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Discussion in 'Latest ME/CFS Research' started by Cort, Aug 7, 2009.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Freddd,

    A thought while you are putting this together: could you give options for those who just haven't been able to tolerate even tiny doses of methyl B12? I am taking all the other supplements that you have recommended (and have been for some time), but when I tried substituting sublingual methyl (Jarrow) for sublingual hydrox, I got such run-away detox symptoms that I couldn't manage it.

    I tried different doses and when I got down to about 100 mcg and that much put me in bed for 2 days, I stopped taking it. I have had to reduce my hydrox intake, also, to very small amounts as it too starting to bring out way more detox than I could handle. I had to lower my 5 MTHF as well. These changes happened after my methylation function improved.

    So it would be great to have options for possible responses like this.

    Sushi
  2. Freddd

    Freddd Senior Member

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    Hi Sushi,

    Can you give me in detail all the symptoms that occured and whether they we intensifications of existing symptoms, "new" symptoms, reversions to previous symptoms as well as what symptoms were not changed? Are you taking TMG?
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Symptoms

    Hi Freddd,

    These are classic detox symptoms, not the usual ME/CFS stuff, except that OI gets exacerbated, cause when the liver is working hard it can hold up to 2 liters of blood--according to my doc.

    So, since I have had a methylation block--probably for decades--I've also had a block in the detoxification channels and a huge backlog built up. I was aware of how toxic I was for years and could never tolerate detox protocols. When methylation starts functioning better, detox happens and that backlog starts to get drained. So you have to go slow--tiny doses for many--in order to control the rate of detox.

    A number of people, including me, have observed that B 12 intake was the most critical factor for controlling the rate of detox. when working with a methylation protocol. I could tolerate fairly normal doses for the first year, but then when lab tests showed that methylation was picking up (as well as glutathione and active B 12 levels), I had to lower all my doses.

    Symptoms I get are massive headaches, body aches all over, nausea, sinus and ears clogged up, lymph congestion and tenderness, pain in the kidney regions, total lack of energy. I ordinarily spend about an hour a day on detox support therapies like FIR, epsom salts baths (I am fine with sulphur), light castor oil packs, skin brushing etc. Plus I use binders like charcoal and psyllium and take l chlorophyll. I do take TMG.

    Even with all this, using methyl B 12 increased these symptoms to the point of "can't do this--too much strain on the body." Also even 500 mcg of injected hydrox put me in hell for 2 weeks a little while back.

    So that is the story in brief (or maybe in long?)

    Sushi
  4. Freddd

    Freddd Senior Member

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    Hi Sushi,

    Just a few more questions. What is "OI"? What is "FIR", I assume not a tree. Have you taken or are you taking glutathione or glutathione producing supplements in any form or combinations including un-denatured whey, NAC, glutamine, NAG, etc - from any sources? Have you tried adensoylb12 (dibencozide) and if so how much and what was your reaction? Are you taking SAM-e, how much and what was the reaction?, Are you taking l-carnitine and what was the reaction and which kind? Are you taking Metafolin (methylfolate) and if so, how much? Are you taking Jarrow B-Right or if not, what b-complex? I am trying to fill out the picture and get an idea of your body's inbalances.

    What toxin or toxins do you think that you are dealing with? You mention epsom salts bath; have you tried a high density epsom salt soak in a floatation tank?
  5. Freddd

    Freddd Senior Member

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    Hi Sushi,

    Yet again I have a few more questions as I have thought about various aspects.

    These are classic detox symptoms, not the usual ME/CFS stuff, except that OI gets exacerbated, cause when the liver is working hard it can hold up to 2 liters of blood--according to my doc.

    Where does this classic detox pattern show up?

    A number of people, including me, have observed that B 12 intake was the most critical factor for controlling the rate of detox. when working with a methylation protocol

    This is Rich's methylation prorocol you speak of? Or a similar one?

    You have been taking hydroxyb12 only up until recently?
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Freddd,

    I haven't yet tried the adensoylb12, though I have bought the brand you recommended. Didn't want to try it till things settle down. I was taking the Jarrow sublingual, and use Perque sublingual hydrox.

    Other supps: no glutathione or precursors of any type, L-carnitine fumarate (can't tell any reaction one way or the other), FoloPro (metagenics--at this point can only tolerate about 100 mcg though I took as much as 800 mcg earlier--this is 5-MTHF), SAMe 200 mg--in foil bubble pack kept in fridge (my SAMe levels test normal now, were very low, I took 400 mg earlier, SAMe feels good for me), I take all the B vitamins individually in their bioactive forms as I want to avoid a B complex that has folic acid or cyanocobalamin.

    I live in Hicksville and no one here would even know what a floatation tank was--I use the bathtub! 2-3 cups of Epsom Salts plus ginger), FIR is Far Infrared Sauna, OI is orthostatic intolerance. Like us all, I have some screwy genes but don't have the MTHFR polymorphisms. I do have Ehlers-Danlos which affects collagen formation. I don't seem to have a problem converting hydrox to bio-active forms.

    As far as toxins, there will be the garden variety that we pick up from "normal American life," (but I haven't been eliminating them for years), I have traveled a great deal internationally and have had way too many vaccinations--nasty ones like yellow fever, cholera, and multiple small pox, as well as anti-malarials such as mefloquine. I did have multiple parasites, but have been treated very well for them and I think they are gone.

    Then there will be a lot of DDT from childhood exposure (they sprayed that stuff everywhere!), gotta be mercury from amalgams (mine have all been removed but before they knew to take precautions--I did have about 20 EDTA IV chelations, but EDTA doesn't grab that much mercury). I also have several other heavy metals, high viral loads of Epstein Barr, medium levels of C Pheumonica, Herpes Simplex--maybe some others. Gut infections are pretty well cleaned up, dysbiosis is also much improved.

    FIR is a big winner in my life! It gets me out of some bad reactions. My diet is pretty clean--only sins are rye crackers and a tiny bit of dairy in tea.

    That is some of the picture. Hope it gives you an idea. Also, my situation isn't unique--others have the same sorts of problems controlling detox once methylation starts picking up and glutathione levels rise and start going after toxins.

    Sushi
  7. Freddd

    Freddd Senior Member

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    Hi Sushi,

    I also have the DDT exposures and at least 4-5 smallpox vaccinations though no international travel and didn't pick up on those other things. I have a floatation tank. I bought it in the early 90s when I was totally miserable. For some years I got in the tank every night at bedtime and spent about 5 hours or so. It has 1.25 density epsom salt solution at about 93.75 degrees and so is temperature neutral. Even a fraction of a degree too warm and sweat fills the eye sockets so one has to be at temperature eqiuilibrium. It helped a lot with pain control and getting rested.

    Here is the pattern I see. What it means is yet to be determined but may give some guidance for trying certain things, experimenting, in a different way. It's not an answer as such, just a pattern. As I've mentioned before the people with the most extreme reactions to methylb12 are the ones that have been on inactive cobalamins; cyanocobalamin AND hydroxycobalamin. Your reaction here is certainly one of the most extreme I've seen. Also, as I've mentioned elsewhere, there is an "order dependence" on what reactions occur and how when starting up these various supplements. My experience, personally and with hundreds of people, and those experiences related by Dr Neubrander and Dr Myhill in the course of their practices all match. The pattern of these situations are based on methylb12 without any hydroxyb12, and adding the methylators generally after methylb12 goes through it's intial startup reactions. The patterns seen is an immediate set of reactions that diminish fairly rapidly, often in the first month, but virtually always in the first 6 months, and rarely with the severity you are experiencing. Further most of your symptoms being experienced are methylb12 deficiency and/or adenosylb12 deficiency symptoms, some body and some central. Hydroxyb12 doesn't get at the central symptoms at all. Again, this is a pattern I've seen only in people taking hydroxycobalamin and cyanocobalamin. That they are getting worse the longer you go would appear to confirm that. The very large reaction you had to the Jarrow appears to confirm that. The things that you have occurring normally would have all healed in the first year on the protocol I've been working with.

    The type of detox reactions, and the attribution to detox, appears to be limited to people on the type of protocol that you have been on. That could be because of the order of supplements, the combination of suppliments and/or the presence of hydroxycobalamin, or possibly by something fundamental in the makeup in some way of the persons choosing a specific protocol; perhaps because of what symptoms they have and so where they choose to get their information. Without a controled study there is no way to tell. The theoretical and hypothetical basis one is coming from appears to shape both the reactions and their interpretations. If set A of reactions is frequent and common with protocol X and set B of reactions is frequent and common with protocol Y there could be many different causes or combinations of causes is all I'm saying. That could be suggestive that if you were to switch protocols that you could change the reaction set, but that is not guaranteed. There are no guarantees in any of this. However incidence of the kind of reactions you are having in hundreds of people who have tried the active b12 protocol that have reported to me is "none reported". If it happened it wasn't so severe that they thought it worth mentioning or differentiated it from the much more common startup reactions.

    Let's consider methylb12 as a methylator. Methylcobalamin, and all the others, have a molecular weght of over 1600 of which 18 is the molecular weight of the CH3, the methyl group. Compared to TMG, which has 3 methyl groups attached to a low weight sugar, or choline which has 4 groups or 200-400mg of SAM-e which has considerable methyl groups to donate, methylb12, say 1mg has about 11mcg of methyl group to donate, methylb12 is a lightweight methylator. It normally generates a small amount SAM-e in the methionine-homocysteine process, SAM-e being the universal methylator in the body. One mg of methylb12 generatres very little SAM-e compared to taking 200mg of SAM-e. However methylb12 does 600 other things in the body. It also removes nervous system toxins of some varieties by giving up the methyl group and attaching the cobalamin to it, such as cyanide, or nitrous oxide, or botox and other bacterial toxins and in becoming an inactive cobalamin by attaching to those things is promptly removed from the body by both the kidneys and the liver. Hydroxyb12 also attaches to some of those same toxins and removes them the same way. The difference is that methylb12 has healing characterisitics not duplicated by hydroxyb12 because hydroxyb12 can only generate a trickle of mb12 and adb12 which are the ONLY 2 active forms. Reacting with cyanide, a common toxin is a chemical reaction as the cyanide causes a plus 3 oxidation state compared to the plus 2 of hb12 or plus 1 of the mb12 and hence sort of literally hijacks the lower oxidation state coblamin and disables it. Hb12, mb12 and adb12 can all be used in large quantity (multiple 35 gram infusions) to detoxify cyanide poisoning. It takes a lot compared to very little cyanide because cyanide has a weight of 26 compared to the 1600+ cobalamin and each 1600+ cobalamin can only attach to one cyanide group.

    So, as methylb12 generates SAM-e which you find agreeable, as do I, compared to 200mg (200,000mcg) of SAM-e, the effect of 1000mcg (1mg) of methylb12 as a methylator wouldn't even be noticable. The hyper reactivity you are having is characteristic of extreme methylb12 deficiency. I was hypersenstive as well and could easily rank various brands of b12 because of that. To come up with the ratings for the brands I assembled a panel of 5 hypersensitive testers. I had taken cyanocobalamin for 30 years. My intital reation to a 5 star 1mg methylb12 floored me, quite literally for more than an hour. At the end of the time I almost flew up the stairs for the first time in 16 years to tell my wife the news. The lights had come on, a lot of the severe abnormal fatigue had lifted and my prayers had been answered in a bottle. In the vegetarian cultures the "tantric meal" includes active b12s in beef and fish and omega3 oils in fish. In a vegetarian this can produce a profound effect in several hours that aids in having a spiritual experience.

    There are research papers that indicate that a variety of inactive cobalamins attach to the receptors even more vigorously than the only two active ones thereby blocking active b12s and causing certain aspects of induced deficiency. Transcobalamin 3 (TCIII) is a protein molecule that wraps up inactive b12s, becoming holotranscobalamin 3 (HTCIII) and safely transports them to the liver for removal from the body. The kidneys also preferentially remove inactive cobalamins. The body has evolved mechanisms to deal with this hazard. People's reactions to inactive cobalamins can be quite extreme, depending upon their genes and perhaps other things like toxins, and shouldn't be confused with genunine startup reactions to the real active b12s. They are really quite different. I have been accused of having something against the intentional giving of inactive cobalamins. I do. They can make some people quite ill as well as being totally ineffective in about 20-40% of people generally and over 60% of people with certain sets of genes.

    So looking at your severe active b12 deficiency symptoms, in part as a reaction to hydroxyb12, makes a lot of sense from the theoretical and hypothetical basis from which I come as well as all of my pragmatic experience. Of all the people I know of who switched to methylb12 and adenosylb12 from hydroxycobalamin, not a single one switched back. I know of one man who still has a load if it in his freezer, free from NHS in the UK, as he would rather buy the active forms. And he had beneficial effects from the hydroxycobalamin though he only took it a few months so the detrimental effects hadn't had time to build up, if they were going to. Extreme deficiency can occur without regard to test numbers and despite taking, and maybe because of taking, inactive cobalamins or even only 1 of the active cobalamins.

    Anyway, if what I have said makes sense to you, or you have questions and want clarification or some ideas of what to do to make the changeover, let's talk about it. This is a path I've walked, that of extreme reaction to b12 and severe deficiency problems. There are no guarantees. I was desparate because I had been so ill for so long and my body was breaking down and didn't have far to go to stop working entirely. I do understand fear of changing things because "what if they get worse?". They already are worse. And all sorts of people had all sorts of hypothesis including the "detox" theory. I had tried all manner of things for 25 years. Only one approach worked for me, the one I'm describing. Good luck and good health.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks Freddd!

    For the detailed look at this.

    I obviously have to consider all this as I can't live with the responses I had to methyl B12 initially.

    And, for clarification, I am not getting worse symptomatically, but much better after about 18 months on a methylation protocol. Many of my symptoms have disappeared and labs are coming back normal for the first time.

    Also a MMA test did not indicate deficiency in adensoyl B12.

    I would like to hear your thoughts on how to introduce adensoyl B12 and methyl B12 in a way I could tolerate, but I am not convinced that my response to methyl truly indicates an extreme deficiency in active B12. I am not being a "hard case," just have to be honest here. My response also fits with methyl B12 simply increasing methylation activity and thus detoxification. I am definitely detoxing as I am sweating out (sweating is a new phenomenon) nasty stuff and peeing out heavy metals.

    I am certainly willing to experiment--on a "low risk" basis! ;)--if you can think of a way around the severe reactions. I just wish to be very cautious here.

    Sushi
  9. Freddd

    Freddd Senior Member

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    Hi Sushi,

    Well first of all, if increasing from 200mg to 400mg of SAM-e doesn't have the same effect, I would doubt that it is a methylator reaction as that would produce at least 50 times as much reaction.

    Let's look at a way around all that. First stop the hydroxycobalamin, 100%. As TMG and SAM-e leave the system pretty quickly you can discontinue those for a couple of days before you start the other b12s. That way you absolutely won't have an increased effect from methylation. I don't expect that to change your methylb12 reaction in any way. My inclination is to continue the methylfolate as that is a mcg player in the methylation game and a very critically important cofactor. Then I would suggest ignoring the folic acid in the Dibencozide and start with a quarter of one of those. It's effects are quite different from the methylb12. It will directly populate the mitochondria going directly after the fatigue. The quarter may be intense but for me it felt good to have the energy flowing back. As it is only starting up the one process it isn't like kick starting 600 all at once. It is changed to methylb12 about as well as hydroxyb12 is, which is distinctly limited to about 10 mcg a day at best. If you don't have a problem getting cobalamins into CSF then it may have neural effects as well as your brain starts being energized. If it gets too intense, simply chew and swallow. The intensity will stop increasing as soon as the additional amounts stop diffusing through the tissues. Here is the thing. This is one of those areas where the idea of "charging up" the system has some validity. All adenosylb12 does is fill empty receptors in mitochondria and start producing energy. If that has already been done it is most likely you not feel it at all. If you are like me in that you don't convert forms well, this will tell you. The bigger the reaction, the more likely you have poor conversion of other cobalamins to adenosylb12, otherwise they would be all charged up after 18 months. For me saturation of body was reached with one tablet and the effect never happened again. Same with all my other hypersensitive testers. The body level adensoylb12 reaction was a one time thing. Some people need to take it daily, or even several daily, to maintain saturation and equilibrium. I take 5 at a time each 5 days because I need CNS/CSF saturation as well. I occasionally take 15 each month or 2 to confirm CNS/CFS saturation is being maintained on 5. It is. So the likelyhood of a short, not as intense or widespread reaction is what you are likely to see based in my experience with myself, 4 other hypersensitives and some hundreds of others, some also hypersensitives. Nobody at all has had an extreme reaction to it nor a prolonged reaction.

    So after the first quarter, I would do another quarter each few hours. Then I would do a whole one, assuming that everything is working out. My experience with both forms of b12 was that a ceiling intensity was reached with about the first 200 mcg or so making it into my blood. There was a lot of difference with the first 10 mcg, less with the next 100 and even less with the next 100 and very little with the next 1000. Both acted like something "approaching a limit". Approaching a limit is like walking halfway to a wall each time. While you never get there, you get close enough for all practical purposes. With methylb12 some gets converted to adenosylb12 and trickles into the mitochondria but never is enough to simply fill them so startup effects continue indefinitely from that alone.

    When you want to do the CFS/CNS saturation test, put 5 at a time under your upper lip, adding 5 each time they turn to mush. Somewhere between 15 and 20 tablets a second threshold can occur as the diffusion gradiant gets steep enough and you will have brain mitochiondria charge up. If it happens it is noticable but pretty minor in the scheam of things usually. A person with no symptoms and no deficiency will have no noticable effect from adenosylb12. A person at equilibrium will have no noticable effect at all. For me to have any noticable effect now, I have to completely abstain from adenosylb12 for a month.

    I've run single dose trials of many sizes with over 1000 people face to face. People with no symptoms have no effect from either active b12s. People with lots of the symptoms on the list have lots of reactions. Serum halflife of unbound cobalamins entering in a single dose start out at 20-50 minutes dropping to about 4 hours by hour 12 and average 12.9 hours for hours 12-48. Elimination is by the kidneys. If you get enough in your system, usually 2.5-5mg or more from injection or 30-50mg sublingual dose, then the difference is visible in the urine as anything from a slight darkening to a pink or orange tint depending upon other contents. This usually happens only once or twice per dose because it is ellimiated so quickly. By 24 hours about 22-40 parts per million of the original dose remain, say 22 nanograms for each mg injected. About 6 parts per million actually are bound if there is any place for it to go. Methylation reactions are biochemical reactions of bound methylcobalamin only, for instance in the homlocysteine to methionine conversion and DNA replication. Cyanide or nitrous oxide or certain other toxins ataching to cobalamin and disabling it are chemical reactions that can happen to unbound cobalamins that are then rapidly excreted. Unbound methylb12 can quickly find a parking space in a receptor. It has to be quick as it gets excreted otherwise.

    With b12 we are not talking avbout a drug that forces things to happen. It does only what it is supposed to do, fills only receptors that are designed or evolved for it, nothing else. it isn't known to be toxic despite being given in huge doses to people with kidney failure who can't excrete it or even larger doses to people with cyanide poisoning. Things that happen almost immediately or start happening are neurotransmitter production, nervous system transmission speed increases, toxin protection (ie protects against glutamate toxicity in nervous system), some bacterial toxins and some other toxins, cell division, homoctysteine to methionine conversion, immune system funtioning, conversion to adenosylb12 and occupation of mitochondria. Healing takes weeks to months or years but starts almost instantly until it stalls for lack of other cofactors. Hypokalemia can start within 3 days with potassium levels being pulled down with sudden healing startup. Other deficiencies can be caused as quickly or quicker which is why cofactors need to be present from the first dose. Many startup symptoms are other induced deficiencies causing a crash in processes that had just started up.

    After you have gone one day or several days or week or two, gotten comfortable with the adenosylb12 at equilibrium, but many things stalled as muscles can't heal without methylb12 also, start the methylb12. The method there would be a crumb at a time under the upper lip. However, equilibrium can't ever be reached by that method as it is excreted almost as fast as it is going in so startup effects last indefinitely. You may find it works best to do a crumb continuously all day for a few days and change to 1/4 tablet, then 1/2 and then a whole. What worked for me to put an end to endless startup for several months was a saturation approach. One day I just did one tablet after another. The next day 2 at a time all day. Within 3 or 4 days the startup effects stoped happening in response to each tablet. Within a week even the first tablet of the day was not noticable. I was disabled anyway. I discovered that more didn't make it more intense past a certain point. I discovered that 25mg one day would make 5mg the next day unnoticable. I was sick and tired of being sick and tired and put an end to it instead of endlessly teasing my body that was starving for it. It affected about 150 of my 175 symptoms that first month. By the end of that first month 25 or so were just plain gone completely. My doctors and all staff in the office could see the difference when I walked in after only 3 weeks. My exwife didn't recognize me after several months. People who hadn't seen me since the year before didn't recognize me. Everything was different from my skin to how I walked and held my body. In 3 years I lost 30 years of apparant age. My tissues had gone from breaking down to renewed. My eyes could focus. My voice was no longer rough and raspy but back to the silky tenor of my youth. My waistline was down 6 inches and my chest up 4 inches as my muscles filled out again.

    So here I sit hoping to be able to share this with you, that you too can see your way clear to give a different theory a chance. You can always go back to what you are doing. So far 100% of those making the switch you are contemplating have choosen to remain with the active b12s once they had givent them a chance. Good luck and good health.

    One caution. If you are taking CoQ10 and your blood pressure goes up, dropping the CoQ10 got rid of that for me.

    B-Right has 250mcg of methylb12 and absolutely no cyanob12. It does have folic acid but if one is taking methylfolate it appears to be of no consequence. It has mostly coezyme b vitamins included and microencapsulated inositol preventing "b-burps" and stomach discomfort.

    MMA test only detects a breakdown in the process at one point in the body. It in no way indicates sufficiency. It in no way indicates that there is or is not a CSF/CNS deficiency. If you really are sufficient then there will be no effect from adenosylb12 at all.
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  10. Freddd

    Freddd Senior Member

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    Hi Sushi,

    One thing I didn't mention in that previous reply is this whole thing about

    Also, my situation isn't unique--others have the same sorts of problems controlling detox once methylation starts picking up and glutathione levels rise and start going after toxins.

    That's just the point I was trying to make. This whole set of effects you are having consist largely of worsening b12 deficiency effects and may be an artifact of the protocol. People doing this other protocol are not having these reactions. Whether it is a difference in the protocol or the people or their symptoms I couldn't tell you but they don't appear any different.

    Out of hundreds of similar people to have zero examples of this as opposed to lots of others having the same sorts of problems makes it look protocol related. A change in protocol may change everything for you, or may not at this stage of things, no way to tell except trying.

    Also, discontinue the carnitine before starting the adenosylb12. Then titrate back onto the carnitine as that is what may have the really big effect after the adensoylb12 is in place. Order dependency again. You don't want to get hit with both at once and not know which was which. Order can really make a huge difference.

    One other small misunderstandfing to clear up. Hydroxycobalamin is NOT a methylator. It is a methyl receiver and becomes methycobalamin and then has been transformed into a methyl donor. It is a methyl neutral transaction. It receives 1 methyl group and then is able to donate one methyl group. It does this in an uphill energy transaction via a specific enzyme, which if lacking makes the transaction and conversion quite impossible. So whatever your reaction to hydroxycobalamin it's not becasue it increases methylation capacity.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Freddd,

    Thanks for this! I will try it, though I would like to hear more about what you describe as typical start up reactions so as to be able to monitor what is happening.

    I think that I would also want to start with an even lower dose, at least for one day, to make sure I don't get into one of those 2 week run-away detox cycles. I only know the next day if that is happening.

    So, please tell me about start up reactions!

    And again, thanks,
    Sushi
  12. Freddd

    Freddd Senior Member

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    Hi Sushi,

    Startup reactions for adenosylb12 are the ones I assume you are talking about.

    In man, AdoCbl is required in only two reactions: the catabolic isomerization of MM-CoA to succinyl-CoA and interconversion of alpha- and beta-leucine.

    http://www.ncbi.nlm.nih.gov/pubmed/8...gdbfrom=pubmed

    This has to do with energy production in mitochondria.

    Because adb12 is required in only two reactions it's role is inherently limited. It has very little to do with detox in general because it doesn't methylate, however, for chemical reasons it will be attached by cyanide as will hb12 and mb12 and be directly converted to cyanob12. There may also be some other toxins that will attach to it directly, converting to nontoxic forms and for immediate removal just as cyanide does.

    In the body as a whole it occupies mitochondria anywhere and generates energy. Mostly this is in muscle tissue. In males semen is given a goodly dollop of b12 and analogous tissues and fluids from the female may also receive such. It affects sexual funtioning, more energized, more intensity. It goes to the muscles which immediately feel more energized, less fatigued. It affects the nervous system, generally with a "brightening" of vision, a "lighter" mood, feeling less tired and rundown. Lifting of "brainfog" may occur. These are the immediate effects. Exercise tolerance increased rapidly. Over days to weeks it reduces burning muscle pain, tight muscles knots, tender spots, general muscle pain and allows the muscles to heal and grow, denser than they previously were. I have been converted from an all the time floater in a pool to a sinker for instance. When l added l-carnitine fumarate (acetyl l-carnitine was totally ineffective for me, this may vary by person) my aerobic exercise capacity immediately increased and was easier to keep increasing with exercise. I immediately started loosing excess water.

    Generally speaking it produced a very limited range of effects in very limited areas compared to methylb12. It does not add to methylation capacity. It affected muscles, mood and senses all via increased energy.

    I am not aware of any other startup effects in myself or anybody else. If lacking methylfolate adb12 effects may be severely limited. With l-carnitine in place, it may hit much harder. If severely lacking carnitine adb12 may have no effect. Alpha lipoic acid can increase effectivenss. It's generally best to start carnitine afterwards, Additionally, creatine and D-Ribose may be needed for full effect, also added afterwards, one at a time.

    It hepls supply the substrate needed for mb12 to produce many beneficial neurological and other effects.

    Good luck Sushi.
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  13. Sing

    Sing Senior Member

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    New England
    I agree!

    I like what I am reading here in your responses. I agree that researchers ought to be looking for physical causes of a physical disorder and stop wasting time with what I also feel amounts to the old beliefs that our kinds of problems are those of women suffering from sexual "hysteria". This goes back to Freud's time. The doctors and psychologists managed to really screw things up then, no pun intended, by (1) denying the real sexual abuse that was taking place and the responsibilities of perpetrators and enablers (dad, mom,uncle, grandfather, brother, cousin, neighbor, etc.). After first believing his patients, Freud soon re-interpretated all the confessions about a woman's sexual abuse as a child to be really a disguised form of incest interest--the women were really supposed to be interested in having sex with their fathers. This "flew" politically, getting fathers, etc. off the hook and victimizing the socially unpowerful women again. Then (2) real physical problems they couldn't work out easily with their old approaches were supposed to have vague female fantasy and fears at bottom, no pun intended. Having read the statistic years ago that 1 in 4 women says she was sexually abused, it would be easy to round up a lot of women with both factors, the history and the illness later. This is all a big waste of energy and focus. Let's keep these people on track looking for physical causes and physical treatments. We can look at other possible contributing factors later after we/they/we get this clearly in focus.

    Cecelia
  14. Cort

    Cort Phoenix Rising Founder

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    Hi Fredd - check out this Sample Group - http://forums.aboutmecfs.org/group.php?groupid=2

    We're starting a group to follow people on Mike Dessin's doctors treatment protocol.

    The problem with the groups now is that they're hidden from view in the main forum page but I promise you that I'm going to find a way to highlight them (and the Blogs).

    Here's some information on Social Groups

  15. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Yes the abuse rates, if true, or just unbelievable. I Cannot imagine to put it bluntly that they hold up in my neighborhood. If thats 's true that they must skyrocket in some places - perhaps the poor communities in rural and metropolitan Georgia?

    Honestly I think there's still a lot of stereotyping about women in the health professions. The fact that this disease mostly happens to women has not helped us in the male-dominated research world. THe NIH program on ME/CFS is in the Office Of Research On Women's Health - which has no money and no power - and has been sidelined along with this disease for the past 10 years. :mad:
  16. Jody

    Jody Senior Member

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    Canada
    Cort,

    I don't think sexual abuse only happens, or mostly happens, in rural or poor places.

    I think it can be just as prevalent in upper class areas and families. Financial pressures do not cause sexual abuse dor does financial comfort prevent it.
  17. Jody

    Jody Senior Member

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    And ... why Georgia?
  18. Sing

    Sing Senior Member

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    Not my question, but, maybe Georgia stands as a symbol for unconsciousness? The Deep South, etc.? I know it can be hard to credit it if you haven't experienced it or known people who have. It seems "off the map".

    But, yeah, Jody, sexual abuse happens in every type of family. That was part of the shocking news when it surfaced as a public reality in the 70's due to feminists' strenuous efforts to make women's realities part of the general picture of "reality". We tend to prefer to sweep these things off into the shadow areas of society, "the criminal classes", "ignorant people", etc., but it turns out to be a real problem throughout society. Glad it was credited.

    Now we need to get acknowledged too!

    Cecelia
  19. Jody

    Jody Senior Member

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    Yes Cecelia,

    Sexual abuse can happen anywhere.

    And, yes, absolutely, we chronics need to be acknowledged and not have our illness swept under the rug or distorted. Our illness and the way it affects us, our families, and everything in our lives, needs to be confronted and accepted for what it is.

    And then there needs to be a concerted united effort to cure it. Absolutely agree.
  20. Freddd

    Freddd Senior Member

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    Hi Cecelia,

    When I learned to see the characteristics of sexual abuse I was shocked to see it in many people around me at the supermarket for instance. I saw it in my mother and asked her about it. She said "They didn't call it abuse when I was young". I was saddened to find it in so many of my friends from when they were young. With the laws requiring sexual abuse to be reported by the Mormon bishops I think it is ignored even more today locally than when it was "handled privately and quietly" as "only a sin". I hardly knew a woman who hadn't been abused or sexually abused. And I know plenty of males who have been abused, if not sexually abused.

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