Lena, it's so great to hear about your progress, you have definitely pulled ahead at 70% and are inspiring me to keep on fiddling.
I originally arrived here to report that I tried the Enzymatic Therapy mb12 this morning (I'd only been taking the Jarrow) and noticed a distinct difference. Smoother, more refined, and one 5mg dose (since I have to stuff five in my mouth for that, I thought I'd start that way, with the other 10mg by Jarrow taken later. I'm wondering now if I use the Enzymatic Therapy brand, if I can reduce my dosage because at least on this one trial, it feels more effective to me. "I feel just like a person," I found myself saying, after only 5mg of the ET mb12. A weak person, but I'll settle for person. And even my weakness seems better.
Of course I can't ignore other variables, such as the fact that I just re-upped my methylfolate dosage for a total of 3200 mg/day, and I got my usual 10-day startup ordeal, although I will say the quality of my startup has improved, much less full whiteout and the nausea was mostly just in the form of lack of appetite. Something else I am tinkering with is taking more mb12 in the afternoon, after my morning dose wears off. This plays a little hob with getting to sleep, but since my sleep is something that has improved a lot with the b12s, acupuncture, improved sleep routines, and better sleeping conditions, I figure I can use some of the same tactics to work my way back to earlier and longer sleep while taking the afternoon mb12s. We'll see.
Adding ubiquinone to my morning and evening doses seems to be making a serious difference. I'm trying doses like 100 and 200 mg a pop. My heart doesn't go so crazy and it seems to me my energy level goes up and my brain fog down. I recently ran out and was kind of experimenting to see how much difference I'd notice. It may be obscured by all the other variables (new mb12, upping the methylfolate, spring tides, whatever), but yeah. There's a big difference for me adding that.
On the other hand I have noticed no difference between l-carnitine-fumurate and acetyl-l-carnitine, so I'm thinking I might settle for the cheaper acetyl-l-carnitine. On the third hand, reading your advice to Lena, Freddd, I'm thinking maybe this is an area I could fine-tune also, experimenting with brands as well as types. Another project for another day.
I have reached my 6-month assessment point on this protocol, and while I am nowhere near 70% - nearer to 40 or 50 - I intend to continue with it.I appreciate others' straight reports of what goes on for them, because now my brainfog is lessening (thanks to the b12s and acupuncture and also it seems to me ubiquinone), I'm more able to tinker with this protocol. I still have bad OI. I still have bad PEM. I still have brainfog: not as much, but it's still hard for me to do analytical/intellectual stuff without feeling as if I'm bleeding out the ears (borrowed expression from Koan, very apt). My neuropathies have definitely improved and keep improving, as does the brainfog. Encouraged by all of you, I'm just going to keep upping my dosage and tinkering with this protocol and see where I can get. (I'm combining it with Chinese herbs and acupuncture these days). Thanks to Freddd and all of you who are contributing useful information in this big unwieldy experiment we are all working on.
And Lena, I'm tickled that you are now driving yourself to the grocery store! Remember when it was an ordeal just for your husband to take you to dinner?