Sunday
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Oh drat, forgot the methyfolate, 1 pill, can't recall dosage. Don't know if this is just brainfog or me.
It's so interesting to me to see how this protocol works a little differently for all of us, and that we each need slightly different combinations to open the lock.
Freddd, would it make sense to get in touch with the mb12 crystal manufacturers and ask what their regimen is for handling it? You might be able to give them valuable advice and get more consistent quality. Read with interest your report on the variations.
Lena, so glad to hear you are trying again with smaller doses. I agree the nausea is wearing. My doses at this point:
adb12: 6mg
mb12: 3 mg
B-Right: 2x a day
I'm traveling so I don't have other dosages as my pills are all in one bottle, but I'm also taking:
alpha lipoic acid
l carnitine fumarate
vit D
vit E
omega 3 oils
potassium
zinc
vitamin C 2000 mg
cal/mag
and I think that's it, without my panoply of bottles I'm not sure I've got them all, will check when I get home. Good luck!
One issue I don't see being discussed here that I think deserves mentioning is that B12 massively stresses the adrenals. That's bad enough for some people with CFS who have functional adrenal issues, but it's even worse for those of us with thyroid disorder, especially Hashimoto's.
The cells require cortisol to be able to use thyroid hormone. With the kind of adrenal insufficiency common in CFS, that cortisol often is not available, so the T3 just ends up "pooling" and circulating in the blood, unable to get into the cell or be used properly if it does. If you get a sudden increase of cortisol -- like through stimming w/ B12 -- you can create what's known as a "thyroid dump," where that excessive circulating thyroid hormone suddenly dumps into the cell and is used, creating a temporary hyperthyroidism to various degrees.
Usually, if the amount of increased cortisol is not massive, that in itself will not pose monumental problems -- you might get a racing heart, a really bad night's sleep, or mildly get any other typical hyperthyroid symptom. But then the larger problem comes because your pituitary, signaled by the cells that now have available hormone, cranks down the TSH and your T4 production, now leaving you hypo after the initial "boost." And that can last considerably longer -- days or weeks even. And if you keep cranking up the B12, you can really crash the adrenals and end up in bad shape, with or without thyroid issues, but of course even worse if you do have thyroid disease. And around we go.
So that might preclude me and select others from following this protocol, although I haven't tried adenosyl b-12 yet to see what effects that might have. But I would guess that if the adenosyl form has more impact on muscle/fibro pain, muscle energy, and so on, that it probably taxes the adrenals even more than methyl b. And regarding methylfolate, even though I'm folate deficient, I'm also currently folate intolerant, getting a massive depression whenever I take active folate (or any folate) until it wears off. That's more neurologically induced, however, from imbalanced neurohormones, receptors, transmitters, etc. in relation to the methylation problems, because a year or two ago it used to have the opposite effect on me. It drastically lowers my heart rate, too, into the 40s. So the Country Life adenosyl b12 at least would be out, as it contains folate, though I notice that Source Naturals has a version w/out folate and that's a pretty good brand.
But it still leaves the adrenal/thyroid issues, and I'm not sure taking the higher doses of b12 required by this protocol would do much of anything but create larger problems. I tried some B12 yesterday just to get a sense of how I'm reacting to it these days, about 1/8 of a jarrow 1mg. (I've always used Jarrow methyl-B - it also might be worth mentioning that when I tried hydroxy injections a few years ago they caused a frank paranoia until they wore off after a few days - it was very scary reaction, I thought it was going to be permanent). I definitely got stimmed from the methyl b, but predictably I had terrible sleep, being up much later than usual until 2AM, waking wide awake for a few hours, and then up at 7:30. There clearly was a minor thyroid dump (feet were warmer, heart pounding a little harder, etc.)
So I'm not really sure where that all leaves me, whether I want to risk trying the adenosyl or not, whether I can do it with depressed folate levels that seem to be uncorrectable at the moment, etc. But I thought I would throw some of that out there, especially about B12 being contraindicated in some more adrenally mediated cases of CFS and in thyroid disorder. If you'retaking B12 and getting worse, some of those issues could be implicated and worth considering.
Just to record my experience. I know we're all different. I have major thyroid / adrenal problems, and take a replacement dose of both hormones. I will be on adrenal support for life. I haven't had any problems related to thyroid / adrenals since starting this protocol in September. I anticipate having to adjust my Florinef dose downwards, as my blood pressure seems a bit on the high side (despite stopping the COQ10), but I have had no raciness or symptoms of overdose. I HAVE had a big improvement in sleep and orthostatic tachycardia, and have a clearer brain and feel more optimistic.
Best
Nicola
Hi Starcycle,
Hypothyroid is perhaps the most frequent co-correlate of b12 deficiency and B12 deficiency is directly linked to causing Hashimotto's. There have been a number of people operating on the "thyroid" hypothesis based on the direct effects of increased energy (increased ATP production because that is one of the major jobs of b12). They tested and retested and changed doses and all sorts of things and just screwed it all up. The changes from b12 happen much faster than the the T3 and t4 and tsh tests can catch. You are feeling the most common startup effect of b12, an increase in energy. Generally people who don't overinterpret do better getting through the startup. People who have all sorts of specific explanations tend to get themselves all anxious and that complicates everything. A good percentage of what happen with b12 is that it causes faster nervous signal transmission and more signal gets through with increased performance. Whether something actually intensifies or if its appearance intensifies or some combination shoudl be considered. Mostly ity isn't what people jump on and the thyroid hypothesis has caused considerable trouble for some. Many of these changes in symptoms are phantoms that one can chase after endlessly and fruitlessly.
I don't know if your application of thyroid hypotheis on this is correct this time for you or not. All I know is that most who make changes based on the thyroid hypothesis end up not being happy with having made the changes. I am hypothyroid and have been since 8-9 years old. I had lot's of stimulation from startup with methyb12 and a lesser startup with adb12 and no real changes in thyroid at all.
And regarding Source Naturals, we tested their 5mg methylb12. It was the only brand that rated ZERO stars, no effect at all for any of the 5 hypertsensitive testers.
[So you are on hydrocortisone or some other kind of steroid? That would tend to negate any effects B12 or anything else might have on adrenal function, wouldn't it?
Yes - my adrenals were in such a bad way when I started adrenal hormone replacement my doctor did not (and does not) expect them to regain function. So I am not aiming for that. I am aiming to regain sufficient quality of life to function with and enjoy my family. I fell sick with mercury toxicity five years ago after a trip to the dentist.
Nicola
One issue I don't see being discussed here that I think deserves mentioning is that B12 massively stresses the adrenals.
Hi, starcycle.
I'm very interested in this. I haven't been aware of this. Can you provide more information on it? It this based on treatment experience, or biochemical theory, or both?
One of the central issues in the treatment of CFS that several of the clinicians and researchers are debating is, where do you start?
It's true that most PWCs have HPA axis dysfunction, and many have Hashimoto's thyroiditis. It's generally agreed that support for the adrenal axis should come before (or concurrently with) support for the thyroid axis. But should the adrenal axis be supported first, before anything else? And if so, should the support be things like vitamin C and vitamin B5, which the adrenals are known to need, or should it be adrenal glandular extract, or things like ginseng or licorice? Or should low-dose glucocorticoids be used?
People seem to respond differently to these various treatments. One school of thought is that adrenal and thyroid hormones should be given in an attempt to normalize these levels. Another school of thought is that there is a more fundamental metabolic problem, and that the body is compensating for it by lowering the adrenal and thyroid output, so that if they are supported first, this will cause more harm than good.
I have proposed the hypothesis that a partial methylation cycle block is the fundamental biochemical abnormality in CFS. If that's true, then treating it should be one of the first things to do. Perhaps 3 or 4 people have reported that their thyroid function has recovered after they started the Simplified Treatment Approach for lifting the partial methylation cycle block, in a couple of cases quite soon after starting. One person has reported that her diurnal cortisol plot returned to normal from being low after a few months on this treatment. I don't have a lot of measured data yet on this.
I recommend approaching the treatment of the methylation cycle block slowly. Some people have started with much smaller dosages than those suggested in the protocol of the Simplified Treatment Approach, and have been able to increase the dosages over time. The longest time anyone has been on this treatment now is nearly 3 years. For some, it has taken this long to begin to experience significant improvement, while others experienced significant improvement in a few months.
I share your concern about mercury. I'm very interested in the use of some of the newer substances for detoxing mercury. Dr. Klinghardt reports good results with MicroSilica from BioPure. People in the Yahoo OxidativeStressRelief group seem to be reporting good results with OSR#2.
So what is this simplified treatment plan for the methylation block, and how does that relate to the B12 protocol?
Hi, Starcycle.
Here's the current version of the protocol for the Simplified Treatment Approach.
I wonder if the "thyroid community" believes B12 supplementation must come after adrenal and thyroid support for people who have Hashimoto's thyroiditis and HPA axis dysfunction as part of CFS, or does it apply only to non-CFS thyroid and adrenal cases?
My concern is that the methylation cycle is present in all types of cells, including those of the thyroid and adrenals. If this cycle is not supported first, I don't see how these organs will recover their function.
Okay, well that's the point I'm making. B12 appears to stress the adrenals, but if you are on HC that's not really going to be an issue, right?
About the mercury issue, though, I'm still trying to find out. I might ask on the Cutler list, see what they know about it. Unless I was sure of the effects I would be very wary indeed of taking high doses of B12 with mercury being present. That could be a recipe for a major disaster, i.e., redistributive event that could really screw up a person for life (mercury has a half life of 17-18 years in the brain. And that's for "normal" people, with properly functioning glutathione systems and functional metabolic enzymes).
The answer you will get on the Cutler list is that B12 doesn't methylate mercury to any meaningful extent, and that some people need lots of B12. I did over 100 rounds of DMSA / ALA before starting this protocol to reduce body burden, but have still had 3 big herxes since September, and have felt much better since. I could barely tolerate the folate either - even 1/4 tablet made me feel unbearably tired and draggy. I have now worked up to 2 tablets and have much more energetic and optimistic. In my experience the things you react most to are the things you need the most.
Nicola
I tried 5 mg of methyl B12 for about 2 months as well as 3 mg of adenosyl. When I tested plasma aminos, my methylation cycle was stuck at methionine. And nothing was going down the transulfuration pathway to cystathionine either. Rich thought the methyl B12 could be speeding it up too much, yet my organic acid testing showed that I needed more folate and more B12. In previous tests (before introducing the methyl and adenosyl B12), my tests showed adequate folate and a mild need for B12.
The point I'm making, through my rambling fogged brain, is that taking high amounts of methyl B12 can mess things up for some of us.
Much better to test than to screw up your physiology. The impact on my methylation led to liver problems for me, like high enzymes (AST, ALT), inadequate bile production experienced as inability to digest a high fat meal (an omelet with a little cheese and avocado) which previously had been no problem.