Anyone have any thoughts re my long-suffering daughter, Anna’s difficulties getting to grips with her CFS?
A few years ago, Anna, began following Rich van Konynenburg's Simplified Methylation Protocol. She subsequently improved noticeably, in that she was able to get out of bed and be more mobile, with less pain and fatigue. She also experienced what I’ve seen referred to as ‘neurological brightening’ (sharp little nerve pains, not unpleasant), every time she increased her B12 and folate. When the brightening faded, she knew it was time to increase again. For the first several increments, the brightening was stronger each time. But then, the brightening began to be weaker each time, until eventually it stopped altogether – at about 8000mcg methylcobalamin and about 6400mcg folate daily.
Then she cut back to 1400mcg B12 and 1200mcg folate (partly because she wasn’t getting the brightening any more, and partly because her teeth were becoming very sensitive, from the way she was holding the Enzymatic Therapy B12 Infusion tablets between her teeth and cheeks, for extended periods of time). She has been continuing at this lower level for 2 years now, and her general condition has neither improved nor worsened.
Throughout the process, she had been taking daily, 1 x Pure Encapsulations B-Complex Plus, providing her with 16.7mg of B6 (40% of which is P5P).
A few months ago she started adding daily, 12.5mg of P5P (giving her a total daily P5P of 29.2mg; i.e. including the P5P from the B-Complex), which she tolerated, but she didn’t notice any effect.
Early last week she added daily another 12.5mg of P5P (giving her a total daily P5P of 41.7mg). She took away this additional P5P after 2 days because she had a severe reaction. The one positive of the extra P5P had been that her brain fog lifted (for about 12 hours) and she was able to perform mental tasks that are normally beyond her – but this positive was really only like an adrenaline surge, or a caffeine rush, and even as she experienced it, she knew there would be a price to pay. And there was - palpitations, overheating, thirst, sweating, flushed skin, headaches, hyperactive dreaming, insomnia… and she finally crashed with exreme fatigue and brain fog. Nearly two weeks later, she’s still struggling to recover.
We read that you need to have sufficient B2 to support P5P and so, a few days after the P5P crash, in an attempt to deal with the bad effects of the P5P, she added daily, 25mg of B2 (on top of the 12.7mg in the B-Complex). This made things worse – she had been starting to recover from the P5P crash, but the B2 brought it all back again.
This is leading us to think there is some problem with the trans-sulfuration pathway, because the CBS enzyme relies on B6. She had her homocysteine tested a year ago and it was 4.7umol/L, which we believe is on the low side. Does her low homocysteine and difficulties with B2/B6 suggest an upregulation in the CBS enzyme? She also has chronically low magnesium (in spite of supplementing by every means available) and we think there may be a link between that and the P5P intolerance?
Or, could the reaction to P5P be a sign that some process was waking up, but that she simply took more than her system was able to manage – and she should try again, but starting with a tiny dosage? (She worries that she might be doing herself some harm with the P5P/B2, so is reluctant to experiment further.)
Anna’s urine is always dark yellow, despite drinking a lot of water; and she always feels dehydrated. The strong urine colour is 24/7; i.e. it happens long after B2 supplementation - could this be ‘B2 wasting’; i.e. B2 not being used, whether from food or supplements – or could it be due to excessive ammonia/sulfur/other waste in the urine? (Her urine pH varies between 5 and 9; i.e. is often strongly alkaline.)
A few years ago, Anna, began following Rich van Konynenburg's Simplified Methylation Protocol. She subsequently improved noticeably, in that she was able to get out of bed and be more mobile, with less pain and fatigue. She also experienced what I’ve seen referred to as ‘neurological brightening’ (sharp little nerve pains, not unpleasant), every time she increased her B12 and folate. When the brightening faded, she knew it was time to increase again. For the first several increments, the brightening was stronger each time. But then, the brightening began to be weaker each time, until eventually it stopped altogether – at about 8000mcg methylcobalamin and about 6400mcg folate daily.
Then she cut back to 1400mcg B12 and 1200mcg folate (partly because she wasn’t getting the brightening any more, and partly because her teeth were becoming very sensitive, from the way she was holding the Enzymatic Therapy B12 Infusion tablets between her teeth and cheeks, for extended periods of time). She has been continuing at this lower level for 2 years now, and her general condition has neither improved nor worsened.
Throughout the process, she had been taking daily, 1 x Pure Encapsulations B-Complex Plus, providing her with 16.7mg of B6 (40% of which is P5P).
A few months ago she started adding daily, 12.5mg of P5P (giving her a total daily P5P of 29.2mg; i.e. including the P5P from the B-Complex), which she tolerated, but she didn’t notice any effect.
Early last week she added daily another 12.5mg of P5P (giving her a total daily P5P of 41.7mg). She took away this additional P5P after 2 days because she had a severe reaction. The one positive of the extra P5P had been that her brain fog lifted (for about 12 hours) and she was able to perform mental tasks that are normally beyond her – but this positive was really only like an adrenaline surge, or a caffeine rush, and even as she experienced it, she knew there would be a price to pay. And there was - palpitations, overheating, thirst, sweating, flushed skin, headaches, hyperactive dreaming, insomnia… and she finally crashed with exreme fatigue and brain fog. Nearly two weeks later, she’s still struggling to recover.
We read that you need to have sufficient B2 to support P5P and so, a few days after the P5P crash, in an attempt to deal with the bad effects of the P5P, she added daily, 25mg of B2 (on top of the 12.7mg in the B-Complex). This made things worse – she had been starting to recover from the P5P crash, but the B2 brought it all back again.
This is leading us to think there is some problem with the trans-sulfuration pathway, because the CBS enzyme relies on B6. She had her homocysteine tested a year ago and it was 4.7umol/L, which we believe is on the low side. Does her low homocysteine and difficulties with B2/B6 suggest an upregulation in the CBS enzyme? She also has chronically low magnesium (in spite of supplementing by every means available) and we think there may be a link between that and the P5P intolerance?
Or, could the reaction to P5P be a sign that some process was waking up, but that she simply took more than her system was able to manage – and she should try again, but starting with a tiny dosage? (She worries that she might be doing herself some harm with the P5P/B2, so is reluctant to experiment further.)
Anna’s urine is always dark yellow, despite drinking a lot of water; and she always feels dehydrated. The strong urine colour is 24/7; i.e. it happens long after B2 supplementation - could this be ‘B2 wasting’; i.e. B2 not being used, whether from food or supplements – or could it be due to excessive ammonia/sulfur/other waste in the urine? (Her urine pH varies between 5 and 9; i.e. is often strongly alkaline.)
