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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. S

    What does high B12 mean?

    @alicec Can I ask what your dose of B1 was? Thanks again for answering my question about low homocysteine. I've been wondering about it for years but very few people have been able to comment. I did find this article a while ago though which is great...
  2. S

    What does high B12 mean?

    @Eastman. Thanks for sending the link, I found the article really interesting. My folate is also elevated so perhaps there is a level of thiamine deficiency and both folate and B12 are simply accumulating because they're not being used.
  3. S

    What does high B12 mean?

    @alicec Thanks again for replying and explaining so many things, I really appreciate your help. My GP is pretty open minded and very accommodating so hopefully he'll be happy to organise the test for me. Awesome that it's covered under Medicare too =] And thanks for sending that article through...
  4. S

    What does high B12 mean?

    Hi @alicec, thanks very much for your reply. Yes, I've consistently had elevated holotranscobalamin (active B12, apparently). I don't know a lot about it so I'm not sure if it's the bound version, sorry. I've never done an MMA test but I have repeatedly had low homocysteine. It has only...
  5. S

    What does high B12 mean?

    Hi @Valentijn, thanks for your reply. No, I haven't been supplementing with it, not for a long time anyway. From what I've read it seems that MTHFR is directly involved with B12 and that you need both methylfolate and methylcobalamin (methylB12) to manage the condition. I do eat a lot of...
  6. S

    What does high B12 mean?

    Hi guys. I've had high active vitamin b12 now for a few years and I have no idea what it means or why it's occurring. I have the MTHFR mutation (homozygous) and my practitioner wants me to take high doses of B12 but I'm concerned that I'm not breaking it down or utilising it properly. Does...
  7. S

    Low Homocysteine

    @Aerose91 Thanks for sharing your experiences and for helping me to understand it a little better. It would make sense that you wouldn't be able to heal when you're continually being poisoned. I really hope that you'll be able to make significant improvements away from that environment and I...
  8. S

    Low Homocysteine

    Sorry to hear about the mold trouble. I know that's causing serious issues for people. Would it be worth supporting your body nutritionally at the same time though? Also, would the AF be closely related to the ME? I've got severe AF so I'm hoping the nutritional balancing will give me some...
  9. S

    Low Homocysteine

    @Aerose91 Oh, that's awesome! How have you found it? Have you seen improvements from it? I'm just about to begin my treatment and I'm not sure what to expect or how long before things begin to change.
  10. S

    Low Homocysteine

    Hi @Aerose91. Thanks for your reply. All the best with changing your supplements, hope it gives you some improvements. I've stopped taking the methyl B12 and methylfolate and I feel exactly the same. I was reading a lot about supporting the methylation cycle (as well as the mitochondria cycle)...
  11. S

    Low Homocysteine

    Thanks very much for your help =]
  12. S

    Low Homocysteine

    Thanks for your reply. I wasn't taking the extra methyl donors before I found out I had the mutation and my homocysteine was still low. Could this mean that I'm an undermethylator? Thanks for your help. I'm still pretty new to all of this.
  13. S

    Low Homocysteine

    Hi guys, I'm new to the forum but was wondering if you could help me out. I've had CFS for 6.5 years and in recent months I've found out that I am MTHFR homozygous C677t. This is usually associated with high homocysteine, however, my recent blood tests (and tests I've had in the past) have come...