently subsisting on 3 ampoules of Eisai...
  2. tooth

    Dosage of Cycloferon

    @Shanti1 - how have you got on with your "haul"? Like you, I also notice improvements on immune stimulants. Cryptolepis herb is by far the strongest one I have found (almost too strong). I've been thinking about trying some of the Russian immune modulators and might get some Cycloferon this...
  3. tooth

    Active B12 Protocol Basics

    @Freddd Any thoughts or experiences with B12 in suppository form? I have pretty severe neuro damage (numbness in whole body, neuropathy in hands & feet) from being deficient. Long family history of Pernicious Anemia and schizophrenia that is fully treatable with B12 & folate. Sublingual...
  4. tooth

    Thoughts and experiences of having an FDG PET

    PS: I saw the post from the person who became severely ill after PET too :( I plan on taking ALL the binders and detox stuff I have kicking around when I get home. Will let you know how it goes when I can.
  5. tooth

    Thoughts and experiences of having an FDG PET

    Hello, I understand your trepidation. Have been bedridden for 4 1/2 yrs, no luck with GPs, as I'm sure you know. Things have been desperate over the last 18 months and I paid privately to see a neuro-immunology specialist who referred me back into the NHS this month and am about about do all...
  6. tooth

    Thoughts and experiences of having an FDG PET

    @Jackdaw - Hello. I am due for a FDG PET on the NHS tomorrow...I would normally have said no to being injected with anything but it's getting to the point where I just have to do it. Did you go ahead with it in the end? How was it?
  7. tooth

    Provoking Herx as diagnostic tool

    @uglevod - thanks - after several years of being insane I lucked out this month on a neurologist "obsessed by pseudo-psychiatric symptoms". Haven't mentioned bartonella etc yet, as it's on the national health service and I'm in absolutely no position to look a gift horse in the mouth, but expect...
  8. tooth

    Provoking Herx as diagnostic tool

    Hi @Aurelius. I figured out I had severe bartonella by accidentally taking a high dose of Sida Acuta and having the mother of all herxes (Buhner recommends it in his Lyme book for nerve pain, I initially took it for that thinking it was just a nervine and not a strong antimicrobial), hadn't even...
  9. tooth

    Active B12 Protocol Basics

    Hi dear @Freddd Thank you for all your information here. After two years of farting around I can finally tolerate folate of any sort. The tiniest crumb of methylfolate or teaspoon of chickpeas/liver etc would spin me out and leave me bedridden for weeks. Had to cut out all folate/folic/folinic...
  10. tooth

    Corticosteroids such as prednisone given during an acute viral infection may trigger ME/CFS

    Sorry to drag up an old thread, but I saw @Hip referencing this study in another post. I think I probably had moderate ME since a teenager before the big crash. I do think mine is somewhat virally related (perhaps not exclusively a virus itself but more that there's an inherited chink in the...
  11. tooth

    tooth

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    • Blog
  12. tooth

    Comment by 'tooth' in 'Progress update 10/9/2017'

    Hi Dainty, what does DO stand for? I've seen several GPs and practitioners over the last few years who have said my gut feels hard to the touch and doesn't feel "right". Inflamed spleen was pointed out a few times when I first went to see my GP but that only seems to bother me when I crash these...
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    • Blog entry comment
  13. tooth

    Folinic Acid

    @dannybex - I agree RE: food sensitivities, I'm still figuring them out. However the symptoms I get when I eat high folate foods match the ones I have when I have taken methylfolate in the past or accidentally eat something enriched with folic acid - great for a few hours then absolute death for...
  14. tooth

    Folinic Acid

    Hello, sorry to possibly hijack this thread. I absolutely don't tolerate folic acid or methylfolate (the devil) like some of you here. I have real problems with veg folates and folates from animal organs too. I do however tolerate, and need, a bit of methylfolate every other day. What are all...
  15. tooth

    Improvements during menstruation?

    @pibee - sorry! I didn't realise yours is bacterial. I just saw you were using AVs and thought there might be a viral component to your illness. When I told my functional med dr about this earlier in the year she said oestrogen is at its highest during ovulation and progesterone lowest...
  16. tooth

    Improvements during menstruation?

    I know Selfhacked is frowned upon a bit on these boards and I still feel like a baby as far as researching goes, but the last few years I've been feeling my best from period -> pre-ovulation days and then terrible from ovulation onwards. Sometimes during ovulation I am one step away from a coma...
  17. tooth

    What causes lack of emotion?

    I'm not one for nightmares but waking up from dreams where I've been running is one of the very few things that can make me sad.
  18. tooth

    Emergency, Please Help

    @Gondwanaland why would it be prudent to avoid Magnesium Glycinate?