Fiddle, Fiddle, & More Fiddling (a.k.a. “What is a maintenance dose?”)

Pic of the day - Cajun Music Party

THE DOSES

This is the distilled down description of what I did, without the explanation, for those who are coming back to this post and just want a quick reference of the numbers. Remember to talk dosing and timing over with your doctors!

Note:
mg = milligram
mcg = microgram
1 mg = 1000 mcg

In the Early Days

1 mg 5-L-methylfolate daily in morning
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin daily at evening

After Injury

2 mg 5-L-methylfolate daily in morning
1 mg 5-L-methylfolate daily at lunch
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin daily at evening

When Healthy

400 mcg 5-L-methylfolate in morning twice a week (usually M/Th)
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin at evening once a week

THE STORY

I’ve been taking extra methylfolate for a few years now. I started out following the general ideas from Dr. Ben Lynch’s MTHFR site, but without following his protocol (since that meant buying the vitamins that he sells, and I couldn’t find information about them anywhere other than on his site). So I’ve been cobbling things together on my own, through experimentation and how my own body reacts. This is absolutely the hard way to do things, but I haven’t found a doc who knows enough about it to give me advice. Dr. Lynch makes one very important point in his protocol:

“Now – the supplement recommendations need to be tailored to the individual – again – regardless of which genetic variants you have. Working with a physician trained in this area of medicine is key. The recommendations of supplements are merely suggestions and ones that I may recommend to a patient or physician. They are not flat out must-haves nor must one take all of them.”

Personalize it. Tweak. Fiddle. Refine. Change things up. Experiment. Customize. Listen to your body. Here’s what I’ve found myself doing over the past few years, and what I’m doing now.

When I started, I’d been very sick for a lot of years. Decades. So, my body was in pretty bad shape, and had a lot of healing to do. I wasn’t sure at that point if the methylfolate would actually help, or what was the right dose for me. I started out with small doses (400mcg), and couldn’t even tell I was taking them, so I bumped it up, and up. I ended up taking a daily dose of about 1 mg (1000 mcg) for the first year or so. For a while I felt amazing. Then I started to have some of the side effects mentioned on Dr. Lynch’s site, so I started mixing things up, and added in some methylcobalamine (methyl-B12).

I was feeling decent, but then I had another illness, and felt crummy. I found that when I was sick, I needed a little extra. I bumped the dose up to 2mg (2000mcg), and when I felt better, I bumped it back down to 1mg/day. Then, about two years ago, I had a major injury. It took me a few months to even think of it, but I found again I needed to take a LOT when I was healing from the injury! I ended up taking 3mg a day for a while! And I had to take it all before noon, or it kept me awake at night. I split the doses 2mg when I woke up and another 1mg at lunch. For the record, while this is an enormous amount for me, this is nothing compared to what is typically prescribed by docs. One prescription form of methylfolate is called Deplin, and the lowest dose given for it is 9mg, THREE TIMES what I was taking at the highest level. During this time, I took another methylcobalamin at night, since that was supposed to help with sleep. I cringe at the thought of taking prescription levels of this, and have read innumerable comments from patients on Deplin in various online forums.

I was in physical therapy for almost two years, but finally ‘graduated.’ That’s when I really started to have trouble with the methylfolate. I had settled into a combination of vitamins that worked for me, and I felt pretty good most of the time. But now I wasn’t feeling good. I’d take my vitamins, and feel worse. I’d feel so tired, I’d take an extra methylfolate sometimes just to try to come up with enough energy to get through the day. Then I’d be so severely fatigued that I was convinced I had been glutened and that this was in reaction to hidden wheat in my diet. I was baffled trying to find how I’d been glutened. Sometimes I was so fatigued that I would forget to take my vitamins in the morning. Eventually I noticed that when I forgot to take my vitamins, I actually felt BETTER. I did some digging online and found a new-to-me post from Dr. Lynch about exactly this happening to people, where their bodies would start to have a reverse reaction to the methylfolate. The important part for me was way at the end.

“Just think of a bell-shaped curve. Before you started taking methylfolate, you felt terrible. You began taking it and started to feel good. Day after day goes by and you continue to improve. In time if the above things are not corrected, you will begin to slide down the other side of the bell-shaped curve.”

OK, so I stopped taking methylfolate. Briefly. After a few days, I started to feel awful again. I’ve found that right now, if I take even a small dose of methylfolate every day, I feel awful. But if I don’t take it for 3 or 4 days, I feel awful then, too. So right now, I’m in the process of trying to figure out what is the right maintenance dose for me. There’s these ideas in healthcare of therapeutic dose (what is needed to treat a problem), loading dose (kind of how to get to the therapeutic dose faster), and a maintenance dose (what it takes to feel OK when you aren’t sick anymore but still need at least a little of the med).

Loading Dose vs. Maintenance Dose

So, what I’m doing currently with respect to methylfolate (which will probably need to be tweaked again later) is this. I take the smallest dose I can find (400 mcg) twice a week, and 1mg of methylcobalamin once a week. I exercise a lot now (which is a big difference from what I could do before), and I eat a lot of green leafy vegetables. As I eat more of those, I may need less of the methylfolate. We’ll see.

Now, it’s important to mention that these are not the ONLY vitamins I take. There are several others which my docs recommended as supplements because of my celiac and gluten-free diet. There are vitamins I take for other conditions. They all fit together and there may be interactions between them. Obviously, there are also other conditions that can … intersect with MTHFR. For example, we know that having one copy of the MTHFR defect is protective against some kinds of cancer. That’s a good thing, right? And it helps explain why MTHFR defects are so common and wide spread. But this also could mean that there are possible issues for methylfolate supplementation for people who either have or are at risk of having cancer.

I try to bring up these various issues with my doctor when I have appointments, and I try to sort things out on my own as much as possible. I know, not everyone can do that. It’s really tricky. Part of the problem is that we just don’t KNOW what we need to know yet about this. It’s becoming obvious in the research literature that MTHFR genetic status and testing is important in many many conditions, but this isn’t widely known among clinicians, and what to do about it is even more obscure. Talk to your docs, but don’t leave this entirely in their hands. Join forums at MTHFR.net and at Patients Like Me, where many folk generously answer questions. Don’t trust all those answers, but use them as a starting point to learn more, research, and for what questions and conversations you should be bringing to your own doctors.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s