- Messages
- 34
Hello. Has anyone followed Freddd's advice and started his protocol? If so, how did you do it?
Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Hi. Thanks for answering, why excess of methyl vitamins can cause problema? I ask this because initially the b12, b9 defect is what causes demyelination. I had homocysteine and amino acid tests done. The amino acids (methionine) are fine. My b9 is very low, I cannot tolerate folic acid, taking it made me have symptoms of folate deficiency .there is no evidence that anything treats cfs.
what even is cfs... nobody knows. a set of symptoms and physiological changes many share. thats it.
but many here got improvement by trying one thing or another. so its worth trying.
and some few have a isolated deficiency of one or another thing and can get big improvements.
freddds protocol is about getting methylation back to work. its suspected that freddd has a very rare genetic defect or multiple which dont allow for one b12 compound be metabolised into the other, thats what i got by following the discussion.
but others also reported some improvements and others reported no improvements or worsening of symptoms.
what i can tell for any methylation protocol, which many do not point out big enough imho. you need a source for methyl groups, thats like methionine or cholin (like in egg yolks). and also glycine as methylgroup buffer which is mainly in bonebroth.
the vitamins only transport the groups around but are poor donors. (they are donors but no source or a very poor source)
and you need both, the methylgroup donor as well as the important vitamins b12, b6, folat to get the methylation going.
people with excess methylgroup sources like methionine rich with a poor vitamine diet will get problems (high homocystein), and the other way is true too, having those vitamins plenty but not enough methylgroup sources will make troubles too (demyelation).
a high homocystein blood value is strong indicator that methylation is fck up and a lack of those vitamins is present.
so make sure of that when you start methylation protocols.
Thank you very much for answering and sharing your experience. I am worried because I have neurological symptoms and I don't know if they are due to the folate deficiency that my tests show or an added deficiency of b12. I have had tests done for holotranscobalamin, homocysteine and methylmalonic acid, but I still have no results.@yellowspain - one more thing - you wrote somewhere that you had a bad reaction to glutathione. Someone replied that glutathione depletes B12.
First, I'm not sure that glutathione depletes B12 - this study says the opposite: https://pubmed.ncbi.nlm.nih.gov/15606130/#:~:text=However, glutathione inhibits the reduction,related to vitamin B12 depletion.
One other possibility is that the glutathione caused a detox reaction. This happened to me several times when I tried to take it - it would make me tired and feel sick. Eventually this stopped happening. It's a long story involving glycine and inositol and glutamine which I won't go into here.
So the glutathione may not be bad for you - it may not be depleting your B12 and may instead be causing a detox reaction.
What worries me about Freddd's protocol are the high amounts it uses, coupled with the refeeding syndrome that I don't quite understand.
Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia.1 6
The other day I took folic acid and had symptoms of folate deficiency,