Turns out the solution was much more insidious.
So, many many months ago, I read about the methylation cycle and how an engineer came up with a protocol of pills and drops to help improve the CFS symptoms in his wife. This is now available on the internet so I downloaded the info and bought all the pills and drops.
Now I have pretty bad brain fog as one of my symptoms. I also forget things constantly. Since hubs wants nothing to do with my care, I'm on my own managing my medication/supplements. I have them all lined up on the counter. I have written on the lids with a sharpie how many pills I'm supposed to take. The position of the pill bottle in the lines indicate what time of day I'm supposed to take them. In theory, I should be taking a pile of pills at each meal with the ones in the fridge between meals. What happens in reality is that I take my morning pills most of the time since that includes my pain meds (anti-inflamatories). I feel like crap if I forget them and yes I have forgotten them on more than one occasion particularly if I'm thrown off my morning routine. Most days I forget to take everything else. Sometimes this is even on purpose. I HATE taking pills. It annoys me and I often gag on the things.
Okay, so months and months after ordering the methylation pills and drops, I decide I should start taking them. I've lost the instructions but I've got the doses written on the pill caps. So I should be fine right? In typical fashion I take the drops in the morning: B12 and methylmate B. Occasionally I remember to take the pills: folate, neurologic health and phosphatidyl serine complex. By this point, I've forgotten everything I read regarding this stuff. I'm also taking my regular pile of supplements without remembering why I'm taking any of them.
So here I am. I've been taking the drops fairly regularly for a couple of weeks. Hubs has moved the potassium pills out of my neat lines of bottles since he is taking them as well. I don't notice. Occasionally I remember to take the methylation pills and now I have a raging headache and muscle spasms and I think it is the food I ate the night before. I don't want to take my prescription pain meds since that will knock me out for at least 24 hours. I always leave those for the last line of defense. So MSG toxicity? I took a dose of bentonite clay. I started to feel better within a half hour. Okay. Good. I'm not going to die. At this point, I remember that this type of headache/muscle ache combo is usually a potassium shortage and I had just run across an article saying that the US RDA for potassium is over 4000mg/day so I pop 400mg. This time it took an hour or so before I felt somewhat better but I still had a slight headache. For migraines I have used large magnesium doses with some good results so what the heck. I haven't had any magnesium since my last blood test in December so 1000mg down the hatch. Finally, at one in the morning, I'm feeling better. No more headache. No more muscle cramps. No more pain. I'm just tired and exhausted from the ordeal. I still am today.
However, it wasn't until Gaston sent me an email about detoxing from the methylation supplements that it made sense. It was one post from a forum thread:
"My guess is that because I'm not taking any of the other stuff anymore- B12, metafolate, etc- it [the pain] wasn't as bad but I still have enough of that stuff in my system to require more potassium than a normal person."The person had had a horrible pain reaction from stopping the methylation protocol. S/he had this problem before and landed in hospital from the withdrawl. So here I am dabbling with the protocol. Often forgetting to take pills and/or drops. Not following the protocol and I totally forgot to take ANY potassium with it. So the Chinese food chain is off the hook. It was my own damn fault for not reading the f**ing instructions before going back on this stuff. Also for not looking into the protocol again to check for reactions etc. I also feel kinda stupid to think this was fairly benign. How could I forget that my system is hypersensitive to EVERYTHING!?! I mean seriously! I take half doses of the lowest dose pills for my meds. I'm always slicing and dicing pills up into little tiny bits. Why wouldn't something that messes with my system not screw me up?
So to borrow from Patrick once again:
Just don't do it. Research EVERYTHING! Here is the link to the simplified protocol: http://forums.phoenixrising.me/index.php?threads/input-requested-on-possible-changes-to-simplified-methylation-protocol.17712/#post-270320
Here is the background info which I haven't wadded through yet:
http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/#post-198780
And if you decide to try this, TAKE YOUR POTASSIUM!!
As you probably read on my blog, we have been gradually starting the methylation protocol for Jamie, and I do think it is helping. Rich VK suggested starting slow, with just one or two of the supplements and moving into it gradually and that has been working well for Jamie. Also, note that Rich says those with low cortisol should avoid one of the supps (this is at that link you provided as well) and sub Lecithin instead - most people with CFS have low cortisol.
ReplyDeleteInteresting findings for you! Thanks for sharing and I hope it continues to help you.
Sue