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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. dannybex

    My son has been sleeping 14 to 16 hrs a day

    Try to remember that just because he had a negative reaction to something in the past, doesn't mean it will happen in the future. An overnight trip is a lot different than sitting outside for 15 minutes. Or less. Start slow and pace yourselves. Also be aware that there may be dips and valleys...
  2. dannybex

    My son has been sleeping 14 to 16 hrs a day

    If he has sleep apnea, treating it could be very beneficial, mild or not. If that doctor was mine, I'd ask why wait until it gets severe? Weird... I'm one that doesn't do well on supplementary melatonin at all. It constricts some blood vessels and dilates others, but for me anyway, anything...
  3. dannybex

    My son has been sleeping 14 to 16 hrs a day

    Okay, this will sound weird, but in general it's unusual for someone with ME/CFS to be able to sleep so long. In fact one of the definitions of the condition is 'unrefreshing sleep'. This of course can take many forms, but it often means one may be able to sleep 5-7 hours or so per night, but...
  4. dannybex

    Thoughts treatments / cell danger response

    Mainly, the B12oils protocol (B12, B2, plus the trace minerals selenium, iodine and molybdenum), plus I added methylfolate and d-ribose. I also add some krebs cycle nutrients from time to time (B1, B3, biotin) but haven't had that tested in years. There are several threads here on the B12oils...
  5. dannybex

    Thoughts treatments / cell danger response

    Not doing good at all right now (due not to ME/CFS, but untreated anemia that I mistakenly attributed to ME/CFS and a lot of extra stressors, one after the other, in 2023). In hindsight, the anemia probably started around June, but I was also dealing with an ulcer/wound on my foot from venous...
  6. dannybex

    Thoughts treatments / cell danger response

    Because I experienced his 'A.R.T' treatments personally. Years ago a friend volunteered to help pay for my medical care as she was so frustrated that my family wouldn't "step up" as she said. We chose a doc who was second in command -- had learned from him, and I believe still practices...
  7. dannybex

    Active B12 Protocol Basics

    Not sure about histamine, but moly-b is required for SUOX to function properly.
  8. dannybex

    Benfotiamine - a double edged sword due to sulfur sensitivity

    Yes, that's true. That may be a partial option to increase sulfate, but that still wouldn't address a sulfur, sulfite problem. It might help increase sulfate levels though, which is good. Still, molybdenum is an absolutely essential trace element that is part of four different enzymes. Sulfite...
  9. dannybex

    Benfotiamine - a double edged sword due to sulfur sensitivity

    I'd try a different form. I couldn't tolerate the "Kal" brand as it was chelated with 4-5 amino acids. But the Seeking Health and Kirkman (and possibly others) are chelated to glycinate, and are fine.
  10. dannybex

    Benfotiamine - a double edged sword due to sulfur sensitivity

    @nicola is correct. One needs molybdenum to convert sulfur to sulfate, which is essential for sulfation, for processing salicylates/phenols, etc. Tagging @racerbiker39 as well. Sulfate is a good thing.
  11. dannybex

    Intolerance to antidepressants

    It's the hypothalamus extract that helps me. It still does, but I'm having other issues right now that inhibit my sleep.
  12. dannybex

    Thoughts treatments / cell danger response

    Scott Forsgren is IMO, a con artist. He does nothing but promote (literally) dozens of different naturopaths with their dozens of 'essential' treatments for x-y-z diseases or conditions. I've been around long enough so that I've seen when he's said THIS cured my lymes, then THIS, did, and then...
  13. dannybex

    Just a few sprays of a home-made Dr Brewer antifungal nasal spray for nasal mold triggered significant PEM

    @seamyb The exact opposite is true. So it's possible that you may indeed have had a candida or some sort of fungal infection. https://www.sciencedirect.com/science/article/pii/S1081120621008590
  14. dannybex

    Unfolded Protein Response and A Possible Treatment for CFS

    IMO, Klinghardt is a con artist of the highest order. And a pricey one at that... And kryptopyrroluria a.k.a. pyroluria, is not a real disease. https://drbillsukala.com/pyroluria-disease-myth
  15. dannybex

    Very Severe Case - Please Help

    You might consider glutamine. It helps not only with mast cell and histamine issues, but also helps with constipation, maintains immune function, and especially helps to stabilize/repair intestinal permeability, which is possibly/probably causing the other issues, or at least contributing to them.
  16. dannybex

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    In HIGH amounts, yes. In normal amounts, it's not an issue. Only 2-3% – is converted to fat via de novo lipogenesis. From this review: "At present, short-term intervention studies however suggest that a high-fructose intake consisting of soft drinks, sweetened juices, or bakery products can...
  17. dannybex

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    Correct me if I'm wrong, but it's my understanding you had post-finasteride syndrome, not ME/CFS?
  18. dannybex

    Transdermal B12 oils

    Those on a vegan diet can be very low in B12, and even if lab values show 'normal' levels, one can still be functionally deficient, according to Dr. Gregory Russell-Jones and others. https://pubmed.ncbi.nlm.nih.gov/24852503/
  19. dannybex

    Nutreval Interpretation Guide

    Well, I did, then after I was doing better...I took it for granted, backed off on the supplements, and slowly got a lot worse again, so I'm slowly starting over. But I recovered probably by about 50%, and mainly followed the GRJ protocol (B12oils, with an emphasis on B2, iodine, molybdenum and...
  20. dannybex

    Medicine is plagued by untrustworthy clinical trials. How many studies are faked or flawed?

    You're too kind @Judee . I think my brain was working better back then! But overall, I think it's always a good idea to look for human trials/studies, and also look to see if their conclusions have been backed up by other studies. And personally, I look wherever I can find studies on mito...
  21. dannybex

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    And their definition of scientific, is strictly pharmaceutical-based treatments. They dismiss any science that shows a benefit from things like methylcobalamin or any vitamin/mineral that is proven to help say, mitochondrial function -- just as one example. Don't get me wrong, there are very...
  22. dannybex

    Low potassium symptoms?

    If you're feeling better -- your symptoms 'have all disappeared' -- personally I wouldn't add anything. Why go down the supplement rabbit hole?
  23. dannybex

    If glutathione supplements are so bad for B12 deficiency cases, why does Liposomal Glutathione help me so much momentarily?

    @HurrySaveMe, Glutathione isn't bad for those with B12 deficiency or sufficiency. It helps B12 to work better, to become metabolically active. I had one of my best remissions back in 2004 when a doc prescribed methyl-B12 injections along with nebulized glutathione. I think you're probably...
  24. dannybex

    B2 I love you!

    Well, it does absolutely nothing for my BP, but apparently it can lower it in some folks. Perhaps you don't need to supplement and are getting enough in your diet. https://pubmed.ncbi.nlm.nih.gov/19952781/
  25. dannybex

    My Full Recovery By TCM + TCM issues Q&A

    @Guwop2, If you click on anyone's name, you can see when they last posted. @wintersky hasn't been here since 2017. Hopefully someone else can answer your questions.
  26. dannybex

    Is there a good B complex supplement that helps, esp. with neurotransmitters ?

    It means that a deficiency of methionine can cause degeneration of the spinal cord, just like a deficiency of B12 or folate.
  27. dannybex

    Active B12 Protocol Basics

    The studies weren't using regular forms of potassium. Also, like this one, the reason the 'slow-potassium' inhibited B12 -- just slightly -- was because it interfered with it in the small intestine. Not sublingually.
  28. dannybex

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    @Jo86 You can get both potassium chloride or potassium bicarbonate in bulk (small bags), so you can measure out any amount you want, or Life Extension makes a potassium bicarbonate supplement.
  29. dannybex

    Active B12 Protocol Basics

    First of all, we have no idea how much potassium was used in the studies, and we have no details on what this blogger's definition of 'long-term' is -- both of which are critical to know. Also, experiments often use insanely huge amounts (typically in rats, not humans) to cause some sort of...
  30. dannybex

    Active B12 Protocol Basics

    Here's a link to the potassium supplement on Amazon: https://www.amazon.com/gp/product/B005CD3ZGG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 The body is very wise. It will balance potassium and sodium (etc) provided you give it enough to work with. I would strongly urge you to try not to...