My friend Bonnie, with Lyme-induced CFS, is intriqued by the methylation protocol. But she is confused about how to get started. So I am dedicating this post to her (and to all of you out there whose cognitive abilities have been damaged by this illness.) A little history. And why not? I’m an historian The first group of protocols to address methylation cycle issues was developed by Dr. Amy Yasko. Working with autistic children, she found that by correcting methylation imbalances, she could start turning these kids around. She also began testing for genetic variations. This way she could individualize treatment and understand why some kids got worse on the same product that helped others improve. Her protocols became increasingly complicated, with lists of over 100 supplements to try and with loads of expensive tests to take regularly to monitor progress.
Rich to the rescue. He noticed that many mothers of kids with autism had CFS. I happen to be one of them. My daughter, Lisa, was born with infantile autism, although she was not diagnosed as autistic until age 3 (in 1982). As the autism spectrum disorder became subdivided, Lisa’s diagnosis was changed to PDD (pervasive developmental disorder). Another friend of mine with a bad case of a dysautonomia known as POTS (which overlaps with CFS – see my post from January 5, 2009 titled My two most disabling symptoms) has two boys with Asperger’s. I realize this isn’t a scientific sample... But hey, when we understand things in terms of our own experience, it sticks.
Rich began to investigate the CFS-autism spectrum connection. On a yahoo discussion group known as CFS Experimental, he suggested that people with CFS start following the Yasko protocols. Some of us tried. We purchased her books and DVD lectures. We did the tests. We bitched online about how complicated it all was, how we couldn’t understand it. A few rookies read everything and became ‘experts’ on the Yasko protocol. I backed off in frustration because I developed a major eye problem – a macular hole and retinal detachment with a possible loss of vision – and had to go into surgery. The next year I had five eye surgeries. And when I came back to Yasko, I found that Rich had come to our rescue. He had been reading our posts, corresponding with many of us, and looking over our test results. He decided to boil down the whole complicated mess into five basic supplements. He put forth his ideas and invited people to try them.
Here is Rich’s basic simplified five supplements: 1. ¼ Folapro (made by Metagenics) 2. ¼ Intrinsi B12/Folate (made by Metagenics) 3. 1 or 2 HHC Neurological Health Formula note: Rich recommends sensitive individuals start with ¼ and work up 4. 1 or 2 Phosphatidyl Serine complex (from Vitamin Discount Center ) 5. 1 or more sublingual hydroxycobalamin tablets (Perque Activated B12 Guard)
What is in these supplements? What makes them special? Folapro is a form of the active folate in the methylation cycle called L-5-methyl-tetrahydrofolate (abbreviated 5-methyl-THF). Intrinsi B 12/folate contains a mixture of two active forms of folate (more 5-MTHF and some 5-formyl-tetrahydrofolate, which is apparently very difficult to find), a little folic acid, some inexpensive cyanocobalamin (the normal form of B12) and some intrinsic factor (which helps the body use B12). Neurological Health Formula is a multi vitamin specially formulated by Dr. Amy Yasko for her patients. Phosphatidyl Serine complex has the normal mix of phosphoralyted serine, choline, ethanolamine, but it also has some plant-based essential fatty acids such as GLA and LA from flax oil. Perque Activated B12 is the highest dose (200 mcg) and least expensive sublingual hydroxycobalamin around.
Variations on the Simplified Five A little internet research shows that Metagenics also sells a product called ActiFolate which contains the same 3 folates that are in Intinsi-B12/Folate (800 mcg of combined folic acid, 5-methyl-THF and 5-formyl-THF) but doesn’t include the B12 or the intrinsic factor. Dr. Sara Myhill in the UK has picked up Rich’s idea and devised her own simplified five protocol. She recommends • Hydroxycobalamin 5,000 mcgms daily (or cyanocobalimin "shot O B12") • Methylcobalamin 1mg sublingually • Methyltetrahydrofolate 800mg (ActiFolate) • Pyridoxal 5 phosphate 100mgs (50mgs twice daily) • Glutathione 250mgs daily • Phosphatidyl Serine 200mgs (100mgs twice daily) – BioCare Note that Dr. Myhill’s protocol doesn’t include any intrinsic factor. The dosages of folates, B12, and methyl donors are significantly higher. Her protocol also includes pyridoxal 5 phosphate, the active form of Vitamin B6 and oral glutathione.
There is some debate as to whether P5P is really necessary. (See the research summary by Mark Kaye at Metagenics arguing that it is not, and the research summary by Ray Sahelian arguing that some individuals do not make the conversion due to their genetics.) As far as I know, people with chronic fatigue have not been widely tested for this genetic variation. Several individuals on the Yahoo Yasko group have suggested that the presence of heavy metals blocks their conversion of B6 to P5P, so they do better taking the active P5P form.
In Rich’s simplified five protocol, the Neurological Health Formula includes 2.1 mg per tablet of B6 in the active form of P5P. The RDA for B6 is 2 mg a day; the safe upper limit is 100 mg a day; toxicity in the form of reversible nerve damage can occur at doses of 250 mg a day. I’ll talk more about B6 in a future post.
If you decide to start the Simplified Five protocol, you might want to get a baseline of how your methylation is working. The most thorough test is a methylation panel ordered through Vitamin Diagnostics Inc, a receiving lab in New Jersey that works with a Dutch company that actually does the testing. (Yes, they send your blood over to the Netherlands, so it takes 1-2 months to get back the results.) The cost is $300 and must be ordered by a licensed physician.
After testing, introduce the supplements slowly, working up to the recommended dosages. Start the B 12 after you’ve started all the other supplements. Don’t take extra sources of folic acid (Read labels on foods and vitamin pills).
You might want to contact Rich Van Konynenberg to share your methylation panel test results and your experience with his protocol. Happy pill popping!