• 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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  1. datura

    SOD2 mutation & persistent copper issues

    Anyone have advice on how to manage a SOD2 mutation? I’ve had a serum copper deficiency for years, but high unbound copper (due to lack of ceruloplasmin). My serum zinc is low but RBC zinc is normal. I supplement with zinc, but it worries me because of my pre-existing copper deficiency. I’ve...
  2. datura

    Is it all histamine ?

    The problem isn’t histamine itself, it’s having too much histamine. Either from consuming too much (i.e., scombroid poisoning), or not having sufficient DAO to break it down. Think of having a histamine bucket/threshold. When it “overflows”, you get unpleasant symptoms.
  3. datura

    Is it all histamine ?

    Incorporate mast cell stabilizing herbs and foods into your diet. Teas are good. I do well with nettle and tulsi (holy basil) tea. Alison Vickery has some excellent information on her website. Quercetin didn’t work for me personally. I take vitamin C.
  4. datura

    Food sensitivities raises after antimicrobials/antivirus

    Yes, cold water on your face can be good as well if you are in a hurry. Important to support your vagus nerve before you eat especially. Also take some deep breaths from your belly before you eat, and don’t do anything emotionally stimulating while you eat (such as, don’t read the news). Ever...
  5. datura

    Food sensitivities raises after antimicrobials/antivirus

    I would be cautious with the potent biofilm disruptors, especially if you’re experimenting. Just a tip that NAC can worsen histamine issues if you are sensitive to that kind of thing. I did an herbal microbial phase in the Spring, and it seemed to help. A month or so after stopping, my GI...
  6. datura

    LDN Naltrexone side effects

    I take LDN and the only side effects I had and continue to have are vivid dreams/increased time in REM sleep, and slight blunting of anxiety (and as a result more fatigue), BUT I can’t be sure the latter side effect is 100% from the LDN. Definitely the vivid dreams, though. I take 4.5 mg, which...
  7. datura

    Glutamine possibly wreaking havoc and dealing with leaky gut

    It’s NOT a good idea to megadose Vitamin A. It’s a fat soluble vitamin and is dangerous to get too much of from supplements or animal sources.
  8. datura

    How to fix D-lactic acidosis?

    Do you include mast cell stabilizing foods in your diet? Have you tried Cromolyn? Did your naturopathic doctor ever suggest gut dysbiosis as a contributing factor to MCAS? Maybe try a probiotic higher in bifidobacterium. Also if you drink kombucha that could be making the acidosis symptoms worse.
  9. datura

    LDN an immunosuppressant?

    Update: I don’t think the LDN is playing a role. The infection reactivated because of a glucocorticoid injection. I’m prone to immunosuppression, and it tipped it over the edge. But I’m still taking the LDN and the infection has *mostly* resolved.
  10. datura

    LDN an immunosuppressant?

    I had been taking low dose naltrexone and seeing benefits in my chronic pain. Before I started taking it I was on an immunosuppressant (cortisone) that caused a latent HPV infection to come back aggressively (the cortisone is out of my system now). I was advised by my Gyn to stop taking the...
  11. datura

    LDN weird side effects

    Thanks everyone. I think the excessive sleeping was actually me making up for a sleep deficit. However, I'm still confused about whether LDN is an immunosuppressant or stimulant? It doesn't make sense that it's used for both autoimmune disease and HIV (overactive vs underactive immune system)...
  12. datura

    LDN weird side effects

    Hey, thanks for your reply. I take them in capsules and don't compound them myself so I can't really split the dose. Do you think the side effects will abate in a few days? Also before I started the LDN my immune system has been really compromised and I'm having trouble fighting off a couple...
  13. datura

    LDN weird side effects

    I started LDN two nights ago (1.5 mg) and thought I'd be having insomnia based on what other people have reported, but I've been sleeping 13+ hours both nights, waking up with water retention/puffy face, exhaustion, and constipation (constipation is rare for me). If I didn't know the difference...
  14. datura

    Bad reaction to Apple Cider Vinegar -- histamine or die-off?

    ACV triggered a histamine reaction for me. It's sometimes listed on the 'tolerable' list of low-histamine diets, but personally I can't tolerate any kind of vinegar.
  15. datura

    anyone try celery juice for POTS?

    Thanks all, I was mainly just looking for anecdotal experiences (there aren't any studies on celery & POTS), I should have put that in my original post. I thought it might help increase electrolyte/mineral status (being high in sodium) but not sure how strong the diuretic effect is.
  16. datura

    anyone try celery juice for POTS?

    I'm thinking I might juice celery and drink it before a meal to help POTS symptoms. I was reading it can also help with dysbiosis because it increases stomach HCl. Have you tried it, and what were your results?
  17. datura

    tilt table test concerns

    Thanks @Sushi. I'm definitely going to bring a water bottle with electrolyte tablets, and protein bars. I don't do well without regular fluids. I've read from different sources to stop eating and drinking 4 hours before the test, but mine is a couple hours - does it make a difference? I don't...
  18. datura

    tilt table test concerns

    @alkt -- thanks, that's a good idea! @LINE -- What are your references? I don't doubt that adrenal maladaptation is a contributor, but I don't think it's accurate to say that that POTS is "merely a sign of [it]". I'm aware of the possibility that in some cases, POTS stems from mast cell...
  19. datura

    tilt table test concerns

    I'm having a tilt table test to figure out if I have POTS soon. My period is super irregular so I don't have them every month, but I'm noticing signs that I might be in the pre-menstrual / luteal phase and that a period is impending. I'm concerned that the hormonal changes (whether I'm in the...
  20. datura

    leaky gut / herbal SIBO treatment experiment

    Thanks @ljimbo423!
  21. datura

    leaky gut / herbal SIBO treatment experiment

    @ljimbo423 -- I've been searching around trying to find antimicrobial herbs that would help clear SIBO, but I don't want to take anything too strong if I can help it. After treating for a year, do you find you have to take antimicrobial herbs as maintenance? Or is it just necessary to focus on...
  22. datura

    leaky gut / herbal SIBO treatment experiment

    @ljimbo423 -- glad you have been having success w/ herbs! The turmeric I take is high curcumin, I think. Good to know about the carbs -- my carb sources are yams, quinoa, oatmeal, berries, + applesauce. I was iffy on the yams but I don't eat huge servings of them and I thought they would be...
  23. datura

    leaky gut / herbal SIBO treatment experiment

    I'm trying to heal leaky gut and potentially SIBO which I think are at the root of my mast cell issues. I've developed a lot of food sensitivities in the last several months. For the last couple months, I've been 'working' on leaky gut -- - Replacing NSAIDS w/ turmeric - Eliminating wheat...
  24. datura

    can you have orthostatic hypotension and POTS at the same time?

    Sorry if this has been asked before, I'm having trouble finding an answer. If you have a diagnosis of orthostatic hypotension, is it possible to also have POTS? I'm reading that with POTS, you get tachycardia upon standing without the drop in blood pressure. I have orthostatic hypotension but...
  25. datura

    copper and ceruloplasmin deficiency

    @Nine lives -- I haven't used MitoSynergy, but I had been supplementing ionic copper at the recommendation of a provider. As you supplemented copper, did your ceruloplasmin levels raise? How was your unbound/free copper? @nanonug -- I was supplementing with low-dose zinc, off and on and not...
  26. datura

    copper and ceruloplasmin deficiency

    @nanonug - thanks for the recommendation! Some new labs... RBC zinc normal, mid-range (serum zinc on low end). RBC copper and serum copper very bottom of range, plasma copper below range. I expected the RBC zinc to be low based on low-ish serum zinc. I do wonder what RBC iron would be, since it...
  27. datura

    Love and hate for vitamin B6

    Just an anecdote -- in individuals without pyroluria, taking unnecessary B6 supplements can be dangerous. I would encourage anyone who suspects a deficiency to get a serum B6 test first. Symptoms of deficiency are similar to those of toxicity. The United States' upper tolerable limit is actually...
  28. datura

    Lactic acid buildup?

    Have you tried self-massage? To increase circulation, also helps calm the nervous system / helps with desensitization. Also for me it helps to avoid foods or drinks with lactic acid due to the fermentation process, such as kombucha or pickled vegetables.
  29. datura

    copper and ceruloplasmin deficiency

    @Eastman - I almost totally forgot about the thiamine! At initial testing, it was 56 (normal range 67 to 200), then I supplemented heavily (mostly thiamine HCl but also a little of benfotiamine) and it nearly doubled to 108. After that I greatly reduced the supplementation and the thiamine...
  30. datura

    copper and ceruloplasmin deficiency

    @nanonug - Yes the macrocytosis has resolved as of the last couple months, which is strange because serum levels have gone down. I'm seeing a new ND, next looking into RBC copper. Also ordered a 24-hour urine test for copper and zinc. Before the macrocytosis was linked to copper deficiency, I...