• Welcome to Phoenix Rising!

    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. Y

    http://www.edta.net/ any experience?

    These are supposed to be super safe, contrary to other methods of edta chelation.
  2. Y

    Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

    Thanks! That’s more or less the same like Aciclovir, isn’t it.? But I guess it can also be risky, when you’re very severe and react very sensitive to whatever medication.
  3. Y

    Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

    What does he propose if you have high vzv igG titers?
  4. Y

    [Efficacy and safety of noophen in treatment of CFS in patients with cerebrovascular insufficiency]

  5. Y

    You probably have an autoimmune disease...

    H how did you get your Hashimoto in remission??
  6. Y

    Melatonin and natural Progesterone helping with Migraine and Headache

    Wow, thanks interesting! What type and what dosage of melatonin and progesterone are you taking?
  7. Y

    Abilify- Stanford Clinic Patients

    I’m sorry, but too sick to read the papers. Are you saying this could be a promising alternative to Abilify?
  8. Y

    Abilify- Stanford Clinic Patients

    @Martin aka paused||M.E. Martin, How are you?
  9. Y

    Abilify- Stanford Clinic Patients

    Severe to very severe
  10. Y

    Abilify- Stanford Clinic Patients

    I find both Amisulpride and Abilify too stimulating unfortunately. If I take a drop of Abilify each day, I have a few good days, but have to stop after 5-6 days due to a heavy Migræne and rebound fatigue. Amisulpride gives me a noticeable boost at 6mg, but unfortunately rebound fatigue the day...
  11. Y

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    It doesn’t have deep pockets I’m afraid. I’d have to check the source again, but quite sure it was something around 750.000 in total for all applications....
  12. Y

    Abilify- Stanford Clinic Patients

    Lucinda Bateman says she uses topimarate on some patients . That’s the matrix Goldstein developed and used treating his patients.
  13. Y

    Abilify- Stanford Clinic Patients

    @S-VV not able to express or write them down so well anymore, but otherwise my thoughts exactly.
  14. Y

    Abilify- Stanford Clinic Patients

    olanzapine did not help me. But i just trialed it for 5 days or so. made me feel tired and stoned and have me a migraine. but that being said,abilify does not help me. already 0,25 ml gives me a lot of energy, but I crash heavily on the next day. to me it feels more like doping than real energy...
  15. Y

    Abilify- Stanford Clinic Patients

    Hi, you said that you got severe braindamage from taking tenofovir,if I got that right. How did that happen or what exactly happened? This is very interesting to me, as i was planning on trialing tenofovir. thanks
  16. Y

    Glutathione causing anxiety/irritability

    even super low doses like 50mg of Nac or Glutathione make me absolutely hyper, and eventually crash me. i can tolerate whey in very small doses, but didn’t notice a difference in symptoms..
  17. Y

    Emapunil. Any experiences? wondering if it might have a similar effect to the one Benzos have?

    https://parkinsonsnewstoday.com/2019/03/04/emapunil-parkinsons-mouse-study/
  18. Y

    Abilify- Stanford Clinic Patients

    no, venlafaxine felt fine, as far a I remember. It took some time to take effect, but that was all. I just took abilify twice, but it crashed me so hard, that I feel I need to recover first to the pre- abilify level ( hopefully) before venturing another go at an even lower dosage.
  19. Y

    Abilify- Stanford Clinic Patients

    Thank you! I didn’t know that. Strangely enough I actually do take an SNRI (Venlafaxin 75mg), but I never had the feeling that it stimulated me in any way, overall it stabilized me and made my POTS better, whereas with Abilfy I clearly have that hyper -stimulated feeling and it crashes me, what...
  20. Y

    Abilify- Stanford Clinic Patients

    ron davis mentions pilot study of abilify, in which it seems to help ca. 80% of participants to some degree! unfortunately i’m not among these. after three days of good energy on just 0,25 mg I crashed quite heavily and still haven’t recovered back to baseline. It’s my problem with every...
  21. Y

    Abilify- Stanford Clinic Patients

    Thank you for sharing your experience! yes,i’ll definitely try to stick with it and lower the dose, also in spite of the unpleasant feelings i definitely had a slight uptick in energy the next day. fingers crossed 🤞🏻
  22. Y

    Abilify- Stanford Clinic Patients

    I just tried my first dose abilify 0,25 mg. unfortunately that was enough to make me feel hyper stimulated in an unpleasant way and have trouble sleeping. 😔. bummer! after seeing martins progress i was sure to be up and running by christmas;). Well, doesn’t look like it. I’ll try 0,10 next time...
  23. Y

    From very severe to moderate in two months

    thanks!
  24. Y

    From very severe to moderate in two months

    hi, could i ask where you ordered your abilify? are there trustworthy online resources?
  25. Y

    Protein deficiency: possible root causes?

    A question if you don’t mind: Iam trying to do an amino acid profile test and it’s seems to be really difficult for the practitioners I work with for some reason. The problem seems to to be that they apparently don’t test all amino acids, but have to pick the ones , that get tested? can i ask...
  26. Y

    List of ME/CFS Recovery and Improvement Stories

    https://www.actionforme.org.uk/assets/components/discuss/attachments/2/6193/nimodipine%20use%20in%20me,%20jan%202014.pdf great list @Hip! I just remembered susan Parker’s document on nimodipine. she and others recovered on it and peter rowes paper on stenosis with 3 women recovering after surgery.
  27. Y

    Help please ! The sicker I get the more stimulus /energy I get from various supplements, and the faster I crash from that energy.

    I definitely think i have a dopamine problem. I also have lots of COMT mutations. was also diagnosed with ads and got so much energy out of tyrosine and nadh, that made me also think it’s got to do with neurotransmitters. I do have pots and I think also neurally mediated hypotension.
  28. Y

    Help please ! The sicker I get the more stimulus /energy I get from various supplements, and the faster I crash from that energy.

    thanks. good to know i’m not the only one. i guess you also don’t know which system especially is deregulated to allow this hyperstimulation in the first place and what other that can’t seem to handle even a bit of energy?
  29. Y

    Help please ! The sicker I get the more stimulus /energy I get from various supplements, and the faster I crash from that energy.

    it pretty much started out that way for me. when I got from mild to moderate I suddenly couldn't drink any coffee any more, made me absolutely hyper. had to pop in two tranquilizers after and nevertheless crashed badly and never fully recovered. Now its like a bit higher doses of Vita B, C or D...
  30. Y

    ME/CFS patient goes into remission after taking "elixir of youth" GDF11

    great to hear you are feeling so much better! what’s your source for LL-31? Thanks