HI Fredd,
Understood
To be clear - I see a great deal of value in your protocol (since emailing you I have locate a posting of the full thing), I think it is well balanced in terms of the mix of B-Vitamers. With slow methylators I can see enormous value. I can also see enormous value with certain genetic defects. My view is subtly different form yours, it is not poles apart.
I have seen research "in vivo" showing both positions on Mercury. Applying the 'precautionary principle' though Immunology in general is poor in ME (thus producing side effects with many drugs).
Cerebral blood flow is markedly affected with lowered blood volume (typically between 20% and 50% reduced in ME patients) - that damages the first method of getting mercury back out of the brain. Secondly the two links between CSF and Lymphatic Fluid (mid thorax and through the Cribriform plate) are impaired in some patients with ME. The latter is relatively common. Finally lymphatic flow in general is often poor. The nasty side effects accumulating with long term use of anti-depressants that should be fully metabolised in three days seem very likely to result from this issue.
All of this compounds the normal issue of Mercury taking quite some time to get out of the brain. For these reason I consider an 'assessment of risk' to be wise.
For people in some parts of the United States mercury from fish is thought (by some) to be a particular problem.
From personal experience just the mercury in fillings made an enormous difference to my ME when removed without any assistance getting through the 'blood brain barrier'. Bear in mind too that your blog will be read world-wide an in countries where Mercury fillings are still 'the norm'. It was in large part with that International perspective in mind that my comments were written.
I prefer to give advice and receive it with a full appreciation of risks as well as benefits, hence my comments.
Hi Leopardtail,
I'm in the part of the USA where we really shouldn't eat a lot, or maybe any, of the local fish. They contain a lot of mercury released by smelting operations decades ago and even now. I used to fish and eat the fish in the east but I won't do it here. I also take selenium and have for decades to neutralize and immobilize the mercury as an inert substance. I played with mercury as a boy. My father came home from work every day covered with micro-drops of mercury from working with it all day as a dentist. When he started in practice the amalgam was kneaded barehanded until the right consistency. He is in high level Alzheimer's care now. He refused to try vitamins. His soon to be widow refused later for vitamins to be given him though it very possibly was way too late. She thinks I, and all the rest of us, are fakers and hypochondriacs and I couldn't possibly heal from vitamins because I was never really sick, just lazy and a no good liar. Lots of us have family problems like that.
I spent 20 years trying every therapy in the book and then some. I went to all sorts of practitioners with all sorts of theories. I kept a daily diary. They all wanted to claim any periodic improvement and disclaim all the downturns which always were more common than upticks. None of the therapies made any difference, didn't change the up and down pattern in any way and added all sorts of side effects and often made things worse, lots worse, like glutathione and it's instant methyltrap. I didn't expect 100% failure on the part of every theory and treatment based on it. Something was wrong with every one of them. Diddling with one resultant symptom, even if it helps that symptoms, didn't change anything, didn't cause any healing. It was just skimming a little cream of the top but not getting the cause of anything.
I studied up on each theory and tried it two or three times with different practitioners. Not a single one, over 100, EVER healed anything. My chiropractor working on my injured back and neck game me a great deal of pain relief. So did massage. As is complained, that is only temporary, but it was all I had that did anything.
On the mercury, I studied all the theories and "treatments". I watched people panic and stop MeCbl when they had fecal mercury which is sort of strange to me because fecal mercury is exactly what one would get by taking MeCbl if indeed it does react with mercury since the monomethylmercury is then excreted in the bile. The whole idea is to get it out of the body Getting it out of the body is a good idea. The 1% per day of serum monomethylmercury that is excreted in the bile comes from research of people accidently poisoned with monomethylmercury. The research allowed me to build a serum model for it. When they are poisoned by it to the extent of having greater than 30mg body load, they start having direct toxic symptoms which disappear as it is flushed from the body.
The B12 research showing 99% unchanged excretion of B12 within 24-48 hours puts an upper limit on how much reaction can take place. According to research I've read, approximately 80% of the symptoms of mercury toxicity is identical with B12 deficiency symptoms, that is to say partial methylation block. The deadlock quartet can reverse most of those in short order. Now perhaps one of the reasons I am still improving 11 years down the road is that at 1% a day of serum monomethylmercury, and only a little bit, micrograms, are formed per day with MeCbl hypothetically, then it could take a decade or more to react with the mercury and flush all of it out. The amount found as fecal mercury is on the order of micrograms per day which is in line with such a hypothesis. In the meantime, I'm not suffering all the effects of partial methylation block or methyltrap. I'm not suffering from any of them.
I've been doing trials since 1979 in myself as a longitudinal study. Basically one way of saying what I have found is that 95% medicine doesn't work for us. We are in the tails beyond 2 standard deviations and are ignored. I'm a systems analyst and consultant in healthcare since about 1980. The date isn't exact because it started with one little thing and then another and then another until it was full time Actually I started at 13 years old analyzing blue collar and a white collar dental practices, modeling them (adding machine and paper spreadsheets) and doing the preliminary actuarial work for the first free-standing dental HMO back in 1961.
I've written all sorts of serum level models for drugs to help practitioners figure out what was going on, such as one to show why Oxycontin didn't work as the advertising suggested it did. The graph that was used to show steadiness of serum level didn't match the data table which showed no such thing. I'm not interested in rehashing 20 year old business here but just used it as an example to show how models can help. In reverse engineering their graph I was able to show that it required a completely different set of numbers than their Orange Book data showed.
When building a model for B12 I found that while the numbers from lots of studies were pretty consistent for serum halflife they were not modeled well as there were a lot of complications and wrong assumptions.
So I take apart studies and build models. The models have to reflect how the results actually occur in people, not according to somebody's wish list hypothesis.
If you can show me the data from multiple studies I can build a better model than from one study. A good model has to be able to accommodate all data, not just the 95%. So I build it based on the 5% and the 95% are always accommodated. They just don't use all the variations built in. So in the medication model (Oxycontin for example) I include gut transit time, liver damage, kidney damage and all the other quantifiable things causing variations outside the 95%.
