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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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    Why the controversy with the CBS C699T enzyme defect?

    Thank you, JaimeS, that was immensely enlightening, and since my concern is specifically a homozygous CBS C698T phenotype (which I am), very relevant! I'm examining this in particular, coz I am in fact allergic to sulphate drugs, and sensitive to sulfites. I'm suspecting that a bit of sulfur...
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    MTHFS defect (folinic acid intolerance) - request for genetic data

    Does Freddd have his genetic results posted anywhere? That would be extremely interesting, and perhaps useful to those on his protocol.
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    MTHFS defect (folinic acid intolerance) - request for genetic data

    Hi Lotus, There is Calcium folinate in my multi (Thorne). I actually tolerate it well. Thorne is the only multi I found I can tolerate. Others (with other folate forms and who knows what else) give me the flu-like symptoms mentioned above. I also take a B-complex daily with 5-methlyfolate...
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    MTHFS defect (folinic acid intolerance) - request for genetic data

    I'm hoping this posts with the formatting correctly. Here are my 23andme results, put thru genetic genie. I'm currently doing a modified version of Freddds protocol. In the past when I've used folic acid or folate (not the active form) in vitamins I respond very badly (flu like symptoms, sore...
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    B-12 - The Hidden Story

    A couple questions too. I spoke w/Dr. Neubrander's assistant today... in his opinion (and I assume he has reason to believe this) sublingual B12 is only about 5% usable, compared to the shots. So they use shots in their protocol. They are of the opinion that if you have a deficiency, the...
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    B-12 - The Hidden Story

    Hey, thanks so much for this. This doctor is nearby to where I live. I'm calling first thing in the morning! Hope he takes new patients.
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    B-12 - The Hidden Story

    Lots of info to take in. Thanks for the input Lotus and Freddd. I went to the doctor today (he is sooooo useless) and I saw my lab results from 3 months ago physical exam. My hematacrit and hemoglobin are on the very low side (on previous lab tests the cut-offs were higher, and would've shown...
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    B-12 - The Hidden Story

    Hope my post isn't interrupting the flow of your discussion. I just have a quick question... I completed a month on Freddds protocol (I started with mB12, then a week later added Methylfolate, then few days later added l-car and Dibencozide, along with the multi, etc). Anyway, for the last...
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    B-12 - The Hidden Story

    hmmm. I open the capsules and separate the doses with some other things, maybe I can try that with B vitamins. I hope they don't taste too nasty. Is there a vitamin B panel which labs can do? I know you can check B12 and folate, but is there a test for the others? That would give a better...
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    B-12 - The Hidden Story

    Thanks, I'll keep an eye on the total dosage.
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    B-12 - The Hidden Story

    Oh my goodness, this is so complicated. Thanks for the help. I think a foggy brain makes this way more challenging than it really is? After reading other threads on here, I'm leaning to the Swanson Activated B, since it has all but B3 in the active form. I'm also looking at the Pure...
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    B-12 - The Hidden Story

    I think whey would be casein free, since the milk solids have been strained off. I assumed kefir is ok for me, since it's cultured and the proteins are partially broken down as a result. It hasn't given me the intestinal upset which eating other known allergy foods gives me. But, to be on the...
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    B-12 - The Hidden Story

    Thanks for the response. Because I wasn't sure if the whey in kefir was allowed on protocol or not, I haven't been drinking it since 5 days now. Surprisingly, the last 3-4 days I'm finally perking up and having some energy. I mean, I'm not doing cartwheels, but I'm optimistic that something...
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    B-12 - The Hidden Story

    Hi Xara, Thanks so much for your reply! I'll lower the folate dose back down and see how that goes. I'll stop all supps for about a week and half prior to testing. If I was very brave, I would stop now, but I'm remarkably clear headed today and dread sinking back into the fogginess, which I...
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    B-12 - The Hidden Story

    Hi Everyone, I've been lurking on PR for a while now, but after starting Fredds protocol, thought I should jump in, since I'm having start up issues. And it helps me feel less alone to read people's experiences on here. I apologize I have not yet read the entire 136 pages :rolleyes: of this...