Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Aug 10, 2009.
thanks Sushi and Jen
That was helpful. I am sure I will have more questions as I proceed.
A veritable explosion of color greated my eyes this morning bringing
visual stimulation to the former drabness of all black.
No more PAINT IT BLACK!
We have already listed our adverse effects for you. Please take them SERIOUSLY.
YAY! I am SO GLAD to hear you FINALLY acknowledge this.
Maximizing Methylation--Dr. Mark Hyman
Just to throw more ingredients into this bubbling pot, here is a link to Dr. Mark Hyman's blog entry on methylation:
Great to see you joining the game!
YAY! I am SO GLAD to hear you FINALLY acknowledge this
I suggest that you are being way overdramatic in this. I have never not taken your reactions seriously. You are jumping to conclusions in this. I have always maintained that these protocols are experimental, if you go back and actually read what I have written, poorly formatted and drab black as they may be. What I found dubious are your one size fits all explanation for the reactions and overly dramatic presentation of such, trying to shoehorn 600 or so possible reactions into one and only one explanation that may not fly if one examines the details.
As far as having listed the symtoms they are mixed in with a lot of rhetoric and would be much easier to assemble if you were to extract them saying exactly what you mean in a separate and concise post that also explains to us who don't have the same theroretical basis or assumptions. And I don't think that you anywhere actually state what is actually dangerous, and why, as opposed to uncomfortable or miserable. I don't have the same assumptions you do so listing a few buzzwords and expecting me, or a lot of others to understand why they indicate life damaging or threatening dangers dosen't work. I suspect that this difference in assumptions and theoretical basis is why you don't appear to understand what I am trying to say a lot of the time and come up with what looks to me to be wild interpretations. Understanding often requires a negotiation of meaning.
I was not being WAY overdramatic about this. I really meant it. But now I take it back, because obviously you are still resisting to completely acknowledge the FACT that several of us had rather severe adverse effects to your protocol, namely Brenda, Klutzo and I. And, for some reason, you are in need of a "theoretical basis" for the extreme and rather frightening effects that we had.
"What I found dubious are your one size fits all explanation for the reactions and overly dramatic presentation of such, trying to shoehorn 600 or so possible reactions into one and only one explanation that may not fly if one examines the details."
Okay... so what comes to mind here is the story about the kettle and pot. Actually, I think it has been you that is trying to "SHOEHORN" all of OUR adverse effects into "ONE and ONLY ONE theory," which is the theory of "START UP EFFECTS." You have not been very receptive to hearing us out, because of this.
ARE YOU KIDDING? I am not about to risk "life damaging or threatening dangers," in order to prove (to some guy on the internet) that something is not good for me. The idea here is to STOP BEFORE you get to that point. When I am having heart arrhythmia and shortness of breath for an entire day, that is a VERY CLEAR SIGN to me that my body does not approve of what I am doing to it. I don't need to justify that with twenty pages of proof.
It sure does!
With all due respect, can we please stop the unproductive posts? If Fred's suggestions aren't working for you, then move along. No need to drag it out. I'm one post away from unsubscribing to this thread. It's hard enough being sick without getting an email every time something is added to the thread, only to find out it is nothing productive.
In regards to what is productive or unproductive, I do think it's exceedingly important to clarify that some of the side effects folks so willingly posted were indeed serious and maybe dangerous. When you put a protocol out there, you are taking on a serious responsibility, even on the internet. You don't want to be practicing medicine without a license or advising people how much to take. You can only really responsibly say, "This is what I did." Without testing you can't prove that anything is startup or not. It takes courage to put the protocol out there when nobody asked, BUT there is a danger of overstating it, ignoring risks, or in wanting to help or answer questions, inadvertantly taking on the role of medical practitioner.
So it needs to be clarified and thoughtfully. So I myself find the thread productive.
Interesting the adverse effects you mention. As I am much on the lookout for these things too I am beginning to have some ideas regarding differences in the two programs.
Two other persons experienced ileus (cessation of peristalsis of the gut) for 12 days after starting this treatment. Both resumed the treatment later, after their peristalsis restarted. One wrote me recently that this protocol had helped her more than any other. However, she has diastolic dysfunction and has reported being "toward end-stage M.E."
I know of myself and several others who were on Reglan prior to starting active b12s because of problems with peristalsis. None have had cessation of peristalsis as a result of active b12 usage but rather as a pre-existing condition and most have been able to decrease Reglan as neurological healing progressed to very occasional usage. Im down to once a month or less currently. I know of none taking it as often as prior to mb12.
The third person had a diagnosis of fibromyalgia and a history of autoimmune diseases. She had not (and has not since) been diagnosed as having CFS, for which this treatment was actually designed. I have never recommended it for fibromyalgia without CFS, because I have not had a theoretical biochemical basis for doing so. She developed autoimmune scleritis while on this treatment, and was treated with topical steroids. She had a number of visits to her doctors to take care of a flare in her autoimmune disorders. Since then she has started to use low-dose naltrexone, and this has been a big help to control her pain
Most of my experience is with a population that has a larger proportion of fibromyalgia, without CFS, than here with a pretty good sprinkling of autoimmune diseases with Hashimoto's Thyroiditis especially frequent, and hypothyroid of unspecified origin right behind it.
Neurological and neuropsychiatric problems including mood and personality change are common and vary based on previous forms of inactive b12s taken. The muscle pains, neurological pains and generalized pains and neurological and neuropsychiatric changes respond well to mb12 and adb12.
The participants are often earlier in the process, still getting diagnosed, not successfully generally despite many physicians, though some have been ill 20-30 years. Their physicians generally havent a clue and they have often been ill treated by physicians. They generally have not been introduced to the ideas of methylation protocol or anything of the sort. If they have been taking cyanob12 or hydroxyb12 it has generally been only recently started with a number of dramatic exceptions. Those taking it longer tend to have more severe reactions. They generally have not had glutathione or precursors nor methylfolate or quite a few other supplements.
The other person later learned that she had mold illness, and has reported that mold avoidance and treatment for mold toxins (cholestyramine), together with the methylation treatment, have restored her to complete health, so long as she maintains avoidance of exposure to mold. She reported recently that she continues to take vitamin C, cholestyramine, and three of the supplements in the methylation protocol, because continuing to detox is lowering her sensitivity to mold.
Recently a couple of people have uncovered mold illness as a comorbid situation. They had no particular bad reaction to the supplements but rather a lack of expected healing and continued problems. Rather than go to injections and increasing doses, as there was no indication at all that would help, I suggested that they should look deeper. As you report, cholestyramine and mold avoidance have turned out to be the solution. Comorbid situations are very frequently uncovered
I now think that it is very important that a physician be working with a person while on this type of treatment, to make sure it is appropriate for them and to catch any adverse effects that might occur.
Working with a physician is certainly ideal, even better if they have some correct understanding of what is going on. My internist certainly does his best to make sure that I dont get into trouble and does monitor with some tests to the limits of my available funds. However, when most physicians idea of b12 therapy is 1mg once a month of cyanob12, there is a massive gap in understanding.
When most dont recognize somebody with 100 deficiency symptoms as being deficient if they are not outright macrocytotic, there is something very wrong. Coupled with an array of other vitamins and minerals they have no idea at all. The protocols they believe in and practice were killing me. How do you suggest that physicians become educated in this? All the ones who believe in inactive cobalamin therapies would have doomed me and my children and many others and condemned even more to a lifetime of poor health.
It goes much wider than that as between 20% and 40 % of undisputedly deficient persons show no effect from hydroxyb12 and cyanob12 in their many respective studies. This is hardly what one would expect if that characteristic were limited to an extremely rare IME or combination of IMEs. Further, with research showing a depressed cobalamin level in the cerebral spinal fluid of people with CFS, FMS and Alzheimers compared to controls perhaps CFS and FMS in fact selects for that 20-40% of population. Perhaps that is an independent factor.
I further have never met, read information by or talked with any physician who has any idea of how to boost cerebral spinal fluid cobalamin levels to the point of triggering a healing response in any population or is even aware of the problem and need. So it looks like the best a person is likely to do is find a physician who will monitor them and try to keep them out of trouble without actually understanding what is going on. And as so many have reduced access to health care because of no insurance that adds a further complication.
I certainly didn't (and don't) want to harm anyone, and I'm sure that others here feel the same. The whole goal is to help people, not hurt them. I was trying to develop an inexpensive, simple treatment that would work for as many people as possible. I think I partially accomplished that, but I learned some things. One is that each person is unique, and they each need personal attention from a knowledgeable healthcare provider while on treatment. Another is that depending on the particular case, they are likely to need additional treatments to deal with some of the other aspects that have accumulated, such as certain infections and toxins, as well as some of the factors that led to their illness initially, such as mold avoidance, stress reduction, attention to food allergies and sensitivities, and other factors.
None of us want to see anybody harmed. I suffered a great deal of harm from my physicians because of the incorrect knowledge they had including a belief that inactive cobalamins and folic acid works well for everybody. Seeing prescriptions such as Metanx around certainly helps with that a bit.
How do we educate our physicians or find one that is truly knowledgeable?.
Lets get some sponsors to put up a $10 million dollar prize, or something like that, for the team doing the best in a 10k race, maybe 5k on each of 3 successive days or something equally impossible, starting with people (matched pairs preferably) who are total basket cases with FMS/CFS who follow various protocols by team for 2 years and then run the race(s). At the start all participants would have to be in a state in which it is unthinkable that they could walk 1k even or something like that and that they could even possibly do it by exercise alone.
To sum up the demographics differences between folks at this board and quite possibly that you are familiar with and those I am more familiar with elsewhere:
1. The age of the population differs. I am used to more younger people catching them sooner in the decline and diagnosis process as the indicators of future problems are quite clear in late teens, 20s and 30s. Im an old guy there. Most are having the maybe its this and maybe its that diagnoses and are accustomed to being blown off by the doctors with Its nothing important, just nonspecific symptoms.
2. Vegetarians are more apparent. Whether they are vegetarian because of the b12 containing food anorexia that develops or if that comes later is difficult to tell. The vegetarians tend to be older, like me.
3. There are more males.
4. There are more FMS and fewer CFS folks. The mix is different and they have not been as sick for as long. They may not be as sick.
5. A large percentage are hypothyroid, many specifically Hashimotos.
6. There may be a larger percentage of autoimmune problems.
7. There is a sizable percentage of at least moderate multiple chemical sensitivity.
8. Fewer people have very severe startup symptoms.
9. There is a difference in neuropsych symptoms; this may be an aspect of item 4.
10. People have an expectation of deficiency rather than an expectation of methylation defects. Expectations of what startup symptoms might mean are dramatically different.
1. Most people have identifiable responses to active b12s.
2. Most people have identifiable responses to methylfolate.
3. Most have separate identifiable responses to both mb12 and adb12.
4. Most have identifiable responses to a variety of other nutrients drawn from the same universe.
5. Everybody is drawing from the same universe of symptoms.
Without testing you can't prove that anything is startup or not.
What are you interpreting "startup" to mean?
What word(s) would you prefer to see that convey "at the start of consumption of xxxx" and "at the start of xxxx processes"? If "startup" isn't an appropriate term to convey a time such as "at the initial doses of " and "when methylation starts up" or "when cell reproduction starts up" and "when red blood cells are properly matured and released at the proper size" and "when mitochondrial funtion starts up" and "when homocysteine starts being converted to methionine" etc? These are all known functions that stop when there is a deficiency. B12 is known to restore cell production, is known to reduce homocysteine, is known to reduce MMA etc?
Would you prefer it to be a clumsier but perhaps more accurate "at b12 intitation when x known processes start up and other unspecified hypothetical processes start up"? There could be a whole page to stand in for the word "startup". If it has a special limitited meaning I'm not aware of it.
And I'm using "startup" to specify a period as opposed to "continuing" or "upon discontinuance".
1. The act or process of setting into operation or motion.
Sounds good to me. There are startup programs in Windows. There are new companies called startups. A search of "startup symptoms" comes up with hundreds or maybe thousands of windows staertup problems
So maybe it should be "start-up" rather than "startup"?
From Dr-bob's site
i see the start-up symptoms from the regime - mood swings, worsening of pain - as a good sign, but i am also really impatient, and losing hope. like you the ADb12 helped the physical feeling of 'brain fog', i.e. the head stuffiness, but it does nothing for my ADD symptoms.
QUOTE= . When you put a protocol out there, you are taking on a serious responsibility, even on the internet. You don't want to be practicing medicine without a license or advising people how much to take. You can only really responsibly say, "This is what I did." Without testing you can't prove that anything is startup or not. It takes courage to put the protocol out there when nobody asked, BUT there is a danger of overstating it, ignoring risks, or in wanting to help or answer questions, inadvertantly taking on the role of medical practitioner.
who says so ?
law says he cant take money for it .. but advising anything to anyone including medicine is not forbitten by law ..
and i m glad it isnt because i need this knowlagde here ..
and if ur above order were also laws order ( or sociaties general judgment ) it would be impossible to get such kind of help online ( and jody, this was my point and unfortunatly still is )
what would be the consequences of todays law comparing with the order u suggest above as " u can do this u cant do that " ? do u really think the general outcome about ppls health be better with ur limitations ? i dont think u really think so .. i think u do all these to push someone here and enjoy it somehow ( this is my second point i finally found out ) ..
and in the end ppl will be unhearted to give their medical opinions here , including the doses of supplements or meds ..
if i ask about someones ideas about anything let it be medicine or car repair it is my responsiblty to decide what i shall do with that knowlagde .. the advisor then do not even have to contribute the process (if he is doing it it is not because he has to but because he loves to help ppl ), if the process is not well defined i musnt begin in the first .. ( but they r so basic things of life that u already know these )
and if the person is begining cause he is so desperate even the process in not well defined for him , then he is doing this not because he is stupid but because he weights this for his better interest ..
so it s actaully abusing the sensitivity of the issue with the argument
" dangering desperate peoples health with experimental treatment suggestions "
and i m scared as hell of this argument one day be used by facists to stop pple like fredd or to stop companies making supplements vitamins etc ..
with the quoted statment of urs u r suppurting here such a trend
and u r scaring me very badly ...
Freddd, certain phrases enter the vernacular as somewhat global generic terms that are apparently supposed to indicate that a specific biological process is underway that is defined and understood....
startup dieoff herxheimer
When you say startup I take you to mean, "symptoms that occur in the process of healing the organism with the necessary b12's." Am I wrong?
In fact we don't know biologically what is going on in each person as we all have polymorphisms, different reserves of vitamins minerals and cofactors, different pathogens onboard, different lifestyles and interventions we're using etc.
Therefore I think it is important to say, "There are risks with this therapy and some people have experienced what may be serious or dangerous side-effects." IE they are not all part of a medical trajectory of healing. They may just be side-effects. Some people may actually get ill from methylb12, plain and simple. May not need it. It may push systems past breaking point. It may trigger heavy metal detox. It may stimulate resident pathogens to multiply. Who the heck knows? We're very complex and so is the interaction between our immune system and the environment.
Without testing you can't prove that anything ....
You have just put your finger on a MAJOR problem. The testing on population with known sufficiency of methylb12, adb12 and methylfolate has NEVER been done. The general testing done is against the backround of people who have had unknown amounts of cyanob12, in the USA, and folic acid and half or so of whom would respond to active b12s and or methylfolate. MMA, HCY, serum cobalamin and bound cobalamin are the limits of testing. Maybe lactic acid is meaningful. But none of these at "normal" levels indicates sufficiency and lack of responsive symptoms. Then the problem of CNS/CSF cobalamin, HCY and MMA levels, again not even any reference values exist for those. What does neuropathy look like in biochemical cross-section? What do neuropsychiatric change biochemical cross-sections look like? What does breaking down myelin look like? Many many questions, no answers. Research has never been done on a population with known sufficiency of active folate and b12s and asymtomatic since 30 or 40 of 300 or so are all the symptoms recognized. So your "prove it with testing" is ludicrous. Prove FMS/CFS with testing. That will go at least 50% of the way to prove many of the active b12 and folate deficiency biochemistry changes. So far medical understanding is very lacking. I have never even seen a statement of what all the 600 b12/folate processes are. I have to take the word of researchers making that statement for it. However, looking at the symptoms list gives a lot of clues.
Like I explained before, we are not going to censor anything, or delete any posts. We want this information to be available to everyone.
I agree, Freddd. Much data is lacking. That's certainly not your fault! However given that there are such gaps, erring on the side of caution is important.
I know you are suffering and probably scared and discouraged, but all I can say is I think you should try to calm down about the postings and the dialogues on various threads. Mostly, people are okay with it and expressing what they feel. I guess you are expressing what you feel as well but I think you are overly worried.
Thankyou for your suggestions here. I can work with these and will incorporate them into a more complete cautionary statement. However, I don't know that I will get it done tonight.
When you say startup I take you to mean, "symptoms that occur in the process of healing the organism with the necessary b12's." Am I wrong?
More incomplete than wrong, I would be inclined to say. "Startup" refers to things that happen in the initial phase of getting b12s and other nutrients established in the body, whether intentional or side effects, whether directly in the line of healing or incidental to a multitude of things all trying to start up at once. It has never been researched. Metanx for instance, 5mg of methylcobalamin and high dose methylfolate and p-5-p. It has very few side effects listed. Very little that we would recognize as startup effects? No cautions at all of the type we have been discussing. Each of us has made more complete statements. Why don't they know these things?
Startup includes all kinds of reactions including herxheimer, which is suspected but not proven, as the immune system starts functioning better. B12 does not kill bacteria or viruses. Many bacteria need it and produce it themselves. However b12 encourages normalization of white blood cells, increases count and has other effects upon the immune system. The effects of inactive cobalamins happen so slowly compared to the active b12s that we don't really know what sudden startup of these many processes feels like. The cell mediated changes take a while for the cells to mature so some are delayed even with active b12s, but no so much as with the trickle of active supplied by inactive b12s. Some are on the way to healing, some are side effects of various processes starting up. B12s themselves have no toxicity except for cyanob12 in some people. However, the processes they start can produce toxins such as herxheimer and others.
Methylb12 is considered a detoxifier. It appears to be part of the evolved system for the body to rid itself of metals such as mercury. Mobilized methylmercury is excreted in the bile, slowly but reasonably surely. Methylb12 itself is protective of the neurology against some number of toxins. Much of the effect of mercury in the body does appear to be that even 1mg of mercury can disable the entire mb12 supply of the body several times over and for years of normal b12 input damaging the nervous system. The many processes of the active b12s is a very complex subject that has never really been studied in depth due to the concentration for decades on inactive b12s. Genetic polymorphisms concerning b12 tend to only be troublesome in an environment that exposes one to inactive b12s. Hydroxyb12 serves no actual function in the body except that to a very limited extent some bodies can convert it to the active b12s that are actually used. It is my opinion that much research has been corrupted and distorted by the use and focus on the inactive b12s to the extent that the effects of both actual functional b12s is unknown.
I started out on this path analyzing why every doctor I saw was incapable of figuring out what was wrong with me. In my business of software design and development I often wasn't the first person to take on a problem. Finding out why others hadn't solved the problem was often helpful. What I found out about the doctors was what I usually found out; that they were making incorrect assumptions, thinking that something was true that wasn't. On one software problem the business owner had been told he couldn't do it because it would take at least 300mb of hard disk (typical disk size 10 mb) and several people full time for a year to put all the data into the system. I fit it on a 40 mb disk with room to spare and two secretaries were able to put all the data in part time for 2 months. The 3 previous vendors had made some false assumptions about the data required and it's organization.
In this case the doctors had an entire belief system about b12 that was totally wrong in practice while being techically correct. If it were one or two or five doctors, that's one thing. I might have picked bad doctors. But when every practitioner of every variety and specialty, mostly but not all MDs, was wrong over many decades there was something fundamentally flawed institutionally. I worked for more than 20 years with doctors and some were not very good but I found it impossible to believe that they were all ignorant or bad docs. Most were honest, sincere, reasonably knowlegable and effective. So what was the problem? Sixty years of research based on a Nobel Prize winning lab mistake is what was wrong; a house of cards built on a foundation of sand. At first I expected certain obvious questions to be asked in research. Then I saw that certain of these questiions were never asked. Why? No funding? Too practical? Too damaging to prior research? The questions asked could yield technically correct answers that just don't work out for people like us. I got tired of being the sacrifice. I want answers that work for us.
Take the potassium deficiency that can be induced for instance. Based on this and many more experiences of my own and others I'm quite sure that other deficiencies can also be induced by otherwise beneficial processes. The induced neuropsychiatric healing can be very stormy and disturbing with moods that change suddenly as the balance of neurotransmitters change and pain and other sensations caused by repair of nerves and gaps in myelin. If something takes 600 steps to heal, 599 of them are still just different forms of wrongness. As this healing is not induced by inactive cobalamins, it has not been studied. Most say it doesn't happen. I know it can and does by my own experience and that of others. It isn't easy and it is complex.
I'm trying to solve this problem in it's entirety. I have modified my hypothesis over and over again and will continue to do so. The details are not important as long as they all fit together without fudge factors. Willy Wonka would be proud of the amount of fudge found in b12 research reports. The price of all of this is the sacrifice whether intentional or unknowing, of your health and mine and that of millions of people like us.
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