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Methylation

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

  1. jenbooks

    jenbooks Guest

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    Freddd, please understand this post is too long for me to concentrate on fully (I'm revising a book at this very moment.) However, having skimmed it (and therefore perhaps wrongly) I think I'll still say you consider startup various effects that occur while getting b'12s "on board" as you put it in the process of healing the organism.

    Your assumption is that b12's, the active forms, are an unalloyed good in the patient population you are addressing here on this forum which is very heterogenous.

    My assumption is that some people will do well and need these b12s, some need one some need both and some don't do well and never will and do not need them.

    I think you need to incorporate that assumption into your overall worldview.

    I understand you are a layperson, not a scientist, not an institute, and not a doctor who can order the kind of tests that for instance Yasko specializes in. Therefore you can only offer your best hand, your best guess. I find some of your reporting questionable (as in my questions about your "N" a lot of which turned out to be people you met only once). I don't find evidence for your glutathione as a methyl-b-12 killer so to speak, reasonable. If I had time I'd pass it on to Dr Deth for his much more brilliant and considered opinion but I just don't.

    So the upshot is four people on this forum had dreadful responses to the active b12's. That just needs to be stated as a risk and possible side effect, and one needs to realize that not everybody who is sick needs active b12's. You were remarkably healed and others posting are having good results which is great. But it's not uniform.

    That's all I can say. Now gotta get back to work. Thanks. Apologies in advance for not reading the whole long posting in detail I just don't have it in me.
  2. Freddd

    Freddd Senior Member

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    Hi Jenbooks,


    I'll keep it direct and simple.
    1. I agree that an expanded caution is needed and will attempt to write up one that will be reasonably complete and satisfactory to all concerned. I will keep it simple and direct including as few assumptions of all varieties as possible.
    2. I work and write with multiple layers of abstraction and logic. Nobody is going to "get it" who skims it. I think that is part of our lack of communication as you stated.
    3. I will point out differences in hypotheses, theories, assumptions and understandings based upon them in the cautions. A different theoretical basis leads to different interpretations of, and different reactions to, symptoms.
    I also disagree with so many of the things you interpret that I said based on a skiming. I would prefer you quote what I said and then disagree with it as you distort what I say in your reporting of it as you did again. However, you appear not to have actually read my objections before and I doubt that you would this time so I won't state them again. If anybody else is actually interested, ask and I will explain.
  3. klutzo

    klutzo Senior Member

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    Speaking for myself

    Hi all,
    I just want to say that I regard my awful initial reaction to the B12 as an indication that something is definitely wrong in that area, and as a reflection of my own Type A personality and extreme impatience. It is my responsibility to sift and winnow what I read and live with the results of my decisions. I should have been much more cautious. Normal people do not react that way to vitamins, even if they do not need any more B12. They simply pee it out and do not react.

    I used my husband as a control and fed him whole lozenges of MB12 as well as whole tabs of Metafolin. He had zero symptoms.

    I also have a non-existent working memory, and kept forgetting during my first week that I should not be taking COQ10 on this protocol, because it could (and did) raise my already high blood pressure. I have 200 units of the cheap form of COQ10 (ubiquinone) in my multivitamin, so I need to not take a multi for now. I was also taking 50 units of the active form (ubiquinol) 3 X weekly due to my heart damage, and have now stopped that while I do this experiment.

    My mother had pernicious anemia, and I've long noted the similarity between the symptoms she had and mine, and wondered why my B12 level is so high, when I have the same problems. I was not aware before that CFS patients average 1/4 the normal B12 level in their CSF no matter what blood levels are. That would certainly explain my lack of memory.

    Though my reaction was distressing, I see it as a good thing in the long run, because now I am even more certain that part of my problem lies in this area. I am now taking just a teensy nibble off a corner of a half lozenge of AB12 daily, since even the B-Right speeds me up. (That may be due to Pyroluria, a problem many Lyme patients have. B-Right has the correct form of B-6 to help it, while most B Complexes don't).

    As far as heterogeneity, it certainly has been a frustrating problem for us, esp. after the CDC loosened the criteria for a diagnosis of CFS, instead of tightening them like they said they would. BTW, I did not meet the old criteria, but easily meet the newer one, and I read a speech by Dr. Cheney yesterday in which he outlined the progression of CFS and it fit my 24 yr. illness to a Tee. According to him, I am very near the end, so I have nothing to lose by trying this, as long as I am careful enough to allow me to keep doing the chores I simply must do. I wonder now if this issue of who really has what will become irrelevant, since it appears we all have a rather rare retrovirus, and those who don't have it will be excluded from the diagnosis, I presume.

    With respect to all points of view,
    klutzo
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Klutzo,

    I just sent you a PM. I don't think you are set up for notification, so I mention it here.

    Sushi
  5. jenbooks

    jenbooks Guest

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    Freddd, I appreciate you adding in a caution. I'm sorry I can't follow your posts more closely but they tend to be extremely detailed and long. As you well know we're all dealing with a lot on our plates--so I think it sounds good you'll add some cautionary statements.
  6. Freddd

    Freddd Senior Member

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    Hi Klutzo,

    I wonder now if this issue of who really has what will become irrelevant, since it appears we all have a rather rare retrovirus, and those who don't have it will be excluded from the diagnosis, I presume.


    I have lost count of how many viruses CFS/FMS etc has had assigned to it. That it is associated with prostate cancer is a concern to me. I don't think it will change anything at all. If half the people have it and half don't then they still need to figure out what is going on with the other half and how to treat any and all of us, with or without the virus.

    I read a speech by Dr. Cheney yesterday in which he outlined the progression of CFS

    Can you post a link please?

    Also, if you have found some material on CFS and this retrovirus can you post a link to it. So far I haven't located anything of substance.

    One of the things I would like to mention as an effect of active b12s is that other vitamins and supplements, such as CoQ10 appear to have more effect. My experience, and that of many others is that before mb12, most vitamins and supplements had no noticable effect but after mb12 quite a few had noticable effects (good, bad or indifferent, just noticable).


    My mother had pernicious anemia, and I've long noted the similarity between the symptoms she had and mine, and wondered why my B12 level is so high, when I have the same problems. I was not aware before that CFS patients average 1/4 the normal B12 level in their CSF no matter what blood levels are. That would certainly explain my lack of memory.

    Yes, that CSF cobalamin difference is probably the reason for so many neurological and neuropsychiatric symptoms. And there can be two kinds of CSF deficiency; mb12 and adb12 each with it's own effects. What is unknown is WHY it is low, what the mechanism(s) are.

    Good luck and keep on trucking.
  7. klutzo

    klutzo Senior Member

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    Cheney Speech on progression of CFS

    Fred,
    I am not computer savvy, since I was already on disability before the PC came out. When I lost my job, there was no Internet or email. My computer at work took up half my office, and the printer alone went all the way from the floor to the ceiling. And all it did was word processing! So, I am largly self-taught as to the Internet, along with bugging computer-literate friends to teach me things, and there is a lot I don't know how to do.

    The web address I found that info you requested a link for is so long it does not all show in the browser window on either Google or once you are at the web page,so I don't know all of it to give it to you. So, I will tell you how to find it.

    Google "Paul Cheney + pancreatic failure". The first item on the list should be from www.wellsphere.com/chronicfatigue....etc. It is from May 1, 2009 and mentions heart failure in the blurb. Click on that and you should be at the right page.

    The listing is exactly what I've gone through over the years. Out of symptoms listed, I had at least 95%, and the progression of them was exactly the same as mine.

    I have seen no info on the retrovirus except the press release from Whittmore-Peterson that Cort sent out. I also got it from one of my closest friends who has Lyme and CFS. Over the past year we've both independently come to think that it is the CFS that is killing us, not the Fibro or the Lyme. I used to think all 3 were the same.

    Due to my personal history, I regard Fibro as a genetically predisposing condition to CFS, and Borrelia (Lyme) as an opportunist that most of us carry, that can be activated once CFS has done it's dirty deeds to immunity. I am open to having my opinion changed by solid proof.

    klutzo

    P.S. Fred - go to the "Latest Research" section of the forum and you will find plenty on the retrovirus. Especially good is Hillary Johnson's blog, linked in Cort's first post (author of Osler's Web, the best book ever written on CFS, IMO). Her opinion on this is very different than yours. I tend to be more skeptical, like some of the commenters who posted after her blog. I am sure a lot of the naysayers will be trashing this in every way possible to try and save their careers.
  8. Freddd

    Freddd Senior Member

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    Hi Klutzo,

    Thankyou Klutzo. It's hard to beleive that it is actually getting some credibility at long last.

    I read that piece and it matches me to a T. For whatever reason my doctors would not believe it, one said "You have too many symptoms to be believable". Most said "IAIYH" and wanted to blame it on psychological problems. I had bad reactions to so many drugs. I took Dilantin to control neurological pain and whole body spasms. I also took a lot of valium to control spasming. I did have personality and mood changes and cognitive impairments. At the end I could hardly breath because of fluid pressure. My abdomin was blown up and hard like a baskekball. I expected to wake up dead any day. I had heart arythmias multiple times per minute. The pain was terrible all the time. I couldn't focus my eyes. I had no exertion tolerance. Going shopping took days to recover from. I had to have assistance in the shower. Some days I had a very hard time combing my hair and brushing and flossing my teeth. It was totally exhausting and left my arms in burning pain every time. I often needed assistance dressing. My memory was rotten. I had so many neuropathies, hyper-reflexia or loss of reflexes, numbness, loss of motor control of legs, feet, toes, no position sense, intermittant incontinance, loss of fine motor control and inability to type for days at a time. There were hardly any foods I could tolerate. My digestion was terrible. This just scratches the surface. I had 185 of the deficiency symptoms on the list I posted all at one time. My body just plain was in multiple system failure and everything was breaking down and my fight with my many doctors was about whether it was even real.

    The day it hit I had to crawl to the bathroom after skiing Solitude a few days previous. It took me 6 months to work up to being able to walk 300 feet, 5 years to get up to 600 feet. I had no exercise tolerance and took days of recovery for a short shopping trip.


    http://stanford.wellsphere.com/chro...-me-cfs-is-not-a-somatisation-disorder/660678

    Here is the link for any who want to read it.

    I am most pleased to be recovered from all of it except the worst of the neurological damage.
  9. klutzo

    klutzo Senior Member

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    Symptom list and computer links

    Freddd,
    I did not think that was the complete link when I saw all those ....... in it, but it was complete, sorry! Like I said, I am no computer nerd!

    I was never told I had too many symptoms. I was told I had "classic fibromyalgia",so severe that I was "in the bottom ten percent".

    CFS was off the table, since the criteria were different in those days, and I did not have swollen glands, sore throats or fevers. I still don't, except for one swollen salivary gland. But, I do meet the present criteria.

    I am glad you came out the other side after all that suffering.

    klutzo
  10. Freddd

    Freddd Senior Member

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    Hi Klutzo,

    When I was being diagnosed fibro was considered an imaginary disease of neurotic women by many. I was told by a female neurologist who had just finished stickling needles in me and applying electric current that "I can diagnose you with fibromyalgia, an imaginary woman's disease. It will just cause other doctors to treat you badly". I was already so diagnosed and receiving bad treatment. When I got accepted by the pain clinic they made clear to me that they were treating the real pain from the car wreck damage and not the imaginary pain from fibro. The morphine was a Godsend in any case.

    I also had the CFS criteria that also was considered an imaginary disease of neurotic women and my chronic swolen glands were dismissed as "Probably scar tissue by this time". 16 grams of vitamin C (Pauling) per day brought those way down.

    Being male in all this was not helpful. The moment the docs decided "Its All In Your Head" they became useless.

    And by the way, I was also diagnosed as being a computer nerd.
  11. klutzo

    klutzo Senior Member

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    Nerds and other horrors

    Gee Freddd,
    Are you really sure you're NOT a woman? :D A lot more men and kids probably have fibro, but are getting more "serious" diagnoses like arthritis instead. After all this time, we still can't get taken seriously.

    You'd think they would have learned from back around 1900, when they declared that diabetes was all in your head. Then, around 1940 or so they said MS was all in your head. In the 1970's, I remember when allergies, irritable bowel, and migraine headaches were all in your head. They don't learn from their endless arrogance.

    I know two men who were diagnosed with fibro when they did not come close to meeting the official criteria. Some docs don't even know how it is supposed to be diagnosed now, after all this time.

    I had to explain to the one who tried to diagnose my husband with fibro, that my husband's pain is only in the upper two quadrants of his body, and you must have symmetrical pain in all four quadrants to even consider a diagnosis of fibro. My husband hurts because he has done hard physical work for the past 41 years. People with fibro hurt without any obvious reason for it and hurt even when they're just sitting around.

    A friend of my husband's was diagnosed with fibro with only 5 tender points and you must have at least 11. I have 22.

    I got a lot more respect once they found brain damage and wrote it up as being caused by my car accident. Disability was so impressed by the extent of my "real" brain damage that they changed my reviews from once every 3 yrs. to once every 10 yrs.

    I've constantly been diagnosed with "reading too much" by doctors.....is that a closely related illness to your "computer nerd"? If so, I will wear that label proudly.

    klutzo
  12. Freddd

    Freddd Senior Member

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    Hi Klutzo,

    I've constantly been diagnosed with "reading too much" by doctors.....is that a closely related illness to your "computer nerd"?

    You can bet it is. Paper or pixels just doesn't make that much difference. "You know too much" or "You notice too many symptoms" or "you read too many statistics" or "You look up your prescriptions in the PDR and read contra-indications" and "medical students disease" are all symptoms.

    My ex wife ended up self diagnosing scarlet fever at age 6 after her doctor missed it. She could read the Guide to Diagnosis her parents had. In those days it caused the house to be quarantined and embarassament for the doc who missed it, and missed treating and reporting it to the health department. She did "too much reading".

    My own research reading changed my whole idea of risk since the accepted treatments and protocols my docs were using were killing me. Fortunately I got all new docs right about the time I found mb12 so none of them were embarrassed by my getting well. Only my chiropractor remained and he said "See, Nutrition!" He has a whole wall devoted to nutritional supplements and is leading the fight to allow Chiropractors to inject and prescribe methylb12.
  13. Violeta

    Violeta Senior Member

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    Hi Susan,
    This post is from quite a while ago, if you're still here, I am interested in how it went with your drink mix. Also, what homeopathic remedy were you taking?

    Thanks,
    Violeta.

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