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Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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  1. sela

    sela Senior Member

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    marin co, ca
    would anyone like to post their experience with this? it is so frequently recommended. i am sure there have been posts already but the search function doesn't seem to work for me.
  2. richvank

    richvank Senior Member

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    Hi, sela.

    NAC is used to supply cysteine to the liver to help it make glutathione. Cysteine is usually the rate-limiting amino acid for making glutathione. NAC is also the antidote for overdose of acetaminophen (Tylenol in the U.S.) which depletes glutathione in the liver, and is the main cause of liver transplants. (Some, but not all, acetaminophen overdoses are intentional suicide attempts.)

    In ME/CFS, many have high body burdens of inorganic mercury, such as is produced in the body from inhaling mercury vapor that is continuously emitted by amalgam fillings in the teeth. If a high body burden of mercury is suspected, Dr. David Quig of Doctor's Data Lab has recommended that the NAC dosage be no more than 300 mg per day, because it has been found that NAC can bind mercury and move it into the brain. This has been found in rat studies by Aposhian et al. Dr. Paul Cheney has frequently mentioned two cases of people who took large dosages of NAC and later committed suicide. I think the suggestion is that they moved a lot of mercury into their brains. Mercury is a potent neurotoxin. Recent research indicates that it preferentially reacts with selenium and deactivates selenium enzymes. One of these is glutathione peroxidase, important for controlling oxidative stress, which is a major issue in CFS. Mercury also reacts with sulfur readily, but its affinity for selenium is much higher.

    Best regards,

    Rich
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    i use NAC at 600mg twice a day for many years even pre cfs, my reason was for its antioxidant effects and because i new it was an antidote for paracetamol overdose and at the time and still do use this stuff to help with chronic back pain as i cant take nsaids for more then a couple of days as gastro problems arise and now that im on antiviral treatment for maybe ever as well as other meds i am using to help protect my liver. So far all my liver function tests have come back good and i have had cfs for more then 9 years now and back problems for alot longer, so i think its helping. As for directly helping cfs, i dont think it has but has kept me healthy in a general sense.
  4. Lala

    Lala Senior Member

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    Hi Rich,
    do you know how to get mercury from brain? I am on 2400mg of NAC daily for many years and suffer from permanent depression. I use many detox moppers, but I do not know if any of them are efficient for detoxing mercury from brain. I take NAC with selenium and molybdenum, high dose C, DE and charcoal. My mouth is full of amalgam fillings, but I can not imagine getting them all out, no to speak about fact there is not any satisfactory substitute for them.
  5. richvank

    richvank Senior Member

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    Hi, Lala.

    Since you report that your mouth is full of amalgam fillings, and that you have been taking a high dosage of NAC daily for many years, I think it's very possible that the NAC has moved mercury into your brain, in view of available published research.

    The only substance I'm aware of that is claimed to be able to remove mercury from the brain is alpha lipoic acid. I don't know if it actually does or not. You might look into Andrew Cutler's protocol. He's the person who advocates use of ALA. The other option is to take more selenium, which will bind mercury tightly in a complex and make it non-bioavailable. I don't know if that is a good idea or not, and I haven't heard from anyone who has tried it. Note that selenium is toxic, also, at high enough levels. The first signs of selenium overdosage involve problems with the nails and the hair.

    Best regards,

    Rich
  6. Lala

    Lala Senior Member

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    Thank you for your answer, Rich. I am taking 200 mcg of selenium daily, so probably it is not good idea to increase the dose and I am on ALA regularly also. I have read DE chelates heavy metals gently from the body. Is it possible, that mercury in brain is released, when overall burden of mercury in the body decreases due to gradual chelation?
  7. richvank

    richvank Senior Member

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    Hi, Lala.

    The Institute of Medicine in the U.S. has recommended an upper limit daily dosage of 400 mcg of selenium.

    I don't know what dosage schedule you are using for ALA. Cutler has emphasized the importance of keeping the concentration in the blood up by frequent dosing (every 3 hours around the clock during the treatment periods). Otherwise, the use of ALA can be counterproductive, according to him, because it can redistribute mercury. He also suggests using DMSA together with ALA, I believe.

    I don't know what "DE" stands for.

    Probably mercury diffuses slowly out of the brain if the level in the body in general is lowered. However, it is thought that the mercury in the brain is mostly bound to selenium and sulfur as inorganic mercury, and to diffuse back across the blood-brain barrier it would need to revert back to methylmercury, which is lipid-soluble and more readily diffusible through the barrier. I have considered the possibility that methyl B12 might promote this conversion, since it is chemically able to methylate inorganic mercury, but I don't know if this would work, so I can't recommend it. If there is inorganic mercury in the body in general, I think there is a possibility that methyl B12 would methylate some of it, which could cause it to move into the brain, which of course would be counterproductive.

    I wish I had a more definite solution to the problem of mercury in the brain, but I think this is about all that is known.

    Best regards,

    Rich
  8. Freddd

    Freddd Senior Member

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    Hi Rich,

    Interesting. I just want to mention that a local wildflower that has a high uptake of selenium is the "locoweed" of western cattle days. It might be possible that the methylb12 might mobilize the mercury. To do that from the brain would require doses large enough to enter by diffusion as 1 or 2 mcg will do very little. And then it would be a slow process. The place to look would be a fecal mercury test which I would assume to be available. That would demonstrate the excretion in the bile by the liver. As about 1% of the mobilized methylmercury is excreted daily, it would start extremely low and build for about 1 to 2 years and remain level until it starts to fall off. You reach about 80-90% of equilibrium in 5 serum half life periods and 99+% equilibrium in 10 serum half life periods.

    A question for you Rich; Why would methylmercury decide to just "settle" down in the brain once it is mobilized, especially since we are hoping to mobilize it out of the brain. I will say that almost all the neurological effects of mercury are also b12 deficiency symptoms. I will say that I probably had far more mercury exposure than you did and when the methylb12 penetrated my brain sufficiently to remove functional deficiencies the lights literally came on, at least 2 stops brighter (4x), my sense of smell and taste normalized, my hearing "brightened", sensory hallucinations stopped, my memory improved, cognitive skills improved, emotions returned more to normal after a stormy period. Also all my pains and symptoms also "brightened" by similar extents, or at least the perception of them did so. You can tell very quickly if mb12 is penetrating your brain and if it relieves neurological deficiencies. It can knock your socks off. If mercury is depleting methylb12 you will see for yourself those symptoms going away, in hours, days weeks and months. I'm still having improvement almost 8 years later. When I started adenosylb12 9 months later and then shortly thereafter ALA and l-carnitine fumarate I got nothing but better. I use the double release ALA-600 from Jarrow and I have no guarantee that is anything like a correct dose. I used it for an entirely different reason, as it helps transport the fats with the l-carnitine fumarate for the Krebs cycle based on the ADB12 in the mitochondria. I have been taking selenium 200mcg daily since it became available.

    Life is a bunch of fuzzy logic choices because there is no way to know with certainty. Sometimes you just have to play it as if the cards lay in a certain way because you go down for sure otherwise. That's where I was at when I decided to try mb12, going down fast and hard. My background is in the insurance business which plays the odds with a very high house percentage.

    This is a choice only you can make if you want to try it. I'm wondrously glad I did. It gave me a life again. I would be dead otherwise or at very best in a wheelchair with diapers and a totally screwed neurology, not able to see well enough to read and unable to track through an entire movie.
  9. richvank

    richvank Senior Member

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    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
  10. Freddd

    Freddd Senior Member

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    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.
  11. Freddd

    Freddd Senior Member

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    Hi Rich

    I wanted to discuss this part separaTELY.

    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 would expect it to be extremely slow, both the mobilization and the clearance. The models I built suggest that it would take 10 -15 years or more to clear out any appreciable accumulation. However, in a situation of of 2mg total body load of mb12 in the absence of supplementation, it is quite easy to conceive of mercury destroying sufficient mb12 to cause deficiency. The initial problem being that there is so little mb12 in the body for very long and as you point out, not overly reactive. If selenium is being taken as well that might even cause the mercury to just be taken out of circulation by binding to the selenium almost as quickly as it is mobilized. So it is difficult to say for sure. Over the range of 0.1% to 10% of the daily mb12 dose used to methylate mercury and mb12 absorbed doses of 1-10mg the equilibrium level of methylmercury in circulation peaked at 2mg (with 35mg in circulation being the lower limit of identifiable toxic response of methylmercury), after 2 years. With 2mg being excreted each 2 years and 2 mg mobilized each 2 years it would be a very slow process and extremely unlikely to cause any kind of toxic methylmercury reaction. If the selnium does bind the mercury relatively quickly once it is available then the serum levels would be even lower with very little excreted. It would be a very slow process. That's why I find it extremely unlikely that a person would have a toxic reaction to the mobilized mercury due to mb12. With a 700mg absorbed dose of mb12 assuming 10% binding to mercury in the short period mb12 is in the serum it's possible to come up with a 10mg methylmercury release, still 1/3 of the minimum level considered likely to cause a toxic response. So the most likely scenario is the 35 gram successive doses of IV mb12 for cyanide poisoning could conceivably produce a toxic methylmercury reaction, if selenium doesn't get in the way.

    The direct injection of mb12 into CSF have in every study of which I am aware produced highly favorable responses in the neurology. These doses used are on the order of 5mg.
  12. richvank

    richvank Senior Member

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    Hi Freddd.

    Rich: "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."

    Freddd: "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."


    I fully understand what you're saying here, Freddd. It IS very difficult to find a physician who can and will really help with these disorders. I'm continuing to try to interest more physicians in methylation treatment, and it's a slow process. (Incidentally, if anyone knows of physicians who are doing methylation treatment or who are interested in finding out more about it, I would appreciate it if you would send me their names and locations at richvank@aol.com) But I think we have to try to work with physicians, for a lot of reasons. One is that every person is unique, and they don't all respond to treatments in the same way. People really need a knowledgeable physician monitoring them so that if serious adverse effects arise, they can be recognized and properly dealt with. Another reason is that if a physician can be won over to this treatment, there is a big multiplier effect, because they interact with so many patients. I had a phone conversation with one of the physicians I know who has become a "believer" in this treatment. I asked him if he was treating very many patients with methylation, and his reply was,"I treat ALL of them with methyation!" He went on to add that depending on their response, he might continue it, or drop back and do some other treatments first, and then resume methylation treatment. Well, he is able to reach a lot more people than I can, and I would like to "recruit" many more like him! I also learn a great deal from interactions with physicians, because of their practical, "hands-on" experience with treating patients. The other issue, of course, is liability. I am a researcher, not a licensed physician. I am not legally authorized to practice medicine, and I do not want to be accused of doing so without a license. So, for all these reasons and probably some others, my position is that we do need to be working through the physicians. I realize the barriers they face in adopting non-drug treatments, and I sympathize with them. They have a difficult system in which they must work. Insight on this can be gained from the recent interview with Burt Berkson:
    http://www.honestmedicine.com/2009/...k-and-our-medical-system-the-interview-t.html

    Best regards,

    Rich
  13. Freddd

    Freddd Senior Member

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    Hi Rich,


    But I think we have to try to work with physicians, for a lot of reasons. One is that every person is unique, and they don't all respond to treatments in the same way. People really need a knowledgeable physician monitoring them so that if serious adverse effects arise, they can be recognized and properly dealt with.

    I've talked to a number of physicians who have called me to find out whatever I can tell them over the years, but distressingly few. When my internist asked me a simple way to tell which symptoms might be indicating early onset of b12 deficiency symptoms what I told him "If a person has a number of those 'non-specific' symptoms apparently unrelated across multiple body systems that are normally ignored, those are generally what you are looking for". He appeared surprised by that.

    A study a few years ago linked "growing pains" in children to later development of FMS. A child might have 10 or 20 other symptoms that also point to future FMS if they were recognized. A recent study I mentioned recently relates the development of Parkinson's disease to elevated MMA and low cobalamin in the CSF 20 years or more before the symptoms become Parkinson's as the mitochondrial malfunction damages neurons. These earliest symptoms are typically ignored for 20 years or more until the person has developed a serious condition. So how long is a person supposed to continue getting worse no matter how many physicians they go to before they decide that they have to do something themselves? I'm guessing here but of the people I have interacted with, something like 99% are completely unable to find or convince a physician to treat them with any version of a methylation protocol and even fewer physicians that would come to that diagnosis and treatment themselves in the absence of high homocystein. How bad off, how close to death, does a person have to be before they take matters into their own hands? Six months longer and it may have become impossible for me do that. At the end I could only read on some days and it was getting worse. I couldn't write or print readably any more. I could barely type and 1 in 4 letters was a typo. Every system in my body was failing. The medical system, such that it is, in the USA is failing 100,000,000 people purely at the diagnostic and treatment level for the hundreds of symptoms that are not macrocytic anemia, elevated uMMA or elevated Hcy or serum cobalamin so low the person has all sorts of damage, even if unrecognized. And even if and when it is recognized it is generally treated in the most ineffective worst possible way that has any effect at all. So how many hit the medical jackpot and are diagnosed while they have just functional symptoms that haven't caused damage yet? Any at all? How many are treated effectively after damage has occurred? 10,000? 50,000? More? Less? I got tired of being the human sacrifice to the gods of diagnosis by tests that ae not predictive. I encourage people to heal themselves when the medical and insurance system and their physicians have totally failed them and are likely to continue doing so. Most of these people will NEVER receive adequate treatment if they don't do it themselves. They don't have to continue being ill for decades waiting to get struck by lightning

    Where is the point at which it causes far more damage to wait another day or decade or 5 than any likely damage from unsupervised usage of vitamins and supplements. The truely severe reactions you mentioned in the paper are extremely rare. And you don't even mention the most common potentially severe occurrence, hypokalemia. How many physicians recognize the symptoms of that before it becomes dangerously severe? The blood levels don't really tell the story because symptoms can start in the low normal range.

    It's a nice theory that all these people ought to be doing it under a knowledgeable physicians care. It's a theory with which I agree. Practically speaking I doubt that will happen any time within the lifetimes of anybody reading this in the USA unless there are huge unforeseeable changes.
  14. Freddd

    Freddd Senior Member

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    Hi Rich,

    I realize the barriers they face in adopting non-drug treatments, and I sympathize with them. They have a difficult system in which they must work. Insight on this can be gained from the recent interview with Burt Berkson:
    http://www.honestmedicine.com/2009/0...terview-t.html

    That interview is a must read to get an understanding of what I have been calling institutional blindness.There are none so blind as those who will not see. I totally lost "faith" in the system when I realized that not one of my many docs was actually willing to solve my problems and save my life, as was pointed out in the honest medicine interview. They were not there to save my life, they were there to treat me according to the standards of care. It is still a problem because these b12 therapies properly done can get a lot of people up out of wheel chairs or prevent them from being there in the first place. Nobody wants to know. The Pernicious Anemia Society in the UK is seeking changes in the law to make injectable b12 available without prescription so that people can have daily injections without having to fight their way through years of red tape and physicians being struck off for prescribing b12 outside of "accepted" protocols.

    I come out of a managed care oriented background. One of the statistics used (or at least used to be used) was that preventing over-treatment was just as important as preventing under-treatment. Hospital aquired infections, drug mistakes and other such risks are part of the increased risk from over-treatment. Compensation plans have huge effects on treatment. Requiring preauthorization for some procedures worked out very well in controlling costs and aiming people towards less risky or more effective versions of therapy. One of the things we did was score providers on effectivness of treatments. This scoring, because of data limitations was not ideal but we used it in providing "second opinion" lists to people. We, as a group of consultants, did office inspections, enforcing modern cleanliness and sterilization standards and all sorts of other things including examining selected patients (via data mining) with chart comparisons. As these were closed panel systems "inadequate" providers could be removed before federal laws made that near impossible.

    When compensation is based on procedures without consideration of results you get a lot more, and more expensive, procedures. Actually curing somebody cuts off a reliable stream of revenue. With a capitation payment system, wherein the provider is paid a fixed fee per month per patient, utilization tends to be controlled and providers try to find the most effective treatments as they earn the most from those in the best health, so "health maintenance" is encouraged. Others have done this by having their providers on salary so there is no incentive to increase procedure count and expense. Drugs through a hospital pharmacy are a profit center so in "for profit" systems the most benefit to the system comes from the most expensive drugs.

    So much is going to depend on how this next generation of software determines "effective treatments" for "evidence based medicine". If something works as well as Alpha Lipoic Acid or LDN or whatever as stated in the article for certain things then, these things would rise to the top unless all non-drug therapies were excluded. The Codex Alimentarus, written by the chemical/pharmaceutical industry, is the current danger on the horizon, banning any effective vitamins and making them prescriptions. I heard from one woman in Norway where her calcium supplement changed from an $8/month supermarket item to an $80/month prescription. It of course bans vitamin b12 larger than some ridiculous low level like 25mcg and bans anything but cycbl and hycbl. And of course only folic acid is allowed, again in small doses. This would make it unlikely for millions to every be able to heal and make the monthly "pharmacy" cost for somebody like me be thousands of dollars per month for the vitamins I buy for far less.
  15. Freddd

    Freddd Senior Member

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    A way to a solution

    Hi Rich,

    Now to consider a pathway to the solution. I believe that there is a kind of system that could allow and encourage the types of treatments we are talking about here. It would be working through the part of the healthcare system I know best, group health but with some differences the insurance companies will dislike.

    When we, the consultant group which actually consisted of multiple groups of consultants that included attorneys, accountants, MDs, DDSs, hearing and opitical specialists and systems/data analysts and so forth so that we could bring whatever specialty knowledge was needed to whatever exact situation we encountered. We were working with group health benefits of all kinds, both union plans and management, municipality and companies, many other contracting group types. We worked for the group trustees who represented the interests of the members. We designed the plans initially in some cases and/or modified them as time went on. Since we had these groups for fairly long periods we could change the benefits and payment structures etc each time the contract came up for bid. We would have multiple carriers competing for the specified benefits package. We also required 100% data for auditing the insurance company and providers. As we had the same providers showing up in multiple plans we could compare their behaviors amongst many different plans and reimbursement methods.

    We could setup groups with whatever characteristics we wanted and the insurers would price their quotes appropriately so we could put all the diabetics in one group and negotiate very good drug and supplies deals and have a person with more specialized knowledge handling it. Within the whole group each member made the same contribution. This just amounted to a method of internal bookkeeping as they were members of the benefit plan that contracted insurer services. So we could set up groups that people who had certain characteristics on certain screening tests to opt into for an emphasis on experimental nutritional approaches and even, insurance tradition forbid, supply the supplements, or more likely contract for them with a hefty discount. The insurer really doesn't care what the contractual benefits are as long as they can charge a competitive suitable premium and make money. The trustees would want us to be able to show results with equal or lower costs. And that comes down to having them track the right information and selecting who is offered the opt in plan or plans.
  16. Freddd

    Freddd Senior Member

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    Another possible way to a solution

    Hi Rich,

    Your remark about "multiplier effect" got me thinking. I'm just brainstorming here and the previous post. My job really was about solving problems that the "plans" could not solve for themselves. Perhaps a group approach from a different angle might work. Perhaps via a screening program, selecting a group of persons in a specific geographic area, however it is done, have a group working under the guidance of a physician and nurse practitioner. Having the screening and testing as needed done by the nurse practitioner with specific training to recognize all these b12/folate problems including methyl-trap, methylation block and the patterns of non-specific symptoms that shout out if a person is listening, and software will reduce cost considerably. The initial 3 months might have weekly meetings, both as support, to ask questions, for fine tuning and to watch for problems and provide testing as required. After the initial hump then monthly meetings and then guided rehab as that becomes possible. Multiple multi hundred dollar tests per person won't work for people without insurance. With quick recognition of what are problems and what needs to be looked at by a physician and when additional tests might be needed, hopefully severe problems could be headed off. The whole thing could be conducted as a study with A-B crossover with matched pairs with different protocols. With the right software, the pair matching and record keeping would be fairly simple.

    Some of the funding could come from the participants themselves. In a meeting format costs might be kept to $5 per meeting. Much of the rest of the costs might be recoverable from contracting with a vitamin retailer who sells at a defined competitive group rate and paying a percentage to the program.

    Perhaps we come up with a new group benefit, a "Nutritional Supplement Card" that defines certain supplements or types of supplements, the formulary, to be purchased as specified in specific programs.

    And I still like the idea of the "Race for the FMS/CFS cure", a literal set of 5k races several years down the road for which there is publicity and sponsors and if we play the cards right (or wrong in some views) a reality TV show to chronicle it. That could pay for the whole thing Though I would not want people to have to act as irrational and infantile as on so many "reality" shows to heighten tension. And holding interest for 3 years without temper tantrums might be difficult.

    Right at the top of this page I am writing this on is an ad for "Nutrient for FM & ME/CFS Relief". It's a pathetic assortment of vitamins and other things. It's not terrible except that it has only 30mcg of oral hycbl, folic acid, the wrong carnitine, no active b12s, no active folate and isn't likely to do much of anything when compared to either of our favored protocols and costs as much as a similarly cost limited program of effective supplements per month.



    Any way, just a few more things to think of.
  17. richvank

    richvank Senior Member

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    Hi, Freddd.

    I don't know much about the insurance business, and don't understand all the terminology used there, but you clearly do, and maybe you are in a position to get something going in terms of a program in which the insurance companies would pay for certain targeted nutritional supplements that have been shown to actually cure or at least considerably help some conditions, such as ME/CFS or the larger range of B12 deficiency problems that you have been addressing.

    It would seem to me that it would be in the interest of insurance companies to encourage treatment with nutritional supplements, if they can be shown to actually be effective and can actually lead toward cure, rather than continuing to pay out for patented (and therefore high-priced) pharmaceutical treatments that only help somewhat with symptoms, but leave the people ill chronically. I've wondered why they don't seem to do more of this. Is it because they don't want to open the floodgates of having to fund all sorts of supplements that may not lead to cures, or because there is not enough evidence that these things work, or because their clientele can shift each year, so that their incentive is just to try to minimize costs for the current year and not try to give their clients long-term help, or because the dominant stockholders of the insurance companies are also major stockholders of pharmaceutical companies, or what?
    I'm guessing that you would have an informed opinion about this.

    Best regards,

    Rich
  18. Lala

    Lala Senior Member

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    Hi Rich,

    DE means diatomaceous earth. And I took 300-600 mg of ALA daily. I looked into the Cutler protocol, but the problem is removing amalgams..
    I think DE could slowly detox mercury, at least producer claims that.
  19. richvank

    richvank Senior Member

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    Hi, Freddd.


    "Right at the top of this page I am writing this on is an ad for "Nutrient for FM & ME/CFS Relief". It's a pathetic assortment of vitamins and other things. It's not terrible except that it has only 30mcg of oral hycbl, folic acid, the wrong carnitine, no active b12s, no active folate and isn't likely to do much of anything when compared to either of our favored protocols and costs as much as a similarly cost limited program of effective supplements per month."

    That's Marty Pall's protocol. On the CureTogether.com site, it ranks pretty low in the average effectiveness ratings that people have given it there. Marty is in the process of modifying it, and he wrote me that his revised protocol will include a higher dosage of liposomal hydroxocobalamin, as well as some L5-methyl tetrahydrofolate. I expect that this will give it a boost in effectiveness, though I know you are not big on hydroxocobalamin. His rationale for adding these is different from mine, and we will no doubt continue to debate that, but I think the good news is that more people are likely to be helped by his new protocol.

    Best regards,

    Rich
  20. Freddd

    Freddd Senior Member

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    Hi Rich,

    What bothers me is several things. First is the cost per day of about US$3.75. For US$2.25 per day a person could have a far superior program with separates including all the basics, all the essentials and some additional critical cofactors, except for the multi-mineral (rather than separates) with both active b12a and active folate. For $3.75 daily a could have all that and all the bells and whistles including selenium etc and some higher doses. For cost effectiveness there is no comparison at all since the active b12 protocol would be massively more effective than that specific set of supplements in the ads with 30mcg of hydroxycbl which isn't even enough to actually fill the transport system if everything works according to theory, which it rarely does in sick people in which some of these assumed to be working systems are failing or they wouldn't be sick in the first place. There is plenty of research showing that it takes 1000mcg of oral cobalamins to be sure of absorbing 10mcg. I know what it is like to be told "my super duper therapy will fix you up" over and over and have it fall flat on it's face over and over at great expense which is a sacrifice to afford and then slapped in the face with the rotting mackerel of ineffectiveness. I went through a lot of docs and a lot of alternative therapies, not one of them worth a bucket of warm spit.

    The problem is that after the thorough disappointment that such a set of supplements is likely to be a lot of people who could be helped may just give up.

    If you have a concern about too much mb12 why not simply reduce the gross sublingual dose to 250mcg allowing maybe 50mcg to be absorbed and the 3000mcg adb12 once a week and cut the folate to whatever amount of mfolate is comfortable to you. This would be far more effective than any amount of hydroxycbl in any case and not cause any theoretical over driving of the methylation cycle and cut the cost a bit. It might take a decade or more to reach equilibrium, if ever, on that amount and would do diddly about those with CNS/CSF deficiencies but it would still be far superior because it sidesteps so many assumptions of everything working right. As so many people have been educated "assume" means "makes an assume". Each assumption built on the entire complicated b12 absorption and distribution system actually working in people in which it has already broken down reduces the probability of effectiveness, decreases the cost-effectiveness and keeps people sick. As the effects of hydroxycbl defining what b12 deficiency means cuts out 2/3 of the symptoms it makes it highly improbable that people will have reasonably complete recovery and will have dozens to hundreds of remaining puzzling symptoms that have no cure. What's worse is that these symptoms can, and do, continue to worsen even as some get better. It is at best a very partial solution, which is better than no solution for some people. There are some people absolutely terrified of mb12 even in absorbed quantities of < 50mcg because it has become almost magically evilly powerful. Yet for hydroxycbl to be effective at all it has to convert to mb12 and adb12 in the body and it therefor competes for methyl groups instead of providing them for the mb12 conversion. Mb12 has dose proportionate healing (non-linear) over the range of 1-50,000mcg/day. Hydroxycbl has dose proportionate healing over the range of 1-100mcg/day. Having hydroxycbl in quantities to diffuse doesn't appear to do much unlike mb12 and adb12.

    My maternal grandfather had MS and b12 deficiency. My biological mother has plenty of "nonspecific" b12 deficiency symptoms and had colon cancer, one of the cancers suspected as being caused by mb12 deficiency. One of my half sisters had a heart attack in her 40s.

    Anybody here can try an A-B crossover. After a year on a hydroxycbl program there will be plenty of symptoms left for the active b12s to be differentially effective on from the first day and no symptoms will return. After a year on an active b12s protocol there will be nothing left for hydroxyb12 to be differentially effective on and many symptoms will start returning over the weeks and months.

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