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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. N

    How to Titrate to Get Out of Donut Hole Insufficiency

    Thanks for bringing this to my attention..I started some B1 this morning and felt immediately better, though that wore off in a few hours. I am curious. Is this caused because of taking the basic methylation supplements? Am I depleting anything else by taking extra B1? Thanks! You truly...
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    How to Titrate to Get Out of Donut Hole Insufficiency

    Thanks so much for sharing and being detailed for better understanding on my part. I think I may be way too low right now on my methylfolate and mb12. I'm going to try and up, hoping for further healing. I appreciate your kindness and the info. I'll keep trying. :)
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    How to Titrate to Get Out of Donut Hole Insufficiency

    Thank you so much for your helpful response @Freddd My digestion and absorption are both awful. I've had reflux for twenty years and multiple food allergies. I'm sure the gut is a disaster. I always have tried to eat healthy and correct it, but it didn't respond to a clean diet (since it...
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    How to Titrate to Get Out of Donut Hole Insufficiency

    @ahmo @Freddd I seem stuck Always in the donut hole. I have a feeling I can't truly heal this way. I will take 3-4000 Mcg of folate and go into major potassium deficiency (taking Rx 20meq several times daily) - so much I can't up the folate. I feel I'm circling the drain here. Any thoughts...
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    Simplified Methylation Protocol Revised as of Today

    Thank you @Eastman...I'll definitely try the taurine.
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    Simplified Methylation Protocol Revised as of Today

    @Eastman My potassium symptoms are muscle cramps and extreme bouts of weakness (can hardly move) after taking mb12 and mfolate. I also take b complex and cofactors. I mean I could hit the floor kind of weak. I think I am super b12/folate deficient and would like to build it up. I have...
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    Simplified Methylation Protocol Revised as of Today

    Hi there, Hoping someone can weigh in. I am very, very sick with brain and spine affected. I have started and restarted methylation protocols and always wind up with major potassium issues. Currently I'm taking 3-4000mcg of mb12 and approx 2000mcg of methylfolate trying to get going plus all...
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    Active B12 Protocol Basics

    Is Jarrow mb12 still good? I seem to have a better reaction to enzynatic therapy.
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    Active B12 Protocol Basics

    Thank you. I have spine and brain pain and nausea daily. I don't think I metabolize thins right. My illness has progressed and is very severe. Thank you. I have spine and brain pain and nausea daily. I don't think I metabolize things right. My illness has progressed and is very severe...
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    Active B12 Protocol Basics

    Having a major potassium deficiency. To be fair I've been super sick for about a year and am becoming more injured by the day. Spine and brain are affected, and walking is becoming harder. After a round of antibiotics my body has gone into a level of potassium deficiency on its own. Adding...
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    B-12 - The Hidden Story

    I'd like to know this also because I've felt worse starting this. I have symptoms of over methylation. Good question @outdamnspot
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    Active B12 Protocol Basics

    Thank you @ahmo ...you're encouraging! Can you tell me on footbath...do you put same dose as by mouth? What Aminos (brand) and minerals do you use? I've never done foot baths, but I'd love to give my gut a break. Thx so much!
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    Active B12 Protocol Basics

    Thank you for sharing this @caledonia It's helpful for sure. I know we are all so different and have different needs. I'm so sick and want to be well again. I'll keep trying to figure it out.
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    Active B12 Protocol Basics

    Hi there, I hope this is going to the right place. I am currently very sick with CFS with nerve damage all over. I recently restarted the Fredd protocol with 1000mcg mb12 1000mcg ab12 100mg l carnitine Started at 200mcg methylfolate ...now up to 1000 My issue is a constant need for potassium...
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    Methylation and spinal pain-numbness

    I've been on Fredd's protocol for a few months now. I have had spinal numbness and pain that alternate. It's not getting better. Is this mineral deficiency? I have GI issues majorly. I also wanted to up my mb12/methylfolate and cannot tolerate it being upped. Potassium needs are already...
  16. N

    Needing too much potassium

    I have needed lots of potassium every time I take methylation supps. At first, healing seemed to be happening. Now, I seem just caught in a vicious cycle. I will take supps and just need more potassium than I can even take...already have gut issues and don't wish to worsen. I take approx 5-9...
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    Folate Issues & Methylation

    @soulfeast Did you ever figure out your spinal issue? I'm having the same thing. Thx!
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    successfully treated SIBO with herbals

    @Jess I've had sibo issues for a while now---rifaximin didn't work. So I'm gonna try herbals. How long did you take them? and any recurring issues? Thanks! :)
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    Edema and Digestive Difficulty

    @Freddd I've recently had to up my folate due to being in donut hole deficiency...I was having excruciating nerve pain. Adding 50% extra folate made me feel much better (took away nerve pain) but threw me into crazy bad potassium deficiency. I feel caught in the middle. When I took a short...
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    Edema and Digestive Difficulty

    @Mary and @helen1 You guys were right...my potassium got very low I think. I've taken pills and downed coconut water. My body was in folate deficiency, so I upped it as you do to get out of donut hole deficiency---I upped it by half. Today has been rough! I think I'm okay now, but may rest...
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    Edema and Digestive Difficulty

    Hi there, I recently got in the donut hole with insufficient folate. I have doubled my folate, and I have new symptoms (doubling folate did stop some pain I was having). Edema seems worse, and digestion seems stalled. Does this mean I need to continue with more folate? My body feels a little...
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    Methylation happening?

    I believe methylation is happening but wanted a second opinion. I am having stabbing nerve pain or total numbness. It kind of alternates...and hits various places. Does this sound like healing? It's painful. I'm afraid to take pain meds due to missing symptoms for low potassium and...
  23. N

    Peristalsis seems stalled

    I've had gut issues for years. I've been on 1000mcg methlyb12 and 2-300mcg methylfolate for a while I don't do well raising the methylfolate at all but will continue trying as I can I took a methlyb12 shot today (don't usually take shots) Now my gut seems not to be working I've taken extra...
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    Can B12 without Methylfolate Cause Problems?

    Id love to better understand what caused my Sibo and what happened to my b12---what organism is a good question. I know genetically I am predisposed for infection since I wasn't aware of the issue and taking supplements then. I'll get back to you if I can find out what type of bacteria this is...
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    Can B12 without Methylfolate Cause Problems?

    @Crux Thanks for your input! My folate and b12 levels looked ok via testing but I've done better (less pain) since starting methylation protocol...I have a genetic mutation C677T which shows a need for both mb12 and methylfolate. I'm glad you're doing better! I'll retest for sibo next week.
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    Can B12 without Methylfolate Cause Problems?

    @Crux Hey! In researching I saw you have experienced things like me. I, too, have sibo and a high mcv which has been labeled fibromyalgia. Have you had any success treating sibo? I was in hopes starting methylation would help. I was on antibiotics and wound up worse...is why my research...
  27. N

    Going numb...after increased methylfolate

    Thanks @sregan I appreciate you looking at these and giving me feedback. I'll try the minerals...was actually thinking I needed a supplement for it. I've read some of Dr. Ben's stuff...I will check it out also. I do take sea salt daily...forgot to mention. I'm torn now on hugely increasing...