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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. moonchild

    What Do You All Do About The Dentist?

    Hi Sushi I haven't been to this dentist before but I very much doubt the testing for compatibility will be an option - possibly with a holistic dentist but they are very rare and very expensive here. Thanks for the tip on the epinephrine, will note that one down now.
  2. moonchild

    What Do You All Do About The Dentist?

    Anyone happen to know where the info Sushi talks about re options and toxicity can be found? I've managed to get an appointment for less than 24 hrs away and suspect I'm going to need a little filling where I've overbrushed a tooth. From what I can in a quick search it seems composite is a...
  3. moonchild

    'PHANU Rising': Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt I

    Thanks very much for this Cort, really good to read more about this even though I've been involved in the study. Just a little correction - it is Griffith University (no 's' at the end).
  4. moonchild

    Low dose Naltrexone

    thanks penny, this is really helpful. you always hope to be one of those people who gets a miracle cure overnight with no side effects but any improvement at all sounds good to me! anything that could turn down my pain a notch or two would make a huge difference to my quality of life. and...
  5. moonchild

    Low dose Naltrexone

    that's fantastic! (well, hopefully it's a good sign) best of luck, and keep us posted on your progress?
  6. moonchild

    Low dose Naltrexone

    thanks penny, it always helps to know that you're not alone (even though you wish that no-one else had share the horrible experiences). how long have you taken it for? and how do you find that it helps you? cheers
  7. moonchild

    Low dose Naltrexone

    interesting little 'wondering'...was just researching a possible drug to try and came across a lot of info on an archived PR thread. in this thread there happened to be a mention of LDN leading to IRIS in some people. so many different theories with this - my head is spinning!
  8. moonchild

    Low dose Naltrexone

    now i'm wondering why my body would be metabolising it in an unusual way! i've had liver function (which seemed the obvious one to me, especially when i look at my symptom profile) checked in the past and it wasn't really out significantly. going to be interesting to see what my dr has to say...
  9. moonchild

    Low dose Naltrexone

    hi sushi thanks very much for the reply. i know you're not an expert (although i've seen a lot of your comments around here and you seem very knowledgeable!) but your thoughts are still very interesting and helpful. i'm starting to think the same about perhaps needing to try a lower dose...
  10. moonchild

    Low dose Naltrexone

    i don't think i ever got back to this! (shouldn't really be surprised...my head is like sieve) i came across the thread again while looking for more LDN info and realised i had posted on here months ago when i was first looking into it. so, an update. i finally started taking the LDN in...
  11. moonchild

    WPI Statement

    and the WPI f/b page is gone again...
  12. moonchild

    Square One: WPI closed down; XRx blog, 10/2/11

    Daffodil, one of my first thoughts was about the sequencing. Just two days before I had read the quote from Dr. Mikovits and had such renewed hope that we were on the cusp of a big development...the timing of this just seems too cruel. And yet, reading Dr. Deckoff - Jones's blog, it seems...
  13. moonchild

    Breaking News: WPI research program has been closed

    The part i am really not understanding is that only yesterday i read that Dr. Mikovits had stated that the sequencing would be finished within a couple of weeks (i found this on here) - and Dr. Jamie's blog mentions knowing about this for a couple of weeks, which sounds like Dr. Mikovits would...
  14. moonchild

    Low dose Naltrexone

    hi again trace...just a quick hello and thankyou for the reply - totally crashed at the moment but get back to you properly soon...
  15. moonchild

    Low dose Naltrexone

    trace, i wanted to thank you for sharing your experience...i haven't heard too many people mention the facial pain as a dominant symptom, and for me it's that and the accompanying constant headaches and neck pain that are absolutely unbearable (and i have found nothing at all to help with). in...
  16. moonchild

    Can Dreams Come True?

    i believe dreams can come true! why hello there onlyresting... as someone who has also had this a long time i wanted to chip in with what i think might be slightly different perspective perhaps. even now i find myself overwhelmed by the amount of information out there and where to begin...
  17. moonchild

    To the Aussies

    could give you some more qld names of dr's etc if you want them still...
  18. moonchild

    To the Aussies

    re. the bond study - am thrilled to see some research going on locally and desperately want this to yield something useful for us. having attended an info session about it and been hearing from people involved since, i do have some serious concerns about the way it is set up, the organisation...
  19. moonchild

    Dr Teitelbaum & LDN

    sallysblooms, quite a few people have been telling me that ribose has helped their pain and energy. have just ordered some from the US - cheaper than buying it here as far as i can tell - and started taking it. the brand i ordered seems to be the one that keeps coming up (and is the one...
  20. moonchild

    Dr Teitelbaum & LDN

    really interested to see all these opinions...definitely take on board all the comments, i'm sure people in the same country as him know much much more by word of mouth over the years etc. and also the ribose reference had my ears pricking up - just started taking some as it seemed to keep...
  21. moonchild

    Dr Teitelbaum & LDN

    PS oh, and i did wonder about his 'cure' ( i think was the word?) rates...of all the people i've known and heard of with severe CFIDS i've haven't yet found one who has sustained a significant improvement that seems attributable to anything other than time, let alone a 'cure' (we wish!).
  22. moonchild

    Dr Teitelbaum & LDN

    ironically my eyes/head/concentration simply aren't up to watching the video at the moment (slow computer doesn't help - you get it all in snatches and then have to wait while it loads another little bit). the link you provided was enlightening...what i've been basing my opinion on so far is...
  23. moonchild

    Dr Teitelbaum & LDN

    i've read that about teitelbaum (possibly here?) before, but from what i've come across so far in his work i don't get that impression really. and many of his ideas for treatment seem to be similar to myhills and revolve around mitochondrial function...
  24. moonchild

    Low dose Naltrexone

    have just been given a script to try tramal again and was reassured by the dr that it would be not even vaguely addictive (VERY bad experience getting off morphine/oxycontin after a few years on that) so find this a bit scary. also looking into trying LDN after some good feedback from a few...
  25. moonchild

    Dr Teitelbaum & LDN

    just been reading some of teitelbaum (in a round-about way while trying to find out more about things in the myhill protocol)...and at the same time also trying to find out more about LDN - will look up the link above thanks. i have a vague memory of reading some more positive XMRV comments...
  26. moonchild

    Inosine & LDN

    inosine seemed to draw blanks with my drs here - is it 'just' a b vitamin though? really interested to read your comment sela..had never even thought of that. just looking into LDN properly for the first time now.
  27. moonchild

    myhill protocol - experiences?

    yep, i have looked at her site thanks (slowing wading through it but finding it all quite overwhelming and a bit hard to navigate). i thought that her case had been through the hearing...is it really still continuing??
  28. moonchild

    myhill protocol - experiences?

    oh, one more thing...any thoughts on myhill vs teitelbaum (if that's how you spell it?)? a lot of their suggestions seem to be similar...
  29. moonchild

    myhill protocol - experiences?

    thanks for all the replies and the names of threads to check out. the dr i saw here would send the sample straight to acumen, not through myhill. she gave me a copy of their paper that has been mentioned and also a summery of her treatment plan. at the moment i'm still recovering from...
  30. moonchild

    myhill protocol - experiences?

    hi everyone hope i'm putting this in the right place...tried searching a few ways and couldn't find anything about the myhill protocol - apologies if i'm missing something that is here. just saw a GP today who worked with dr. myhill in the UK and treats along the lines of the myhill...