Not much has changed since my last post except I have my vitamin B1 powder again so I figured I would jot down everything I am currently taking to address my long term B12 deficiency/refeeding syndrome. (see last blog post for details)
Vit B12 1000 mcg 3-4x a day (currently using multiple brands)
Vit B1 25-100mg 3-4x a day in water (Bulk Supplements thiamine HCL)
Vit B2 10-50 3-4x a day (Pure Bulk Riboflavin 5' Phosphate)
Potassium citrate 99-250 mg 4-5x a day (Bulk Supplements/Vitamin Shoppe)
Magnesium Bis-glycinate 200-400mg 1x day (Pure Bulk)
Lithium 1000 mcg 1x a day before bed (Life Extension)
Molybdenum 250 mcg 1x a day (KAL amino acid chelate)
Zinc 50mg 1x a day away from other supplements (Life Extension as OptiZinc)
D-Ribose 2g 1-3 times a day (Jarrow)
CoQ10 200mg 1 every other day at night (NOW Ubiquinone)
Vit E 134mg in AM & 50mg in PM (Solgar d-Alpha Tocopherol & Dr.s Best TocoGaia Ultra Mixed Tocotrienols)
Vit C 1000mg 4x a day (NOW sustained release vit C with 25mg Rose Hips)
Vit D 5,000 IU 3x a week (Thorne D3)
Methylene Blue 0-10mg a day divided into 2 doses (Not related to my B12 treatment but I wanted to include everything)
Notes - I gave a range for the potassium, magnesium and B vitamins because it feels like my body changes day to day and I mostly figure out how much I need based on how I feel. It's also important to keep in mind that too much potassium can be very dangerous. Because of that, I typically ease off for a day and see how my body feels. It's challenging because low potassium gives me symptoms that are similar to low magnesium, so sometimes I just have to try one and see if it helps and if it doesn't I take a little of the other.
I currently have several different types of B12 supplements because it has been hard for me to know what is working.
The vitamin E & C I am taking to hopefully help reduce the oxidative damage seen in ME/CFS. Plus vit C & E and magnesium should theoretically help reduce the damage caused by heavy metals in the body which is also a concern that I have. A high nutrient diet in general is supposed to help protect against heavy metals and increase their excretion.
Some people/blogs claim that you should not take supplemental vit C with B12 because ascorbic acid has been seen to destroy B12 in test tube studies. However, there is no evidence that this happens in the body. It does suggest that it is a bad idea to use any supplement that contains both B12 & vit C because the B12 might get destroyed during the manufacture of the supplement. But taking the two as separate supplements slightly apart from each other should be fine.
The Methylene Blue I started taking because at low doses it helps improve mitochondrial function and helps reduce oxidative damage to the mitochondria. At least that is what it theoretically does, no one has tested it in people with ME/CFS as far as I know. But it has a long history of use for various things, most notably for helping to add oxygen to the blood in methemoglobinemia, a condition in which hemoglobin decreases its ability to carry oxygen (https://www.ncbi.nlm.nih.gov/books/NBK557593/ ). It does seem to give me a little extra energy in the day which is great. Not anything crazy like coffee, just a nice subtle boost. Realistically I’m taking a very low dose and could increase it but this feels good for me.
Vit B12 1000 mcg 3-4x a day (currently using multiple brands)
Vit B1 25-100mg 3-4x a day in water (Bulk Supplements thiamine HCL)
Vit B2 10-50 3-4x a day (Pure Bulk Riboflavin 5' Phosphate)
Potassium citrate 99-250 mg 4-5x a day (Bulk Supplements/Vitamin Shoppe)
Magnesium Bis-glycinate 200-400mg 1x day (Pure Bulk)
Lithium 1000 mcg 1x a day before bed (Life Extension)
Molybdenum 250 mcg 1x a day (KAL amino acid chelate)
Zinc 50mg 1x a day away from other supplements (Life Extension as OptiZinc)
D-Ribose 2g 1-3 times a day (Jarrow)
CoQ10 200mg 1 every other day at night (NOW Ubiquinone)
Vit E 134mg in AM & 50mg in PM (Solgar d-Alpha Tocopherol & Dr.s Best TocoGaia Ultra Mixed Tocotrienols)
Vit C 1000mg 4x a day (NOW sustained release vit C with 25mg Rose Hips)
Vit D 5,000 IU 3x a week (Thorne D3)
Methylene Blue 0-10mg a day divided into 2 doses (Not related to my B12 treatment but I wanted to include everything)
Notes - I gave a range for the potassium, magnesium and B vitamins because it feels like my body changes day to day and I mostly figure out how much I need based on how I feel. It's also important to keep in mind that too much potassium can be very dangerous. Because of that, I typically ease off for a day and see how my body feels. It's challenging because low potassium gives me symptoms that are similar to low magnesium, so sometimes I just have to try one and see if it helps and if it doesn't I take a little of the other.
I currently have several different types of B12 supplements because it has been hard for me to know what is working.
The vitamin E & C I am taking to hopefully help reduce the oxidative damage seen in ME/CFS. Plus vit C & E and magnesium should theoretically help reduce the damage caused by heavy metals in the body which is also a concern that I have. A high nutrient diet in general is supposed to help protect against heavy metals and increase their excretion.
Some people/blogs claim that you should not take supplemental vit C with B12 because ascorbic acid has been seen to destroy B12 in test tube studies. However, there is no evidence that this happens in the body. It does suggest that it is a bad idea to use any supplement that contains both B12 & vit C because the B12 might get destroyed during the manufacture of the supplement. But taking the two as separate supplements slightly apart from each other should be fine.
The Methylene Blue I started taking because at low doses it helps improve mitochondrial function and helps reduce oxidative damage to the mitochondria. At least that is what it theoretically does, no one has tested it in people with ME/CFS as far as I know. But it has a long history of use for various things, most notably for helping to add oxygen to the blood in methemoglobinemia, a condition in which hemoglobin decreases its ability to carry oxygen (https://www.ncbi.nlm.nih.gov/books/NBK557593/ ). It does seem to give me a little extra energy in the day which is great. Not anything crazy like coffee, just a nice subtle boost. Realistically I’m taking a very low dose and could increase it but this feels good for me.
