ik heb geen puf om het te vertalen, sorry voor de mensen die geen engels kunnen lezen
ik kwam het tegen op een amerikaans CFS forum, mensen met CFS kunnen ook een foliumzuur tekort in de hersens hebben ondanks een normaal foliumzuur in het bloed!
het slikken van gewone foliumzuur werkt hierbij niet, maar wel het slikken van L-methylfolaat (5-MTHF) / Metafolin (= merknaam)
online is er -engelstalig- meer info over te vinden wat betreft dosering en werking.
onderstaande info komt dus rechtstreeks van een forum:
_______________________________________
Folate receptor antibodies and cerebral folate deficiency
I wanted to pass on something brand-new in biomedical autism research, which might or might not apply to some cases of ME/CFS: folate receptor antibodies and cerebral folate deficiency.
From what I understand, the presence of these antibodies impairs transport of folate from the blood to the brain. As a result, brain folate levels can be low while blood levels are normal. The only way to know for sure is to measure folate levels in the spinal fluid, but the presence of these antibodies in the blood is strongly correlated with CSF levels and less invasive to measure.
Low folate levels in the brain can result in an array of neurological dysfunction. The good thing is that this condition is treatable with very high dose oral folinic acid (Leuvocorin) and with a dairy-free diet. These measures allow to restore folate levels in the brain.
The reason for a dairy-free diet is that milk, especially bovine milk, includes analogs to human folate receptors. This is believed to be the trigger for this autoimmune condition, and of course results from a damaged gut-blood barrier, which is believed to be at the root of many autoimmune problems anyways (and one candidate as the agent damaging this barrier is XMRV, in my personal opinion).
Anyways, for those wanting to research it more, here is some reading, but there is ton more:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715943/
Dev Med Child Neurol. 2008 May; 50(5): 346–352.
A milk-free diet downregulates folate receptor autoimmunity in cerebral folate deficiency syndrome
Vincent T Ramaekers, MD, Jeffrey M Sequeira, MS, Nenad Blau, PhD, and Edward V Quadros, PhD*
http://www.ncbi.nlm.nih.gov/pubmed/18461502
Neuropediatrics. 2007 Dec;38(6):276-81.
Folate receptor autoimmunity and cerebral folate deficiency in low-functioning autism with neurological deficits.
Ramaekers VT, Blau N, Sequeira JM, Nassogne MC, Quadros EV.
http://www.autismone.com/content/remark ... -treatment
New data shows that many children with autism and their parents produce auto-antibodies to a folate receptor which can lead to a condition called Cerebral Folate Deficiency (CFD). Multiple studies have shown CFD can cause autism, seizures, mitochondrial disease, motor abnormalities or other neurological problems. Dr. Rossignol will review recent studies and research on testing for these antibodies and innovative treatments that are typically covered by insurance. He will also discuss his current IRB approved study he is conducting with Dr. Richard Frye. Case studies treated by Dr. Rossignol over the last 9 months on newly diagnosed children, tough nut children and, surprisingly, their parents will be presented. This technique will potentially be invaluable for prevention, early intervention, and treatment of autism.
I wanted to pass on that I have been found to have significant levels of folate receptor auto-antibodies and wanted to post my response to almost four weeks of treatment with Leucovorin, a high-dose folinic acid drug.
I am posting this in this section because I have not been diagnosed with ME/CFS. However, I still want to notify you guys, because my doctor said he has patients with CFS who have these antibodies too and have been greatly helped by Leucovorin, and I also have many symptoms in common with ME/CFS. I also have a child with autism, who also has these antibodies. My other child who is neurotypical does not have them. My diagnosis is depression with IBS. I have depression, multiple food sensitivities, low blood pressure, frequent heart palpitations, night sweats, dysbiosis, dizziness, low stamina, and fatigue. It all started suddenly in 1995. I have not been tested for XMRV. All my regular blood work always looks good, including thyroid and adrenals.
Due to my IBS and food sensitivities, I have been on a dairy-free gluten-free diet for over four years (also have eliminated many other food items). I have also been on a comprehensive regimen of supplements for years, including methyl-B12 shots. I am also on Zoloft which has been the greatest help so far. Going on a gluten-free/casein-free diet was very helpful too, especially decreased my anxiety levels a great deal.
But back to folate receptor antibodies:
These receptors are found on the brain choroid plexus, and allow the transfer of folates from the blood to the CSF. They are also found in the intestines (edit: I think I was wrong there, I don't think there are in human intestines) and in the thyroid. Having these autoantibodies means that a portion of these folate receptors are blocked and this decreases the transport of folate into the CSF and other areas. That means that even with adequate folate intake and adequate folate levels in the blood, the folate levels in the brain, thyroid and intestines can be lower than normal. This results in not enough folate for the production of neurotransmitters, not enough folate for the production of glutathione, etc... with negative consequences for neurological function and immune function.
Treatment for this condition is high-dose folinic acid, about a hundred times the recommended daily intake. This is available as the drug Leucovorin. Plain folic acid is not recommended in this condition. The other part of the treatment is a dairy-free diet, because milk contains folate receptors that are analogs to human folate receptors and thus milk intake upregulate the production of autoantibodies.
And now on my Leucovorin experience:
I started at 6mg daily almost four weeks ago. I saw an immediate effect as intense relaxation and feeling very lightweight. Instead of having to drag my heavy weight around the house, I felt like I was floating above the floor. This was followed several hours later by heavy mood swings and irritability. The next day for the first time I woke up early feeling rested and clear-minded, as opposed to brain-fogged and sleepy. I then had a crash with intense sleepiness and brain-fog, absent-mindness and forgetting everything, also a lot of thirst and heart-palpitations. This was better already the next day.
I now am taking 50mg a day divided in two, which is my target dose (and as I said I have already been dairy-free for years). Each time I increased the dose I saw some very temporary side effects as listed above. But the list of sticking benefits so far is the following:
- Feeling very lightweight and very relaxed, no more physical fatigue
- Easier to breathe deeply and stand up straight
- No need to sit down every few minutes
- Waking up rested and clear-minded
- No crash after stress or arguments
- Stools looking more normal, flatter belly