I have some posts that should have been written and published recently, but my brain just won’t have it. I’ve been trying to follow the methylation protocol recommended for people with the MTHFR mutation that I have, and it has been rough. When your body hasn’t been getting enough folate to fuel the methylation cycle, you see, toxins that your liver should be filtering out get stored inside you – toxins like heavy metals (lead, mercury, cadmium) and even the synthetic folic acid added to our foods that many of us cannot metabolize. When you start giving your body the bioavailable form of the folate it needs for methylation, all of those toxins start coming out so they can be processed.
And they wreak havoc on your body in the meantime. I’ve had some excruciating muscle pain that has driven me to take more than one Epsom salt bath in a day for relief. But the cognitive effects are just as disabling. I’ve always had trouble with my mental focus, but I’ve been so scattered and unfocused that I can forget what I’m doing in the middle of a task. I’ve sat down to write blog posts and been completely paralyzed by a loss for words that make sense when strung together. And the confusion – oh, the confusion. I’m an intelligent woman, but some of the simplest things can baffle me lately. I have to read things four or five times before they make sense. And when we went for our usual weekly grocery shopping trip on Saturday, the overstimulation of the “OMG we’re getting a snowstorm” crowd was enough to leave me feeling a discomforting vagueness and detachment from myself and my surroundings.
It got bad enough that I sent Tom to buy me the form of niacin known as nicotinic acid, which soaks up the extra methyl groups floating around in the case of overmethylation. I popped these suckers like candy that night. It stopped the reaction, but came with its own (thankfully temporary) side effects – flushing and itching. My face was bright pink, and my usually benign rash flared up and itched like crazy. Neither effect lasted longer than an hour, and I had relief from my side effects of jump starting the methylation process.
But I’m going to go against the “go low and slow” crowd that suggests stopping the methylation protocol completely, resetting with niacin whenever you face symptoms, and starting over at an even lower dose once you’re symptom-free again. I’ve been talking with a woman who has the same homozygous MTHFR A1298C mutation I have who just pushed through the first two months of methylation hell, and four months later says it was so worth it because of how much better she feels. Her baseline CFS symptoms were even more extreme than mine, not even having sensation in her fingertips. Now she has feeling back in her extremities, and both the pain and fatigue has all but vanished for her.
I want to be well again. I haven’t been well for a very long time. But I now have hope that I might be able to go to next year’s conferences without carrying a cane for support. I have hope that maybe I won’t need to medicate myself to the gills just to get a good night’s sleep. I have hope that I may even be able to reduce the dosage of my psychiatric meds, if not come off them completely. I just have to suffer for it first.
I don’t do suffering well. I whine and moan and complain. I have low tolerance for pain and discomfort. But I have to do this.
I’ve started back on the methylfolate and methyl B-12 today. Get the process started again. Next Monday, I will dose myself heavily with nicotonic acid so I’ll be functional for Christmas Eve and Christmas Day, and then I’ll get back on the methylation protocol afterward. I will suffer as much as I can tolerate, and if I have to go and be out in the world, I will utilize the temporary escape offered by the niacin for a day or two before getting back to the suffering. And then one day, maybe in March or April, I won’t be suffering so much anymore. And then, maybe, I won’t be suffering at all. I can have some semblance of the normal life I haven’t had in years.
It will be a miracle. Is it too much to hope for? Possibly. But I have to try.
Read my Big Fat Medical Update for more details.