Hi, Freddd.
My concern is not that "methylmercury will decide to settle down in the brain." My concern is that it will react with enyzmes in the brain that contain selenium or sulfur, and the mercury will revert to inorganic (mercuric) mercury, bound to these enzymes and inactivating them, producing neurological damage.
Chemical substances don't "decide" to do anything, and they really don't "care" how we are hoping to mobilize them. They follow the laws of chemical thermodynamics and kinetics, which involve the binding energies of various chemical compounds and the energy barriers over which substances must go to react with each other. These in turn are determined by quantum mechanics as applied to the particular electron orbitals of the various molecules.
As I see it, the problem is that mercury has a much greater affinity for selenium than it does for a methyl group. Therefore, if methylmercury encounters selenium in the brain, it is very likely that it will react and deposit mercury on the selenium. I would expect that the equilibrium in this reaction will be shifted strongly toward this result.
To overcome that, I think it might require a much higher concentration of methylcobalamin than could be achieved under physiological conditions in the brain. Perhaps this could be done slowly, as you suggest, but it might be extremely slow.
I understand what you mean about an individual having to make difficult choices sometimes, and I'm glad that the choices you made paid off for you. However, I feel that I need to be very careful not to recommend actions the consequences of which are not well understood and have the potential to be harmful to people who might not be in a position to understand the risks. There is a wide range of understanding and expertise on the internet forums. Some people are very able to understand the risks, and others are not. I think it's true that individuals are responsible for their own choices, but it makes a big difference whether they are informed choices or not. This is the basis for the requirement for "informed consent" in clinical studies, such as the one Dr. Nathan and I carried out.
Also, the possible consequences of new treatments are not completely understood. If you want to understand better why I seem overly cautious, read the end of the article I wrote on July 18, 2007, at
http://www.aboutmecfs.org/Trt/TrtMethylPlan.aspx I was very chagrined to learn then that even seemingly innocuous nutritional supplements can produce serious adverse effects in some people, depending on their individual situations.
I continue to emphasize that anyone doing methylation cycle treatments needs to be under the care of a licensed physician. The goal here is to help people, while avoiding pitfalls that can cause them harm.
Best regards,
Rich
Hi Rich,
Chemical substances don't "decide" to do anything, and they really don't "care" how we are hoping to mobilize them. They follow the laws of chemical thermodynamics and kinetics, which involve the binding energies of various chemical compounds and the energy barriers over which substances must go to react with each other. These in turn are determined by quantum mechanics as applied to the particular electron orbitals of the various molecules.
Of course they follow such. I just didn't know the factors of why mercury might immobilize once mobilized. It is for this very reason that there is a keyhole effect on how much inactive cobalamin can be converted to mb12/adb12 because it requires an enzyme for the uphill energy transaction. I'm looking for the references I had previous found on that.
In this true life game of YOU BET YOUR LIFE I do understand the need for caution, having been in the "belt and suspenders" insurance business all my life. There is also game theory. If you only bet on sure to lose situations, you never win. As you recall I got clobbered with unintended side effects with the glutathione precursors and the effects lasted more than 2 years. So many of the symptoms and side effects you mention in the article referenced certainly have multiple possible causes which complicates interpretation. For instance, sprinkled in amongst the symptoms are things like depression, heart palpitations and changes in peristalsis. While these are often related to b12 deficiency they can also be triggered by reduced potassium. Hypokalemia can be fatal if continued for long and getting severe enough. While induced hypokalemia is considered "rare" from hycbl and cycbl it appears to be common with mb12/adb12. If a person is prepared and has the potassium on hand or even starts it concurrently or in advance much problem can be avoided. Despite the "lower" limit being set between 3.5 and 4.0 depending upon source, symptoms in some people, me for example, appear to start at about 4.2 when falling. When starting mb12 and/or adb12 and/or Metafolin and/or l-carnitine fumarate and/or zinc and maybe a few other things this can start within 3 days of start of the specific supplement. This is certainly a recognition problem. In this case hypokalemia is triggered because cell formation has started up. It is not limited to only cases of macrocytic anemia
Some of the other symptoms are clear caused by hycbl specifically such as at least one kind of rash. Another set of rashes can be triggered by induced methylfolate deficiency. And no doubt there are other rashes entirely. Some of the side effects are b12/folate deficiency symptoms that are not helped by hycbl and/or folinic acid and actually made worse.
I continue to emphasize that anyone doing methylation cycle treatments needs to be under the care of a licensed physician. The goal here is to help people, while avoiding pitfalls that can cause them harm.
I agree that is a good idea if possible. I spent $200,000 out of pocket over 20 years for testing and "treatment", not including pharmacy costs, with all sorts of licensed physicians and ended up with a $1500/month pharmacy bill and no healing at all because not one of them had a clue even when I told them the problem of needing "real b12". I did that for the first time in 1980. It just got me kicked out of practices and called names. Only a few were honest enough to tell me to go find somebody who understood what the problem was rather than calling me names and playing blame the patient. I was being treated to death by the standards of practice. I had a colleague who was a member of the Joint Commission - ambulatory care standards committee. I was in far more danger of serious injury and death from following the standards of practice than I ever was from taking these supplements. Even the glutathione just put me back in the boat I had been in for decades. I finally have an internist who works with me now and has for 8 years but only because I offered a ringside seat to "miraculous" healing. He said "I've never seen anybody come back like this from being so far gone". So he does testing and monitors me and tries to keep me out of trouble. A female neurologist back in 2000 told me "I could diagnose you with FMS but it won't do you any good. It will only get you treated badly because you have an imaginary woman's disease." I had already been so diagnosed and treated badly so her warning was rather late. This is after an hour long neurological exam that included an EMG. I know attitudes about CFS/FMS are changing but to find a knowledgeable physician is very difficult. Most just want to prescribe Cymbalta or whatever which is not a treatment and heals nothing. The symptoms it relieves respond better to mb12/adb12/Metafolin etc. without all the side effects of the medication that doesn't heal but just adds to problems while quieting the pain a pit at great expense. I was taking Dilantin for 15 years or so for the same reason.
Realistically, the people who need this the most are typically disabled, broke and without insurance. Getting a rigorous test series and frequent physician appointments are impossible for money reasons. Even if they do, most insurance will pay zilch for "vitamins". Most, by standards of care, will pay for monthly b12injections after a "loading" series that really doesn't work well at all.
If we had universal health care that would pay for b12 at the frequency and amount that works and cofactors with availability of physicians who had any real idea of what they were doing in this treatment then your advice would be realistic. Instead it just raises more barriers to actually healing. That is something we evaluated in health plans for decades, barriers to actually receiving treatment.
I'm not a doctor or researcher. I have read lots of bad research and received lots of bad treatment based on that bad research. Getting good treatment has been like pushing string. I know that some perceive me as "odd" for some of the things. For instance I started insisting on current standards of cleanliness from my doctors and orthodontist in the late 50s when I was in 4th grade, including washing their hands thoroughly in front of me. I did my first actuarial work for a brand new thing, dental insurance, back in 1960 when I was 12-13 and was a co-designer of the plan with my father and did my first practice profiling of "white collar population" vs "blue collar population" dental practices complete with statistical analysis at that time. I have been pushing consulting clients towards evidence based medicine since 1982 and building certain aspects of it into the software I designed and wrote. It has been part of my job to monitor and reform "provider behavior" (also insurer behavior) since 1983. When I became too ill to continue working I took myself on as my next client. The pay has been lousy. It took me 9 months to come to the first approximation solution and 8 more years to refine it.
So while ideally each person should be under a knowledgeable physicians care while doing these things it literally isn't possible. Most of the people getting well from these problems are doing it despite their physicians, not because of them. Most physicians and insurance plans are obstacles to healing these problems. However, some providers that start out obstacles are willing to change their behaviors as they see remarkable healing in front of them. Historically it has taken about 70 years from the time the role of a vitamin is recognized until it is effectively utilized. Look at prenatal folate usage as an example and "fortifying" white flour with folic acid to prevent neural tube defects. However it only reduced the level a "disappointing" 27% because of the inherent problems of folic acid and because the other factors that are known contributors were not also included.
They have to learn that "normal" or high serum cobalamin levels don't predict lack of response with mb12/adb12, that "normal" or "high" folate levels don't predict lack of response with Metafolin, that "normal" or "low" uMMA/Hcy don't predict lack of response to mb12/adb12 and that CSF cobalamin levels can be terribly low with normal or high serum levels and that serious central nervous system deficiency damage can occur regardless of serum or CSF cobalamin levels.
It's good to see compounding pharmacies learning that mb12 injectable solution has to be mixed in extreme low light or better yet deep red safelight conditions for it to be effective. This knowledge is spreading around the USA and Australia at least because patients are educating their pharmacists based on what they read here and other place.
Having the patient educate their physicians and pharmacists is a bottom up approach that is working slowly, but working. How long does it take to change an incorrect "everybody knows that..." to a correct one? With the internet, it happens in a way impossible without the internet and far more quickly.
So now, many other sites are repeating various "methylation" protocols and their relatively high effectiveness. You have helped this process a great deal by the writing you do. Our intellectual back and forth helps us both look where we may not have before.
And just a note, I am revising the spreadsheet but to do it right is taking more time than expected, as always.