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Social Anxiety, Panic - Methylation, Overmethylation, Histamine, Copper, Pyroluria

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Tigger, Aug 4, 2016.

  1. Tigger

    Tigger

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    Hi all,

    I've been messing around with methylation supports and related co-factors for more than a year now with good success. Most of my symptoms have improved dramatically. However, one large issue still remains. I often find that if even remotely stimulated, embarrassed, stressed, etc. in social situations, I turn bright red, panic and often begin sweating - essentially the epitome of fight or flight. At this point, I'm trying to figure out which of the following is the culprit:
    • Overmethylation (I have COMT/MAO-A mutations as well)
    • Copper/Mercury/heavy metal dumping
    • Histamine reaction
    • Something relating to Pyroluria (been tested, came back normal but I've read the test may not be accurate even when directions are followed - I've had great success with Zinc/P5P/B6 but they oddly simultaneously seem to make these issues worse which leads me to believe it may be Copper dumping).
    Any advice or experiences would be greatly appreciated. Thank you in advance.
     
  2. Hi. These things are so complicated to figure out.

    Just something that very surprisingly has helped me with both anxiety and skin dryness issues (eyes/eyelids and fingertips): dramatically increasing my dose of copper from what's in my multivitamin (I was getting maybe 1 mg per day while taking from 25-60 mg of zinc) to 10-14 mg per day currently.

    Fyi, I'm doing the "Freddd" version of a methylation protocol with very high doses currently of methyl-B12 (15-30 mg per day), adenosyl-B12 (8+ mg per day), l-methylfolate (45-75+ mg per day) and l-carnitine fumarate (around 1000 mg per day of carnitine). That seems to increase the body's need for other vitamins and minerals, especially potassium, magnesium, and copper. The last is a very new "find" by Freddd.

    In addition to the zinc above, I also take P5P 25-100 mg per day in addition to the 20 mg B6 in my multi- because I think I might have pyroluria as well but those seem like safe doses.

    I'm not particularly disciplined about changing one thing at a time - but I felt better within 30 minutes of a 4 mg dose of copper as Solaray copper chelate (2 capsules). Apparently it's pretty safe to go up to 10 mg per day, especially if it's only a trial.

    No idea if it would help with your issues, but there it is if you're looking for things to try out. And there's always the placebo effect! ;-)

    By the way, I don't personally believe in over-methylation so I'm not one to comment on that except that some people recommend niacin. That's known as "nature's valium" and it mops up methyl-groups, but some people think that taking too much of it stops methylation, which isn't so good. The most effective form for anxiety, in my experience, was unfortunately the kind that flushes though. But the flush (at least for me) came and went pretty quickly after even a 1000 mg dose. (You probably want to stay under 50-100 mg in a day if you don't want to stop methylation, according to what I've read. Many people on here probably disagree with that though - or at least disagree that it's never good to stop or slow down methylation). Lately NADH 20 mg sublingual has also helped, but mainly with anxiety that I attribute to the methylation protocol itself - so hopefully the "help" isn't just stopping methylation=healing. Who knows...? But I just use it once a day. :)
     
  3. Oh! And large doses of potassium (several GRAMS per day) also helps, but K doing anything for anxiety is also something that only started since I started the methylation protocol.
     
  4. Tigger

    Tigger

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    Thanks for the response.

    It's interesting and a good sign I suppose that copper had that effect on you given the constant barrage of copper toxicity information that seems to go hand in hand with methylation issues. I've actually found a similar response but I'm worried about taking too much and causing damage. I guess as long as your zinc/copper ratio is in check then it shouldn't be a problem.

    And, wow, that is an impressive amount of folate/b12.

    Do you have similar issues to those I mentioned? If so, do you find that the increased zinc/copper and p5p/b6 to help? I'm feeling hopeful with what is essentially the Pyroluria protocol (with copper support as well) but every time I start the regimen (even at very low doses), the social anxiety/panic returns despite me having much more confidence and desire to actually socialize. I suppose I should just be patient and take very low does zinc and p5p for weeks before increasing too quickly. I'm certainly like you in terms of being fairly gung-ho and changing dosages and supps too frequently.
     
  5. Yes, I had also read mostly bad things about too much copper but just decided to take the plunge and re-evaluate if I get toxicity symptoms. So far so good about 2 weeks in to the copper (and zinc but I seem to get a much better effect with both - having tried zinc by itself earlier with maybe half the result).

    Supposedly damage from copper actually requires a rather high exposure over a longer period of time, so since I know there's not a copper problem with the filtered water I drink and I don't work with the stuff, I should be okay (and I take the extra zinc). I can't really get any tests for it until the next time I visit the U.S. but I plan to ask my "integrative/holistic" Hortorf Group doctor next time I'm there (I'm from the U.S. but I live in a Scandinavian country, with rather antiquated ideas about nutrition and a *very* "evidence-based", i.e. cost-cutting focused IMO, health system...).

    I would say I do have similar issues, with the exception that fortunately I don't often get embarrased and turn red. But I have both chronic generalized- and social anxiety (for some reason taking phone calls in Danish scares the bejezus out of me, so my boss does that for me!) and I tend to get the sweating and way "out of proportion" reactions to even small things.

    I should probably ask for a test for pyroluria when I'm in the U.S. I always think I've "tried everything" but then something like that comes up where I read up to 10% of the population might have it. I DO seem notice a good effect from zinc supplementation - just got better for me with the copper. It's difficult to say with B6 because I took high-dose B-complex vitamins plus an adrenal supplement that had it PLUS a supplement that had P5P for years...but tried extra zinc only sporadically. So I only noticed the effect from the zinc, but I may well need both together. (And I take GLA, because omega 6's are supposed to be an issue).

    But it's all "just in case" and based on symptoms.

    I haven't looked at the histamine issue much either, mostly because I don't seem to have any allergies (although I get itchy eyes in the morning the first few days on copper for some reason). I have just about every annoying health problem under the sun EXCEPT, for some reason, allergies and headaches (except very mild ones occasionally) - and I have awesome teeth (no fillings despite years of dry mouth and not always being the best about flossing, etc. and I'm 38).

    So not sure what you can take from my experiences, but it's always nice to share with other gung-ho people so I feel better about myself for doing that. ;-) I bet people with anxiety tend to be less disciplined about things like "low and slow", because the anxiety just makes things so unpleasant and you really, REALLY want to get away from it asap, and doing nothing doesn't seem like it will change anything fast enough.

    Disclaimer, I also take antidepressants and Klonopin (which is long-lasting) for sleep. But I cut the klonopin dose in half about a week ago and so far I haven't even had insomnia from doing that.. Also been able to cut my dose of tramadol by 1/3. I was on all that stuff long before I ever heard of methylation or thought about copper.

    About the methylation supps dosage: yeah, I decided to really go "all-in" until I stop getting "start-up" reactions.

    They were terrible after I (according to Freddd's theory and seems to fit my experience) flushed all the active B-12s out of my system by drinking a lot of protein water loaded with whey isolate on a trip because I thought it would be a good thing for a road trip that wouldn't trigger my IBS-D (that issue is also MUCH better with the higher folate dose I've been taking). Anyway, glutathione apparently binds easily with B-12 into something that gets rapidly excreted through the urine, and because so MUCH glutathione is there suddenly when you supplement with it or its pre-cursors - compared to the less than 1 mg of B-12 actually circulating at any given time - you can rapidly give yourself severe B-12 deficiency and essentially have to start all over with methylation.

    But thankfully, at least for me, Freddd's theories seem spot-on. I had a massively increased need for potassium to avoid tachycardia and little random muscle twitches everywhere with essentially the same doses I had been on (15 mg per day of folate and maybe 5-15 mg of the active B-12's) and I seemed to need a lot more folate to avoid folate deficiency symptoms - but you also need B-12 to hold onto the folate - so I just increased everything until I felt better.

    This all took place starting around June 18th this year. I stopped drinking the protein water a couple days after that and have been dealing with the start-up and apparent folate and B-12 deficiencies ever since. But first it very gradually got better (with lots of ups and downs) and this week I suddenly have been feeling MUCH better and able to reduce dosages somewhat, finally!

    I guess the point is that methylation issues can have a huge effect on well-being, and for some of us, nothing you think you know seems to be right. :p Also, I'm only heterozygous (one recessive gene) for the less-studied but thought-to-be-milder form of the two folate genes that can go wrong, so that also fits with Freddd's observation that genes and lab tests don't seem particularly reliable as a guide to whether his methods will help somebody.

    Sorry for going off on a tangent there but I suspect somehow everything's related. I'm just so relieved I'm having some almost-good days now (more like good several-hour periods, but I'll take it!). For me, that's HUGE (no, that is not an endorsement of Donald Trump ;)). :-D

    By the way, high dose (a few grams at a time, so measured in teaspoons or even up to 2 tablespoons) of inositol is EXTREMELY effective at tamping down anxiety attacks for me - and the effect seems to last a few hours so maybe it could work in social situations? Unfortunately, I found out that's ALSO a guaranteed quick several trips to the bathroom in MY case. (Coffee is exactly the same though and most people do just fine with it). But luckily I found out this out while freaking out before my first colonoscopy (turned out to be incredibly reassuring), so inositol kind of *ahem* helped me in more ways than one.. :p

    And now I end bordering on TMI. lol
     
  6. Tigger

    Tigger

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    No worries. The more info the better.

    I've actually messed around with inositol for a bit starting at low doses and certainly had positive effects but it also made me sweat profusely due to cholinergic pathway activation I suppose and made me very agitated and pissed off. However, it certainly did help with social anxiety, relaxation and fuller enjoyment of life but its cons didn't seem worth it.

    As far as histamine goes, I would highly recommend searching for its psychological effects given that it's a powerful neurotransmitter. A few years ago, I was blown away by the effects of limiting high histamine foods. Within a matter of days, I slept better, my general and social anxiety went down significantly, I could think more clearly, had less brain fog, pain seemed less intense, asthmatic issues lessened and much more. After that trial period, I began looking more into methylation after understanding that it's one of the main pathways that is responsible for deactivating/processing histamine. Many resources indicate avoiding folate/b12 with high histamine but obviously to stimulate methylation and therefore destroy histamine, you need folate and b12 as the backbones of supporting the methylation process as a whole. With all that being said, I'm just trying to determine if this socially-induced panic, sweating, flushing, etc. will pass in time with continued folate, b12 and cofactor support or if I'm currently doing something wrong. Ironically, some of the supplements that are supposed to assist in destroying histamine, even in low doses, increase this sweaty, social panic. For that reason, I was wondering if it is now simply overmethylation. For example, TMG, even in small doses (<250 mg) drives me through the roof with sweaty, red, social panic. According to Freddd, ""TMG supplies about 30 times as many donatable methyl groups mg per mg as methylb12. So, one might think that 0.033mg of TMG has the same methylating power as 1mg of methylb12. If a person takes 500mg of TMG then they are taking as many methyl groups as if they took 15,000 mg (15 grams, not mcg) of methylb12." Based on this information, I moved to the assumption that I may have just started overmethylating. Once again, I have two COMT mutations so I'm not sure if this is simply an overabundance of methyl groups causing excitotoxicity and panic.

    Also, how are you getting you folate? Through Deplin or the 1 mg Solgar tabs? I can't imagine taking the better part of a bottle of 1 mg tabs everyday is too much fun or convenient.
     
  7. Hi again.

    Nope - even I wouldn't take THAT many tablets. ;)

    When I'm in the U.S., I stock up on capsules with 15 mg of methylfolate from "20.5 mg L-5-Methyltetrahydrofolate (5-MTHF), calcium salt", from a site that doesn't seem to advertise to consumers (seems more geared to doctors, but you can order as an individual from them no problem) called methylpro.com (owned by Metabolic Maintenance, but products with that brand contain both the good and the bad isomer of methylfolate).

    The product is called "Extrafolate-S" I believe it's actually a purer version of Deplin. An Italian company called Gnosis broke the patent by manufacturing it in a different way or something - plus it's ONLY that, the capsule, and 250 mg of glycine as filler. (Glycine also helps me with anxiety but in higher doses than that, sublingually).

    You can buy #90 x 15 mg for USD $78.00 w/free shipping. I believe that's competitive compared to Solgar and certainly is cheaper than the same amount of Deplin. They also have lower dosage capsules (and the quatrefolic form, in doses up to 15 mg but it's more expensive and I once tested sensitive to crab and Quatrefolic is a glucosamine [crab shell] salt, so since the other is cheaper.. I've tried both and they both seem to work the same).

    I take part of a capsule or sometimes a whole one at a time sublingually. I kind of tilt my head back or lie in bed and put it between my check and upper gums, on the side that doesn't have a B12 dissolving in it. Then it takes a long time to absorb and I don't have to worry about what else I take at the same time. I used to take it on an empty stomach and it worked that way too. I can't tell if I get more out of the same dose sublingually, to be honest.

    I'll certainly keep that in mind about histamine if I stop getting better before I'm completely well! In fact, I'll ask my doctor what she thinks about it next time I have a $275 appointment. :p

    One thing about the info on "folate" and "B12" and methylation: almost all of the info likely (although I don't know this, in every single case..) comes from studies on folic acid and cyanocobalamin (or hydroxycobalamin and/or folinic acid at best). Freddd thinks that's why people don't react to high enough doses of the "Deadlock Quartet" supplements in the ways predicted: those are "junk forms not found in nature" and everything else works differently when you're properly methylating without having parts of the cycle blocked by folic acid and bad B12s (he dislikes hydroxycobalamin as much as cyanocobalamin. Seems to think most people should skip folinic as well since he sees no real downside to methylfolate).

    As I wrote in another place, I hope if @Freddd (haven't figured out how people link yet) reads my understanding of his understanding someday he doesn't mind somebody who's never communicated directly with him paraphrasing without permission.. :)

    The scariest thing (but worth it if it's the only way to get better!) about his way of doing it is not knowing that the answer to anything is basically always to increase your dose -- then decrease later to see if you don't need that much anymore. My anxiety about going higher certainly held me back in the beginning.

    Of course, you may have different genes than I do that make you react differently. I certainly have different genes than Freddd, who has at least 3 bad polymorphisms relating to methylation, but that doesn't mean everybody will react the same way to his methods. On the other hand, he has some pretty good theoretical nuggets buried in various posts that convinced me that the real danger is from especially folic acid and cyanocobalamin, and the damage that's been doing to most of us all our lives by displacing the good, active forms.

    If everything as I understand it is correct, then
    1. if you react to the supplements, you need them
    2. you probably can't take too much l-methylfolate or methylcobalamin. if you don't need them, you'll excrete them unchanged
    But it's really important to make sure you're ready for the consequences if you dedide to ramp it up. You really do need to have a LOT of potassium and probably other minerals on hand, make sure you're taking ALL the recommended baseline supplements (unless you have really good specific reasons not to), and be ready to try the "potential show-stoppers" alone and in combinations if progress stalls.

    Personally, TMG first did nothing for me. Now it seems to calm everything down when I'm having too much "start up" (650 mg of TMG plus a gram or even 1.5 sometimes of potassium dissolved in water plus 2 mg copper plus a little magnesium slows my heart rate to manageable. If I add some adenosylcobalamin, that often seems to reduce anxiety. Freddd likes boron now too, by the way).

    So again not sure how much you can learn from me, because of the unfortunate (in this context) fact that we're all different.

    Would be interesting to know if I had COMT and other mutations besides A1298C or whatever it is. Did you do the 23andme thing? How much does that cost nowadays?

    Matt
     
  8. Tigger

    Tigger

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    Any input from @Freddd would be much appreciated.

    I did use 23andme and Genetic Genie. It was incredibly informational and interesting to get the results. Of course, they are just tendencies but certainly help point you in the right direction. I paid $100 a few years ago but I think the price has since gone up to $200. Still worth it in my opinion.

    Also, what are the main symptoms/issues that you've dealt with that are hopefully being resolved via methylation support/high dose folate/b12's? How intense and how long did start-up last for you? I worked my way up over a matter of months to 24 mg folate, 1 g LCF, 20 mg mb12, 8.6 mg ab12 and supports but found myself getting very agitated, brain fog, hyper-sensitive responses, etc. I wasn't sure at this point if it was still paradoxical folate deficiency or I just didn't need that much.
     
  9. Vanessa_M

    Vanessa_M

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    British Columbia
    Hi there,
    I'm with you on this methylation tangent. I have overmethylation with copper overload and have recently started with zinc, but will be making a protocol with my healthcare provider soon and starting other nutrients. I've heard that taking too much zinc can absolutely cause a copper dump (so can manganese, and a few other nutrients) and worsen anxiety and other nervous system symptoms - so it is probably best to back down a bit if you notice that is happening. I started really slowly and gradually with the zinc to avoid this kind of problem.

    It also sounds like social situations are a big stress trigger for you - have you considered that this could be a social anxiety type of response? I can relate to this, at least in the sense of feeling stressed, tense, vigilant or anxious in social situations - but I'm not sure it has anything to do with methylation issues. I think I just have some childhood trauma/adverse events in my life that were tied to hostile social situations. So my brain seems to interpret all social situations as inherently threatening. Just an idea anyway.
     
  10. Hi @Vanessa,

    I think you're spot-on about the zinc-copper balance. Sorry you have copper overload. On the other side, high zinc dosages bind with something in the intestines and reduce absorption of copper. Interestingly the opposite is not the case: high copper intake does not reduce absorption of zinc. I read just this morning on the Linus Pauling website that even 50 mg per day over a few weeks can cause copper deficiencies in many people.

    Reading between the lines, it seems like most people can take more zinc, IF they take more copper - so you actually absorb enough of the copper. I now take 75 mg of zinc per day, so that may be why I need 10 mg or more much to correct the apparent deficiency.

    I also believe copper toxicity is real but rare, unless you either have a genetic condition that would have been obvious at a young age, or you get a really huge amount of it from corroded copper pipes carrying your drinking water or that kind of thing.

    But I also think if you don't get enough zinc in your diet, that makes it more likely that copper supplementation can result in toxicity ... and we're all different in millions of ways.

    I started with the zinc first, which is partly why I think I need a relatively high dose of copper now. The other reason is Fredd's "refeeding syndrome": when the body starts repairing itself, it needs more than normal of EVERYTHING. Copper (and potassium) just happened to be the most important ones for me now (although I think those two in particular, and one person mentioned phosphorus, are often the ones that need to be addressed the most if you're taking Freddd's other recommended basics).

    ....

    Right now I personally no longer believe in over-methylation. I think what people assume is over-methylation is "start-up" or "donut hole or paradoxically-induced deficiency" symptoms, or that as-yet unexplained anxiety many people get when starting l-carnitine. And there are ways to get through all of that - at least for many.

    But that in no way means I think I'm sure that people who believe in over-methylation are wrong. There's just so much we don't really know! There are good arguments on both sides.


    @Tigger: I think I did the link to a member thing!

    Thanks for "paging" Freddd. I'm hoping he is interested in my very positive experience with copper... and doesn't tell me I've misunderstood his words and my suggestions will kill people or something ;-P

    I'm just so grateful I found his advice a couple years ago and finally got my "aha!" moment of understanding recently.

    Very grateful he shared about his copper deficiency too, so I get to keep my teeth :)

    It would be emotionally difficult for me to have so many people look up to me and then have something like that happen... but this is all so new, mistakes are inevitable. And nobody's better at learning from them than he is, IMO. @Freddd, people love you! :)

    I think this was addressed to Tigger, but I'll add that that's exactly my experience: I believe my brain was "wired" to be hyper-vigilant because first my mom went through an incredibly stressful series of events while pregnant with me, including somebody trying to run her over with his car because she found out he was a con-man and was going to turn him into the police! (Instead he managed to run off with the evidence, change his name, and leave town with all the money from their business partnership. She was 25 when this happened, and also going to be a single mom with no support from her parents for having the child she wanted (me) but they didn't think was a good idea. That was only at the time of course, they loved me when they saw me :) - the point is just the stress/anxiety/depression and how we know now that it epigenetically affects the fetus's brain and body in a really bad way). Then I had a 5 or so year period starting around age 6 when I was THE kid everybody bullied, even the teachers sometimes. I had a lot of behavioral problems, but it's amazing how much that changed me from a pretty happy kid into somebody who 20 years later still has to remind himself of things like "many people really do like you!".

    I think we can work on these things but I'm not sure we can "cure" them 100% (it's one thing cognitive behavioral therapy is quite helpful with, even done on your own from a good self-help book. I DO realize it's often used in terrible ways against people with chronic illnesses because so many psychologists don't believe there is a physical cause for CFS, fibromyalgia, etc. but that's a flaw in execution, not a flaw in the concept when used for the real psychological challenges we face, IMO)..

    Thanks! Good to know. :)

    Well, as usual it's complicated because of the "try everything at once" approach. So I may have been doing it wrong the first couple years, when I got some gains (mostly better lab results) but I kept seeming to get start up again and again. Now I'm pretty sure that was because I had whey protein sometimes and N-Acetyl-Cysteine in a supplement I took for my eyes ... every day (thought a small amount was OK but apparently it's really not).

    I just didn't realize how easy it is for 260 mg of that stuff to wash the tiny amount of B-12 out of my serum.

    Also, knowing about copper earlier and really starting with as few "non-protocol" things as I could and then re-adding them one at a time would have probably sped things up.

    So these are some of the symptoms that have improved:
    • high MCV (102. Lab range is 80-100 but Freddd says the range used to go to 92 and they raised it to 100 because we're all getting sicker and doctors were ignoring the "high" results because half of their patients were getting them! Last time I checked it was down to 93. That was before I discovered the copper - and also before I drank a bunch of protein water and messed everything up.
    • also high MCH (mean hemoglobin concentration) 35 (range: 27-33)
    Those had been high for some time. I also had low total protein, which has also gotten into the normal range. But I don't know if I can credit methylation or just eating more protein.
    • My platelet counts were also always just barely in the normal range for years (184 & 200) and now they seem to be creeping up (250 last time). I think that's related to the low blood volume many of us have, and it and the higher protein could be the result of the methylation helping the body make enough cells.

    • Low-normal white blood cells (hoping this will improve next time I go in) and low natural killer cell activity (too expensive to test again soon)

    • very low ferritin (7 or 12) despite normal other iron measures that kept coming back down if I stopped supplementing with a lot of iron, even though I'm a male and don't have bleeding issues (that last has been checked, twice. The inability to increase ferritin may very well be related to the copper deficiency - so not directly helped by methylation.. Plus I don't even know if it's gone up yet. I'm just assuming it will, based on what I've read about Cu and Fe)
    Subjective random stuff:
    • Just yesterday my ex- told me he thought my arms looked more muscular. I haven't been able to work out yet, but I can carry a heavy suitcase for short distances now without being sore and sometimes almost flu-like for days afterwards (PEM, I guess we call it). I'm thinking: do I dare start doing my own vacuuming again??? Haha.
    • And I believe I've lost some water weight. My face doesn't look as puffy and fat as it did. People who wouldn't tell a white lie just to be nice have confirmed. :)

    • I seem to have regained my ability to drink (even a lot) of alcohol again - confirmed last night(!). Woo-hoo! ;)

    The biggest symptoms were:
    • fatigue: I'm not perfect but it's seems to be improving
    • fibromyalgia: now the painkillers actually WORK, and I've even reduced my dose a bit.
    • diarrhea: recently gotten WAY better, if I just take enough methyl-folate (always with some B-12 to make sure my cells can hold onto it) it's better (by far!) than Imodium. I had been desperate and would take 16 at a time and still have trouble. One day after taking a lot of folate and the B-12s, overnight I got constipated (like, first time EVER) - so I increased potassium a lot & magnesium a little until I found the balance.
    • anxiety got way better almost like magic after a couple days of 10 mg of copper and continuing enough potassium. Either the neurochemical issues are getting better by themselves, or at least my meds are working better.
    • mild depression seems to be lifting

    One tip that might work for others: I did get the dreaded extra anxiety when I started the l-carnitine fumarate. It was bad. But I read a couple posts from people who "pushed through it" and decided to try that, and after 2-3 days (which admittedly felt awful to live through) I couldn't tell that I had taken it anymore.

    Freddd says you don't really notice it once you're getting enough and over the anxiety some have - it's just if you stop taking it, then you'll notice the anxiety if you start it again (and old low-ATP symptoms might gradually come back if you stop getting enough). I think you don't notice it physically after a dose because it mainly helps with muscle, and things that change relatively slowly.

    About START-UP (the scary part):

    I can tell you that while I still take a lot, I'm definitely, finally needing significantly less potassium. Like I've gone from at least 10 grams a day to 4-5. It happened suddenly. I just stopped getting the muscle twitches and rapid heart rate - which are my personal tell-tale signs - and then can skip a dose above my baseline amount and be fine.

    Also, suddenly I can tolerate CoQ10 without it creating a massive need for potassium, which it did for a long time.

    TIMING: If we assume I "reset" and started from zero when I drank a lot of glutathione pre-cursors for several days, and that flushed the B12 out of my serum (which then means the cells can't hold onto the folate) and gave me damage from severe deficiencies all over again, then I can pinpoint the beginning of start-up to approximately June 20th.

    I may just be in a lull, but it's really nice. So for me, it seems to have taken 6-7 weeks. :)

    If I were in your place, my intuition would be that either you do need even more potassium and folate* (for now) - or in any case, that reducing them might save some money but wouldn't get you closer to the goalpost - or that you need to find out what the "next most-limiting factor" is, like it turned out to be copper for me, and maybe lecithin for both the choline and the phosphorus in it, and maybe boron and other trace minerals.

    (*Based on another post, I think Vanessa might disagree, but I wonder if the idea that folate is bad for under-methylators comes from studying *folic acid* or (even folinic acid), which do indeed gunk-up methylation in many people...It's the same problem if you're told "too much B12 can damage your nerves". Well WHICH B12? Cyanocobalamin sure can! And that's the one they tested... I don't think methyl- or adenosyl- will do that).

    It's always a good idea to make sure you're really doing the whole thing correctly. It's pretty well-thought out IMHO. And I'm pretty sure that finding out how much you need of "the basics" is just as important as getting enough of the Deadlock Quartet supplements - because otherwise your body will be missing the fuel it needs to finish the repairs you've started, and things will kind of stall out in a frustrating way until you get the right parts for the engine.

    I also have a hypothesis that most of us need higher than normal amounts of lots of things in the beginning, but as long as we avoid folic acid and cyanocobalamin - and glutathione precursors - eventually we'll be able to reduce a lot of these supports if we eat a healthy diet. A big exception is the people who can't tolerate veggie folates. Then I guess they could eat liver (yuck) but otherwise they need the methylfolate for life.

    We also might just have so much built up damage from a lifetime of exposure to cyano-B12 and folic acid that we'll always need SOME support from supplements. Just not as much as during "start-up" and "re-feeding syndrome" (maybe two ways of saying the same thing?).

    Have you thought about trying one day of 10 mg of copper? I apologize in advance if you keel over dead, but it might be the only way you'll ever find out if that's what's missing right now because it seems to also have the paradoxical deficiency problem when you start correcting with low doses.. Freddd's serum copper went DOWN on 10-15 mg per day. But I think his deficiency was worse due to long-term high dose zinc supplementation.

    Or you could just try 4 mg at one time as I did and see if that makes you feel better. But 10 mg in divided doses for a few days would be the best test. Try to not change too much else at the same time (unless it directly conflicts with Freddd's general advice).

    Of course I'm not a doctor, so please take everything I write as "that's what Matt would do".



    Whew, that was long!
     
  11. Vanessa_M

    Vanessa_M

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    Hi @matt3n
    Why have you come to the conclusion that you don't think overmethylation exists - any good sources to share on this? I'm not sure if you are talking about people who have induced it by taking too much of certain supplements? I've never taken l-carnatine and don't know what you mean by 'start-up' symptoms. Dr. William Walsh of the Walsh Research Institute and Dr. Albert Mensah are my main source of information on this, Walsh's research has found that 8% of the population is overmethylated and this was based on testing tens of thousands of people. I've had one test done to essentially prove it, but one other pending - SAMe/SAH ratio. Are you familiar with Walsh's work on this? He tends to make the connection between overmethylation and high copper levels. I've also done some research on PubMed and found numerous studies which found high copper/low zinc levs in patients with Rheumatoid arthritis (which I have), but no explanation yet on why this is. One ex here: http://www.ncbi.nlm.nih.gov/pubmed/25869414

    One other interesting article on copper overload written by a psychiatrist. She has seen a lot of good results in her clinical practice, I've corresponded with her. She thinks it is actually quite common, especially in women and gives her reasons for this. http://www.courtneysnydermd.com/blog/copper-overload-too-much-of-a-good-thing3 When I say copper toxicity - maybe it is more appropriate to just say 'high copper' or 'copper overload', as I suppose the word toxicity probably implies acute poisoning maybe? Which I agree, would probably be rare.
     
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  12. Vanessa_M

    Vanessa_M

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    @matt3n

    Also - I'm not necessarily a fan of CBT either, because it does seem to imply on some level that peoples experiences are not 'real; they just need to manage themselves better. What does interest me though for recovery from trauma/old unhelpful programs is this thing called limbic system retraining. A close friend of mine has CFS (and plenty of trauma issues), and she is following a program right now. I'm going to see how that goes for her, but she has been in contact with a lot of people who have had dramatic recovery from that approach. Essentially is is about resetting the limbic system, which when in overdrive can cause severe fatigue, burnout, hypersensitivity to everything etc...

    Who is this Fred person that everyone keeps referencing? Is he a doctor/scientist of some kind?
     
  13. Sushi

    Sushi Senior Member Albuquerque

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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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  15. Vanessa_M

    Vanessa_M

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    Yes, that's exactly it - it was Annie Hopper's Program - the second link. My friend has been trying that program, but there is one other program offered here in my local area with a different women. She does a slightly different variant on limbic retraining, with the daily exercises being much shorter, more manageable and more focused on feeling rather than thinking and visualizations. The woman who designed it was severely debilitated by fatigue and chemical sensitivities for a long time, but now completely recovered and in healing/teaching role. I'll have to get the name.
     
  16. Hi @Vanessa -

    Interesting. My mom became a therapist for mainly low-income clients (it's a "Christian" practice but she doesn't push religion on people) late in life and I believe she uses limbic system retraining with some of her patients. I will have to ask.

    She also has had a lot of miraculous successes with something called "Brainspotting", which frankly sounds like quackery if you look it up, but she really believes in it and if it helps patients I guess who cares if it's placebo?...

    Incidentally, she also has many patients with chronic illnesses (PWCs) like mine that medicine just doesn't know how to deal with, or even what to call sometimes.

    I have made sure she understands - at least intellectually - what it's really like so she doesn't just make people feel bad about themselves.

    In her experience, different therapies work with different people. Males (in general!) seem more likely to prefer cognitive therapy techniques, because CBT is oriented toward solving specific problems in a rational way, and doesn't really require much in the way of sharing feelings and delving into the past. Female patients (also not universally of course) prefer more talk-/emotion-oriented approaches, in her experience. I'm about as feminist as a guy can be, so please don't take what I just wrote to mean that I have stereotypes about gender roles or anything. :)

    I can see how an over-activated limbic system could really contribute to crashing and then keeping people sick. We just have to be careful not to let people people think our issues are "just psychological". But I'm sure that's been said thousands of times in these forums already..

    I can understand why people would think CBT implies people's experiences are not "real" -- especially the way it's usually used in studies with PWCs. In my experience though, at the core it's really "tips to avoid making yourself feel miserable (emotionally)" that they should really teach explicitely in school starting in Kindergarten.

    If you read a list of 10 most common "cognitive distortions", it all just seems like common sense. And it is!

    The problem is that depression and stress and anxiety make it easier for people to fall into certain mental "traps", so it's more a form of psychological training so you can get out of the trap that's making you feel unnecessarily bad, and avoid falling into them in the first place.

    What I like most about it is that (A) you can do it yourself with the (admittedly a bit dense, and lacking graphics, but otherwise accessible enough) book "Feeling Good" by David D. Burns and (B) a good therapist can cure most patients' (non physically-caused - other than neurotransmitters, of course) depression in 6 sessions or less.

    I think it's a good complement to a lot of other things (when the therapist doesn't think you're a hypochondriac or believe your physically-caused symptoms are exclusively a result of your depression, rather than the other way around). But if used for coping with a real condition - well, it's really helped me.

    In case it's of interest or helps someone reading this in the future, here's a list of some thinking distortions CBT deals with:

    1. Filtering - you might focus on a negative detail, ignoring all the positive things that also happened. Example: the waiter being rude to you destroys your whole evening, when it really could have been quite nice except for that brief incident.

    2. Polarized Thinking (or “Black and White” Thinking). Example: believing that you or other people have to be perfect - or else they're a total failure. Like how an A- is jokingly referred to as "the Asian F" but some people really feel that way.

    3. Overgeneralization. One bad thing happens, and from that we conclude that it will happen over and over again.

    4. Jumping to Conclusions (or "mind-reading")
    Example: My boss's email seems critical and abrupt so I assume that means he's impatient with me and thinks I'm incompetent - maybe even planning to fire me! Later I find out he was just actually just busy and he even says something nice, but I spent all day worrying because I "read his mind" wrong and didn't check it out.

    Or I'm so convinced that something's going to turn out badly, I assume it is fact ("I'd better get ready to apply for unemployment and find a smaller apartment..." in the example above).

    5. Catastrophizing or "magnification" (or "minimization"): "oh no, my mom didn't email me! She should have been home from her Europe-trip by now. What if she's dead?!". Actually, maybe she did email me but at my other account that I don't check as often. Or she was just so tired she forgot and apologized effusively in the morning.

    Or "that younger person at the bar just stopped talking to me and walked away mid-sentence when I mentioned my age. I'm so old, I'll NEVER find a partner! No one will ever find me attractive again.".

    6. Personalization. You think things are more about you than they really are, usually in a bad way. Example: with no evidence, you assume someone's bad mood is your fault somehow, without bothering to check out that assumption. Or believing some negative external event is somehow your own fault: "my son has fibromyalgia. It's my fault for not serving nutritious enough food and not pushing him to play sports when he was growing up!".

    7. Control Fallacies. You see yourself as a victim of fate (external control) or you take responsibility for other people's actions or feelings ("they seem upset by this weather. I should have warned them it rains a lot in Denmark. Now I've ruined their vacation, and they only get two weeks a year...").

    8. Fallacy of Fairness. Example: you bake someone a cake on their birthday. You're upset when they don't even send a card on your birthday. You simmer with anger for days, which is pointless because the other people aren't even aware of their "sin". (And maybe they suffer from the same fallacy: they were on a diet when you brought them that cake, and they think you should have remembered that. So they're actually doing you a favor by not acknowledging your birthday instead of getting you something you can't enjoy, like a kitty when they know you're allergic! lol).

    9. Blaming others for your own feelings and reactions.

    10. Should statements - people who break our many moral "rules" make us angry or sad. Or we feel bad about ourselves for not living up to our unrealistically high expectations.

    11. Emotional Reasoning you feel inadequate and assume that feeling means you are an inadequate person, rather than the result of distorted thinking.

    12. Labeling - Example: calling yourself an "inadequate person" above. Or labeling someone else a "jerk" based on one thing they did.

    man my browser is slow!

    Fred was very sick and almost died, but turned it around with what people refer to as the "Freddd protocol". He sells nothing and has written no books that I know of (=unbiased). He used to be a systems analyst at an innovative kind of health insurance plan-experiment way back, and has worked a lot with the chemistry of "vitamin B-12" specifically (I don't remember the details but I was impressed).

    He generally prefers higher doses of methylcobalamin, adenosylcobalamin, and methylfolate and recommends adding l-carnitine fumarate (and has a list of basic vitamins and minerals he recommends, as well as co-factors to try).

    He also strongly feels that cyanocobalamin should be avoided - probably by everyone - and hydroxycobalamin is nearly as bad. He has convincing reasons IMO for these things but I don't have time to get too much into it just now.

    If interested, look for the thread called "B-12: The Hidden Story". Some of his understanding has evolved over the years, and it's sprinkled around here and there in the forums, but some people have made good summaries (somewhere..). :)

    He's part of why I don't believe over-methylation is really a "thing" (actually I don't even know if he believes in it or not. And yet various things he's written led me to that conclusion, at least for now).

    I'd like to know, bio-chemically, what over-methylation IS (I might just be ignorant here. I'll have to look up the sam-e/SAH relationship you mentioned another place.).

    "Start-up" is short-hand for the nasty symptoms people get when they start methylating properly again, and also when they begin making enough ATP again. The symptoms are almost identical to what people describe as over-methylation, and can be pretty reliably controlled if a person gets enough other things their body needs now that it can repair itself (potassium and/or more methylfolate seem to be the answer 90% of the time. But at a certain point, the body seems to need more copper as well). We don't know for sure why people get the symptoms, but the hypothesis is that the body starts making new cells, and since PWCs have low stores of potassium, methylfolate, and the active B12s in their serum - that can result pretty quickly in a deficiency situation (often happens on the 3rd day and can last a long time unless people take enough potassium, folate, etc.)

    Gotta go for now! I did see you replied to another post.
     
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  17. Vanessa_M

    Vanessa_M

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    @matt3n
    Thanks for this thoughtful reply and explanation of what CBT is about. That is helpful to hear that this can be a strategy that can target some of the other baggage (unhelpful thoughts, beliefs etc...) that comes with being chronically sick and can just keep a person stuck, and so it does make sense to see it in the way you have described. I hadn't considered that - I guess I was just reacting to this idea that on its own, it would be like a magic bullet solution to CFS or other disorders (like they are psychological problems only).

    When you said the following: "at the core it's really "tips to avoid making yourself feel miserable (emotionally)" that they should really teach explicitely in school starting in Kindergarten. If you read a list of 10 most common "cognitive distortions", it all just seems like common sense. And it is! The problem is that depression and stress and anxiety make it easier for people to fall into certain mental "traps", so it's more a form of psychological training so you can get out of the trap that's making you feel unnecessarily bad, and avoid falling into them in the first place."

    This makes a lot of sense to me, if CBT were framed this way in some of studies I wouldn't have a problem with it at all.
     
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  18. Vanessa_M

    Vanessa_M

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    @matt3n And thanks for explaining who Fred is, that was helpful! I was having a hard time understanding what other people were talking about. It seems like a lot of people have had the genetic testing done, and it just leads to a crazy amount of confusion - I'm not going that route

    The source of info that I go to for methylation is Dr. William Walsh, he talks about methylation extensively in the context of mental health and is the founder of his own Research Institute that has one of the largest biochemical databases in the world. The list of supplements for overmethylators is completely different - people who already have to many methyl groups in their system (and would be prone to anxiety, insomnia, fatigue and even psychosis), will get worse with things like inositol, methionine, SAMe, any methyl donors (incl. methyl B's). He also takes the view that folates can be incredibly dangerous for people who are undermethylated as these individual already tend to have a build up of unusable folates in their system. He even calls methylfolate 'the suicide molecule' (I have actually seen one other person on this forum report suicidal feelings after trying a bunch of different folates). In the video, discussion of folates occurs at 1:28:50 min mark approximately

    I will have a look at his arguments against overmethylation - though, I would be a lot more inclined to believe the information that comes from someone who has done extensive biochemical testing on large human populations.

    Here is one link to a video, where he explains overmethylation and undermethylation in detail and his research findings. There are a few other short videos by him on YouTube which discuss overmethylation - and a few on the Mensah Medical website.

     
    Last edited: Aug 7, 2016
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  19. Tigger

    Tigger

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    I certainly do have a social anxiety response but it fluctuates wildly depending on what I take. At best, I have been able to more or less comfortably give presentations and, at worst, I can't even make it through a simple conversation without extreme panic. I have been experimenting for years now. At this point, I'm just trying to determine what the main cause may be. I've experienced so much success from a seemingly endless list of issues via Freddd's protocol that it would be a shame to throw all that away in the face of social anxiety/panic. I have had much success with non-folate/non-b12 treatments in relation to social anxiety/panic but none of that has come close to resolving the countless other issues I have.
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    There are many issues re CBT but it's not even necessary to consider CBT as anything bad--the central issue and this is important is that it is not a replacement for real medical therapy that works to eliminate the physical cause of the illness.

    By talking about CBT as if it is anything more than a tool for some people to help them cope --that would be an implicit statement that one is thinking of the illness in psychological terms. CBT does not in any way heal people of physical illness any more than it can heal cancer.

    Then there's the issue that people respond well (and differently by gender perhaps) not because each therapy has at it's core some healing power but because in both cases people are being listened to and are being supported which could be quite a difference from their home/outside environment.

    I have found IMO that from those who believe in the therapies there is a tendency toward inflating reports of just how much benefit the therapy has afforded and there is generally no follow up to see if the results whatever they are have been sustained. CBT uses the cloak of scientific veracity without in fact employing science.
     
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