• 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. sb4

    Ketosis and constantly activated Sympathetic Nervous System

    Yeah @SlamDancin I tried it way back when. I think the problem with POTS is that it's such a vague diagnosis and patients vary significantly in there symptomology, root causes, and treatments. Kind of like CFS/ME I suppose. It overstimulated me. I was actually on Mirtazapine for a while and...
  2. sb4

    Ketosis and constantly activated Sympathetic Nervous System

    I've been thinking about this a bit more. Why some of us with POTS have gain weight easy and have trouble losing it. With POTS you have poor circulation from whatever cause. To compensate the body might increase sympathetic activation / stress hormones to cause vasoconstriction to help blood...
  3. sb4

    Ketosis and constantly activated Sympathetic Nervous System

    Yeah I did a few years back. I remember them giving me gut issues. Perhaps those problems have been ironed out now as the supplements were relatively new back then. One problem might be the BHB competing with BG leading to higher BG when taking them though I haven't looked into this. I think...
  4. sb4

    Ketosis and constantly activated Sympathetic Nervous System

    @Mary I think you're right regarding the BCAAs being to low for you on ketosis as I know you get a big benefit from them. Interestingly I have been following a school of thought that BCAA contribute to obesity and lower metabolism. When taking BCAAs I only noticed insomnia, no real boost in...
  5. sb4

    Ketosis and constantly activated Sympathetic Nervous System

    I have POTS which results in vasoconstriction caused by my sympathetic nervous system being jacked up all the time. I think this has been giving me problems when trying to enter ketosis. When I get in ketosis I notice my POTS is worse, particularly mornings and after meals. What I think may be...
  6. sb4

    Hawthorn berries helping a LOT with sleep

    @Mary is Hawthorn berry still working well for you?
    • sb4
    • Post #32
    • Forum: Sleep
  7. sb4

    Gastroparesis POTS CFS And Mirtazapine

    I have tried DHEA in the past without much success. I am tempted to try prednisone at some point as I already have some for my cat. He has allergy problems. I might try some of that s-acetyl l-glutathione. You seem to have gotten real unlucky with covid. I have only had one vaccine, and only...
  8. sb4

    Gastroparesis POTS CFS And Mirtazapine

    I think nicotine lowers BP or something cause I remember a few times were I overdid it I felt poisoned, I had to lay down flat, was super dizzy, and felt really off. Yeah I only every did 7.5mg of Mirtazipine (half a tablet). Think it would have been much harder to come off had I taken the...
  9. sb4

    Gastroparesis POTS CFS And Mirtazapine

    @godlovesatrier I quit mirtazipine around 2 years ago. It stiumulates the sympathetic nervous system so contributed to the tired but wired feeling, gave me constant nightmares, and masked my depression. Of course the sympathetic activation helped with POTS but it wasn't worth it for me in the...
  10. sb4

    Thiamine HCL powder - taste?

    If I remember right it tastes like crap plus its acidic. You need to swig it down with water/ juice.
  11. sb4

    Clinical Trial: IV Albumin for Severe POTS

    I see. I was recently denied entry to a telegram group for not having ME. I don't really see the benefit to such a rule but I'm sure there is one.
  12. sb4

    Clinical Trial: IV Albumin for Severe POTS

    I didn't even know that was a rule. I've been posting here for year and I don't have PEM / ME.
  13. sb4

    ideal computer setup in bed

    I see. looks like a decent setup. I find it hard to sit up right unless my knees are lower than my hips. So nothing really is working well so far.
  14. sb4

    ideal computer setup in bed

    @Dysfunkion Thanks for posting that pic for me. I'm still having trouble visualising it though. You sit upright without backrest? Or is the backrest obfuscated by the pillow/blanket? I can sit without backrest for hours if my posture is right but eventually I feel the need for one.
  15. sb4

    Unfolded Protein Response and A Possible Treatment for CFS

    @datadragon Are you taking a zinc supplement and if so have you noticed any benefits?
  16. sb4

    ideal computer setup in bed

    @Dysfunkion I am forever trying to find the pc setup that doesn't cause me back / shoulder / arm pain. Could you post a link or just a picture to that bar chair setup?
  17. sb4

    Herb that blocks cytokine production

    I think @godlovesatrier might have had success with it.
  18. sb4

    Creating a an AI based project to provide answers from this forum

    @forestglip I really like this idea. Perhaps adding some functionality that identifies the treament and counts how many other posts have benefit from the same treatment. I was thinking of trying my hand at something like this myself though i'm not sure skills yet. Is there any way I could help...
  19. sb4

    Low stomach acid links to ejaculation (Zinc?)

    I didn't unfortunately. I couldn't get my initial experience to repeat. I abstained for around a month again soon after but appetite was still poor. Overall when I don't ejaculate I feel better, more energy, etc but the effect is subtle.
  20. sb4

    Adverse effect of quitting N Acetyl Cysteine on hydration and mucus

    I did a very small amount of Testosterone Gel for a month and it caused my feet to swell up. My POTS symptoms were a little better if I remember correctly but not massively so.
  21. sb4

    Simmaron’s ME/CFS Trial of Rapamycin – a Mitochondrial Enhancer – to Begin Soon

    I have also been experimenting with low BCAA thanks to r/saturatedfat and Brad Marshal. @Murph Have you add much success from it. It's still relatively early days for me but I have some sense its increasing metabolism.
  22. sb4

    Potassium Citrate gives stable positive effects

    @Murph Some have found benefit from phosphate and B1 in relation to a sort of Pseudo refeeding syndrome. @Mary could probably tell you more. I didn't notice anything from phosphate though.
  23. sb4

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    Your stats look quite a lot like mine. Where you low carb at the time? I don't know much about the theory but your BHB/AcAc is in masterjohns normal range. Your Lactate to Pyruvate is low which he treats with high dose Thiamine. I have had some limited success with thiamine but it's by no...
  24. sb4

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    From Masterjohns video the urine ratios are: Urine Lactate/Pyruvate: normal range 5-10 [mine 4] Urine BHB/AcAc: normal range 0.2-6 [mine 0.75] These values are for in light ketosis so will vary a bit depending on diet.
  25. sb4

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    @godlovesatrier I don't know what a 16s is. What is it?
  26. sb4

    Increasing mitochondrial energy production using 4 labtests, by Chris Masterjohn - I got out of ME and resolved low ATP

    I had a great planes oganic acids urine test done years ago. Think I was low carb / possibly keto at the time so that no doubt influences the results. 3-Hydroxybutyric = 277 (ref < 1.9) [High] Acetoacetic = 370 (ref <10) [High] BHB/AcAc = 0.75 Lactic = 8 (ref 0.74-19) Pyruvic = 2 (ref...
  27. sb4

    Do POTS sufferers have elevated blood glucose levels because of low volume ?

    @Bansaw That vid shows research that suggests lean POTS patients act like diabetics post meal. I think they conclude that GIP is higher than it should be or something. The way I think of it is first of all our bodies ANS is messed up leading to more sympathetic activation which causes less...
  28. sb4

    Felt like hole in gut prior to onset

    My onset began with tonsilitis and a stomach ulcer (doudenal?). I used to get tonsilitis all the time but this time I took double the max dose of NSAIDs on an empty stomach which caused the ulcer. As a result of this, for the next 4-5 years I went down the path of thinking that all my symptoms...
  29. sb4

    Potassium Citrate gives stable positive effects

    Do you have an accompanying aversion to salt? I have POTS, and most crave salt with this illness yet I have the opposite were salty foods taste disgusting. It only really triggered when my illness worsened. Have always wondered if it were to do with electrolyte imbalances or something.
  30. sb4

    POLL: Do you sweat a lot from a 20 minute walk? Linked to overactive sympathetic nerves, and in turn, reduced Th1 antiviral immune responses

    I seem to have the opposite problem where I barely sweat at all even when baking hot in the sun. I just feel really shitty and when its really hot, my skin gets goose bumps just like what happens when you are cold, I'm pretty sure this is due to sympathetic activation, but still no sweating...