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Are you getting better with this approach?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by ellecognito, Jan 24, 2017.

  1. ellecognito

    ellecognito

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    Hi all,

    I'm generally a lurker here but have been looking at the methylation question lately. I've received a lot of conflicting advice in another forum about whether or not the genetic profile of methylation impairment is even clinically significant. I do have some mutations that would affect my methylation cycle but I'm not really sure what to think anymore.

    Since, to me, the proof is in the pudding, maybe it's useful for me to hear some success stories. My own genetic issues are primarily with CBS upregulation and then a more minor heterozygous mutation in MTHFR. If the recommended test strips are to be believed, I do have high sulfate levels (between 800 and 1200). The diet / protocol for reducing sulfur is complicated and difficult-- never mind that there is a low-sulfur version and a low-thiol version with radically different recommended foods-- and if I'm chasing rainbows I'd prefer not to make the effort. On the other hand, after 30 years living with this, it would be nice to have the ability to do something to make myself feel better, even if it's a long slog.

    So, help me understand. Did this approach make you feel better over the long haul? If you had CBS upregulation, was it worth the effort of eating to the protocol? Or is it, as has been suggested, junk science where just about everyone has these mutations?

    I'm truly not trying to start argument here, just wanting your success stories if you have them, as I'm so tired of being tired. I've heard the negatives, so mainly looking for the positives if they are out there. Thanks much for your help.
     
  2. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    I feel miles better since I started the Fredd protocol (April 2016) which I have adapted now to replace sublinguals with transdermal oil (October 2016). I have very little brain fog now (apart from when I crash). I have better cognition generally with better short term memory. The joint pain and stiffness is a lot lower and my morning nausea is improved. I still have very little strength for lifting and carrying or doing any aerobic exercise and I still crash about once every 3 weeks so I'm not cured, just feel a lot better if that makes sense (60-70% instead of 25-45%). The turning point has been the transdermal b12 oil which is so much better than the sublinguals and delivers the b12 gradually over 8 hrs. This has really smoothed out the swings and roundabouts for the co factors. This approach doesn't work for all though. I haven't been genetically tested and I don't know whether this has any validity at all ( best asking others).
     
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  3. alicec

    alicec Senior Member

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    The so-called CBS upregulation promoted by Yasko is nonsense. Here is a thread discussing this SNP.
     
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  4. ellecognito

    ellecognito

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    Yes, I've already been told it's "nonsense" in another section, but it's not clear why that opinion is so strongly held by some. That's why I'm asking for the positive experiences of others around this issue. Experiences matter to me, as having worked in medical research I know there are many ways to interpret data.

    These are obviously complex issues and I'm trying to get both sides before I decide if I should continue with investigation. Judging from the lack of positive responses here, I'm growing more skeptical.
     
  5. alicec

    alicec Senior Member

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    Based on the science behind it, as discussed in the thread I linked. The claim that it is a profound upregulation is based on a complete misunderstanding of an experimental research paper which had nothing to do with the SNP.

    Asking for experiences of dealing with problems with sulfur may reveal things that have been helpful to people but it has nothing to do with this CBS SNP. If the SNP is the reason you are contemplating such dietary and other restrictions you would be wasting your time.

    First you need to have data to interpret. There is no data supporting Yasko's claim about the SNP.
     
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  6. ellecognito

    ellecognito

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    Thanks. I'm taking a look at the papers now.
     
  7. Oberon

    Oberon Senior Member

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    I copied and pasted the below from what I wrote in another thread:
    ______________

    I continuously advise some serious caution in pursuing methylation protocols. I have permanent negative effects which I'm unsure if it's from too much folate, b12 or potassium destroying my gut. I wound up in the hospital a few times over it. I believe in all likelihood it was the potassium that did me in.

    Since January I now have what appears to be permanent dysphagia, gastroparesis, reflux, and I can barely eat a meal without regurgitating it for hours after eating. I am also noticeably more fatigued from this whole ordeal.

    Methylation may help or may not help but I strongly advise the proceed with caution and Caledonia start low and go slow approach if you are going to keep pursuing it. You see a lot more information about Fredd's much more aggressive protocol on Phoenix Rising.

    He seems like a very smart guy and has spent countless hours researching and putting out information to help others and it clearly has helped many people on these forums. With that said in many regards methylation treatments are still more of a pseudoscience than actual science. There is not nearly enough research to confirm the efficacy and appropriate dosages for treatment and what works for one may have no impact or even harm others like in my case.
    ________________
    This is my personal experience which I update every few months:
    http://forums.phoenixrising.me/inde...ased-heart-rate-depression.45167/#post-769964
    ________________
    In my opinion there should be a big sticky with a very large Proceed With Caution in the methylation forum. There are many here who had amazing success with it but there are others like me who have wound up significantly worse off from a Methylation protocol and have never recovered from the damage.
     
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  8. ellecognito

    ellecognito

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    Thank you. I'm sorry that happened to you. I will indeed be cautious. Mainly thinking about just making dietary changes at this point.
     
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  9. JES

    JES Senior Member

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    A normal diet provides about 4000 mg of potassium each day, so it seems very strange to me it could have caused any permanent damage. Potassium overdose can be extremely dangerous, but that's more of a temporary problem when the body fails to maintain potassium homeostatis. Having said that, methylation itself is more of an unknown and the dosages that @Freddd recommended were mega large, so I'm not at all surprised if that would produce side effects, as even a tiny bit of MB12 did all sorts of bizarre things for me.
     
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  10. Johnmac

    Johnmac Senior Member

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    B12 (first sublinguals, now transdermal) largely retired my chronic fatigue, in about a year.

    Further back, I had big thiol problems (the biggest I have ever heard of) after a year of mercury chelation, which were retired by a methylation protocol (the SMP). (BTW when I'm chelating heavy metals, my mantra is "Thiol problems are mercury problems.")

    I think I'm correct in saying that the only 2 B12 experts I know - one a scientist & the other Freddd - believe the SNP thing (especially MTHFR) is overblown.
     
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  11. ellecognito

    ellecognito

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    Thanks, everyone. Quick update. I've decided to make some slight modifications to my daily care. I already do mitochondrial support with a variety of supplements and have begun a low-thiol diet and added methyl b-12 to my routine (sublingual). The main foods I am avoiding which I consumed in excess before: Coffee, eggs, chocolate and cheese. I still allow one cup of coffee in the morning, then I switch to black tea. I used to drink TONS of coffee. Breakfast is now oatmeal.

    It's only been about a week, but I do seem so have a more consistent energy level and far less brain fog. This might just be due to the lack of coffee but since I'm getting plenty of caffeine in the tea, I tend to doubt it. It also could just be a good streak when I feel okay, which happens. Way too early to determine if these changes are actually helping, but I figure they are minor enough that they probably won't hurt. Even if there's nothing to the CBS upregulation, per se, perhaps there is still a problem with sulfur for some other reason. Or maybe it's just a placebo effect and it will soon fade.
     
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  12. Basilico

    Basilico Florida

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    Since you asked for personal experiences, I will say that both my husband and I have CBS and MTHFR SNPs. We both did the full Yasko protocol, including tons of testing, supplements, and a sulphur-free diet for 2 weeks. The end result was nothing. Neither of us felt any better, and many of our test results were polar opposite of what Yasko claimed they would be based on our SNPs. I hate to dissuade anyone from trying something that could potentially help them, but of all the things we've tried over the years, this was the thing I regret wasting money and time on the most. That said, I do think it's important to support the methylation cycle, since it is so critically important. I just don't think the sulphur/ammonia angle or many of her claims make any sense.

    I'm glad to hear that you've been feeling better lately - maybe there is something good in this protocol that works for you; it may not necessarily be what you assume it is, though. For example, if I remember correctly, coffee is a pretty strong methyl donor, so if you are an overmethylator, eliminating the coffee (and any other methyl donors) could possibly explain why you feel better. The methylation cycle is so complex, it's hard to know exactly what is going on.
     
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  13. ellecognito

    ellecognito

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    This is what I've been thinking too. I'm also noticing that some of the high-thiol foods have a strong affect (chocolate, dairy), some have little to no affect, and some foods that don't seem to be high thiol make me very tired and sick (coconut milk "ice cream" was awful). So there probably is some sort of methylation issue going on but I suspect the best I can do is tease out, one by one, the foods that I shouldn't have. Oddly enough, I can still have a cup or two of coffee in the morning without too much trouble, though cutting back has been pretty good for me.
     
  14. jnwp

    jnwp

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    Personally, I've had a bad experience with methylation supplements. I have a thread where I discuss this in more detail, but essentially, I'm significantly worse now than when I started methylation almost a year ago. I chalk this up primarily to carelessness and lack of professional supervision. I was mostly symptom free and just wanted an energy boost but caused a series of crashes and still don't feel right.

    I think I'm getting better, and I have a lot of moments, even whole days where I feel totally normal, which is a great sign. But it's very slow going as I try to correct whatever damage I caused and I will be seeking out professional help. Methylation is powerful stuff and while it clearly helps a lot of people I absolutely advise you to proceed with caution.
     
    Last edited: Feb 16, 2017
  15. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation


    I have trouble with sulfur foods, and added sulfites. I also appear to have a salicylate intolerance, and some of those foods you mentioned, namely chocolate and coconut, are very high in salicylates, as are many fruits and vegetables.

    I don't follow a low salicylate diet as it's too extreme, but just a lot lower than before. I was eating a ridiculous amount of salicylates to try and get better, but it just made me worse.

    The stuff I read about it said that sulfur and salicylates are both broken down by the same pathway in the liver. Not sure how accurate that is though.

    Edit: High histamine could be a factor too. Re coconut, dried coconut is heavily sulfited, not sure if coconut based ice cream would have sulfites added at some stage of processing or not.
     
    Last edited: Feb 16, 2017
  16. aquariusgirl

    aquariusgirl Senior Member

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  17. Johnmac

    Johnmac Senior Member

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    Thanks a lot for sharing this, and for being the coal mine canary for the rest of us. I've seen a few stories like this about Yasko.

    In case you're into B12, I found switching to the transdermal oils protocol way easier & also more effectual.

    (I'm presently embarking on the lectin avoidance diet: a few days in, signs are quite good, but early days.)
     
  18. ellecognito

    ellecognito

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    Many thanks to everyone for your continued participation in this discussion. Your input is very much appreciated!
     
  19. ellecognito

    ellecognito

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    Here's an update. Been doing fairly well, but this morning it feels like I'm in a major crash. What did I do differently? Yesterday I had 1) more coffee than usual 2) some dairy and 3) an egg. The weather has also been rainy, and than never helps.

    So today I'm back to being strict about my diet on these three things. We'll see if this crash is short-lived. I'm busy with work right now and I can't afford to be out of commission for very long.
     
  20. Basilico

    Basilico Florida

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    Which transdermal B12 oil do you use?
     

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