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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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Search results

  1. L

    Very low homocysteine & MTR/MTRR

    @nandixon if MTRR is homozygous (downreg?) won't this mean b12 is in short supply as MTR is using it up?
  2. L

    Very low homocysteine & MTR/MTRR

    My blood levels of b12 are very high even without supplementation. Is this a conversion problem? Initially on mb12 I felt wonderful. Same with SAMe. Then awful. I have COMT snps as well so I think getting overmethylated & high estrogen easily upsets things. No one seems to know how to...
  3. L

    Very low homocysteine & MTR/MTRR

    Thank you so much. My practitioner thought I was overmethylated as I had high copper and normal histamine but I got worse on folic acid (William Walsh protocol) so she changed her mind to undermethylated. I seem to have symptoms of high histamine at times though. Whether that is from my gut or...
  4. L

    Very low homocysteine & MTR/MTRR

    Yes I am & MTRR K350A My blood test for homocysteine showed very low levels
  5. L

    Very low homocysteine & MTR/MTRR

    Can anyone please help me work out what I need? I have been treated by Dr and ND with methylb12 lozenges and hydroxy injections. At present I'm taking a small amount of Methylfolate and methylb12 but feel dreadful some days and fine others. More makes me feel overmethylated and angry. I'm...
  6. L

    Adenosylcobalamin and increased malaise anyone?

    Thank you for that link. I have searched and searched and read and read but some of it is like needle and haystack. I'm accustomed to searching databses for uni but I rarely find what I need in here, I wish there were more stickies!
  7. L

    Adenosylcobalamin and increased malaise anyone?

    I've been doing OK with the supps but quite variable. But today am flushing a lot, not totally unusual around high estrogen phases of my cycle but this is the worst it's been in several months. Am uncomfortable/breathless/panicky. I don't understand as I'm taking in a lot of methyl I thought...
  8. L

    Adenosylcobalamin and increased malaise anyone?

    Well @alicec I took the 1st metafolin at noon, by 2pm thought i felt well enough for the gym, then the other 400mcg at 3pm (with potassium, mag, cal etc). By 3.30 I felt like a million bucks. My ND is maybe basing her knowledge off the likes of Walsh (Nutrient Power) where it says...
  9. L

    Adenosylcobalamin and increased malaise anyone?

    Thanks @alicec I took 400mcg of the solgar metafolin and feel bit better in terms of fuzzy head and irritability. Won't take more lozenge due to the adb12 but I do have some mb12 spray. Maybe better to try few days with the metafolin before upping the mb12. I did see quite an academic response...
  10. L

    Adenosylcobalamin and increased malaise anyone?

    Seeking health b complex plus & lozenge. Complex says Quatrefolate Just arrived on my doorstep is solgar methylfolate 800mcg & SN FMN. Kicking myself I didn't order mb12 as well.
  11. L

    Adenosylcobalamin and increased malaise anyone?

    Yes I was having 400mcg (this morning just 200mcg then planned another 200mcg at lunchrume), I wondered if I needed more methylcobalamin (have MTR/MTRR snps) to go with it or try more folate. Can't increase it without increasing the adb12 though. Quite dizzy, nauseas & tired from the folate. My...
  12. L

    Adenosylcobalamin and increased malaise anyone?

    Has anyone experienced this or does someone know the underlying mechanism? I started off on b12 with hydroxy & separate adenosyl lozenges. I noticed after the adenosyl a drop in energy but thought it was really odd. My ND gave me a lozenge that's 4000mcg methylcobalamin and 1000mcg...
  13. L

    Help and experiences with MTR++/MTRR++ please

    I am not sure the ammonia source is restricted to the gut as I am also affected by sulphur, lactulose can lower ammonia of hepatic origin, and my sxs can be exacerbated quite rapidly by particular supplements (like MSM) which suggests to me a metabolic component not just microbes. @MacGyver I...
  14. L

    Help and experiences with MTR++/MTRR++ please

    Thank you yes I found myself on those websites after the metronidazole didn't work (also near killed me, horrible drug I feel for you guys taking double & triple combos). I really believed the doxycyline was effective but now I'm running over the last few months again with a dientamoeba lense...
  15. L

    Help and experiences with MTR++/MTRR++ please

    How to fix this? I've been treated for dientamoeba twice, with metronidazole then doxycyline. This was post-2012. No sxs of dientamoeba now but still get the fog. Herbalist has put me through 2mths of wormwood Treatment, first week I thought I was dying (the 'ammonia' sx I assumed from dead...
  16. L

    Help and experiences with MTR++/MTRR++ please

    As I mentioned in the TMG thread, severe brain fog is my worst sx. By trial and error it seems to be high ammonia. Clinical liver disease isn't apparent so I am left with hypotheses from my SNPs. I have treated and am managing my gut health for infections and overgrowth. Because I struggle to...
  17. L

    Help and experiences with MTR++/MTRR++ please

    Thank you yes I actually prefer Heartfixer to Yasko's explanations but there is generally less info out there on these 2 compared with mthfr. Thanks for those links, bit simpler to comprehend. From them I deduce that MTR & MTRR homo means overall there's likely chronicly low methionine > low...
  18. L

    TMG makes me very depressed why?

    Great contribution @alicec Too unwell to fully follow today but what is becoming apparent is the more I know the less I know lol. I am homo for MTR & MTRR (just hetero for a1298c). Perhaps there lies a clue. I may have neglected folate & potassium and TMG is not ready to be introduced. I...
  19. L

    Help and experiences with MTR++/MTRR++ please

    @MacGyver and any others in the know, best way to support these SNPs and understand their bigger picture?
  20. L

    TMG makes me very depressed why?

    I found with ALCAR that my cognition was sharper and more sustained during the day. However, I am considering the last few weeks critically and I have deteriorated. Whether that is simply due to stressful events or the ALCAR is draining a co-factor I am not sure. I think I should remove it...
  21. L

    TMG makes me very depressed why?

    I certainly don't eat low protein. I feel quite weak if I don't eat meat and I have PCOS so I try to avoid spiking my insulin with a high carb diet. However, mb12 increases my appetite and cravings for carbs :( Quick question @MacGyver is there an FMN form b2 on iherb you can suggest? I live...
  22. L

    TMG makes me very depressed why?

    Sorry UM - undermethylated. Ammonia definately a problem for me, seems to be one of my primary issues. Reluctant to try yucca due to its hormonal properties but lactulose syrup helps. Started Carnitine (ALCAR) with good response. My ND wanted to move to SAMe but I was suspicious it'd go bad...
  23. L

    TMG makes me very depressed why?

    This is really interesting. I tried TMG for first time yesterday, just a pinch, but ended up very depressed, OCD-like and hesitant with feeling in an awful bubble but different to the brain fog I experience with high ammonia. I'm told I'm UM so I'm confused why this reaction. I thought OCD was...
  24. L

    Can someone more experienced help me figure out where to start?

    Thank you yes I have been doing GAPS intro but I keep getting to a roadblock in improvement and I wondered if it was related to poor methylation as I recall reading something about sulphur and leaky gut and also that some people saw an improvement in their gut when sorting out their methylation...
  25. L

    Can someone more experienced help me figure out where to start?

    Thank you - caledonia's files won't open on my phone for some reason so I'll have a try later on a pc. I understand there is a connection between NO gas and disrupting the methylation cycle but I used gas during labour and was no where near as ill after that as I was after surgery under GA so...
  26. L

    Chronic hunger

    I've had this (constant knawing hunger) since halfway through a course of doxycycline in January which leads me to believe it's a gut flora imbalance issue. I'm taking probiotics and taking the usual measures like avoiding sugar, excess starch etc but it's been quite persistent although I...
  27. L

    Can someone more experienced help me figure out where to start?

    Hi there, I'm new to the forums but not ME/CFS (since 2001). A year ago I did the 23andMe test for my son and I. I am having a hard time finding a practitioner to help me in New Zealand this science is still so new. I have been quite ill again since surgery under GA in 2012. This is what...