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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. P

    Thoughts on genetic genie results? dealing with possible lyme and host of other issues..

    Got my results after 8 weeks, having HDRI methyl panel drawn tomorrow...not sure what to make of genetic genie results...B12 levels have always been mid normal...but b12 binding capacity is always low...serum MMA normal, as is serum folate... Host of symptoms from muscle aches, tightness, POTS...
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    Help needed - B12 Binding Capacity test result

    So I just went back and listened to Ben Lynch's podcast on UBBC/binding capacity. It sounds like the above is correct i.e., the wheel barrel theory, if and only if, one is supplementing with B12 at the time of the UBBC test and their B12 serum levels are elevated. However, if one is not...
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    Help needed - B12 Binding Capacity test result

    Thanks. I wasn't on any supplementation at the time of the test. I've actually never been on any b vitamin or multivitamin supplementation thto out hour all this. From the reading I've done on it, it sounds like the UBBC represents a deficiency in carriers, which essentially means you have...
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    Help needed - B12 Binding Capacity test result

    Thanks Freddd, so I am not gonna lie, I dont totally understand everything in the above post, but I think the gist of what you are saying is that even if one has some sort of transcobalmin deficiency (whether it be mild, partial, hereditary, etc.) it doesnt really matter, as long as they are...
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    Help needed - B12 Binding Capacity test result

    Thanks so much. So given my very low b12 binding capacity test is there a follow up I can have my doc do to flesh out say transcol I, transcol II, etc. levels? I've been very sick for a long time and they e been chasing Lyme. Just don't want to miss anything. All my symptoms line up with b...
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    Help needed - B12 Binding Capacity test result

    I know this is an old thread but was hoping to revive it, I too tested for low B12 binding capacity, B12 serum which was done at the same time was 512....so in normal range...not sure what the two together mean? I have A1298C, but still waiting on my other 23andMe SNP's.... any insight would be...
  7. P

    sick for over a year, recent B12 labs in..need help interpreting

    So two quick updates... Just came from one of my doc appts. I mentioned to him the finding of low b12 binding capacity, he said this was a good thing as it meant more b12 was free in the serum to be absorbed? The way he explained it made sense but it doesn't seem to match up with what little...
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    sick for over a year, recent B12 labs in..need help interpreting

    Hey, I am scheduled to start shots next week, however I only have the option of cyno avail to me at this point...worth doing anyway? I will def get some of the methyl subs to take on my off days, cant hurt right? from what I understand b12, regardless of form, is fairly benign.. From what...
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    sick for over a year, recent B12 labs in..need help interpreting

    Hi, That's basically what I've been doing for the past 14 months, all kinds of various imaging scans, biopsies, labs, all done multiple times. Early on in this I was waking 3x/night to pee, now I would say maybe once, but usually never... (maybe once a week I'll wake up at night to pee)...
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    sick for over a year, recent B12 labs in..need help interpreting

    Hi, Thanks for the info, very helpful. I will check out the links, but of what you've mentioned, i.e., celiac, lactose intolerance and internal parasites e.g. worms, gardia etc all of those have been checked for multiple times...for celiac I've had genetic testing (neither gene was found)...
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    sick for over a year, recent B12 labs in..need help interpreting

    \ Hey, here is the list, prior to 8/2011 I was in the best shape of my life and have always been very active, never had a single health issue my whole life prior. Around 8/2011 started having small bouts of general malaise, nausea, bloating, sporadic pinpoint rash on stomach/chest, slight...
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    sick for over a year, recent B12 labs in..need help interpreting

    30 y/o male, sick for 14 months now with a myriad of symptoms. Have been seen in all the major Boston hospitals by 35+ specialists...etc. etc. Wont go in to full story or all the testing and results here, but in regards to B12. I do have many of the symptoms of B12 deficiency. However when...