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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. Leon

    What enzymes to use for biofilms?

    Interesting thread. Just to chime in on the Candex bandwagon, I've been taking it for two days (1 cap). I also use Pure Encapsulations digestive enzymes with meals, and am fairly confident there is a correlation between die-off and taking these, now that I'm tackling the biofilms with Candex. I...
  2. Leon

    Powerful start to Freddd protocol! Any thoughts on moving forward

    @Johnmac - it's a good point. I did at the beginning notice malaise and irritability, etc., from the carnitine, but it subsided when I reduced the dose. Interestingly, I found yesterday that my "detox"-like symptoms abated when I took 50mg of mfolate with the B12. They came back after about 4-5...
  3. Leon

    Powerful start to Freddd protocol! Any thoughts on moving forward

    @Valentijn - I was curious how you knew MB12 wasn't working for you? I'm pushing on but I've had a headache for two days and generally feel malaise. I wake up feeling a bit 'drunk'. It's not clear whether this is detox or too many methyl donors. But I don't feel at all stimulated, and I have no...
  4. Leon

    Powerful start to Freddd protocol! Any thoughts on moving forward

    Thanks guys. @ahmo - this is really interesting, and helpful, thank you. After the 200mcg mfolate, I had 1200mcg of MB12 under my lips and the symptoms went away. I've been fine without more mfolate all day. I've gone back to my methylation panel results. My mfolate is in range, but very low...
  5. Leon

    Powerful start to Freddd protocol! Any thoughts on moving forward

    Thanks @Gondwanaland. Today, I upped my methylfolate first dose to 200mcg, and the runny nose came on again within 10-15mins, and I also felt dizzy, headachey and itchy. I hadn't even taken the MB12. Might it be low MB12 that is my problem rather than mfolate? When I tested my mfolate was low...
  6. Leon

    Powerful start to Freddd protocol! Any thoughts on moving forward

    Hi, For two weeks, I've been taking 800mcg of AdCb and 250mg L-carntinine and 250mg ALCAT. I experienced a bit of need for more K+ and take 200mg. Today, I started 600mcg of MCb with 100mcg of methylfolate an hour before. While the MCb was dissolving, I started to experience a runny nose...
  7. Leon

    Sublingual B12 dissolving too fast?

    @Johnmac: it sounds to me as if you might be over-methylating at this stage in your recovery. Doubling the dose in one day is rather extreme. It's not supposed to be too uncomfortable. You only need to reconsider eating veggies if (a) you have SNPs that indicate you may struggle with high...
  8. Leon

    Sublingual B12 dissolving too fast?

    @ahmo: Thanks for this. That's a remarkably strong reaction to cutting out folinic. I wonder if you've done any genetic testing? I have in mind the SHMT gene. There's also the MTHFRS gene, but no-one really knows which one is relevant to folinic acid intolerance. @PeterPositive: Like you, I'm...
  9. Leon

    Sublingual B12 dissolving too fast?

    @Freddd: I noticed this reply from this year today, and was wondering about the status of your earlier replies that you were eating chard and the like from your garden. Have you cut out veggie folinic acid, too? My folinic acid is high, and my methylfolate is low. This is owing to genetic...
  10. Leon

    Race horse-esque urination

    @Gondwanaland: thank you! You're a star. Maybe this is all a sign that I am starting to heal! Leon
  11. Leon

    Race horse-esque urination

    @Gondwanaland: I'm finding today that I have very small and clear amounts of diarrhea now and again. I wonder if that's magnesium. Thing is: I don't understand why this would happen, unless the mg malate I started taking a few days ago has tipped me over the edge. I know people who take 20g of...
  12. Leon

    Has anyone tried EMDR for PTSD issues?

    Oh ;). It's really surprising that you've had someone cry. A psychotherapist is supposed to be in therapy for at least once per week during training, and while they have training patients, because therapy does bring up issues for the therapist that they should be working through. I can only...
  13. Leon

    Has anyone tried EMDR for PTSD issues?

    Thanks, but this is already on pg. 2
  14. Leon

    How do you decide when it's time to increase methylB12,methylfolate

    @minkeygirl: I think you really might have helped me out here. I haven't been able to stop urinating for the past few days, 8-days into methylation (hB12/methylfolate). My muscles are always twitching, and seem to improve with salt. I did increase my potassium to 300 measly-mg per day in...
  15. Leon

    Has anyone tried EMDR for PTSD issues?

    I agree with people's points about the need for "self-reflexivity" and the need for a therapist with experience. A therapist really shouldn't start crying during a session!! My therapist, with whom I was with for 4-years, got to the stage where she was happy to teach me how to self-administer...
  16. Leon

    Race horse-esque urination

    Thanks for much for the thoughts. I think I hopefully combat the chances of gout and acidic urine by taking sodium ascorbate. But, re: B12, it seems from my reading of the helpful posts is that increased urine output can be both a consequence of low mB12 and not having the ratio of...
  17. Leon

    What's happened to me: Paradoxical folate deficiency?

    Thanks for comin I've been taking 750-800mg of mg citrate for some months. I introduced an additional 200mg of mg malate about 4 days ago. I guess the addition did coincide with increased urination. The diarrhoea, confusion, etc., didn't last long; it's more like flu and inflamation now with...
  18. Leon

    High Dosage methylfolate users

    Interesting tread, but, frankly, I have no idea what to do for better or worse. I'm COMT ++, and all methyl donors hit me hard, so I've introduced HyCbl for now, 500mcg in the morning with 100mcg MTHF. It's hit me hard, for whatever reason. I've not been able to stop peeing, and I've become...
  19. Leon

    Race horse-esque urination

    @helen1 - thanks for this. Just curious what ratio of methylfolate:B12 worked for you? Presumably, it was mb12? I'm taking hydroxo. I'm surprised I need more methylfolate on such a low dose of b12.
  20. Leon

    Low Folate Symptoms/Paradoxical Folate Deficiency

    I must admit that you're post about the COMT gene did get me reflecting that the notion of up- and down-regulation is potentially misleading when structural changes might not take place in the gene, aka Yasko and others.
  21. Leon

    Low Folate Symptoms/Paradoxical Folate Deficiency

    @Valentijn - I'm not one of her patients, but if you'd care to share, I'd be interested in knowing why in particular the hard line? By the by, I've read about the iron asociation elsewhere.
  22. Leon

    Race horse-esque urination

    I started methylfolate (100mcg) and hydroxocobalamin (500mcg) 6 days ago. I'm definitely more run down: sore throat, lethargic, headachey, etc. But since yesterday I've been urinating more - a lot more, especially today. About every 15 mins. Has anyone experienced this as part of their detox...
  23. Leon

    What's happened to me: Paradoxical folate deficiency?

    Thanks for these replies. I've settled down quite a bit. I think I had a huge wave of panic and anxiety, mixed with a sodden depression when I started the methylfolate that turned me slightly neurotic... One deniable thing I am finding now is that I'm urinating a lot more than before I started...
  24. Leon

    Interesting COMT Variations

    @Valentijn I hoped you could help clear up some confusion. I am homozygous for both SNP's, and assume therefore I'm working slowly (H62H) + 1/3 of slowly (V158M). But I don't understand how to interpret the V158M by reference to the H62H in real terms. How can we describe H62H as "too fast" in...
  25. Leon

    Low Folate Symptoms/Paradoxical Folate Deficiency

    For what it's worth, I'm SHMT +/- and MTHFR C677T, and my blood profile is: Folinic acid: 8.3 nmol/l (ref: 1.2-11.7 nmol/l) 5-MTHF: 16.4 nmol/l (ref: 8.4-72.6 nmol/l). Also, THF: 0.48 nmol/l (ref: 0.6-6.8 nmol/l) Amy Yasko says: "Based on the research of Dr. Patrick Stover, I’ve concluded...
  26. Leon

    What's happened to me: Paradoxical folate deficiency?

    Thanks for your replies. Just to clarify: I'm on hb12 rather than mb12, so I was concerned I wasn't getting any mb12 conversion for the MTHF. But the links were really helpful, because I do have IBS and it could be that I'm getting rid of bacteria due to an 'awakened' immune system. I also had...
  27. Leon

    What's happened to me: Paradoxical folate deficiency?

    Hi All, I'd really appreciate some help. After building in all the supports, including lithium, which was non-existent in my hair, my treatment isn't going well. I started hydroxocobalamin on Sunday, and have since increased that to 500mcg per day (a small amount, I know). I started adb12 at 1g...
  28. Leon

    CBS success!

    @whodathunkit - Glad you've had good results. You talk of other metals, which ones? ALA is good not only for mercury: it also removes arsenic and cadmium quite well, and may even chelate lead and more besides. It is also the only thing that crosses the blood brain barrier and enters cells. So...
  29. Leon

    CBS success!

    With respect, I'd be careful following verbatim the advice of your doctor. Provocation tests are not a very good idea to understand mercury levels. They mobilize large amounts of mercury, allowing it to cross the blood brain barrier. EDTA, moreover, is known to shunt mercury into the brain, but...
  30. Leon

    Adrenal treatment

    Some really helpful replies - thank you all so much. I've only just seen them all. I thought I would receive a notification, but since I didn't I hadn't checked the thread... I've ordered some Nutricology ACE, and some 10mg pregnenolone. My breathing is out of kilter at the moment, and I have...