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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. leaves

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    Is this a joke?? I can not believe it.. this is NUTS. Dont know if I have to laugh or cry.. with friends like these ... God have mercy. On the outside Mikovits behavior seems consistent with someone that has narcissistic personality disorder; the charisma, the lying, the need for...
  2. leaves

    lithium experiences

    Si I just (finally) started the lithium (orotate) 5 mg seemed to improve cognition, but I think 10 mg caused foggyness. So I think I will stick with 5 mg for a while.. Any more updates?
  3. leaves

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    Oh Sue definitely see a lyme literate doc too! Who does the proper lyme tests, (IGENEX) klimas does not run those. i think first go to lyme doc, then go to Klimas.
  4. leaves

    son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

    Hey Sue sweetie, After reading your posts I still do not know what is wrong with him. if only there were good doctors available to us!!! However what I do see is that his wife has a VERY bad effect on him. irrespective of the cause of his symptoms i think it is important to deal with that...
  5. leaves

    Comment by 'leaves' in 'Interesting test results'

    The neck MRI was recommended to me by my chiropract because of neck pain and numbness in arms and legs. The EEG was recommended after neuropsychiatric testing that revealed that my frontal lobes appeared to not function well. My memory is very bad. In addition i have a lot of uncontrollable...
  6. leaves

    lithium experiences

    the dosages of lithium that are prescribed are many many times larger than the 5 mg that are in supplements
  7. leaves

    Interesting test results

    I suppose most have us have been there; feeling very sick but having all the standard test results show up normal. The feeling, when the doctor gleefully informs you that you are completely healthy, when you feel so sick, is not one of excitement. For me tides seem to have changed now...
  8. leaves

    Help, bad neck cramps on ldn

    Hi there, yes im still taking it and i think it helps me. Can only advice to go super slow.
  9. leaves

    Horrendous Twitching without Valcyclovir

    It could be myoclonus. I know some antibiotics can cause (or worsen this) perhaps the antivirals too. It is actually a type of seizure, although not as dangereous as a generalized seazures. Hiccups is myoclonus too. You could try increasing your seizure threshold (not taking coffee, stimulants...
  10. leaves

    Horrendous Twitching without Valcyclovir

    Is it possible you take a lot of magnesium? Calcium deficiency (for example thru magnesium) can also cause this
  11. leaves

    skullcap?

    Yes but be sure you get Chinese skullcap : studies show it reduces seizures. American skullcap may actually increase seizures.
  12. leaves

    skullcap?

    Thanks Dreamer, I like to try supplements separately to see how I react but this def sounds like something I want to try :)
  13. leaves

    Neurofeedback

    Any new experiences/ comments?
  14. leaves

    skullcap?

    Any experience with this herb? I hear it reduces seizures and allergies and anxiety and improves sleep...
  15. leaves

    Are seizures related to ME?

    I have the body shaking but not the head perse. I am scheduled for a sleep deprived EEG this week...(IEKK!!) wish me luck...
  16. leaves

    son 30 some pain now but pale stools and alt elevated?? Fatigued!!

    fatty acids such as r-lipoic acid and fish oil may help this
  17. leaves

    Ruscetti Acknowledges Reuse of WB Image

    Just wanted to say; Thank you guys for this productive and intelligent discussion; very good arguments on both sides.
  18. leaves

    Ruscetti Acknowledges Resuse of WB Image 2

    Just wanted to say; Thank you guys for this productive and intelligent discussion; very good arguments on both sides.
  19. leaves

    This Requires A Very Good Explanation

    Come on people, this is not just "a mistake". Don't you see that? I have been a big supporter of WPI, sending them a lot of money whilst having only little. But this is very serious. At best they are incredibly sloppy and disorganized. Let's pray for that.
  20. leaves

    VIP Dx XMRV Test discontinued

    Yes, the "lack of interest" is just spinn
  21. leaves

    The real story about XMRV coming out today?

    I am done. Judy Mikovits has lost her credibility in my eyes. I have given her the benefit of the doubt, many times, ignoring the fish odor. But all these 'mistakes' cannot just be coincidence, statistically that is unlikely. I am very much afraid that ME/CFS has attracted yet another charlatan...
  22. leaves

    EPA/DHA ratio?

    Hmm so I guess it is trial and error then.. Kind of convoluted this multidimensional optimization, I am more the binary type :)
  23. leaves

    EPA/DHA ratio?

    Interesting all; thanks!! Especially the EPA and DHA axis stuff, Pokerplayer did you try the jarrow DHA supplement, i.e. do you feel you need EPA at all?
  24. leaves

    EPA/DHA ratio?

    Hey SOC :) Yes that is a very good point! Actually I was feeling very hypoglycemic too, and my OI was worse too, so it is possible that that is also related then? Hmm too bad, this was supposed to WORK ! :-\ Would a lower dose be good or just not take it at all? I have such dry eyes and this is...
  25. leaves

    Coffee reduces depression risk

    yes well coffee increases seizures too, so Ill pass..
  26. leaves

    Are seizures related to ME?

    My doc suspects I have seizures too. I will have an EEG soon. I always thought seizures were all about losing consciousness, but now, after reading up on temporal lobe epilepsy its like :THAT'S ME!! it would explain my extreme memory problems too. Problem is; the medicines suck. I tried lamictal...
  27. leaves

    EPA/DHA ratio?

    So I have been taking a high EPA fish oil the last 2 weeks and I notice I am more tired than usual. What are your experiences? Should I opt for DHA instead?
  28. leaves

    Feel extreme head pressure/exploding head/PMS

    Hey Kat, So sorry you have it too. Yes it really is a terrible feeling. like your brain is bursting out of your head or something, or something terrible is about to happen. I wish I knew what it was.. are your hormones a factor?
  29. leaves

    List your 3 favorite supplements

    hmm i want to update my post, i dont take sam-e and thejarrow bright anymore. If I now make a list it would be; 1 methylfolate (makes me dream again) 2 zinc (25mg) (more energy, more stable) 3 vitamin e with tocotrienols (PMS) and for meds:LDN and I also like magnesium, strep free probiotic...
  30. leaves

    A B Thread: Is more always better?

    Hi Danny! Indeed it has been a long time, I am doing well lately, that is why I have not been around a lot, I must admit.. I am still not taking any b6. Numbness is a bit better but not a lot, I think it may be posture related too, if I hang a lot on the couch it gets worse. I now only take...