Freddd- I'm not hearing from Rich (I hope he's on a fabulous vacation), and I just re-read your last post to me. I'm guessing you saw my post #182 and are waiting a bit. This time what I 'heard' when I read it is that adding the vitamins and adding the 2 more forms of b12 might be helpful at this point. My only question is, in terms of knowing what's doing what, would it be better to stay strictly on the protocol I'm on (adding just the vitamins) for a full month, before playing with more b12, and then later with metafolin? Oh - and for potassium, calcium citrate, and A and D, is it important to buy "5-star" brands? I'm going to stay on the holistic health multi.
Hi, Madie.
Sorry to be so slow in responding. I haven't had as much computer time lately, because I've been trying to finish a house remodel.
In response to your question, I don't have a very solid answer. I think it depends on your goal. It sounds as though you want to nail down which supplement does what. If that's your goal, then I think that going slowly and adding one thing at a time would be the way to go.
It's difficult to give a blanket statement about which supplements would be beneficial to take, because everyone has a unique set of inherited genetic polymorphisms, as well as a different nutritional status, different degrees of gut function, and different comorbidities (toxic mold, Lyme and coinfections, heavy metal toxicity, viral and other bacterial infections, etc.)
As I've written in the past, there's no good reason to believe that the simplified protocol I've suggested is the optimum protocol for supporting the partial block in the methylation cycle in any particular individual, but it did show significant benefit for about two-thirds of the women who met the diagnostic criteria for ME/CFS in the clinical study conducted by Dr. Neil Nathan, M.D., and myself.
When lab testing is feasible, I favor doing it, and that can give information that will enable a more focused approach. As you probably know, the simplified protocol was extracted from the full treatment program of Dr. Amy Yasko. She does extensive testing, including both genetic and biochemical testing on each person, and recommends tailored treatment for each, using a large number of supplements, which recently have been combined into several combination supplements. Her supplement list has included methylcobalamin, adenosylcobalamin, carnitine fumarate, and I think probably everything Freddd is recommending, for a long time, and she recommends various of these depending on an individual's test results.
The simplified protocol is a compromise, intended to lower the cost and complexity of this type of treatment, but inevitably a compromise is going to lose something, and the full protocol will help more people than the simplified one does. It is probably also true that a better simplified protocol could be put together. The problem is that we have so little clinical testing data on a carefully selected set of patients. Projecting from known biochemical and genetic theoretical understanding is helpful, but it only goes so far. Extrapolating from the anecdotal experiences of one or a few people can also give some insight, but it's important to keep in mind that we are all unique, and that a treatment with high dosages of active forms of vitamin B12 will address many different B12-related disorders, not just ME/CFS alone. So when something helps an undefined group of people, it's difficult to extrapolate that confidently to people who have defined ME/CFS.
I prefer to proceed cautiously, because I have had the experience of hearing from a few people who had to go to the E.R. when they tried the methylation protocol, even though it consists only of nutritional supplements. It appears that these people had comorbid conditions in addition to ME/CFS. This is one reason I insist that people need to be monitored by a physician while on this type of treatment.
I wish you success, however you decide to proceed with your treatment, and will be interested to read your updates.
Best regards,
Rich
