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Do methylation cycle defects resolve?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by greenshots, Dec 31, 2011.

  1. greenshots

    greenshots Senior Member

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    Hello,
    I wanted to clarify something since I am new here, though I have been down this road with my daughter (autism). I see comments on Dr. Myhill's site and here about taking certain types of folate or other supplements until the methylation cycle is running again and wanted to know, do they go away at some point? Please forgive my ignorance but it seems like if you have a defect it will always be there. If you take supplements for a while to get around these buggers and actually get better, should you really stop them? I mean, won't the problem eventually build up again with that area not working properly? Is there a reason you shouldn't continue them, other than financial? I'm trying to wrap my head around what's genetic & needs fixing vs. what I can short-cut. My practitioner doesn't believe you can stop any of the main supplements used for the critical defects so I've kept my daughter on quite a few. But if I can just stop them now that hers are working so well & just see how it goes, it might help us in other areas.

    Thank you!
    Angela
  2. determined

    determined Senior Member

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    This is a very good question, Angela. I think until we know what causes CFS we can't really know the answer to this.....I really hope 2012 will give us some definitive answers!

    Has your daughter improved on the supplements?
  3. richvank

    richvank Senior Member

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    Hi, Angela.

    The genomic polymorphisms give tendencies, but they don't dictate what will actually happen in a person. ME/CFS is an acquired disorder, meaning that a person who has it did not have it earlier in their life. But they had the same polymorphisms earlier. So something else is involved. I've suggested that a variety of "stressors" can cause the onset of ME/CFS in a person who is genomically susceptible. They can be physical, chemical, biological or psychological/emotional stressors, or some combination of them.

    If this is true, then I think it should be possible for a person to become healthy again. They will always have the genomic predisposition, and if subjected to a high enough load of stressors, I think they could develop another case of ME/CFS. I do think there would be value in keeping up sort of a maintenance set of supplements after becoming healthy, for extra insurance against getting another case of ME/CFS. I don't know what dosages, but I think that taking some B12, folate and antioxidants would be a good idea, just to make sure their levels stay up in the body.

    With regard to the methylatiion cycle, in the clinical study carried out by Dr. Nathan and myself, we did see recovery of SAMe and SAH, indicating that the methylation cycle function was improved. Two or three out of the 30 patients in the study reported that they were fully recovered, and they returned to work full time. The report on 21 of the patients over 6 months in this study can be found here:

    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

    Results from all 30 over a longer time can be found here, in the last part of the video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Best regards,

    Rich
  4. greenshots

    greenshots Senior Member

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    My daughter is phenomenal! She's a new person in that she's not only back but better than she was before we started this whole path. I won't say it's been easy in any way but it's been worth all the heartache & losing so much. I wouldn't consider any other treatment plan, unless of course it was the magic bullet that cured everything without so much effort.

    Thank you Dr. Vank, I appreciate your response. I can see why those levels would come up so I guess a new study would be, do they stay up without the supplements? I guess time will tell. Great inFo on the study, it seems you have proven some endpoints.

    Angela
  5. Freddd

    Freddd Senior Member

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    Hi Angela,

    I'm 8.5 years into the methylb12, 7.75 years on adb12 and 3 years on metafolin. While I have done fine tuning of various sorts, adjusted doses lots of times, changed timing multiple times tried additional items or did stops and starts on others to be sure of effects. The ONLY thing that I have experienced that periodically shuts down cell reproduction causing immediate cheilitis and then IBS is my paradoxical folate deficieciency. Then I have to swear off veggies for a few days. That isn't easy. I used to think that there was a mssing factor for the last few years, and there may still be but it just might be the effect of the veggie folate that was the big unknown. I think it is clearly genetic and so could be a root cause of these problems in children

    Based on my experience and observed from others, including my teenaged children at the time I started mb12 and they did too, is that the levels do not stay up, possibly because whatever caused them to go down in the first place is likely still true. At her age it may be that she escaped most long term damage and that would be great. Good luck.
  6. greenshots

    greenshots Senior Member

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    Hi Freddd,

    I would bet that like my daughter, you have the SHMT or possibly the more severe ACAT defect causing your gut trouble. The SHMT seems to cause more symptoms like yours & responds to folinic & that 5 MTHF type since that's what they had me use for Autumn. I remember Yasko writing down something about how the SHMT locks all the methyl groups up so that the cycle is deprived of not only that but of new DNA & possibly, RNA. Since the gut needs a lot of genetic building blocks, lack of DNA seems to be a big problem. Though I do know that other defects cause stomach problems as well but I'm not sure of what those were now. Seems to me that targeting your genes would make a huge difference for you but also sounds like you are healthier now so glad you found your potion. I pray that we all be so lucky!
  7. Freddd

    Freddd Senior Member

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    Hi Greenshots,

    Folinic acid is far worse than folic acid. It takes less to block Metafolin out for days longer Fortunately, aside from residual neurological damage that is probably permanent, assorted injuries from car wrecks, head plants while skiing and other injuries I am 99% recovered from CFS and FMS. The only aspect remaining is the intermittant paradoxical folate deficiency from vegetable food source folate with IBS and epithelial breakdown and I may nail that this year, I hope. My mitochondria work well and my methylation works often enough that most symptoms resolve and don't come back. My health is the best of my life. I have cured FMS and CFS and 100 other symptoms that had all sorts of names that didn't predict effective treatment. I don't have any more stomach problems. I have discontinued most of the meds I used to take, $1500/month worth down to about $60/month not counting b12 and other vitamins. And that comes down to under $200/month.

    It is clear that many of my problems are genetic as my children have all of them. However, they don't have all the damage I do and take far less of everything to maintain health.

    I worked out the problem paying attention to all those symptoms the docs normally avoid, and debugging the nutritional items like they were a software problem. The hypothesis that I uses is that supplying the real mb12/adb12/metafolin and other cofactors would allow my body to normalize and restore a healthy equilibrium. It's worked for me and a lot of other people. During all the kickass startup effects and intensification of symtpoms and all that, I operated on the hypothesis of "so that's what kickstarting 600 body processses all at once is like on the way to healthy equilibrium" and I was correct. I did not return to being a healthy 30 year old where I started it (except I wasn't a terribly healthy 30 year old). Instead I am a much healthier 63 year old but much creakier body with damage. It's been some hard milage. I have excellent aerobic capacity again and can easily do 2000 vertical feet up and 2000 vertical feet down with a few miles of terrain inbetween at 7000 feet. Nine years ago I couldn't climb a flight of stairs without resting part way. The only thing that genetic testing woldl do is either confirm what I have done or taken me down a lot of wrong pathways. One thong I have found is that an awfull lot of test results are badly interpreted because they are interpreted based on understandings from cyanocbl, hydroxcble and folic acid which work incredibly badly compared to mb12/adb12 and Metafolin and the research on these inactive vitamirs do not predict the results of the active ones.
  8. greenshots

    greenshots Senior Member

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    Hi freddd,

    It sounds like you have many things worked out well through trial and error and for me, that's plenty scientific. I don't really see how the genetic testing could help you at this point either but then, who knows whats in store in the future? I sure agree that tests can sometimes sidetrack you considerably and make matters worse but in the right hands, they can make things much better without all the years of careful observation. Though my doctor didn't actually agree with Dr. Yasko on the folinic, she did agree on some things. But she didn't think that every defect required treatment & felt that a few of them might actually be helpful, and not just the ones that Yasko felt were helpful but some of the others. I don't remember all of her reasons for that but I'm pretty sure she thought some were purposeful, like with natural selection, and that it was only some of the toxic exposures we have today that changed these into negatives. But in my daughter's case, she did a bang up job & I'm so glad we went that route because she gave me my daughter back & then some! But much like you, I like that she had her own mind and didn't blindly go just by what Dr. Yasko, or anyone else said, and was always checking everyone out for the most well-rounded approach. I just couldn't do all that research and it made me feel safer to have her on board than having someone who rubber-stamps everything that one "expert" says. Anyway, I wonder now about the folinic since you felt strongly about this also. Maybe this was her reasoning, I'm not sure.

    As for your children's genetic issues, you'd be surprised in that regard for sure. I was certain Autumn had many of my problem genes since she favors me in every way that a child can. Yet she doesn't have these two mutations of mine, which are supposed to be key areas, the CBS & MTHFR A1298C. Instead, she has several of my husband's & probably a few of my other less desirable genes despite the fact that my husband is healthy (insert knock on wood here) and I'm not. (Which was the reason I tried to see what all the commotion was over the CBS but it doesn't seem that anyone on this site knows so I'll keep plugging away). As for your children, if they inherited many of your negatives (assuming you have more partial defects than full) and more of their mother's negatives or milder defects, by comparison, they may really only have a couple of issues. But of course, there's always the ever present issue of toxic threshold and whatever you were exposed to vs. them.

    Anyhow, I'm glad that you were able to figure it out & beat it, that's wonderful!
    Angela
  9. globalpilot

    globalpilot Senior Member

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    Hi Greenshots,
    I wonder if you could elaborate on teh ACAT polymorphism What does it do to the gut and what did you do about it ?

    I did my Yasko test in 2006 and the ACAT wasnt tested. Does anyone know if she retested old samples for the new polymorphisms since then or do you have to retest ?

    Regards,
    GlobalPilot

  10. Valentijn

    Valentijn Activity Level: 3

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    It might also be helpful for identifying people that have the same issues as you, who aren't cured yet and don't know how to get started.
  11. greenshots

    greenshots Senior Member

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    Acat

    I'm no expert on the ACAT but I can tell you it causes horrible gut issues as well as mitochondrial problems. It impacts the Kreb cycle (I learned this name years ago so can't seem to remember the new one of citric something). We came in before Dr. Yasko's big changes & new book so now she advises you to hit the SHMT & ACAT first, even before the CBS. She also has an extra panel for $225 that looks at ACAT, SHMT, BHMT 1-4, AHCY, a new MTHFR, & something else. She finally makes a combo ACAT/BHMT and AHCY/SHMT mix that treats these areas. I think the ACAT is mostly Kreb cycle support, bile salts, & adenosyl B12.
    Now that I think about it more, my doctor's stuff has to relate to both autism & CFS so I'll have to get back there for some learning before my brain tanks again. For easier methylation info, the site is www.autismnti.com (might be org) and it's way better than looking at Dr. Yasko's biochem stuff, that just makes me crazy!

    Angela
  12. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    I'm naturally quite curious. If I had the money I wouldn't hesitate for a second to get every test in books because that is all more data on all this and I also agree that it could be helpful. I have worked long and hard to arrange the data differently to help give such people a start.

    Howver, I have read large amounts of peer reviewed research. I find an awful lot that just doesn't hold up for all sorts of stupid reasons, like scrambling numbers around, graphs that don't match tables and manipulation of interpretation to suit the marketing department. As I read research, especially on the b12/folate which I know most about, I make explicit all the implicit assumptions. What I would really like to know is which genetic variations predicate paradoxical folate deficiency. As that is not at all recognized by doctors or researchers even if it hits them square between the eyes, the interpretation of all those genetics of folate tests miss the elephant in the room. Even the very simple potassium level test is such that all these induced low potassium symptoms people have as verified by relief from them quickly and reliably after taking potassium, typically will be "in range". Sixty years of research on cyanocbl and later hydroxycbl has built assumptions into all the nutritional research based on these inactive forms such that 2/3 of the actual active b12 deficiency symptoms are totally unrecognized as deficiency symtpoms. It has made mysrtery diseases out of them. It has made mystery disease out of low potassium. 65 years of folic acid research has turned paradoxical folate deficiency into unrecognized mystery disease. How many of the docs treating us have no idea at all about the lack of effectiveness of folic acid? How many suspect that there are people like me that can have the same paradoxical folate deficiency from vegetable food source folate?

    I took experimental design courses in school. I took lots of science and lab courses. I'm a sytems analyst quite capable of analyzing data and hypothecizing from what I read and experience. I've been consulting in health insurance and developing software for HMO & Insurance since 1982. I synthecize across multiple fields. The difference is that I have no body of previous research behind me to protect. You know what they say about physics theory, that the rate of change is one funeral at a time. Using history we know it takes about 70+ years to understand a vitamin's function and even longer to arrive at best use. Consider the recent change in in Vit D suggestions now that they discovered what the deficiency looks like.


    So, basing b12 understanding on cyanocbl/hydroxycbl there is one and only one b12 deficiency syndrome though if one compares lists of symptoms from countries using cyanocbl with those using hydroxycbl there are two distinct patterns to be seen there. When using a model of b12 deficiency based on mb12/adb12 and distinguishing body from CNS/CSF and distinguishes methylfolate, we come up with at least 6 definite distinctive b12/folate deficiency syndromes that can be seen in the patterns of the symptoms. These symptoms depend on genetics, epigenetics and lifetime occurances of many kinds. Using these symptoms organized in this way a person can say, "Oh, it looks like I have a CNS low on mb12 and adb12 and a body low on adb12 and good on folate or "suspect paradoxical folate deficiency). All of this is pragmatically determined with the hypotheses based on a combination of readings, experience and observation of others. What we don't know are percentages of people that respond or don't respond or have other conditions or have other comorbidities. Making these 6 deficiency syndrome distinctions one can then see what their bodies' needs/patterns for b12 and folate are.

    On the next step of the ladder are another half dozen or so critical factors. They are critical because lack of any one or more of them can prevent a lot of startup response in one or more ways and then when taken, it can all come flooding in. I can distinguish some of these. In general I'll need the help of anybody here willing to help define what all these items are and what symptoms they affect.

    On the next step are the essentials...
    mostly vitamins and minerals, and omega3 oil, Lecithin
    These are items could also be critical factors except that being that deficient in them has their own distinctive deficiency syndromes. Lack of vit C will prevent tissue formation (scurvy). According to my dental friends who routinely prescribe b-vitamins and C for their patients is that they see a lot of borderline deficiencies. B12 and folate deficiencies also cause failure of tissue formation in the mouth. If they take their vitamins regularly the docs and hygenists see noticable improvment in oral health in 6 months.

    On the next step are the basics...
    these are more likely to be herbal or miscellaneous minerals, yeasts, chlorella, lots of things.

    Lack of these only makes small specific differences if any for most folks. ie, most folks will not notice the effects of chromium or selenium, which is just the way it is supposed to be. On the other hand they may be very helpful for various symptoms and specific people

    I hope this gives you a place to start. I will make a topic and start posting pieces of the symtoms listing and where they mi
    ght come from. I am doing this because there is no way for the active b12/folate protocol to be simple because it causes too much to happen too fast to ignore it and wait for other nutrition to catch up. Read the ACTIVE b12 basics.
    Stickey at the top of the methylation subdirectory.

    Since most of FMS, CFS and ME symptoms are contained in the lists, and more need to be identified and added, it should be most infomative. and again helpful. There already exists somewhere or another on these threads, a couple of versions of the composite symptoms list. This next one goes well beyond that. Good luck.
  13. Freddd

    Freddd Senior Member

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    Hi Angela,

    Another name for the Krebs cycle is the Citric Acid cycle.
  14. Rosebud Dairy

    Rosebud Dairy Senior Member

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    Being the proud new-known owner of a C677T single mutation, I can say take the genetics with a grain of salt.

    Have any lab done usually answers the question, "Will the change the course of my treatment?"

    Having the genetics done for me gave me a lot a peace of mind on my mother's early demise, even though I didn't know HER genetics.
    Having the genetics gives me the motivation to spend what I do on "JUST" a vitamin.
    Having the genetics gives me a tiny leg up, and helps me stay the course.

    But, it is ONLY a test.

    You have to know the questions that it will answer for you.

    Having my genetics has changed the course of treatment, and has given me some answers regarding my son's concussion -- I think -- But all the MTHFR stuff is so new, that like someone else said, doctors may miss something small but important like a potassium problem -- they probably did in my case looking back at all the muscle spasms I had when I started methylfolate by itself a few months ago. My doc wants to do all the Braverman stuff, which pretty much looks to me like MTHFR-related stuff, so I just need to read up, go in with my plan, and remind her of MY treatment goals---which are MINE not HERS.
  15. greenshots

    greenshots Senior Member

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    Thanks Freddd, I remembered that soon after I closed. Thanks to word groping, I forget all kinds of simple words let alone citric acid cycle. I can also see that you're definitely passionate about this issue and I can see why. Decades of feeling like heck can do that to anyone and its really sad given the fact that its so easily treated for some.
    I felt this way going through the disastererous healthcare and research maze when my daughter was autistic. It was absolutely shocking to see how many people just don't give a hoot about your health, never mind your child's health. They'll let your life go down in a ball of flames before they admit they were wrong about some insane conviction they've held like "Folate's good for everyone, lets pack it in the food supply" or "All shots are safe for all people" or any number of things. I was one of those very pro vaccine moms who thought all those "internet moms" were just plain nuts, that is, until my daughter had her 2 year shots and within the space of a week, we lost her to another world. It was truly that fast and I'll probably never get over the guilt I feel over not questioning authority. You are correct, we need to ask ourselves many questions and put forth plenty to research it ourselves because no one's going to do it for us.

    However, you also don't want to throw the baby out with the bathwater. I find a healthy dose of cynicism is just that, quite healthy. No matter how true something feels or how strongly we feel about it we need to ask ourselves "Could there be more to the story?" and "Could some of this be right while other parts are not?" or "Maybe this is the holy grail for me & some others but not so for everyone", since we can easily get caught up in this sort of thinking when it does work so well for us. Autism moms are one of the worst groups for this thinking, myself included. We get to feeling that this treatment or that procedure is the best thing since sliced bread because our child began to talk after that or we had some other incredible gain. However, after watching other moms listen to my advice and have horrible outcomes or maybe nothing at all, it became apparent that there was more to the picture. My cousin's daughter is exactly like my daughter in every way & even had the exact same triggers. But nothing she has done for her has helped my daughter and vice versa. After seeing this time and time again, I realized the distinct changes in all of us had a lot to do with who we become and what happens to us, and that comes with genes. Now maybe this isn't all about the genes because there really is so much more to it but it is a huge factor that we can't ignore. And while so many moms worship the ground Amy Yasko walks on, I respect her but I also realize she's a human being who makes mistakes, has her own flawed judgements at times and like every other human being, tends to get caught up in her own beliefs or gut feelings on things. So like someone else said, I took it with a grain of salt and looked for other theories and insights as well. And, once I couldn't do that so much, I found a practitioner who operated that way.

    In the end, there's probably nothing more important than a healthy skepticism and the desire to learn more about everything possible, even once you know your genes. I'm blessed to have the benefit of hearing more insights by tuning in to this forum.

    Thank you for your thought provoking comments,
    Angela
  16. Freddd

    Freddd Senior Member

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    Hi Angela,

    I am sorry to hear of the diffuculties of your daughter. We had a very close call. On a nice day in October near her 2 year birthday she point at a spider outside the window climbing up it's web, she said her first sentence, "It goes up" pointing at the spider. That afternoon she got a cold. Within a day she started flapping her hands, stimming, and said nothing but "baaaa baa baaa ba" for almost 3 years. After that she was slowly recovered. I had delayed myelination as a child and did not talk understandibly until 1st grade having been held back repeating kindergarden. I have observed that illness, vaccination, physical trauma like a broken bone or who knows what can trigger this change if a child is low on active b12s and folate. In retrospect we know that delayed myelination is a b12 deficiency result. I also know that all 3 of my children have the same folate and b12 probldm I do. I suspect almost any stressor can tip over a child into this if they are suscepatable in the first place. Those with autism have been found to have low CSF/CNS levels of cobalamin (the two forms of b12). Please don't blame yourself about the vaccinations. It could have been ANYTHING that stressed the system, even a common cold.

    The 60 years of faulty research based on a lab mistake (cyanocbl) and the creation of folic acid a few years before have almost destroyed my family. If mb12/adb12/Metafolin hadn't become available I would be dead now and all my children would be ill with FMS/CFS. They are not and neither am I. However, 60 years of research worked very well to keep us all sick and in the end, dead sooner than if we had the real vitamins instead of the enshrined fake vitamins of cyancbl, hydroxcbl and folic acid. If not for the lab mistake in 1948 NOBODY at all would ever use cyanocbl or hydroxycbl and tens of millions wouldn't be ill with all these various b12 deficiency diseases while taking the fake "b12" (cyancbl and hydroxcbl) and fake "folate" (folic acid) since these only affect 1/3 of b12 deficiency symptoms in about 2/3 of people thereby hiding the fact of the deficiency. I and a lot of people here can continue most of their b12 deficiency symptoms and develop additional ones while taking cyanocbl and/or hydroxcbl.
  17. greenshots

    greenshots Senior Member

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    You know, that was the funny thing. My daughter had the rotovirus & had to be hospitalized (the shot was taken off the market around the time she was due for it so she never had it)for 4 days & recovered like a champ! She had chicken pox & did just fine there too. She even had pneumonia and double ear infections at 6 mos. I put her on probiotics, etc since I knew all the antibiotics would kill her gut and she never seemed the worse for any of those illnesses but she had the MMR and 3 days later, after having the worst diarrhea I had ever seen (WAY beyond rotavirus!) she never said another word until I took her to see her doctor, 2 years later.

    I remember having a conversation just a month before how stupid people were thinking a shot could cause autism and
    that not vaccinating your child was like murdering them, at least indirectly. I had strong feelings about all that and was taught a very good lesson, One that I'll never forget. Now I don't assume and always question. I don't think the vaccines are evil or bad for everyone but they are definitely not good for my child. I think it's genes and toxic load and a dash of this and a sprinkle of that along the way and then they find their straw and that's it.

    Good to know the info on folate, maybe this is the reason her doctor said no to folate and folinic but said ok for Folapro. I'm glad to know about cyNo B 12 as well. Her doctor said not to take it because it's essentially cyanide so I did follow those instructions.


  18. Freddd

    Freddd Senior Member

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    Hi Greenshots,

    The people I know with young children currently give their children prophalactic mb12 before the vaccine and immediately following and each day for a week if they are not otherwise giving it regularly. So far none have had any problem. The same advice also applies before and after having nitrous oxide.
  19. greenshots

    greenshots Senior Member

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    That's a very interesting idea and probably valid in many respects. I'll have to pass that tidbit on. Thanks!
  20. Freddd

    Freddd Senior Member

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    Hi Greenshots,

    As far as I know there isn't anything else that protects against so many causes of toxic neuron injury and cacading neuron death. It is for now the closest thing we have to a general purpose neuron protectant.

    It reverses botox. The neurotoxin from clostridium botulinum is neutrlized by b12, or at least the effect on nerves is. Same with a related bacteria,clostridium tetani. With enough daily b12 tetanus is a difficult to diagnose mild infection. These are two of the nastiest neurotoxins around. It also protects against glutamate toxicity and a number of other chemicals. It can trigger healing in neurons that were damaged by other things.

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