Wednesday, August 26, 2009

Oops! I am increasing the variables

Last week I promised myself I'd make a change.  One change.  Instead of taking huge amounts of hydroxo B12, I'd substitute adenosyl B12, sold as Dibencozide through Source Naturals.  (I bought it from Holistic Heal, Dr. Amy Yasko's company). I decided to do this because a guy on the Phoenix Rising ME-CFS forum has had fabulous results with adenosyl and methyl B12.  But while methyl B12 has potential problems for me, adenosyl does not.

Adenosyl B12 is the form that gets into muscle cells.  It's the main form used in the Kreb's cycle, the energy cycle in the mitochondria that produces ATP.  I suspect mine is low.  My recent organic acid test from Genovations showed amounts of several Kreb's cycle acids were too low to measure!  Then, I read that high MMA on this test indicates a need for adenosyl B12.  So into my morning pill box it goes.

I also decided to increase methyl B12.  Even though there have been discussions about the risks of taking methyl B12 for people who have mercury stored in the brain, I have decided to take the risk.  I've improved enough on this protocol that I can handle more methyl donors.  I've worked up to 1/2 of a SAMe a day from back in January, when I went bonkers trying to take it.   I read more about it in Yasko's voluminous posts and books.  Although I have a genetic polymorphism that limits my ability to handle methyl donors known as COMT++ (catechol methyl transferase),  I learned that as my methylation cycle improves, I'll be able to handle more methyl donors.  Methyl B-12, as you can tell from it's name, has a methyl group which it can donate, if needed, to another molecule.

Both these 'active' forms of B12 fit into the protocol that Freddd posted on the Phoenix Rising site.  So far so good.

Here's the catch:  I'm not willing to stop the other type of B-12.  I cut back my Perque OH-B12 lozenges to one a day (I'd been up to 4 a day).  I cut back a little on the injectable OH-B12.  But I want to continue taking it because Rich Van Konynenberg says that, by combining OH B12 with reduced glutathione, we make glutathionylcobalamine, which is another active form of B12.  The glutathione protects the B12 from oxidation, which allows it to work effectively in the cells.  Plus, I have to admit that after investing nearly $100 in sterile vials of the stuff, I'm not ready to see it go to waste  :) :) sheepish)

The other catch is that I won't be able to tell if it's making a difference unless I get extremely sick or instantly well because....
                      I started low dose Naltrexone.

Like a typical brain-fogged space-cadet, I forgot all about the Naltrexone when I wrote a few days ago.  I started it five days ago.  I'm up to 2.25 mg a day.  So far so good.

Low dose naltrexone is being used by others with ME-CFS, as well as by individuals with MS and HIV.  Although developed to help heroine addicts break their addictions, at a dose of 50 mg, someone somewhere discovered that it has positive effects at a very low dose.  Among these effects are reducing inflammatory cytokines (usually high in ME-CFS), increasing natural killer cells (low in ME-CFS), and generally helping the immune system get back into balance.   To read more, go to

Several people I know have reported feeling more energetic and more clear-headed after taking if for a week or two. The main side effect is insomnia.  I haven't had that any worse than normal.  Apparently it goes away in 2-3 weeks.  The people I know who gave up on it did so because they couldn't sleep.

On top of that (or maybe on the bottom of that -- because it sent me onto the floor), I did too much exercise.    Exercise usually tires me out enough to help me sleep -- as long as I don't overdo it.  If I overdo it, I don't sleep at all.  It's like walking on the edge of a cliff.  One slip, and you fall.

I fell hard on Sunday.  I couldn't bear to spend another day looking out the window at this glorious late summer weather.  Waaaah!  I wanted to be out on the trail, on my bike!  David put the bikes on the rack and we drove off to the place where we usually start: Kilduff Rd.  It's about a mile from there to a lovely alcove that overhangs the Kokosing River.  A few hundred yards before I reached the bench, I felt the beginning of fatigue in my leg muscles.  We stopped and I sat on the bench resting, listening to the relaxing sounds of water and crickets.  It was a cool, breezy day.  The longer I rested, the more tired I felt.  Finally (perhaps 10 minutes later), I got on my bike and headed back to the car, traveling at an even slower speed than I had traveled on the way out.  It didn't seem to make a difference.  It was a struggle to get back to the car.

I knew I had overdone it, but there was no undoing it.  I took ATP.  I took NADH.  I took Vitamin C and magnesium.  I rested.  I ate.  I ate chocolate, yummy dark chocolate, chewing it greedily before I remembered to let it melt in my mouth.

I lay down but I couldn't relax.  The exercise had overstimulated my mind, and my body was crashing.  I put on wool socks and a sweatshirt.  When I finally remembered to take my oral temperature, it was 96.8.  I lay down under blankets (in August, in Ohio!) and rested.  I got my temperature up to a whopping 97.2!  By the end of the afternoon, with some gently yoga and a huge hunk of protein at dinner, my temperature returned to normal: 97.8  Needless to say, I did not sleep like a log, nor like a baby, nor like a rock.  I was up and down like a jumping jack until the first rays of sun crept through the blanket of trees outside my window.  Then, like most of us with ME-CFS, I fell asleep, and stayed that way until morning was nearly gone.

So much for reducing variables.  I will never be a scientist!



  1. Thanks for visiting my blog. I've added your blog to my blog list. Hope that's ok!

  2. I can't wait to from you about this new dr you gonna see on sept 9, who helped Mike D. Is it really same dr. you will see? Mark

  3. I ran out of Adenosyl B-12 this week (Dibencozide) and was about to reorder when I read this:

    Methionine synthase utilized GS-Cbl (glutathionyl-cobalamin) as cofactor more efficiently than aquocobalamin or cyanocobalamin based on initial rates of enzyme activity. This suggests that GS-Cbl is a more direct precursor of the coenzyme required for methionine synthase. Formation of adenosylcobalaminm from GS-Cb1 was four times greater than from aquocobalamin alone. Based on these results, we propose that GS-Cbl or a closely related thiol-cobalamin adduct is a proximal precursor in cobalamin coenzyme biosynthesis.

    I'll not reorder but continue to do the Gs-B12 shots by combining hydroxoB12 with GSH in a syringe.


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