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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Sundancer

    question about vit D not rising although supplementing

    thanks all for responding, although I really am looking for a publication that I know is there, as I've seen it but as it does not concern me I let it pass. some months I think, i do not know the situation well but hoped to give mom this publication when I heard her story. Until now the...
  2. Sundancer

    question about vit D not rising although supplementing

    dear all, a mom with a sick son asked this question elsewhere, now I seem to remember there has been a piece of research on this. Could someone point out this piece of writing to me so that I can forward it to her? mom is at her wits end. he gets hydroxy-injections, vit D and folic acid...
  3. Sundancer

    Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

    I have no idea what it is, but I avoid it because even in tiny amount brainfog and dizziness rear their ugly heads.
  4. Sundancer

    B12 as hydroxy and histamin

    I do not know that, I've chosen to go for high dosage of B12 because I have neuropathy and other things clearly looking like severe b12 shortage, so I eat very low histamine plus take benadryl to handle it. I fare well on that and now looking into causes of mastcell activation and how to counter...
  5. Sundancer

    Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

    thank you, but although my liver can use help too I'm in need of methylator and the choline seems to work well for me. then looking around I thought maybe using phoshatidylcholine would be good too for me, then wondering whether the methylating effect would be same when I switch to sunflower...
  6. Sundancer

    Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

    some time ago that I've read this thread, now since a few weeks I've used choline and it's helpful. It seems to give more energy. I take it 3 times daily with food. 3 X 1/3 of a gram. Now that it goes well I'm thinking of slowly switching to phospatidylcholine and see what that brings me. But...
  7. Sundancer

    B12 as hydroxy and histamin

    agreeing with @jason30 here, B12 temporarily downturns DAO enzyme. I remember at the start after an injection I first felt body stress ( high muscle-tension) go down quickly, then about an hour or so later muscle-tension returned somewhat accompanied by itching and after that the muscle-tension...
  8. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    yes, that maybe helpful, thank you
  9. Sundancer

    Ladies. How common is Vulvodynia in MEcfs ?

    thanks, I did use something like that, and inded, lightly patting instead of wiping. I'm glad to say that I don't need the waterbottle anymore.
  10. Sundancer

    Ladies. How common is Vulvodynia in MEcfs ?

    not having had any diagnostics on it but sounds like that's what it is called, oow. started about a year before I crashed into bed-bound. Continual hurt, being very careful wiping. Not only vulvar but vaginal too. the last pap-smear I had was hell, even though the GP I had at the time was very...
  11. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    well, I have been meditating before I fell ill, but nothing exceptional, a 20 minutes on my bum daily. During my period of bed-bound I went ' through the motions' for hours on end, was the only way to come through it. Now housebound and sometimes I berate myself for not getting back to my...
  12. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    I did not do that 'think that you move thing', although I was aware of it. But I did sometimes go back in my memories, in exceptionally bad times that is. It started out like just thinking back on things of my childhood. And then all of a sudden I sort of "fell in my memories" like, I was not...
  13. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    :hug::angel::thumbsup::balloons: :_:_:_ they're back!! yes, it's a beautiful mantra, this is another version and her voice is made of something very special. this one I like so much, it's like the mother i never had is singing for me. :balanced:
  14. Sundancer

    Dealing with disbelieving doctor

    thanks, I needed to hear that, struggling with unbelieving doctors here, I'll fight on.
  15. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    hmm, thinking back. In the time that I was almost bedbound ( 22 hours per day, rest I needed to get food/drink and bathroom) I slept about 4 hours ( 2 times 2 hours) the period of the day that was reserved for sleeping i sang mantra's in my head, endlessly repeating, om tare tu tare etcetera ad...
  16. Sundancer

    Recommendations on ways to rest with little to no cognitive activity?

    I remember rereading books when I was more ill. At first childrens-books, later normal books. As I already knew the plot the reading did not take much energy and I remember enjoying it. Enjoying the descriptions of scenery, the dialogues, zooming in more on the details then I did before. but...
  17. Sundancer

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    found it, I do not like the supplement selling thing and do not know whether this is source is to be trusted, but found it interesting. when you read the text you've more or less covered the video . http://www.beyondmthfr.com/mthfr-digestion-methylation-connection-gallbladder-function/
  18. Sundancer

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    I do not like those new emojis either, some time ago I've seen a video that had as core-point that gallstones are probably have a causal relation with glucoronisation taking over from...ehrr...something else, I think sulfurmetabolizing. When I find it back i will post it here too. Interesting...
  19. Sundancer

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    last year I made a topic about constipation, someone posted this video, educative I'll see whether i find the energy for that long paper about bile too, it looks interesting. Interestingly last weeks I do have almost black poo with a greenish hue, which suggests that my liver is working...
  20. Sundancer

    Dirty Genes book by Ben Lynch - review

    have been reading it and looked at several video's from him. Think it's interesting, some things click with me. I like the way he does not want you to start buying supplements but to clean up food and other habits first, some things in that department still need to be done here, so I will. I...
  21. Sundancer

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    well, I can tell you what steps I took, but whether it works for someone else I do not know Also I now have some idea about why and how, which I had not at the moment it happened. The fact the I'm very histamine intolerant I was unaware of. So..the steps were as follows. First I quit the last...
  22. Sundancer

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    I've used ( and use) L-theanine + glycine during the day and natural GABA + glycine before bedtime and managed to resolve the issue, even the f*#*#*g tinnitus is gone. In my case it was an enormous release of histamine that has triggered the state of twired
  23. Sundancer

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    I'll first recover from my cheese and chocolate feast... till feeling bad and brainfoggy :meh: then start looking for the first outlines, then the questions will arise. Thanks, when I have those questions you'll find a PM from me
  24. Sundancer

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    Thank you, I'll print that. It is more elaborate then from the dutch counterpart. I have tested tryptase and that was allright next I'll start to study what to do to get this better.... Last week I read a paper that mentioned nitrosative stress as one of the culprits. So i quickly started...
  25. Sundancer

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    would that someone ( a doctor????;)) would have told me that 6 years ago, would have suffered a lot less and a lot less damage to my body too)
  26. Sundancer

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    Even the slightest exertion worsened my insomnia, since I'm on high dose B12 plus antihistamine it goes lots better. But still won't try exertion when falling asleep takes long, pretty sure I'm making something worse and beginning to suspect that I get high histamine from exertion. PEM btw...
  27. Sundancer

    Tinnitus and the potassium channels activity (papers by Dr Tzounopoulos)

    I had terrible tinnitus too, as with Ahmo, it lessened when I stopped dairy ( I've been gluten-low for decennia, so that little that I stopped hardly counts) Used theanine and DPPIV and after some weeks the tinnitus vanished. I now found that histamine triggers the reoccurence... At the...
  28. Sundancer

    insomnia glutamate histamines Benadryl

    hm...much of this is like me. My reumatic like hands started when I started with B12, itching too. some weeks ago I stopped taking folate as even though B1 and B6 had normalized since I was taking B12, folate was as high as ever. 10 days later the bad hands began to become better and now...
  29. Sundancer

    Annoying stomach discomfort and brain fog

    not hungry, but remember that I ate 5 or 6 times a day because bellly could not handle much food. At the time i hardly slept at all.one night 2 or 3 hours, one night none at all, then a night with a benzo of 2 plus 3 repeat, gosh I'm glad that's behind me. Later I started to eat more and...