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Rash/Lesion Start Up From Methylation Protocols

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by LaurieL, Nov 11, 2010.

  1. Freddd

    Freddd Senior Member

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    Hi Joopiter,


    if you experience as well a kind of increased nerve sensation, increased "legs falling asleep

    Are you meaning increased tingling and "pins and needles" sensation or are you meaning completely dead/numb?

    If tingling and increased paresthesias of many kinds, that often happens with mb12 as the nerves start being more active and coming back. For me this increase usually leads to going through the onset paresthesias (neurological noise), that may have occurred 20 years before and be a distant at best memory, in reverse order until it goes through a hyper sensitive phase and then fades to normal. This can take up to a year or so. When I get a not so good batch of mb12 the tingling in my feet fades to numbness and when I get a better batch it increases tingling a lot. Feeling returns in little patches. In the past month I have regained more feeling in my toes and better motor control with most of the numbness now in my arch, which has increasing pain which comes before the tingling if it is already numb. These are the muscles I am talking about as I have feeling in my entire feet in the skin. I have always considered that the multisensory hallucinations were "neurological noise" from the lack of functionality and damage to the nerves. Where this noise happens determines how it is perceived and interpreted.

    also I feel that my eyes are like "confused" I cant look as clear as before, something is different

    I've never heard it described that way. I will describe what I experienced. In the months before I first started mb12 I had been loosing the ability to focus my eyes. My wife read the entire Hobbit and Lord of the Rings series to me as I could no longer read on many days. It felt like I had no control of the muscles of my eyes. The focusing muscles seemed to spasm, like the muscles all over my body and sometimes gave me horrible headaches. With the mb12 energy started returning to my all the muscles in my body and I began to be able to focus my eyes every day. The nerves and muscles were different than I had gotten used to over the previous decades. However, with use they started coordinating again. As the lack can affect the nerves as well, if one gets increased paresthesias (neurological noise) in the nerves to the eye it could cause all sorts of things. If you look at the list of b12 deficiency symptoms you will see many effects on the eyes. I'm not surprised that eyes might be affected during the healing process. Mine were, thank heavens.
  2. Joopiter76

    Joopiter76 Senior Member

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    Thanks Freddd,

    yes I have an increase sensation of my leg nerves. If I put one leg over the other it well start to feel like needles and paraesthesia within 2 minutes. Usually in a normal person this would take 15 min or more.

    with my eyes I mean that I dont have the same contrast black/white so I must focus more on the line I just read. And they feel more tired. Maybe the mobilisation of toxins? Im thinking about that because in the shoemaker neurotoxin test one has to be able to count black/grey lines which are very close to each other.
  3. Vegas

    Vegas Senior Member

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    Welcome to my world!

    Blurry vision; difficulty focusing; heavy, tired eyes--this is largely caused by the mobilization of toxins, primarly neurotoxins, in my humble opinion. It's typically associated with worsening fatigue and brain fog. I think it is fascinating just how predictably I can "dial up" these symptoms by taking methyl or adenosyl, assuming I have good folate saturation.
  4. Freddd

    Freddd Senior Member

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    Hi Vegas,

    I would be interested in hearing your hypothesis as to why adenosylb12 would have the same effect as methylb12 and why then hydroxcbl and cyanocbl are not included?
  5. leaves

    leaves Senior Member

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    I also have the increased numbness/ falling asleep of limbs. Funny that so many of us have that.
  6. Freddd

    Freddd Senior Member

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    Hi Leaves,

    Could you please explain what that means? I'm working on a revised symptoms list and I'm wondering if I need to add another symptom or at least description. It is interesting that a lot mention it in various ways. I also had lots of problems that might be described that way but can also be described in other ways. I had 3 or 4 distinctly different things that might fit that description or might not.

    For instance, when the circulation was cut off to my arm in certain sleeping positions it would be a dead hunk of meat when I woke up, then extreme pins and needles as circulation returns. On the other hand, if I sleep on my side, the arm on top often develops certain sensations if I don't put a pillow under it keeping it up off my side, which only reduces the sensation. But this never gets numb and seems more neurological, like pressure on a nerve or something.
  7. leaves

    leaves Senior Member

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    Well lately I notice 4 things
    -stinging in eye
    - needles and buzzing feeling in feet
    -increased involuntary movement of fingers, face and legs
    -when I cut blood flow for a very short wile of a limb (for example by sitting) the limb goes numb; I don't have feeling in it anymore. when I wake it up I get pins and needles too
  8. Joopiter76

    Joopiter76 Senior Member

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    yes thats the kind of feeling I experience. When circulation is cout off for a very short time then this comes. maybe this is because of reduced oxigen transport due to our illness but that wouldn`t explain why it is increased under especially methyl-B12

    It would be necessary to make clear if the symptoms occur because of increased Methyl-B12 or because of a lack of B12 or if they are independant of any B12.
  9. Vegas

    Vegas Senior Member

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    My experiences with cyan have been too limited to draw any conclusions; I never took it in large amounts or with active folates or other supportive cofactors. Actually, my early experiences with only sublingual methyl produced no noticeable effects whatsoever. As you have detailed, there could be a number of reasons for this. Hydroxocobalamin did produce significant effects when I took it concurrently with the other components of Rich's protocol, so I do consider it effective. After starting methyl and adenosyl; however, three months or so after starting Rich's protocol I pretty quickly experienced the greater bioavailability of these forms. At first I alternated hydro with methyl and adeno, and I eventually worked up to taking the active forms exclusively. I today correllate these active forms with more vigorus detox symptoms and based upon the sulfur headaches, temperature and metabolism changes, and the amelioration of symptoms, what I presume to be is more efficient methionine synthase activity/glutathione production/etc.

    Your question about the relative efficacy of adenosyl to methyl is a good one, but I don't have a good answer. First you have to understand that I am comparing 1 mg methyl to 3 mg of adenosyl (your brands), so we are not comparing equivalent dosages. Still, I've actually noted that quite a few others who post on this forum also report that adenosyl is as or more effective, in some cases, than methylcobalamin. I think they produce somewhat different responses, but my experiences are dissimilar to what you have reported. I would argue that the methyl is "spiky", it has a more dramatic effect than adenosyl, and can sometimes result in what I would characterize as a more intense and adverse symptomatic response. In this regard, the more intense effects of methyl seem to cause somewhat more fatigue, which might explain the preference for adenosyl reported by some--perhaps these same people have greater toxic burdens. I also generally experience more brain fog from methyl vs. adenosyl. Presumably the more rapid saturation of methyl as compared to adenosyl, which requires conversion, explains this outcome. So, perhaps a more gradual infusion is more tolerable. Regardless of the explanation, I don't have any doubts that adenosyl is being sufficiently converted to methyl in my situation because it is working independent of supplemental methylcobalamin. Actually both work, and are considerably more "potent" than hydroxo, but I believe hydroxo has its uses too: It is more gentle.
  10. Freddd

    Freddd Senior Member

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    Hi Joopiter,

    I think we have a mix of causes going on. For instance, circulation getting cut off is a guaranteed method of a limb becoming numb. One of the characteristics of FMS is neurological change that results in the perception of pain, or maybe a hypersensitivity to stimulus. That went away in about a year in my case. However, I do have some specific damage to the spinal cord nerves that causes mr problems to this day and it increases in tingling with good batches of mb12 and decreases and numbs out with lesser quality. If I can keep that "good" effect going for enough months it does proceed and give me normal feeling back which has happened in about 90% of my body, so far.

    Things pick up with the mb12 because the damaged nerves start trying to work and boy do they let you know it. This intensification is normal in the neural healing as I and many others have experienced. If maintained long enough the nerves have so far healed. I was able to heal a lot of it becasue it wasn't "central" and much easier for the mb12 to reach. Adb12 has some role in this too.
  11. Freddd

    Freddd Senior Member

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  12. LaurieL

    LaurieL Senior Member

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    I had been following this thread.

    Freddd,

    I am copying the post an posting it here, despite the cross reference link. I believe it is important enough and would hate those whom do not click on links to miss it.

    Laurie

  13. LaurieL

    LaurieL Senior Member

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    I would like to add another of your response posts here as well. Again the cross reference link provided originally by Freddd.

    http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=163270&posted=1#post163270

    Laurie

  14. LaurieL

    LaurieL Senior Member

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    And last but not least.

  15. LaurieL

    LaurieL Senior Member

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    Back to topic.

    Freddd,

    You mentioned last week I believe about a peeling rash and then normal skin underneath. I forget where you mentioned that happened, but ironically....

    I am now experiencing just that on both sides of my nose. This is different than the rash and lesions that plagued me in the first six months. It began as hyperkeratoic, itchy, but no redness. Then it began to burn, and now as of last night, on the creases on both sides of my nose, a "crack" appeared and the skin is "peeling". It is still kinda hyperkeratotic still, but it no longer itches or burns.

    You mentioned that some seem to go through an eczema type of reaction including yourself. Do we know why that is and how it relates to the active b's and folate?

    What concerns me is two fold. Dr. Ritchie Shoemaker has found correlations in his mold patients to MarCoNS (Multiple Antibiotic Resistant Coagulase Negative Staph) and lack of response in treatment to mold exposure patients and Lyme patients. I have also worked in a hospital with immune compromised patients for almost two decades. What concerns me, is that I very well could have this MarCONS or MRSA. Although the peeling reminds me of these two, the behaviour does not. Have you yourself considered these possibilities as well?

    Laurie
  16. Freddd

    Freddd Senior Member

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    Hi Vegas,

    A few comments. Having rethought everything because of my very recent realizations about the forms of folate and their effects I would say that the balance between the various items is important. First the mb12 affects about 600 items and adb12 affects 2, which is going to be a large difference. Various things I have read and the experiences of quite a few persons indicates that while individual balance is different, the sweet spot appears to be somewhere between 3x to 10x as much mb12 as adb12. My recent understandings about folates also indicates that this needs to be balanced with a suitable amount of Metafolin. As the other forms can induce folate deficiency in some unknown percentage of persons (perhaps 50% of general population), especially those that experience "detox" with folic or folinic acid, I can't any longer suggest that people take folic or folinic acid. However, by my experience a small amount of folic acid appears tolerable if there is enough Metafolin to offset it, again balance is important.

    Adenosylb12 has only two know functions, certain interactions with fatty acids in the formation of myelin and occupying mitochondria to generate ATP. It has NOTHING to do with "detox". To be converted to mb12 requires a limited amount enzyme, same as hydroxycbl, and it competes for methyl groups just as hydroxycbl and cyanocbl in that mode. So again, very little adb12 can convert to mb12. Because of the slow turnover of adb12 in mitochondria, many people can reach adb12 equilibrium with a single dose per week.

    The headaches, temperature and metabolism changes are quite usual startup responses to mb12/adb12 becasue they affect neurology, neurotransmitters, muscles and all that for known and frequently experienced reasons. Temperature and metabolism changes happen because deficiency changes these things considerably and they can't become normal without changing, and then the body needs time to readjust the thermostat. That can take a month or more AFTER saturation is reached. Headaches are also a usual b12/methylfolate deficiencies symptom for all sorts of reasons and as the nerves, muscles and blood vessels heal they are often more intense for a while, along with intensifgication of many other symptoms. As this happens in just about everybody recovering from b12/methylfolate deficiencies regardless of "toxin" status, the toxic hypothesis only slows down healing by avoiding the effects of healing.

    The problems may actually be with folinic acid causing enhanced methylfolate deficiency which is typically called "detox" and can go on indefinitely with continued usage of folinic acid.
  17. Joopiter76

    Joopiter76 Senior Member

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    HI to all,

    I can confirm that with the folates. If I take large amount of folic acid I feel weak. This is because the different folates compete for transport into the cell and so large amounts of folic acid will dislodge methylfolate. This may be the reason why there are some reports about cancer and folic acid. If you cant generate enough methylfolate and then ad in folic acid the situation becomes worse not better because now methylfolate becomes dislodged even more.

    Does anyone experience bowel changes with more Methyl-B12 and methyl-folate? Or the methylation protocol? does anyone experience yellow stool. Many autisic children have this and this is what I have as well.
  18. Freddd

    Freddd Senior Member

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    Hi Laurie,

    I have pinned down when this happens. It happened initially when I started mb12 and several times when I have what I have now identified as a methylfolate deficiency setback which had been mysterious happenings until first glutathione and now what I have learned/experienced with folinic acid and folic acid. The epithelial tissues, which includes skin, are rapidly reproducing cells, constantly replacing the surface. My working hypothesis on this is that with either an mb12 or methylfolate deficiency the cells don't divide properly and various things go wrong, such as acne type lesions, eczema and other impaired cell formation problems. It appears that this impaired layer of skin is replaced when it becomes possible and the ill formed layer sloughed off. The timing of the occurrences I've experienced has been 100% after induced folate deficiencies or the initial correction of the mb12.
  19. Vegas

    Vegas Senior Member

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    Couple of things.
    I haven't appreciated a noticeable difference between different ratios of methyl/adenosyl.

    As to your point about folates, you may be on to something there, especially in light of what is know about the competition among folate sources. Metafolin is the gold standard. I took metafolin from day 1, so it was always available thus I can't compare effects of a disproportionate balance. I'm going to cut out folinic acid and the folic acid I'm getting from the Adenosyl to see what happens. Do you have a replacement brand of adenosyl you could recommend--one without folic acid? I certainly do not understand how you correlate methylfolate deficiencies to what people perceive as "detox" symptoms.

    Regarding the role of adenosyl: I don't know precisely how much adenosyl is converted to methyl, but i can tell you that I get results from taking it exclusively, althought I generally take both. I would argue that you may have oversimplified its role in fatty acid metabolism. One possibility relates to the fact that Methylmalonyl Coenzyme A mutase uses adenosyl as a cofactor. In this regard some benefits could be ascribed to the relative abundance of adenosyl to facillitate this reaction. Methylmalonyl Coenzyme A mutase is involved in the catalyst of Methylmalonyl-CoA to Succinyl-Coenzyme A, which is comprised of succinic acid and Co-Enzyme A. As I suspect you know this enzyme is critically involved in fatty acid synthesis and the Kreb's Cycle...core problems in CFS.

    I mention this in part because of the small number of supplements that provided benefits over the past few years, one that clearly benefitted me long before any B12 supplementation was high-dose Pantethine, which of course is a highly bioavailable form of b5 and a precursor to Co-A. The benefits could be attributable to its role in the steriodogenesis of adrenal hormones, or perhaps it was due to its role in the Kreb's cycle and fatty acid metabolism, regardless, this process requires adenosyl. My basic point is that plainly I have no idea precisely what is happening, but I can see that these processes are highly complex, inter-related, and dynamic. In this regard I think to say that adenosyl usage has no connection to detox is unfounded. If adenosyl can repeatedly, by itself, produce reactions, that are suspended when it is discontinued, I think there is a good chance its use has a causative role.

    Are you suggesting that what I perceive as "detox" symptoms are purely correlated to a vitamin deficiency and are not side effects of increased detoxification and immune response? Do you not see a role for enhanced methylation and improved immune response? Is it your view that taking methyl/adenosyl/methylfolate does not have the capacity to increase glutathione and improve the functioning of the immune system? Do you think that these changes would take place without any symptomatic response? Have you chelated metals? Experienced a herxheimer reaction from antibiotics or antifungals? I would argue that most have some degree of neurological healing, but the etiology of the symptoms is much more complex and for those with CFS necessarily involves some degree of detoxification.
  20. Vegas

    Vegas Senior Member

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    Yes, this has been my experience

    Not necessarily related to increased dosages of the supplements, but it can be. More importantly, this happens when the metabolism turns up a notch. In my opinion, this yellow or orange stool is caused by large concentrations of bile. Sometimes this will be associated with frequent bm's, again something that happens when you "dump" bile. While speaking of something considered TMI (too much information) sometimes this is accompanied by noticeable burning from the bile acids.

    Previously you asked about temperatures. I will say that I have been making forays into higher temperatures. I experience dramatic improvement in my symptoms when the temperature is elevated. It is still fluctuating, but it finally budged from 96.8. A few times it has been lower, but I still felt better. Back when it was in the 95 range, I was completely miserable.

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