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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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Search results

  1. helen1

    Oxaloacetate. I am joining a study. Maybe you want to try

    @Hip I’m shocked, truly shocked lol. I think I’ve figured it out though which is that low oxaloacetate is indeed needed for ketosis, so taking supplementary oxaloacetate is counterproductive to ketosis.
  2. helen1

    Oxaloacetate. I am joining a study. Maybe you want to try

    @Learner1 @Hip I realize this is an old thread but I have a question for anyone interested in or still trying oxaloacetate. From what I’ve read and not really understood, it appears that oxaloacetate inhibits ketosis. I’ve been doing both a keto diet (20g carbs a day) and oxaloacetate...
  3. helen1

    How to manage transfers to the hospital for severe ME/CFS patient?

    @MartinK I wonder if @Janet Dafoe could give you some advice. She’s had to get her severely ill son to and from the hospital several times. Pretty sure benzos were helpful in his case.
  4. helen1

    Hyperthyroidism? severe insomnia

    @Mary The caps I have are 855 mg and I took less than a cap at a time, likely 500mg. I’d watch your symptoms carefully as when I got tested again my TSH was back up to 4.5. So things can reverse pretty quickly.
  5. helen1

    Hyperthyroidism? severe insomnia

    @Mary I had a similar experience a year ago, during a very stressful time, when I went from years of hypothyroid (taking T3 & T4 kept me good for thyroid at least) into hyperthyroid with exactly the same symptoms as you. The strangest part was being so hungry, eating a lot and losing weight...
  6. helen1

    B12 causing restlessness, anhedonia and sexual dysfunction

    @sofa Sorry about the confusion. I saw @Caledonia’s answer after reposting so didn’t clarify our different ideas. Both our theories about what might be happening to you are quite possible. Caledonia thinks you’ve increased methylation too quickly. The increased methylation can be slowed back...
  7. helen1

    B12 causing restlessness, anhedonia and sexual dysfunction

    @sofa I think you’ve misunderstood me. Cyanocobalin causes B12 deficiency in some people (see my post above) so what you may be experiencing are B12 deficiency symptoms. Insomnia and anxiety are definitely two of the many B12 deficiency symptoms. You might want to stop taking the cyanoB12 and...
  8. helen1

    B12 causing restlessness, anhedonia and sexual dysfunction

    @sofa Cyanocobalamin can cause problems because it requires quite a few enzymes to convert it to the form your cells can use (methylcobalamin or adenosylcobalamin). Some people don’t have enough of those enzymes so the cyanob12 sits on the b12 receptors, blocking any methylb12 or adenosylb12...
  9. helen1

    B12 causing restlessness, anhedonia and sexual dysfunction

    @sofa Which type of B12 are you taking? There are 4 types and the most commonly used in supplements, cyanocobalamin, is the one that can cause problems like you describe. Another possibility is that you’re starting methylation quickly and so depleting potassium especially. That seems less...
  10. helen1

    Can’t get Valcyte, other options for EBV, HHV6

    @lara mccabe I think @heapsreal has taken cycloferon to good effect and maybe still does, for cmv I think. I’m sure he can tell you more…
  11. helen1

    Why are B12 supplements making my symptoms so much worse?

    @sofa I don’t now how long the cyano will hang around but its definitely not permanent. I don’t know why you would feel worse every day. I bet @Freddd would know though.
  12. helen1

    Why are B12 supplements making my symptoms so much worse?

    @sofa The form of B12 you took (cyanocobalamin) is problematic for those of us who can’t convert it to the active useable forms (methylcobalamin & adenosylcobalamin). The problem with cyanoB12 is that it attaches to B12 receptors thereby blocking the useable forms from accessing them. When you...
  13. helen1

    Third COVID booster reaction/symptoms

    @gm286 Definitely could be blood clotting as this article discusses, with pictures of two very serious cases: https://www.cbc.ca/news/canada/british-columbia/vitt-vaccine-exemption-1.6286928
  14. helen1

    Orthostatic intolerance: POTS, hypotension and more. Webinar with professor Peter Rowe 19.10.21

    @lenora You can buy huperzine A at health stores or online. It’s a supplement not a prescription.
  15. helen1

    True confessions - What didn't work in the long run

    @cporro Be aware that alcohol depletes thiamine B1.
  16. helen1

    Inosine and Oxymatrin

    @Shanti1 I’ve been taking oxymatrine for 3 weeks, low dose. I haven’t noticed much, but maybe I feel slightly worse so I don’t know if its worth continuing.
  17. helen1

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    @Avenger They’re in California: https://www.customprobiotics.com/
  18. helen1

    B complex and depression/suppressed sex drive

    Supplemental B2 that is not used by the body is excreted in bright neon yellow urine. That’s how you know you’re taking enough, or more than enough. If your urine is not that colour, your body has used all the supplemental B2 and you likely need to take more. All kinds of things can use up...
  19. helen1

    B complex and depression/suppressed sex drive

    @godlovesatrier High serum B12 is usually an indication B12 isn’t getting into the cells but is instead circulating in blood, and is termed paradoxical B12 deficiency. Also, my guess is you need more B2 as one of its functions is processing all the other B vitamins. If you’re taking a lot of...
  20. helen1

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    @Avenger Custom Probiotics offers a non D lactate blend, or can customize with any blend of species you request. They ship all over the world. I use them, I think they’re a good company. (That sounds like a commercial for them but I have no involvement lol) https://www.customprobiotics.com/
  21. helen1

    Tramadol and ssnri antidepressants

    @TinaYesen Actually my variant of concern is CYP 3A4 but the CYP 2D6 is the one that processes tramadol. You can find out about them by getting your genes analysed by one of the commercial companies like 23and me or ancestry.com & then downloading your raw data elsewhere. You’d have the same...
  22. helen1

    Tramadol and ssnri antidepressants

    @TinaYesen I have the same experience with the opioid buprenorphine which is that a tiny dose (unbelievably tiny) allows me to function well for 8-10 hrs. I don’t have PEM from doing more than usual though. I’m quite sure it’s due to the super fast variant of the liver enzyme that metabolizes...
  23. helen1

    What’s next?

    Amisulpride has a very similar effect to Abilify. Several of us take it instead of Abilify, including I think @Hip who takes it to good effect. Maybe he can tell you more about it. Wishing you hope and healing @Martin aka paused||M.E.
  24. helen1

    Immediate PEM (without delay)?

    For me, PEM is not delayed. It happens during or right after over-exertion.
  25. helen1

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    I wonder what Ron Davis has found re chronic bacterial infections. @Janet Dafoe
  26. helen1

    Opioids operate as pro-inflammatory cytokines, resulting in neuroinflammation in the CNS

    @bensmith I’ve explored it: same outcome for me. Some people can use it for a longer time before the consequences happen.
  27. helen1

    How to understand Freddd

    @seamyb I hadn’t seen that before & have read freddds stuff several times. My guess is he was showing the bad consequences of the wrong order of the nutrients. Those are definitely the wrong order. He always has carnitine added at the end.
  28. helen1

    Second study might confirm neuroinflammation in ME subcortical brain

    @Stretched Nitrous oxide is well known to cause B12 deficiency. There are many symptoms of this, including poor sleep (B12 is needed to synthesize melatonin) and poor cognition. I’ve not heard that marijuana can decrease B12 though.
  29. helen1

    B2 I love you!

    Hi @Freddd Do you know of anyone else’s experience successfully using lithium orotate & b12? Just wondering if you think this is a common deficiency (Li) or not. Also, what are some of the problems you’ve noticed when using Li orotate?