But in the field of CFS/ME, things are different. This group of individuals tends to be extremely sensitive, so that amounts of food supplements large enough to have a drug effect will often imbalance and aggravate their condition. Such sensitivity frustrates practitioners, feeding into stereotype that we are malingerers or difficult patients.
The Yasko protocol, as well as the simplified version of five supplements, takes seriously the maxim of Mies Van der Rohe: “Less is more.” (Van der Rohe was an architect whose aesthetic of sleek lines and lack of decorative embellishments such as columns, volutes, cornices, led to the development of modern architecture in the twentieth century.) Through her work with autistic children, Amy Yasko came to the conclusion that very small amounts of many supplements are a better, safer way to support natural processes in the body than normal to large amounts of a few chosen supplements. And those of us with CFS exploring the methylation protocol have found her advice most apt.
The most common mistake newcomers make is to be overly enthusiastic. We plunge in with hope and gusto, taking the full amount of recommended doses or even more, convinced that, from what we've heard, we will finally resurrect the good life we used to live.
I was one of those enthusiasts who disregarded the warnings. I received my genetic testing results at the end of 2006, and after a few weeks of doing Phase 1 to lower the drain through the transulfuration pathway, I plunged into Phase 2, the methylation protocol. I ordered six bottles each of Folapro and Intrinsi B-12 so I could get my practitioners discount from Metagenics! I tried to divide the hard tablets into quarters with my pill cutter, and finding that at least half of each pill would crumble into powder, soon decided to take ½ of each pill instead of ¼. A few months later, I talked to Holly, a friend of mine whose doctor put her on a simplified version of the simplified five and learned she was taking a whole pill of each. Out went the bothersine pill cutter; into my daily supplement tray I plopped one whole Folapro and one whole Intrinsi B-12.
Some of us will reason that if a vitamin company makes xxx mcg as a standard dose then that ought to be right dose to take. Otherwise why would they recommend it? A skeptic might argue they just want to sell more pills. But much of the time, higher doses than listed on the bottle were used in research studies. The FDA makes it hard for us consumers by gagging supplement companies’ freedom to publish information on appropriate dosing for any medical condition. So while someone with a genetic inability to convert folic acid to 5 MTHF might need one Folapro a day, autistic kids and people with CFS/ME who have partial methylation blocks need only ¼ of this amount a day. Taking more than needed pushes one step in these complex interwoven cycles too fast, creating backlogs that flood or jam other steps.
My friend Holly had the experience of intense detox with such intolerable moods that she had to stop the protocol after two months. I bumbled along feeling great for months, until I crashed in October 2007 with the Worst Relapse Ever. I don’t know if my high doses of these products played any role in that crash, but I do know that every week, someone comes onto a CFS discussion groups complaining of intolerable symptoms, and has to cut back.
Many sensitive individuals work their way up to the recommended doses over a period of 1 to 2 years. They start with the tiniest amount they can pick up -- what sticks on the end of a toothpick. Or they dissolve liquid drops in a large glass of water and take a teaspoon.
I’ve been gradually able to increase my tolerance for B-12 and am now pleased to report that I am taking 3 sublingual Hydroxy B-12 tablets a day. I also introduced a tiny amount of SAMe into my protocol. Here’s how:
Using a Braun coffee grinder, I powder a 16 day supply of Folapro and Intrinsi B-12 (4 of each.) Then, having calculated that 1/8 tsp of phosphatidyl serine complex is my daily dose, I multiply 1/8 tsp x 16 days which gives me 2 tsp of this powder. I add this to the mix. (Oops, I just realized I had initially miscalcuated and was adding twice as much; the recommendation is 100 mg of PS together with the naturally occurring amounts of PC and PE. Good, I will save some money!) Four weeks ago I started adding a tiny amount of SAMe to this mix. The first time I opened a capsule, took a large pinch, and mixed it with the powder. The second time, I poured in a half capsule. And just a few days ago, when I mixed up a new batch, I added 1 ½ capsules. Two weeks from now I’ll double that amount, as long as I seem to be tolerating it well. Then I add enough of another filler (salt, sugar, peanut butter – it doesn’t matter but I prefer something granular) so that each day’s dose fills a small plastic taster spoon and the bitter taste of the supplements is masked.
I have heard of people reducing doses by pricking gel capsules in order to squeeze out a partial dose, and by freezing capsules so that can be cut in half.
What else do people do to divide the recommended supplements? What has worked for you? And what have you found unworkable? Add your comments below. Don't be shy.