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Lessons from ME/CFS: Finding Meaning in the Suffering
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Methylation

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Aug 10, 2009.

  1. Freddd

    Freddd Senior Member

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    Hi Velha,

    Is it normal, in what you know about peoples experience, to have worsenibg of focus and short term memory during startup? I'm having a general worsening it seems and am not sure how long to stay the course.

    Yes, worsening and intensification and shifting of symptoms is the usual course of what happens when starting active b12s from a severe deficiency state. However, it's like the weather. It changes again and again and again. The startup period is most like that as the sudden startup of so many processes put a heavy load on the body's resources and can cause temporary shortages of other factors and brings verious things to a grinding halt that just barely started up. As some things heal, and epithelial tissues that are normally fast reproducing, are usually the fastest to heal. After those heal and changes often occur with the blood ands immune system, things settle down quite a bit. Neurological healing takes the longest. In neurological things, the roller coaster effect is especially noticable as something is still damaged until the last step of healing it takes place and so it goes from one damaged state to a different damaged state. In my experience everything that is affected during the startup is improved or healed over time. The things that are totally unaffected may or may not be changed over time. Not everything is related to b12 deficiencies and as the many things that are fall away the remaining things are more clerarly revealed. The tendency of the active b12s is for things to go towards normal but it's like a new driver with a stick shift, uneven and jerky on the starts and shakey on everything else.
  2. Freddd

    Freddd Senior Member

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    Hi Dreambirdie,

    Thanks for your post. These are the same kinds of things I've experienced. A lot of heart symptoms, along with shortness of breath, air hunger and excessive yawning.


    If you were to go over to http://forums.wrongdiagnosis.com/showthread.php?p=199063#post199063 and post these exact questions and symptoms over there you could talk to some folks who have been through those exact things. These were never any of my symptoms, except for a lot of heart arythmias/palpitations, so I have no direct experience with them but quit a few do. It has been speculated that the air hunger is related to the mitochondria becoming more active oxidizing, which is what they do, as a result of correcting a b12 deficiency and that this increases the need for oxygen which stimulates more red cells to be made and now can be made the right size because and matured properly becasue of more b12 and then can then depress potassium levels.


    That's in addition to the annoying hyperactive and anxious feelings.

    These are near 100% in incidence with "anxious" interpretation optional. Some interpret those feelings of increased oxidation that way, some as exhileration or euphoria. There is also the increased nervous system functioning, returning to normal from a very depressed state, that can give that effect. When one is down so long where "normal" is gets lost.


    And also I've had a hard time sleeping, and have woken up feeling broiling hot a few times.

    This is also a direct effect of stepped up metabolism from having b12 avaialbvle in the mitochondria for energy production by oxidation. Being cold all the time is a common b12 deficiency symptom.

    I know some of my symptoms (particularly the overheating at night) are probably due to changing hormones, as I am very peri-menopausal.

    B12 can affect hormone production as can deficiency. Changes in this can be quite unpleasant.

    I have stopped the B12 completely for now. I was SO TOXIC yesterday, that I stopped just about all my supplements, except magnesium (for heart symptoms), high doses of chlorophyll and the N-A-C, 1 gram/3 X--to help me detoxify. I feel MUCH BETTER today--almost ALL my symptoms are improved, especially the shortness of breath, which was so awful yesterday that I had to spend all day on the couch.

    I think that you have verified that NAC can act as an off switch to at least some of the b12 effects. The active b12s turn on processes and NAC turns them off. While you were only taking adb12, a very small amount daily can get converted to mb12, as it can with hydroxyb12.

    I am not sure how to proceed from here. I'm hoping Freddd will have some input on this

    Everybody who has continued the active b12s, at some rate, slow or high, has gotten through the hypersensitive period. I know at this point its difficult to believe that if you continue you will be able to take a whole mouthfull of b12 tablets with no noticable effect at all except excessive drooling, but that has been true without exception. I was surprised to learn that relatively few people are hypersensitive as you are and as I was. I woke up with absolutely sweat drenched bed many times in the first year. I'm stable and consistant now and just don't use all the covers I used to. The body adjusts. The neurology adjusts. I found that by pushing the startup effects to a higher dose allowed a lower dose to be taken comfortably. I also found that the startup effects at a given dose were slower to disappear if taken constantly at that level. So I had startup at 1000mcg/day Sl for 1 month, regressed horribly in a week on a zero star brand and had another month of startup. The daily startup effects at 5000mcg were very little different than at 1000mcg except that when I went down to 1000mcg there were no more daily startup, they disappeared. Finding that out, I pushed my daily dose up to 25,000mcg for a couple of days and the daily startup effects disappeared quickly and entirely. I was just trying to get it over with you understand. Doing it a little at a time was much more difficult. Saturated equilibrium was reached and there was no more change in percentage of occupied receptors or whatever causes the noticable effects. Many others have had a very similar experience. Over about the next 2 or 3 months the hyper clarity and intensity all calmed down to normal. There are no guarantees. However, were we in a position to bet on it, I would bet that if you took 10 of the adb12 the day you spent on the couch that the effects wouldn't have been much if any different and that on the next day you could take 1 or 2 daily with normal comfort. The serum halflife is such that only 1% or so is going to be left the next day, no matter how much you started out with. Adb12 is not a methylator and the amount of it that can be converted to mb12 is already fully reached with a single tablet.


    Something I would like to point out. I was clearly hypersensitive to mb12. It made it possible for me, and 5 other hypersensitives, to rate the various brands for relative potentcy as only those who are hypersensitive can do. Perhaps you would consider using the hypersensitivity while you have it and do some brand comparisons?
  3. Dreambirdie

    Dreambirdie work in progress

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    Freddd--

    I would do this only for a price, and you DEFINITELY couldn't afford it. :) It would cost you almost as much as one of my kidneys.

    I am going to mull over what both you and JenBooks have written. I am not in any hurry to start the B12 again.
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi Jen--

    I agree with you about the FLOODTIDE that can happen with methylation correction. :p I do think the adB12 triggered a heavy metal detox, which Freddd didn't address in his response to me. My OMD, who works a lot with CFS/MCS and is really good at figuring these things out via biophoton testing, came up with the same conclusion, without my cue.

    This summer I have tried a couple new remedies, which have definitely shown promise at being helpful, but also initiated detoxification of metals to the point unbearable discomfort. I'm not a fan of doing that, because the stress of it is just too hard on my adrenals, which are already such shakey little things.

    I'm going to let myself system settle and stabilize before I feel out what to do next. I don't get the sense that I need micro doses, but I also disagree with Freddd's mega dosages. It just doesn't jell for me that EVERY person should have the SAME protocol, with the SAME doses. Engineering a one-size-fits-all protocol doesn't work on something as irrational as an individual human organism. Wouldn't it be great if it did.
  5. jenbooks

    jenbooks Guest

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    You're right DB. Adb12 was good for you the first few days so once you stabilize you could consider a microdose maybe pulsed--once a week, twice a week?
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi Freddd---

    I am having a hard time with all my adverse symptoms being reduced so definitively to "start up effects." That's a theory, but not a certainty.

    The main adverse effect I have of the adB12 triggering detoxification of heavy metals is something you dismissed by saying that it is not a methylator. But methylator or not, in my experience it did cause a detox reaction, which is continuing BEYOND the point of the 1% adB12 supposedly leftover in its serum half life within my body. And that's the problem. The effects TRIGGERED are lasting MUCH LONGER than the B12 itself. So HOW could taking more be an advisable thing. (that's not a question)

    I understand that you wanted to PUSH through your "start up effects" with the higher doses, but that just doesn't feel right to me. I have done that kind of thing so many times in the past, with so many others' agendas and it never worked out FOR ME as a healing to PUSH anything against my body's loud "NO". I am very reluctant to risk the kind extreme discomfort I experienced yesterday, unless you could give me the guarantee, that you can't give me. So I'm going to wait and see what to do, what to do.
  7. Freddd

    Freddd Senior Member

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    Hi Dreambirdie,

    I agree with you about the FLOODTIDE that can happen with methylation correction. :p I do think the adB12 triggered a heavy metal detox, which Freddd didn't address in his response to me. My OMD, who works a lot with CFS/MCS and is really good at figuring these things out via biophoton testing, came up with the same conclusion, without my cue.

    Adb12 is not connected with methylation to the best of my lnowledge in any way, shape of form. Methylb12 definitely is a methylator and that is one of it's many functions in the body. There are 147,000 Google hits combining those words. With adenosylcobalamin there is one hit when combined with methylator and it's talking about Cobalamin Biosynthesis in P. ginivalis and isn't saying that adenosylb12 is a methylator. I can find no references what so ever that would indicate that adb12 can trigger a "FLOODTIDE" of methylation correction or even a trickle. If adb12 could trigger a heavy metal detox it sure wasn't by methylation. So what is the proposed mechanism? The only function of adenosylb12 in the body is in sitting in mitochondria making ATP. Nothing else at all. Show me some references that indicates otherwise.

    which Freddd didn't address in his response to me

    I merely said that adb12 wasn't a methylator and left it at that. It seemed like such an improbable statement that I had no other answer. It is not based on any function whatsoever of adb12 that I am able to find. As you insist, I am addressing it specifically now.
  8. jenbooks

    jenbooks Guest

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    I wish Rich would weigh in here. Perhaps someone can alert him to the recent questions on this thread. He saw some heavy detox/tox reactions on the simplified protocol in the beginning. Therefore he asked that people work with their doctors.
  9. Freddd

    Freddd Senior Member

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    I am having a hard time with all my adverse symptoms being reduced so definitively to "start up effects." That's a theory, but not a certainty.

    I use the word "startup" to indicate a timing involving the early doses of in this case b12. It isn't reducing anything as there can be hundreds of startup effects of a multitude of causes. You apparantly are assigning a special meaning to the word "startup" which I am not. I am only intending it to mean "at the beginning".

    which is continuing BEYOND the point of the 1% adB12 supposedly leftover in its serum half life within my body. And that's the problem. The effects TRIGGERED are lasting MUCH LONGER than the B12 itself.

    The adb12 remains in the mitochondria for the life of the cell as far as I know and will still be generating ATP a year and more from now. It takes a long time to get into as severe a deficiency state as you demonstrate.

    So HOW could taking more be an advisable thing.

    Neither active b12 has a linear effect. They both approach a ceiling and adb12 having only one funtion in the body approaches that celing much more quickly. Mitochondria can only be 100% occupied. If they are 0.1% occupied and they go up to 10% occupied that is a 100x increase and that is perceived as an absolutely gigantically huge effect as our sensory system is set up to notice relative differences and might be interpreted in all sorts of ways. Going to 50% or 100% will not duplicate that kind of effect. The more you take of adb12 the less effect each increment has.

    Active b12s have no effect in people who already have ample b12 in all the places in their body and brain that b12 does it's work it. The estimates are anywhere from 2mg to 5mg as the maximum amount the body can actually retain, as much as it has anywhjere to put it. Doses in excess of that make it rapidly available to empty receptors for a very short while, but the rest is excreted very rapidly by the kidneys.

    Mb12 is an excellent detoxifier. Adb12 doesn't do that. It's not one of it's functions. Show me in what way(s) adb12 can possibly interact with heavy metals and I will give your explanation more credibility. I don't doubt at all that you had a huge reaction. It's just your explanation that I don't see as flying. Explanations are often wrong. Many of my explanations have been wrong and I correct them over and over again. That's why coming to a thorough understanding of what is going on can be so difficult. I have watched lots of people go through the early stages of taking active b12s and have observed all sorts of reactions. Some explanations offerred are correct and some are not.
  10. richvank

    richvank Senior Member

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    Hi, freddd.

    In a person who has normally functioning intracellular B12 processing enzymes, any form of B12 that is carried into cells bound to transcobalamin is first stripped of its beta ligand, and then is converted to either methylcobalamin or adenosylcobalamin. So in a person who has normally functioning enzymes, it is very possible that some of the adenosylcobalamin could be converted to methylcobalamin and could support the methylation cycle, which would tend to boost the detox system in a person whose methylation cycle has been partially blocked.

    In your case, as I understand it, there is a genetic problem in one or more of these enzymes, and that may make it impossible for your cells to convert adenosylcobalamin into methylcobalamin. So I can see your argument from your point of view, but I don't think it would apply to people who don't have this genetic issue.

    Rich
  11. Freddd

    Freddd Senior Member

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    Hi Rich,

    A little clarification please. Wouldn't that be equally true for hydroxyb12?

    Additionally, my understanding is that the amount subject to interconversion on that basis is very limited, on the order of 10 or several tens of micrograms in a day. Why would adb12 produce any different reaction than hydroxyb12 in that regard? Are you saying then that 10 or 20 or 30 mcg of methylb12 has gigantic methylation capacity with the methyl group being approx 1.4% of the mass of of the entire cobalamin molecule? We are talking on the order of 140-420ng of methyl group. As far as methylating mercury goes, even if 100% of it did that it is a minute amount that is far far far below the level of methylmercury that could cause any toxic effects with 20-30mg of methylmercury being the amount stated to cause the lowest threshold level of toxic effects after a delay usually of months. It takes over 7mg of mb12 to methylate 1mg of mercury if 100% of the mb12 were to be utilized in that fashion, which seems most unlikely. As you said yourself it took massive IV infusions of mb12 to cause suspected methylmercury toxic effects. Somehow a few tens of mcgs converted by the body to mb12 doesn't equate to massive IV infusions. We are talking the methylmercury equivalent of one forkfull of tunafish or so. Or are we talking magic here? Or do I have a serious misunderstanding of what you have said?
  12. jenbooks

    jenbooks Guest

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    Hi DB, Rich, Freddd.

    When Rich first recommended the Simplified Protocol there were many threads on PH. Some people had some serious adverse reactions that seemed related to the protocol. If I recall one person ended up in the hospital temporarily. Another could not move her bowels. I think that person may have stopped and started again at a later date more carefully.

    Rich realized that the protocol needed doctor oversight. In addition, people began it far more cautiously.

    If you look on Amy Yasko's board mostly of parents of autistic children, and Rich had adapted the Simplified Protocol from Yasko's work originally I believe, you will see children dumping huge amounts of toxic metals. Sometimes strange metals like thallium or antimony (the latter can be found in mattresses and crib materials I think). One parent called the amounts "insane". They were off the charts. I still remember reading that fascinating post. I know that when bh4 was added into one child's regimen whom I know he began dumping aluminum suddenly.

    The peculiarities of chronic infections, chronic heavy metal poisoning (which Freddd from your descriptions you may not have had, you may be a fine methylator when your b12 conversions are compesnated for), and genetically/environmentally impaired methylation make us, like the autistic children, highly sensitive to the point where people who don't have these problems cannot conceive they exist, and cannot find a mechanism for them that seems plausible to them.

    This is why we get in trouble. I've had the same experience as DB. I've harmed myself, perhaps permanently sometimes?, by listening to others who said, "That is impossible. What you're saying can't be true." My body was saying differently. For instance in my mid 30's a good and well meaning chiropractor who'd been healed by acemannen, the polysaccharide in aloe, and was marketing it and still does, gave me some for free each week. I was pretty sure it was stimulating yeast as I began to have candida symptoms. He said that was impossible. I listened to him not me. I developed a more severe candida problem than in the past and when I went off the stuff I had a terrible rebound reaction (because it IS anti inflammatory) and horrible pelvic pain for quite a while. Later I found that candida likes mannose. So why wouldn't it have been stimulated?

    Maybe DB is releasing metals and maybe she's not. In any case, the attitude that we must tough it out, "pony up" (as they would say on salt/c protocol on which 4 days severely damaged me, and on which others developed heart and kidney problems, some permanent), that it is die-off or start-up, is not wise. We have to stop when dangerous symptoms appear. If we can't sleep, if our hearts are going crazy, if our kidneys are aching, whatever. Then we have to re-evaluate and then maybe start at microdoses. That seems to have worked for a number of people trying Rich's protocol.

    We need not be omniscient and know all the answers. Obviously your approach, Freddd, is already helping some people on this board without much adverse effect. And there are others who have had extreme adverse effect. I think this is the playing field when people with chronic infections, chronic heavy metal toxicity, *and* poor genetic detox and methylation, try to start up methylation in middle-age. It's precarious and must be done very carefully and one must think longterm, hoping for incremental progress without straining the system too much, thinking years not months. That's safer.

    That's my view anyway.
  13. Dreambirdie

    Dreambirdie work in progress

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    Healing is an ART, not a science. That's what makes it so challenging.

    In my experience, it has NEVER worked to push anything that my body is reacting to in such an extreme way that it puts me into a crisis. That's what I appreciate about my TCM practitioner. One of his favorite slogans is: "If you're having a crisis, you're not having a healing." He has worked with CFS/MCS for over 25 years, so he knows what he's talking about.

    A certain amount of discomfort in the process of a healing reaction--like unusual hunger, fatigue, achy muscles, headaches, even some nausea, is something I'm willing to tolerate, for day or two. But cardiac arrhythmia and severe air hunger that leaves me gasping for breath for 24 hours or more is where I draw the line. To push through that would be just plain stupid.
  14. jenbooks

    jenbooks Guest

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    This is a very important issue (healing is an ART) and pushing through. I've seen people nearly kill themselves on certain protocols while the gurus pushing those protocols (salt/c, Marshall protocol, or even FTC which is discussed in another thread here) kept insisting that 1) it was just die-off or start-up and necessary to be healed 2) the problems were due to the individual not doing the protocol correctly, either too little or too much, too fast or too slow. I was told I used the wrong salt, and I ramped up too fast. But there were people who used the "right" salt and ramped up slow and got sick. One person decompensated into serious cardiac issues that were still present 18 months later and she only got up to 4 grams a day. I was told by Dr. Y that I had such a severe reaction to his remedies because I stopped them after a few days when they made me so ill, and therefore I had awakened the tigers and then let them out of the cage. People have ended up in the hospital on Marshall Protocol while the gurus are still pushing the party line of a cure-all, and all adverse effects being die-off or start-up.

    I've learned that in these wastebasket illnesses a kind of severe selective perception operates, and even a kind of sociopathy sometimes (Marshall protocol and salt/c). I think at one point I was publicly decried as an "abomination" (she is an abomination) by the guru pushing salt/c when my adverse reaction sent me hunting for others and uncovering them and I asked him to state the risks in his e-book and on his yahoo group. He never did.

    It took a lot of work to uncover those people but I did and that was a moment of truth for me. And that's the other thing I've learned. Selective perception leads people to minimize or mask or explain away genuine adverse reactions. They are brushed away. You just don't hear about them. When I had a horrible reaction to FTC, the doctor told me I was the only one. Now I see from the other thread on this site that indeed I am not and indeed others have had worse (on oxygen 24 hours a day in bed with a total scary relapse???) It is scary. One must exercise the utmost caution. Even the WAPF collective, as I told you DB, says that the outbreaks of diarrhea from the raw milk are because of too many good bacteria. And I was never told about those outbreaks. And I'm sure they'll never tell their membership about my cystitis. OTOH, I can read about the pathogens in raw milk easily on google, and so, I believe in that case I was responsible. Yet the WAPF leaders are in their case NOT being completely responsible.

    The person who encouraged/urged salt/c for me was ignoring his own cardiac and kidney issues. He admitted later, cardiac arrhythmias so bad he thought he wouldn't make it through the night, and kidney pain so bad it felt like a kidney stone. Yet he stayed on the protocol and encouraged me to do it. He had pinned all his hopes on the protocol and when he finally had to admit its failure and possible harm, he went on SSDI. I stopped after 4 days but not before damage was done. I wasn't careful enough. But his selective perception was so profound I later regarded it as a kind of temporary insanity, fed by severe illness that was too difficult and sad for him to face. But the equivalent would be you, Dreambirdie, staying on this protocol with those symptoms and not even mentioning them because you have convinced yourself they are "startup" and because you so desperately want to get well and are convinced that only b12 can do it...and encouraging me to do it, saying to me that it is getting you well. If *that* sounds crazy to you, well it happens.

    It made me realize that these overwhelming wastebasket illnesses bring out the worst in people. Hope of a magical cure. Egotistical feelings that you can cure the world. Inaccurate reports of genuine adverse effects. Inability to really responsibly go slow and report all side effects.

    That's why I tend to wait and watch on all new protocols. Now I am more aware and when new people try them on sites I'm participating or lurking on, I can see adverse effects as they are reported.

    The one person I personally know of who had great integrity about all this was Rich. The protocol caused some serious adverse effects after he posted it may be a cure and people began trying it. He immediately changed course, warned everybody about risks, and began working with a doctor. He no longer says it's a cure. He does say it's helpful and major for some and he's probably right. He was clearly taken aback by the adverse reactions to the protocol in some, but he corrected his error asap. That's why I tend to trust his reports. That's why I think if he recommends hydroxy it is probably the safer choice.
  15. Dreambirdie

    Dreambirdie work in progress

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    Hi Jen--

    Thanks for your input on this. I definitely agree with a lot of what you say.

    AND I want to mention that I am STILL in the throes of the detox reaction, despite the fact that I have taken NO B12 since Thursday. I am feeling about half way better, but it's not over yet. I am on the couch and mostly off the computer until the smokes clears.

    I also want to add that I was not in the least bit expecting any adverse response to the adB12. I take fairly large doses of many supplements, and rarely have severe reactions. But... if something causes metal detox, then that's a different story. Because I have quite a load of toxic metals still lurking in my body, when something triggers them to come out full force, it is a guaranteed trip to hell. I can't afford to go there.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Dreambirdie & Jenbooks,

    I concur very much with Jenbooks. I have been on Rich's protocol for about 20 months and it has definitely helped me a lot, but detoxification has always been a limiting factor for me. I react to too much hydrox B12 and had an extreme response to a tiny amount of the Jarrow sublingual methyl B12--it kept me in bed for days.

    Rich has always urged us to listen to our bodies and be cautious and reminded us that detox reactions can last up to two weeks--and I have had a couple of them that did last this long--and they were precipitated by B12 (hydrox and then methyl sublingual). So when I have an a reaction now, I stop immediately, as I know that damage is possible.

    I have high levels of aluminum, thallium, gallium and a couple other metals. I think that the reactions I get from methylation supplements are coming from increased detoxification of heavy metals. This is an area that needs extreme caution. Heavy metals are very toxic and can be stirred up and then redistributed--sometimes ending up in a place is worse than where they were originally lodged.

    Again, as Jenbooks mentioned, Rich has always listened to our reports, continued to research and changed his recommendations as more data becomes available. For this quality (as well as many others) I trust and respect what he posts here and on other forums. He has also always insisted that we work with our doctors while on this protocol.

    I think caution is extremely necessary when dealing with as Jenbooks calls it, "this wastebasket illness."

    Sushi
  17. Dreambirdie

    Dreambirdie work in progress

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    Thanks Sushi. Validation s a good thing. :)
  18. brenda

    brenda Senior Member

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    I took the sub MethylB12 for a few days and had an extreme reaction which I felt was mercury being moved around and adrenal distress. I ended up in hospital due to very severe calf pain which my friends thought sounded like DVT - it was not. I felt nearly suicidal with the reaction. Despite Fredds' advice that I should continue with scant regard for the problems I was having I have to say, I stopped the B12 and things have settled down now. I consider that no-one should be advising people who are extremely sick online to be taking high doses of anything just because it worked for them.

    I am carrying on with my natural healing, basically using food to heal me mostly using raw vegetable juice, since the setback and continued improvement. I would want to be well on the way to health before I try anything like that again. It's just too risky.
  19. richvank

    richvank Senior Member

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    Hi, Freddd.

    ***I haven't been referring to the issue of methylation of mercury here. That's a separate issue, and I haven't yet studied your model for that. I'll try to get to it soon.

    ***What I've been referring to here was your statement to someone else on the forum that taking adenosylcobalamin couldn't possibly influence methylation. I think that's true if a person is not able to do the conversion from adenosylcobalamin to methylcobalamin, as appears to be true in your case, based on what you've reported. But if a person has the normal intracellular B12 processing enzymes, they can make methylcobalamin out of any form of B12 that comes in, and that methylcobalamin can increase the activity of methionine synthase, thus partially lifting the block in the methylation cycle.

    ***Since the methylation cycle is located at the beginning of the sulfur metabolism, and since the body's detoxication system depends to a large degree on sulfur-containing substances, improvement in the operation of the methylation cycle can be expected to stimulate the detoxication system as well.

    ***For a person who has been ill with CFS for a long time, there are likely to be large body burdens of toxins of various sorts that have accumulated, because the detox system has been dysfunctional. When the detox system comes back up, it can be expected to start working on the backlog, and that will cause toxins to be mobilized into the bloodstream.

    ***Because the processes that remove toxins from the blood and excrete them into the urine, stools and sweat take some time to occur, it can be expected that in the meantime the cells of the body will be bathed in blood that contains elevated levels of toxins. Some of them are likely to be imported into the cells, and I think that is probably what produces the detox-related symptoms that people have reported.

    ***Best regards,

    ***Rich
  20. richvank

    richvank Senior Member

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    Adverse effects from simplified treatment approach

    Hi, all.

    Jenbooks mentioned that there had been some adverse effects in some of the people who tried the simplified treatment approach for lifting the methylation cycle block. This occurred a little over two years ago. I have followed these people since then to see how they have been doing. Here is a summary:

    In a post of July 18, 2007, I described all of them of whom I was aware, which numbered five women.

    The first had had a history of autonomous multinodular goiter. On this
    treatment, her thyroid gland swelled further, obstructing her breathing. Since
    then, she has had surgery to remove the rest of her enlarged thyroid. Last May she was preparing to order the Vitamin Diagnostics methylation pathways panel to test her methylation status, but I have not heard whether she completed that, and if so, how it came out.

    The second person experienced initial improvement on this treatment, and was able to ride a bicycle after having been homebound for ten years. However, she then developed a fever, shortness of breath, and severe chest and arm pain. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has continued to have a fever for over two years, and her doctors have not been able to determine its cause or to correct it. Antibiotic treatment has not helped. Some time ago I suggested testing for Babesia, but I don't know if that was done.

    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.

    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."

    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.

    So that's the current status, to my knowledge, of those who had adverse effects. As jenbooks mentioned, these adverse effects came as a surprise to me, and I was quite chagrined about them. What I learned from this was that we have a very heterogeneous population in these internet groups. People can have a variety of comorbidities (i.e. other conditions along with CFS). One size does not fit all. If a person decides on their own to do a treatment, all the important factors may not be considered. 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.

    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.

    It hasn't turned out to be as simple as I had hoped, but I think we are making progress. I have actually heard from many more people who have been helped by this treatment than from people who had adverse effects, and I'm happy that this has been the case, but am still concerned for those who had adverse effects, whether they were due to the treatment, or to aspects of their cases, or both. I'd like to see everyone recover their health!

    Best regards,

    Rich

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