• 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 (FM), 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.

Cerebral Folate Deficiency


Senior Member
Virginia, US
any thoughts? high serum b12-folate and low homocysteine, I have been told, are signs to look into this. High dose folinic is used and testing for folate antibody receptors... ??


Senior Member
Sydney, NSW, Australia
Hi soulfeast, interesting topic! I found that on doing methylation protocols for about a year, I built up high levels of serum B12, serum folate and red cell folate. I am not entirely sure what this meant. I have normal levels of serum homocysteine. I have never had any CSF testing done.

I found this paper on Cerebral Folate Deficiency http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03185.x/full
It's interesting that they talk about milk as a possible issue. They also mention mitochondrial issues. Folinic acid is the recommended treatment, which is interesting as I did find I tolerated that much better than methyl folate.

I am currently trying to work out the whole issue with dairy. I also may try folinic acid (as calcium folinate) again. The only things I take at the moment are B2 Riboflavin 6.25mg once/day and recently added D-Ribose back in for a trial. In November I have an apptmt with a Neurogeneticist to be investigated for any possible inherited mitochondrial disease/disorder. Hopefully I might get some more detailed biochemistry tests...sigh! ( I had to see a second Neuro & put forward my own case for him to refer me on for this). I am getting tired of having to push all the time to get help!