It seems suitable for me to chime in, as I am on the same journey here. Brief history: mercury toxicity from 13 amalgams, POTs, gallbladder / liver issues, burning mouth, hypothyroid. Amalgams removed 13 years ago, chelated on Cutler protocol but only DMSA as I never tolerated the ALA, so much unfinished business. Gave up after a couple of years and focused on methylation. The usual problems with doses and co-factors, so I never really got anywhere and gave up. Years passed, never really well, functioning at 60%. Everything fell apart in perimenopause. After a couple of years of symptoms, my gallbladder had to come out. My recovery from the operation was very slow, and after two weeks on the sofa I put two and two together on B12 and nitrous oxide, and the deficiency which is behind all my symptoms.
I started on the B12 oils in November, so it is still early days. As per Greg, I am taking B2 and the co-factors, but after a brief few energetic days at the beginning, am not really feeling any benefit. I understand that recovery may take years, and that the vagus nerve damage which is causing my POTs and ex-gallbladder / pancreatic symptoms, may not be cured at all, because this has been going on for 15 years. Every blood test I have had since the beginning of my illness showed extremely elevated B12. Not one doctor has followed up on it, beyond telling me not to take any more, which is of course completely the wrong advice. I haven't done the gene testing, but I am certain I have MTHFR, and can see symptoms of B12 deficiency running throughout my mother's side, and in my children too.
At the beginning of January, I started on B1, as per Lonsdale, for the dysautonomia and to use up the B12. It has been a rough ride. I worked quickly up to 150mg of Lipothiamine, but it contains ALA, and this made me increasingly sick before I realised. Then I moved to 300mg benfotiamine, which was OK, but nothing remarkable. Now I am taking 50mg of Allithiamine, and about 200mg of benfotiamine, along with a cocktail of B2, l-acetyl carnitine, copper, zinc, iron, alpha GPC, huperzine, calcium d glucarate, selenium, iodine, potassium, magnesium, molybdenum, vitamin D, tudca, a little bit of folate and P5P occasionally. I have Sphincter of Oddi dysfunction (also dysautonomia) which is keeping me sick and nauseous. I have severe histamine, sulphur and oxalate issues, food intolerances and some hardcore fatigue. I am bordering underweight and struggle to eat 1000 calories a day. I am on adrenal and thyroid support. Perimenopause is awful. I feel like a walking car crash. I am nearly 52.
I am thinking about B12 injections, as I am not convinced that the oil delivery system gets the B12 into the CNS. Or I am so messed up my body really can't handle the B12. Both B12 and folate were massively over range in recent blood tests but B12 deficiency symptoms continue, including sore tongue, POTs, gastroparesis, brain fog, anxiety and depression. I get very easily over-methylated - backache, anxiety - which stops me from using the B12 every day. I obviously have a problem with using it, despite the B2 and B1 and co-factors, folate etc, which I don't understand. I don't know what to do next other than keep going and hope that this prolonged sick period is basically my body sorting itself out with the B vitamins, gallbladder removal and disappearing hormones!
Anyway, you get the picture! It is a lonely journey, so I am interested to follow your experiences.
I started on the B12 oils in November, so it is still early days. As per Greg, I am taking B2 and the co-factors, but after a brief few energetic days at the beginning, am not really feeling any benefit. I understand that recovery may take years, and that the vagus nerve damage which is causing my POTs and ex-gallbladder / pancreatic symptoms, may not be cured at all, because this has been going on for 15 years. Every blood test I have had since the beginning of my illness showed extremely elevated B12. Not one doctor has followed up on it, beyond telling me not to take any more, which is of course completely the wrong advice. I haven't done the gene testing, but I am certain I have MTHFR, and can see symptoms of B12 deficiency running throughout my mother's side, and in my children too.
At the beginning of January, I started on B1, as per Lonsdale, for the dysautonomia and to use up the B12. It has been a rough ride. I worked quickly up to 150mg of Lipothiamine, but it contains ALA, and this made me increasingly sick before I realised. Then I moved to 300mg benfotiamine, which was OK, but nothing remarkable. Now I am taking 50mg of Allithiamine, and about 200mg of benfotiamine, along with a cocktail of B2, l-acetyl carnitine, copper, zinc, iron, alpha GPC, huperzine, calcium d glucarate, selenium, iodine, potassium, magnesium, molybdenum, vitamin D, tudca, a little bit of folate and P5P occasionally. I have Sphincter of Oddi dysfunction (also dysautonomia) which is keeping me sick and nauseous. I have severe histamine, sulphur and oxalate issues, food intolerances and some hardcore fatigue. I am bordering underweight and struggle to eat 1000 calories a day. I am on adrenal and thyroid support. Perimenopause is awful. I feel like a walking car crash. I am nearly 52.
I am thinking about B12 injections, as I am not convinced that the oil delivery system gets the B12 into the CNS. Or I am so messed up my body really can't handle the B12. Both B12 and folate were massively over range in recent blood tests but B12 deficiency symptoms continue, including sore tongue, POTs, gastroparesis, brain fog, anxiety and depression. I get very easily over-methylated - backache, anxiety - which stops me from using the B12 every day. I obviously have a problem with using it, despite the B2 and B1 and co-factors, folate etc, which I don't understand. I don't know what to do next other than keep going and hope that this prolonged sick period is basically my body sorting itself out with the B vitamins, gallbladder removal and disappearing hormones!
Anyway, you get the picture! It is a lonely journey, so I am interested to follow your experiences.
