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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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  1. susieq777

    Cannabis in Australia

    www.australiancannabisuniversity.org is worth a look too though I haven't bought any of their products myself.
  2. susieq777

    CBD Oil Anyone?

    Hemp oil contains CBD but is naturally low in THC. I took a low dose full spectrum hemp cbd oil from https://essentialextractpure.co/ and for the first six weeks didn't feel it did much. I quit bothering with it. But it can take 6 weeks to work for some people. I decided to try it after I...
  3. susieq777

    CBD oil and headaches

    @geekbread Yes, I've had headaches in exactly the same spot. Odd!! They're not very strong though, certainly not strong enough to stop taking it as it's been really good for me. I didn't get much help from it when I first began taking it, except for a calming effect. I was beginning to think it...
  4. susieq777

    Creatine supplementation reduces my PEM

    The Hup A and creatine together are what's feeling so helpful. The Hup A helps with vagal tone and to dampen down my insane sympathetic nervous system responses. During a crash I have a lot of emotional symptoms that directly mimic my fraught childhood and feel remarkably like PTSD. The Hup A...
  5. susieq777

    Creatine supplementation reduces my PEM

    Hey @grapes, I've upped my Hup A dose by double now, so to 100mg twice a day. I know it hasn't been long but I'm still impressed with how much this is helping me. I took on some transcription work yesterday and the day before, which was 4.5 hours worth of work! I'm feeling sinusey today and...
  6. susieq777

    Creatine supplementation reduces my PEM

    Yes, that's where I got the idea to try them next. It's always amazing when something helps!
  7. susieq777

    Creatine supplementation reduces my PEM

    I don't know if this is a one-off or repeatable but I've largely avoided PEM from walking for an hour the other day, which is a stupid thing to do. But I wanted to test my cocktail and it seemed to work: 5g creatine HCI twice a day Huperzine A 50mg twice a day One standard dose of BCAAs when I...
  8. susieq777

    Smells Like Petrol/Gas

    Hi Wayne. I watched the video but must have zoned out when he talked about it and missed it. That seems weird that it would be methane as it smells nothing at all like it and way more like I'm standing at the petrol bowser. But perhaps it is a byproduct of that. I do suspect SIBO and IBS-C so...
  9. susieq777

    Smells Like Petrol/Gas

    Hi everyone, Anyone got any ideas on what the strong petroleum-type smell could be after having a coffee enema? I get this smell often but today it was especially strong. I'm also feeling a strong level of relief from horrible anxiety and feelings of toxicity afterwards. So, so, so grateful...
  10. susieq777

    Vitamin C - any dangers?

    Who knows? Sigh. My symptoms HAVE improved quite a lot recently, but who knows if it's vit C, or the adrenal cortex, or the Moon in Uranus? I just don't know.
  11. susieq777

    hypothalamus extract

    Yes, I think it is. I'm now taking it twice a day. I've got another bottle that I'm going to take and then I think I'll have a rest and see what happens. My fatigue has lessened and my brain fog too. I was already seeing some improvement before taking these so I don't know if I can attribute it...
  12. susieq777

    hypothalamus extract

    I'm very early days playing in the glandular extract park at the moment. Took a while to get here because the idea of taking cow glands is rather revolting, really. The entire adrenal glandular I took was WAY too overstimulating. Yuk, yuk. Horrid. I can't see how this would help anyone with...
  13. susieq777

    Vitamin C - any dangers?

    You probably don't really want to know, having never met me before, that bowel tolerance for me was 19 grams. I took 18 grams the first day, and nothing happened. That felt like a lot until I read elsewhere online that some people can tolerate up to 30 grams :O
  14. susieq777

    when is recovery actually recovery

    Ah, the am I recovered question. I've had several periods where I thought I was, simply because in comparison with how I felt I was so much better. It was like this urge to get away from that hellish existence and be back from the underworld, in the land of the living. I guess you could say...
  15. susieq777

    susieq777

    • susieq777
    • Blog
    • Blog entries: 1
  16. susieq777

    Biting Off More

    I've really tried over the 15 years of this illness to follow its behest. But it keeps moving the behest from one space to another so I'm forever looking around trying to work out just where those limits are. For a while there they were of such a reasonable CFSey size that I actually convinced...
  17. susieq777

    Anyone want to sell their Gupta program?

    I'm looking for a copy also, if anyone would like to sell theirs. Thanks.
  18. susieq777

    Is Methylfolate Safe to Take in High Doses Without MTHFR Mutation?

    Thanks for your response, Brad. I am now taking 15mg methylfolate a day, divided into four doses, and am seeing the benefits. I went through the whole paradoxical folate deficiency thing, where several times I was feeling like I should stop taking the methylfolate (and on a couple of days...
  19. susieq777

    Is Methylfolate Safe to Take in High Doses Without MTHFR Mutation?

    Thanks for your response, Beyond. I am planning on having the 23andme test but I haven't been working and 99 dollars may as well be 9900 dollars lately. I didn't realise there were so many different MTHFR SNPs. I had a negative blood test for MTHFR - but then I don't know if it tests for...
  20. susieq777

    repairing with B12 without overmethylation?

  21. susieq777

    Is Methylfolate Safe to Take in High Doses Without MTHFR Mutation?

    Just wondering if anyone here knows that they DON'T have an MTHFR mutation and yet do well on high doses of methylfolate? I'm feeling scared about taking it, even though it seems to be helping me. I'm taking 11mg a day. Thanks in advance for any help. Sue
  22. susieq777

    Is Methylfolate Safe to Take in High Doses Without MTHFR Mutation?

    Just wondering if anyone here knows that they DON'T have an MTHFR mutation and yet do well on high doses of methylfolate? I'm feeling scared about taking it, even though it seems to be helping me. I'm taking 11mg a day. Thanks in advance for any help. Sue
  23. susieq777

    Titrating out of Donut Hole Insufficiency

    Hi all. I've been following Fredd's protocol for the last six weeks or so and seeing real improvement, despite setbacks and confusion from stopping and starting again, feeling scared to increase my dose, etc. I'm now up to 3200mcg Solgar methylfolate and 10000mcg adb12 and about half that of...