Wednesday, January 28, 2009

Two B or not two B (12's that is)

Have I sunk this far? That my thoughts center around how many B 12 vitamins to take? Is this the level of cognition to which this illness reduces us?

Last week, after I increased B12 from one to two tablets, I wondered (blog Jan 19, The Dow Jones Energy Level Average) whether I was getting the anticipated detox. Rich had warned me: “and since your reduced glutathione level is fairly low (Glutathione normally protects vitamin B12 from reaction with toxins in the cells until it can be converted to one of the active forms, methylcobalamin or acetylcobalamin.)... much of the B12 is hijacked by toxins. I would suggest holding off on the B12 for two weeks, until the other supplements have had a chance to take effect, since you have a pretty high folate status, and adding the B12 may start up detox."

The first day on a double dose, I experienced no difference. The second day I had a mild headache but since I spent two hours in the waiting room of a wheel rim repair place that smelled like new carpeting, I would have had a headache from the formaldehyde or VOCs in that air. Normally, I would have left the building ASAP, but since I was waiting for friends who were on their way home from the inauguration in Washington DC and due to arrive any minute, I stayed and got a terrible headache. The third day I inadvertently increased my dosage to 3 B12’s and continued to have a mild headache. The fourth day I reduced the dose a bit (to 2 ½ B12’s) and have not had a headache since. I have no idea if there is a causal relationship between these events.

The whole process of fine-tuning supplements and medication is a great art, one we are always learning. Even if it were possible to test B12 levels each day the way diabetics test for blood glucose, would the numbers be a sufficient guide to the this process in which I am engaging — the cultivation of improved quality of life?

I think of a discussion I had on New Year’s Eve with a retired rheumatologist. (Rheumatologists started treating fibromyalgia when evidence of abnormal SED rates in FMS patients emerged.) This sincere, sympathetic physician set up a fibromyalgia clinic at a University hospital. Less than a decade later it was closed down by Medicare “because it wasn’t cost-effective.”

“What does that mean?” I asked, “How can FMS treatment possibly cost anything remotely close to what it costs for bypass surgery, for chemotherapy, for...” I’m already worked up, wanting to get up on a soap box and rant about discrimination in women’s health, about how our problems are not taken seriously, are dismissed as psychosomatic, are under-researched and under-funded, and ... Fortunately he doesn’t give me a chance to make a fool of myself.

“We had to spend a lot of time with each patient and we couldn’t justify the time by getting people back to work,” he said.

“But didn’t you improve their quality of life?” I ask, dumbfounded.

He shrugs and tells me how important it is for people's mental health to be productive. He doesn’t know I’ve had to come face to face with that issue, wrestling with it since I first went on disability in 1994, getting the advantage a few times only to plunge into relapse again and end up flat on my back. I want to argue with the government's decision, knowing how much of a difference it makes for one individual to experience even a modest improvement in quality of life, how it ripples out to their spouses, their children, their siblings and friends. I want to get on my soapbox and rant that if women controlled government, FMS and CFS/ME would get a lot more attention, that it's unfair for Medicare to cover drugs like Viagra when they won't help women with FMS improve their quality of life. But I don’t say anything because I know that if a pharmaceutical drug worked for this illness, everything would be different. Natural products and lifestyle changes do not constitute certified medical treatment in this country, even if those things work, for there are no profit-takers lobbying in its favor.

This illness is like a pianoforte, soft and mild for a few moments and then, unexpectedly, forceful and overwhelming for a period. And so we must become our own piano tuners, adjusting the strings ever so slightly to get the optimal vibration, even if, in a few days or weeks (with changing humidity/hydration and use/activity) it will need fine tuning again. Rich’s fine-tuning guidance was pretty vague. “I would suggest starting with the dosages listed, perhaps working up to them slowly, and then trying them for a few weeks to see if you experience detox symptoms, which is unfortunately a necessary part of this treatment. If you don’t experience detox symptoms, I would suggest raising the hydroxocobalamin dosage, but keeping the two folate-containing supplements at the recommended dosages. As the detox gets going, you will be able to control it at a level you can tolerate by adjusting the dosages.

Since I’m not getting any noticeable detox, I went on a yahoo discussion group to see if I could find guidelines for adjusting these quantities. I looked at the protocol of Dr. Sara Myhill, a UK physician treating CFS/ME who has adopted Rich Van Konynenberg’s Glutathione Depletion- Methylation Cycle Block Hypothesis. Myhill recommends 5 mg of hydroxy B12 (the equivalent of 5 tablets), 1 mg of methyl B12, and 800 mcg of active folate (methyl THF) – substantially higher doses that Rich’s 1 mg hydroxy B12, 0 mg methyl B12 and 200 mcg active folate.

I learn from Myhill that I can take substantially higher doses without harming myself. With Myhill’s lists of 28 detox symptoms, there are at least 28 ways my body will let me know if I get too much. When I took more than 1 mg of methyl B12, I got insomnia--not listed among her 28 detox symptoms but a clear, somatic message nevertheless. My artistic challenge will be to find harmony and balance between the three supplements that push or slow the methylation cycle: hydroxy B12, methyl B12, and methyl THF. If Rich has erred on the side of caution and Myhill on the side of excess, I will walk the middle path.

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