Earlier this month I found out I had another new diagnosis, another piece to my chronic illness puzzle.
I found a doctor with experience in the area, and spent three weeks gathering the past 18 months of my medical records and filling out their extensive forms.
And this afternoon, I shredded all of it.
I found out I do, indeed, have the MTHFR gene mutation. Two of them, two copies of the C677T mutation, or MTHFR 677 TT, put another way (homozygous). This is not the worst case scenario, which would be one C677T and one A1298C mutation. What it does mean–as far as I can tell–is that while people with only one copy of the C677T mutation might have mild problems or generally do just fine, people with two copies are at a higher risk for the associated diseases. And it’s a reason why I cannot detox properly.
At the biological level, it means my body has trouble converting ordinary folic acid–a form of Folate/B9–into a form that I can use. And because properly converting folic acid to use, is what allows you to properly convert B12 to use, I have trouble there, too. (Or at least, I’m supposed to…) Because my genetic mutations cause my body to be less efficient, I don’t make enough methylfolate. You need methylfolate to use folic acid, and you also need methylfolate to use B12 (that is, to convert regular-cyanocobalamin-B12 from various sources, into the useable-methylcobalamin-B12).
Depending upon how much you randomly know, you may have noticed that says I cannot convert the forms of Folate and B12 that are in everything: Folic acid and Cyanocobalamin. They’re in everything because people are supposed to be able to convert them and use them. But I can’t do that very well, so if I consume things that have these, such as in vitamins or enriched foods, I am going to have a build-up of these unusable-to-me forms of vitamins, while never getting adequate amounts of the ones I can use.
This is why taking a multivitamins makes me sick. Even when I was taking my B-complex, I always had to chop them into pieces and only take them a few times per week to avoid sickness. Now, FINALLY, I know why this happens!!
All of this is supposed to mean I should have elevated levels of some things and low levels of various other things floating around because I can’t convert them properly… And these excess levels can cause all sorts of problems. But, according to my recent bloodwork–particularly the homocysteine–everything is within normal limits. It’s kind of astonishing, really.
To say I’m appreciative of my body finding ways around this, and making me crave food that would give me what I need, is an understatement. Go body, go! I will help you.
You know what medication makes this worse? Bactrim. This probably helps explain why my liver was fine until I needed Bactrim to finish killing off the bartonella infection. Should I need it again in the future, I will know to take milk thistle or something similar, to offset the effects, BEFORE my body gets too stressed…
And that’s pretty much how I’m going to approach this entire thing. I’m going to learn about it slowly and do what I can do offset the effects–symptom management, palliative care–and let my body continue doing what it can for as long as it can. I may do further research into mild supplementation, but mainly, my outlook is that this is another quirk I get the OPPORTUNITY to manage. Of course I reserve the right to change my mind at any time, but:
I am not going to go into “treatment mode.”
And it took several weeks of lamentation for me to really understand I had that choice, and that it wouldn’t be the same as suicide. As one person put it,
“The media constantly bangs on about how to live. . . They tell you how to preserve your body surgically and chemically so you look younger, slimmer, healthier. Why? Nature is perfect in herself. Every season is beautiful.“
To be suicidal is to want to die and take actions to facilitate it. But I want to live. It just so happens that humans are subject to disease and death, and if I continue on the path which I have for the past almost-thirteen years, I will not be able to enjoy my life, the only one I have. I am going through a whirlwind of emotions with this, and if you think you’re able, you can take the ride with me.
I don’t think I’ve ever been so scared, or happy, in my entire life. To be continued…
♥ a rainbow at night