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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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Search results

  1. S

    Porphyria anyone?

    jah, i was on this forum in 2009 with terrible fatigue. now the porphyria has really developed. i need a forum to discuss this. is anyone else here with this problem?
  2. S

    Porphyria anyone?

    jah, i have porphyria and am looking for a forum to discuss it. i started pr because i just felt fatigued for years. now it has really developed. anyone out there?
  3. S

    Anyone Else get ill after exposure to sunlight - not just the heat

    this is a very old thread, but i feel strongly that many of the people complaining of sun intolerance should look at porphyria. porphyria testing is problematic and political so a negative test is not conclusive. look it up and see if the symptoms match. most porphyrics also cannot tolerate...
  4. S

    help! need megace and marinol

    anyone have a pharmacy that gets these? a dear woman is wasting away from illness and depression, won't eat etc. none of the pharmacies i know about had them . and hiv type pharma might.
  5. S

    flagyl is killing me yet i can't get rid of the giardia

    i am in so much oxidative stress that i can't tolerate the treatment, it makes me so ill. and it is not working anyway. the giardia came back. any suggestions?
  6. S

    Suggestions needed for chronic Bronchitis

    agree on acupuncture. doesn't help cfs , but can help lungs , can help stomach.
  7. S

    tinadazole/metronidazole/ are they really harmful?

    on top of everything else , i came down with giardia. trying to cure with enzymes but am getting tired of being ill. i hate these harmful drugs but... does anyone have a scary story to keep me from caving in and taking them? or maybe they aren't so destructive after all. feedback?
  8. S

    Anyone concerned about Oxalates ?

    after 4 days , i got massive detox. if you have it , you can know just by cutting some major oxalate foods. vitamin c was my main source. it's clear this on the docket now.
  9. S

    Anyone concerned about Oxalates ?

    they also say that getting this under control make other protocols start working. did anyone have that experience? doesn't sound too promising from the feedback here.
  10. S

    Anyone concerned about Oxalates ?

    did anyone have the dumping of sand like matter that is described on the yahoo forum? i can't decide how i will know if i have the problem unless i get that. the oxalate crystals have to come out.
  11. S

    piracetam for cognitive stuff and circulation?

    wayne, thanks for chanda mama. great stuff. did you get your earthing mat from earthing institute? does it matter?
  12. S

    nac

    would anyone like to post their experience with this? it is so frequently recommended. i am sure there have been posts already but the search function doesn't seem to work for me.
  13. S

    after high dose b12 injectable

    august, do you trust the place you recommended? do you need perscription? and i wonder if it would be safer to get hydroxy as the shipping precautions are so touchy around methyl. any experience here?
  14. S

    Faecal transplant eases symptoms of Parkinson's (and CFS)

    i found some 'do it yourself' instructions on line. some were suggesting a baby diaper.
  15. S

    Best sublingual Methyl B-12?

    what about the nasal spray b12? methylmate i think. to me jarrow is not cost effective because it is highly flavored and causes so much salivation that i end up chewing it and swallowing before i know i am doing it. seems like the nose stuff might be a good way for it to get into the body...
  16. S

    Stiffening hands, loss of hand control?

    yes, handwriting going to hell. even typing is harder. can't play the piano anymore. clumsier in general, dropping things in the kitchen etc. i would love to know why. could it be postural? lying around a lot is bad for the alignment of the spine.
  17. S

    TH2 Immune System Dominance and Heterogeneity in ME/CFS

    HGH supply becomes exhausted. Low HGH levels have been associated with : Low energy, decreased lean muscle mass, increased abdominal fat, decreased strength and exercise tolerance, feelings or anxiety sadness and social avoidance, dry thin skin, sleep disturbances, decline in bone density...
  18. S

    KPU & Mercury and other Heavy Metal Chelation

    kday, are you still doing kpu? interested in how you are doing and if you found a solution.
  19. S

    "TV Static Cured My ME"

    i used to have a machine that did the binaural thing. it was fantastic and truly relaxing. it felt like it reset my brain to zero. like it is supposed to be when you get up in the morning,
  20. S

    Dr. Larry Sharp (CFIDS doctor)?

    is there any possiblity of passing on what his protocol is? there is no way i can afford $50 / month nor can fly to see doctors. it seems harsh to be cut off from medical knowledge because of money.
  21. S

    My recovery story

    if you have your root canals removed, what do you replace them with? if you leave a gap, all your teeth will move around and get crooked.
  22. S

    Week 8 on Valcyte

    i wonder if you have considered pyrroluria. it is a deficiency of zinc and can cause extreme sensitivity to stress.
  23. S

    LDN- I am afraid to take this.....

    ldn generally disturbs sleep for some period of time . i found that milk thistle took care of this problem , so for me, it must have had to do with clearing the liver. i liked ldn and had positive effects. i think if you start with a tiny dose nothing very dramatic will occur. btw, i...
  24. S

    Cognitive Dysfunction, What Parts of your Brain are Missing??

    voner, there was a new yorker article by that famous neurologist (what's his name?) about ( what was it?) but in any case he talked about not being able to visualize. he has it, functions normally, it's a genetic thing. i have it too, i was happy to read about myself. i am sure you can...
  25. S

    Humic & Fulvic Acids

    i am excited to try this stuff but am discouraged by the impossiblity of deciphering the vendors' different clalims. i read 3 sites at length. all three claim to be the only pure or authentic or clean stuff. all three say the the other guy's stuff is no good, no strong enough...
  26. S

    Homeopathy

    homeopathy can be extremely powerful. i know this because i have gone to three local famous ones that charge 4-500 a session. all three gave me remedies that made me extremely ill. this is supposedly sugar pills , right? i spent thousands tryng to find a remedy to cure the illness that the...
  27. S

    Liver detoxification pathways

    antherder, thanks for this. do you know what mega h is? it was mentioned and since the information was such high quality i feel i should follow up on that. never seen it come up here on pr.
  28. S

    KPU & Mercury and other Heavy Metal Chelation

    could there be any relation between what you are talking about and breathlessness? i am doing the kpu protocol and among other things i am getting breathless.
  29. S

    getting tolerance to tramal

    http://www.medhelp.org/user_journals/show/179087/Tramadol--Ultram-Recovery-Room-Part-31 scroll down to finallyfred and read from there.
  30. S

    getting tolerance to tramal

    do some research on what happens when people get off of it. and it is dangerously "energizing", except it really isn't, it just masks your situation. and i understand that some pain needs to be treated. it apparently has some sort of anti-depressant built into it. heapsreal, try to go...