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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. B

    Is excess hair loss due to the methylation protocol?

    Thank you Rich for that explanation - this makes sense in terms of what I'm experiencing. I was doing better when I was taking Actifolate than I am with Metafolin, and now I have a good explanation for why that would be. I appreciate your reasons for recommending medical supervision on this...
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    Is excess hair loss due to the methylation protocol?

    Has anyone experienced this? I'm 2+ months into the methylation program and am really not sure if its doing anything positive but I am getting new symptoms, including hair loss. I'm also getting skin problems, worsening insomnia. At first I thought it might be low potassium, but when I...
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    Whats a good ratio of B12:ADB12:Metafolin?

    Could anyone please tell me what the appropriate ratio of these 3 supplements is? If I'm taking 5000mg of Jarrow B12, how much adB12 and how much Metafolin should I be taking to balance things out? thanks
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    Thyroid medication made me worse

    I have taken thyroid meds for over 20 years because I have no thyroid. When I read about dessicated thyroid being far superior (apparently) to T4, I decided to try it. Bad, bad idea - I should have known better. Armour makes me very ill. T3 makes me very ill. (FWIW: DHEA and hydrocortisone...
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    Restricted diets

    Like Penny and ukxmrv I've tried various restrictive diets over the years. Candida diets, detox diets, exclusion diets... you name it, I've tried it. I'm very disciplined with diets when I try them; mostly because I'm desperate to get better. I'm willing to put huge effort into maintaining...
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    Methylation and protein intake

    HI Laurie Yes, that does help thank you. Another reason for my asking was that I tend to rely on animal proteins quite heavily because I find nothing else satisfies my hunger. However, I am aware that a high protein intake can be problematic, and also can apparently cause problems with...
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    Methylation and protein intake

    Hi all Is a high animal protein intake something to be avoided while on this protocol? I have been trying to understand more about methylation and while I understand that part of the problem is related to low B12/folate (either by reason of genetic inheritance or environmental factors or...
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    3 weeks into Fredd's protocol - is this normal?

    Hi Fredd I can confirm that I'm using one of your preferred brands of mb12 (Jarrow) as per your revised protocol, thank you for mentioning it. Can I ask why you recommend both Jarrow mb12 and the Enzymatic Therapy b12 infusion? I've decided to back off the mb12, adb12 and metafolin for a few...
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    3 weeks into Fredd's protocol - is this normal?

    So I think what you're all saying is good advice; I need to back way down to much lower doses. That's what I'll do. And thanks Kurt for the hydration reminder; I could stand to improve my water intake so I'll do that too. I'm using the -ate forms of magnesium; citrate, aspartate, fumarate...
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    anticipating headaches on methylation protocol - suggestions please

    I agree with you on this point. Too many docs are too quick to blame everything on estrogen dominance and I think that's a big mistake. It seems estrogen dominance is the catch-all for too many things today and I'm not sure how accurate that is. In some ways its a bit like CFS being a...
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    3 weeks into Fredd's protocol - is this normal?

    Thank you both for your advice. I'm currently taking 6 x 99mg potassium daily (split into 3 doses). Do you think I need more than that? I'm hoping that the reason Metafolin knocked me flat is just what you said Mary, that its a sign its working for me. Its hard to know though. Thanks for...
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    Gut healing - what seems to be helping me

    Hi Wayne I read your post - its nice to hear other people's experiences. I think you enjoy the taste of kefir more than I do, but its OK for me with fruit and seeds :) You might be onto something about the good bacteria keeping the bad bacteria in check. Its probably also why milk drinkers...
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    3 weeks into Fredd's protocol - is this normal?

    Hi all I started Fredds protocol at the end of April, but wasn't aware of the folic acid issues so I switched to the non-folic acid varieties of folate & adb12 only 3 weeks ago. I had very few side effects/symptoms while taking folic acid; since switching, the side effects/symptoms have been...
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    anticipating headaches on methylation protocol - suggestions please

    I also get migraines, usually worse around my period. Since starting the protocol I've been getting more migraines and headaches. The usual pain relief (including Migraleve) didn't help at all. This week I tried some SAM-e and it seemed to help with both types of pain. I've been meaning to...
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    Gut healing - what seems to be helping me

    No problem at all Harrycat, I've got extra at the moment. If you send me a PM (click on my name and it will give you the option of sending a Private Message) with your postal address I'll post some to you. :)
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    Gut healing - what seems to be helping me

    Hi Dan, I got my original grains from a personal contact who in turn got them from someone else, but the grains which I got looked very similar to grains I'd previously bought (and killed!) from eBay. They look like little cauliflower heads (if that helps?) I would have preferred to use raw...
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    Methylation / thyroid medication / potassium/ iron

    Hi all I would appreciate some advice on 3 topics. 1. About the effect the methylation supps can have on thyroid meds. Somewhere, I thought I read that some people find they need less thyroid medication during treatment. Has anyone reported the opposite? Has anyone found themselves...
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    Gut healing - what seems to be helping me

    Hi Justy Thanks for your input! I've only ever used grains and I must admit I really don't like the taste of kefir; I have to smother it in fruit, seeds and yoghurt to be able to drink it :) But its worth it for the benefits I mentioned. I found it worked quite well with soya and coconut milk...
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    Gut healing - what seems to be helping me

    Hi all I'm new to the forum but have been reading posts for some time. Briefly, I've had CFS for nearly 8 years and would be classed as moderately affected. I see a lot of people referring to gut healing and wanted to pass along what seems to be working for me. A few years ago I did the...
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    MacaFem- Ladies and Hormones

    maca My experiences with Maca were not good. The first time I ever tried it, I had a minor crash. I then tried it again after spending 6 months working on gut health. I didnt crash this time which was good. Tiny doses had no effect. Just a little more caused insomnia, jittery...