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Folate Receptor Antibodies

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by adreno, Apr 4, 2013.

  1. dbkita

    dbkita Senior Member

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    You certainly aren't irritating me. I just don't agree with some of the conclusions you have reached. Sorry.

    I seriously question that 30 mg is all perfectly fine for a normal person. What is the standard of judgment? Toxicity? That is a completely different concept than if it produces side effects like high neurotransmitter levels, inflammation (which is a given sorry), insomnia, but also improved energy, vitality, etc. Healthy people are warned about side effects of many b-vitamins. Give a person 3000 mg of pantothenic acid and see what happens. It is not toxic (well except you need extra biotin). But boy many "healthy" people will have trouble sleeping as their adrenals are amped. Again doesn't mean the vitamin is toxic. High levels of b6 can lead to neuropathy. But again it is remarkably non-toxic depending on your definition.

    I question the assumption being used here. If the logic is a person is healthy if they can take 30 mg with no effect, I am not sure what to say to that. In fact the simple counter-argument is see what the side effects are of SAMe for people who take 400 mg or more a day. Perfectly healthy people I should add.

    Besides what is a healthy normal person anyways? Some of the genes that are sighted have been in linkage disequilibrium for millenia with other genes and occur at high population frequencies. I know most people on these board like to ignore the population frequency arguments that I bring up because they want to some clear cut reason for their issues they can read off their 23andme test. But it is not that simple. There are tons of people walking around with MTHFR and other SNPs. Yet they are healthy. But by definition their reactions to methylfolate have to be different if we think we understand the enzymes and pathways at all. So how does that factor in?

    I have studied methylation some in the course of my computational research back in the 90s. I can't claim to be a world-class expert. Yes there is micro control. I tried to give you an analogy with glycine that you can read up about. The methylation controls are more complicated but as chemicals they are in equilibrium with the macro values of the substrates. Where that is exactly reached with a person is up for debate. Scientists routinely manipulate animals to study hypermethylation. And trust me the extreme version is very dehabilitating in those models. The idea that only the bad genes will be silenced is not correct. Not only not correct. Not possible. Nor is the modulation be uniform or high methylation = death which it obviously does not.

    In summary I don't agree with the healthy person = 30 mg with no effect. Toxic does not equal no effect. Toxicity is something different. Check out what happens to perfectly healthy people who take significant doses of SAMe. It is a perfect example since most people take SAMe for their joints where ostensibly other things are generally ok (as much as they can be with modern diets and lifestyle and lack of exercise I suppose).

    I side with Adreno here. There is no reason imo to take really high doses unless you are actually getting demonstrable benefit from it. At some point I wager the really high doses are more about CNS symptom relief and dealing with CNS problems via large diffusion gradients. Those of us without B12 deficiency or folate insufficiency induced CNS defects won't benefit from those doses. And in fact the pressure on neurotransmitters, inflammation, potassium and other systems will make things potentially very unstable. i.e. great one moment, feeling bad a few hours later.

    On the other hand I agree wholeheartedly that there is something very contradictory going when people react to "crumbs" as you put it, so violently. I don't know what to say there. Theoretically someone should not react really bad to 20 mcg of methylfolate but then not have problems eating meat. Couple of portions of animal flesh and they get the same amount of methylfolate. Also all the talk about folic and folinic acid. If all goes well those roads should lead to increased methyfolate production. Isn't that the point of the folate cycle modulo the purine / DNA synthesis?

    Anyways, best of luck as you work out your own protocol. Hope you are continuing to get stronger :)
     
  2. Xara

    Xara Senior Member

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    We could discuss this for hours, but to tell you the truth: basically I am a sceptic, a doubtful Thomas, especially when the internet is concerned.

    Since there's no methylation expert in my country that I know of that I can talk to, I have to turn to online sources.
    In this digital world I have difficulty distinguishing regular medicine from alternative medicine, I have difficulty figuring out whether results or theories presented are broadly accepted, whether they are still subject of debate or highly criticized, also whether there is just one voice and many parrots, or rather different voices that coincidentally produce the same sound.
    I have had some basics in chemistry, physics and biology, so it's not the texts themselves that are problematic. It's just that the internet is so big. It's just that I am so small and do not know enough.

    But as for lack of knowledge I am not alone.
    Anno 2013 methylation, genes and the CNS are still surrounded by question marks, lots of uncertainties. Every day research produces new results.
    So even when there's an easy answer I am thinking: surely it can't be that easy, when there's an occasional exclamation point: does that really apply to all cases? :)

    I need to see it to believe it.

    You say you side with adreno. Well, me being a woman I think you two men could need my company, with me three's a party, but alas:
    a cynic, an expert and a sceptic won't need long to create a suicidal atmosphere. ;)

    Thanks, dbkita. I hope so too. And I do hope you will be there when I'll be at my wit's end again. :)
    (I am being careful, I'm listening to my body with every step I take... and when laying down.)
    I also hope the recent bugs you got from your daughter have all left your body (and hers) and that you now can continue to improve your health.
    Thanks for all your words, written here and in other threads, and of course:
    good luck!

    BTW adreno extra sodium intake is helping me too. Please, carry on leading the way. ;)
     
  3. dbkita

    dbkita Senior Member

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    Sodium is very important. I cannot get by without my morning sea salt. Taking more sodium actually lowers my pulse.
     
  4. Xara

    Xara Senior Member

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    Yes, mine too. Last two days I got a bp of 90/50-55 and a pulse of 95, while sitting down, and increasing muscle weakness. After increasing sodium things improved. Meaning a bp of 95/60 and a pulse of 60-70, muscles returned to former weakness.
     
  5. adreno

    adreno 3% neanderthal

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    Xara, I don't see you as the sceptic here, sorry. I have not seen anyone with authority recommending massive doses of folate for anything. So you are taking the fringe viewpoint, not us.
     
  6. Xara

    Xara Senior Member

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    AFAIK in psychiatry dosages of 2 x 15 mg are prescribed, sometimes even higher, and I have been searching (among other things) what the side effects of such a dosage is.
    I personally do think 30 mg is rather high, but I think it all depends on where you stand. Some consider 800 mcg as a high, 800 mcg was definitely high for me when I started this methylation experiment.

    BTW I don't think scepticism has anything to do with the need of being backed up by authority.
    Wikipedia:
    "Skepticism or scepticism (see spelling differences) is generally any questioning attitude towards knowledge, facts, or opinions/beliefs stated as facts, or doubt regarding claims that are taken for granted elsewhere."
    Sorry, but I still consider myself the sceptic here. But fine when you look at me as being non-sceptical.
    You're putting my doubts aside as being just 'fringe'. I don't think such an action will lead to anything useful, be it in science, in medicine or here at Phoenixrising.
    If I have insulted you, or anybody else for that matter, by placing question marks, and not quoting anyone that you may consider to be an authority, I apologise that was not my intent. I was merely trying to understand how things (could) work based on things I bumped into while googling. But why should I try to understand the how when I believe in practice, regardless of any exclamation points or questions marks, everybody still has to figure out for themselves where their minimum, max and optimum lie. So pardon me for not taking part in this discussion about research and overmethylation any further.
     
  7. adreno

    adreno 3% neanderthal

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    Xara,

    Deplin is prescribed to treat AD resistant depression, by boosting neurotransmitter production. It is not intended to cure the depression, or anything else. So the effects of Deplin are the acute biochemical effects, not some kind of long term healing. And plenty of people are reporting adverse effects from it. As dbkita said, toxicity and adverse effects are two very different things.

    I still have not seen any evidence that constantly bathing your CNS in high doses of folate will lead to any kind of "healing", of any condition. Yet, you are subscribing to this idea, dismissing any warnings about hypermethylation, while simultaneously claiming to have the "skeptical" viewpoint in this discussion.

    Since there is no evidence to support your case, but there is (at least some) evidence to the contrary, I would say that you're taking the minority (or fringe) viewpoint here. Frankly, I don't even know where you got the idea that high dose folate will lead to a resolution of ME or similar conditions.
     
    Lotus97 and Asklipia like this.
  8. dbkita

    dbkita Senior Member

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    @ Xara:

    I guess my take would be if you are doing well at 3200 mcg or so then go for it! Stick with it.
    But don't think that you necessarily have to breakthrough and take 15+ mg per day since that is where the brass ring is.
    If you are getting good benefits at one level then give it time. Your body needs time to rebuild and heal. Time is always an consideration. You sound like you are doing so well, I just don't want to to see that get derailed in any way.
     
  9. Xara

    Xara Senior Member

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    Thanks, dbkita. I agree, no need to get to the max, where ever that personal max may be. I know I have said in one of my posts that I wanted to reach the sky, but I really don’t take it as a pissing contest. I just don’t know at this moment where my optimum is. Optimum, not max. That is something I want to find out, that’s what I am trying to do. Could well be the optimum is already behind me. So then I'll lower my intake of course.

    I took note of an earlier remark of yours to give it time. So I did not increase my intake today, and I doubt I’ll increase next Friday. I do think you’re right the body needs time to adjust, to rebuild and heal. Thanks for making that point.

    Thanks also for your kind, encouraging remarks in the last sentence. Much appreciated.

    Edit: changed the word 'paragraph' in 'sentence'.
     
  10. Xara

    Xara Senior Member

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    I see you have edited your post. Thanks for bringing in the nicer tone.

    Frankly I don’t quite understand what you want from me.

    I already made it clear that as for overdriving the methylation cycle I do not agree with you and dbkita, so yes, that makes me the minority when talking with you two.
    Adreno, you seem to have problems with me calling myself a sceptic, with me having doubts.
    And I am under the impression you are and have been looking for some kind of evidence from me.

    I don't understand why you think I am 'claiming to have the skeptical viewpoint'. I am not claiming anything - I AM sceptical.
    And THE sceptical viewpoint? When not embracing your views, but having doubts, does that mean I have a sceptical viewpoint? Yes. But THE sceptical viewpoint? You do me more credit than I deserve, sir.

    I have been talking about myself, my illness, B12 deficiency according to doctors here. My own situation, my own findings, my own personal approach, my own (il)logic.
    I said my search included side effects of methylfolate and B12, hypo/hypermethylation at microlevel and overmethylation being caused by other things than B12 and methylfolate. I pointed out I had not looked into production matters.
    I stated my search was incomplete, and it could well be my search missed vital information.

    Please, don't expect me to accept things to be true just because someone on the internet called adreno, dbkita, Yasko or Lynch, or “plenty of people”, said so.

    Hypermethylation, meaning overdriving the methylation cycle - body wide - I am still not convinced that to be true. I am allowed to have doubts, don't I? I explained my actions, my assumptions, my way of thinking, my precautions. Am I expected to write a dissertation just because you happen to have a different opinion? FWIW: I’m not into convincing anybody.

    I don’t know who’s right and who’s wrong. Apparently you do.
    I already explained I'm just combining info, guessing and hoping. I don’t know what doses will be needed, and as long as I’m feeling okay I don’t see any problems.
    About me supposedly dismissing warnings, thanks for your concern, but again: I am being careful.
    And I wish to see for myself.
    For I am not convinced that taking much, is harmful per se - disregarding ‘how much is much’. I am not convinced the opposite is true either: that it is safe, for everyone in every situation - including me. No. Again: everybody has to figure out for themselves where their minimum, maximum and optimum lie. Well, on second thoughts, maybe forget about the maximum.

    The only evidence I'll give you is when I have healed. I have been making improvements thus far and I am optimistic where the future is concerned.
    But surely that won’t convince you, because this is the internet. Anybody can tell anything here on the internet. Right? It would not convince me.

    The moment I google the term hyper- or hypomethylation I find articles about methylation taking place on microlevel, when googling Yasko I find articles containing the words pseudoscience and quackwatch. I am sure there are many more things to be found.

    I followed dbkita's suggestion to read up on SAM-e but after having found little that worried me I gave up, not because I thought I am right and you two are wrong - it never crossed my mind - but because I knew: a longer search and contradicting information to my earlier findings won't really change the way I handle this, I simply have to see for myself.
    I tried to explain that in my penultimate reply to dbkita.

    FYI I am sceptical about lots of things mentioned on these boards; leaky gut, adrenal fatigue, toxins/detox, to name just a few, I do not embrace them, nor does mainstream medicine - not in my country anyway. So I am not alone in my scepticism. Though I may be alone here at PhoenixRising.
    I know conventional medicine does not have all the answers, that many sick people are left untreated, and that there are people getting better thanks to alternative medicine, but that does not mean I’m easily convinced by a nice sounding explanation. And it does not mean I have to prove anything.

    I believe methylation may be helpful to me, without claiming to know all the ins and outs, all the facts, and all the evidence in favor or against it. I don’t think it’s necessary to know all of that. I don't think it's possible to know all of that.
    To me, and to some others, stories from people who got well are more appealing, stories like the ones from Red04 or Freddd.
    Because these are the stories I can verify, by simply following their footsteps. I can see for myself while listening carefully to my body with every step I take.
    When not succeeding it does not mean they were wrong. When succeeding it does not mean it’s right for everybody. It just means their approach worked for me as well.

    In case there are other sceptics out there, here are two links that might be helpful, but it does not mean you'll always know what’s what - I certainly don’t.
    http://www.rationalinquiry.org.uk/what-is-pseudoscience.php
    http://www.quackwatch.org/01QuackeryRelatedTopics/pseudo.html
     
  11. Victronix

    Victronix Senior Member

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    BTW, I emailed the professor who conducted the study to ask about the possibility of testing for the antibodies for people who might participate in his research. He replied:

    June would be great.
     
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  12. dbkita

    dbkita Senior Member

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    Xara:

    Not sure why you think leaky gut and adrenal fatigue are worthy of skepticism.

    An endocrinologist who does not understand secondary adrenal insufficiency is a joke in my eyes (and they exist in this country too). Especially since it can be verified with lab results that while not usually prescribed by the skeptics are real and true nonetheless. When confronted with the evidence these same doctors get flustered and throw their hands up and do little angry dances. I have met too many of those people in my professional career, so I know when someone like a doctor has no real basis for their "medical belief". I had this personally happen to me on several occasions. My brother has run into the same thing in both the US and Germany.

    Most endocrinologists deal with their bread and butter items of diabetes and sex hormone replacement. Get to adrenal dysfunction and electrolyte imbalances or dysautonomia and they are way outside their comfort zone. Most still push T4 only which is a really outmoded thinking. More and more doctors are turning to the thyroid "light" but the inertia is high. At least in this country there has been a shift over the last decade where doctors are not coming around to some of these ideas. It just took them a looooong time. And yes I went through ten years of doctors at distinguished locations who continually misdiagnosed me. And yes I have some bitterness since it meant I got MUCH worse before I got better. I will never get those years back and the physical pain I suffered was so bad that even the memory of it is hard to deal with sometimes.

    Leaky gut syndrome may have been over accorded certain value by the alternative health community, but modeling the gut membrane integrity and the microbiome health and its impact on increasing IgG and IgA antibody responses is established in the biochemical literature and is actually a hot area of research. How far reaching is its clinical impact? No one knows for sure. But of late the correlation between leaky gut and leaky BBB and implications for autoimmune disease is gaining traction amongst researchers. Note: I did not say doctors since most doctors have no clue about research.

    In my opinion those two things are very well established, more so than most of the other topics on these boards and have roots and foundations that pre-date the more more recent methylation hypotheses where there is still a lot of reliance on empirical observation and anecdotal evidence.

    I myself am pretty skeptical about certain toxins. Mercury has blamed for about everything bad in the health universe. I had alternative doctors pushing that on me for years when I had ZERO mercury toxicity and chelation did not help one iota. I fear nowadays some doctors push their heavy metals agenda on many people when the big picture is still being missed.

    I think what this board is great at trying to do is to fuse the empirical and anecdotal evidence with the theoretical understanding. I think the merger of the two is a very laudable goal. No one (and certainly not I) are disputing the anecdotal evidence. But anecdotal evidence while maybe more emotionally appealing and visceral is not a basis for science. And it certainly cannot by itself determine an optimal protocol across a wide distribution of patients. One thing I appreciate that Freddd has done is attempt to categorize these anecdotal testimonials and observations into layers of symptoms. You won't find that anywhere else on the Internet. It simply does not exist. But again the understanding needs to be there, there needs to be a rational basis and while some of that has already been established, there is methinks a long way to go.

    One last note, I am very surprised when you researched SAMe you did not see about the side effects of insomnia, anxiety, etc. for many people especially if not taken in the morning. In fact there are many testimonials to that effect? My point was to offer it up as a example of side effecst vs toxicity. Heck many b-vitamins (folate included) fit the same picture. The idea that water soluble B-vitamins can be take in huge amounts and not be toxic is mostly true (some exceptions) but the NOALEL is not as high as you might think. Just some food for thought.
     
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  13. adreno

    adreno 3% neanderthal

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    You are claiming to be a skeptic. But there is a discrepancy when you are only skeptical towards one view in a two-sided argument. If you truly were a skeptic, you would be skeptical towards both viewpoints.

    Believing in the idea, claim or anecdote that some users here present - that high doses of folate can bring about long term healing of ME and other neurological disorders - is not being skeptical. And it seems to be in direct contrast with the first sentence of yours that I quoted.

    Yes, I have a problem when you say you are the skeptical one here. This would imply that those of us who take the other viewpoint in this discusssion are not skeptical (or critical), but perhaps naive or gullible, basing our statements merely on "belief".

    The few trials of high folate (and B12) treatment of neurological disorders have shown far from impressive results. And how many have been healed of ME/CFS by using high dose B vitamins? Those of us who study neuroscience knows how complex neurological disorders are. They cannot be reduced to a nutritional deficiency.

    You are entitled to whatever belief or viewpoint you like. I have no problem with any claim whatsoever, as long as they are preceded by "I believe that...", or supported by credible sources. But believing in something is not being skeptical, no matter how much you try to lecture me on psesudoscience, rationality or whatever. To be skeptical means to question all knowledge, not just the parts you don't agree with, or believe in. In other words, belief and skepticism are oppositional.
     
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  14. Victronix

    Victronix Senior Member

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    How high is too high? Just wondering.
     
  15. adreno

    adreno 3% neanderthal

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    I don't think any arbitrary limit can be given. Optimally, you should base your dosage on tests (methylation panel). Barring that, you would have to go by symptoms. If you have had no adverse reactions after 3-4 days (minimum), you could try to increase your dose, and continue to do so until you get symptoms. I would not try to push through with negative reactions that doesn't quickly pass. I know others will disagree with me on this. Personally, I tried to push through negative symptoms for more than 6 months, and it didn't do a damn bit of good for me.
     
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  16. dbkita

    dbkita Senior Member

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    Ditto. Except for me it was stupidly going on 2 years.
     
  17. Linda

    Linda

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    I wonder if people with biochemistry knowledge could explain to me why, when Folate and MB12 are used in the treatment of depression, it actually causes depression in some people, including myself?

    I have on numerous occasions tried increasing both Folate and MB12 but can't seem to get past 200mcg Folate and 250mcg MB12. As soon as I raise these I suffer with major depression and terrible muscle pain but only in scalp and face.

    During 2years I have had several occasions where I've raised them slightly, had one really good day, stayed at that dose thinking I had hit the right amount only to crash. Have even tried to push through up to 7.2mg Folate only to develop intolerable depression and pain.

    I just wonder if for some people too many Methyl groups may cause more problems. But don't know the biochemistry behind it??

    Linda
     
  18. adreno

    adreno 3% neanderthal

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    Linda,

    My guess would be that the pain and depression is caused by increased inflammation. It seems to be a very common reaction.

    EDIT: you might also want to make sure that you get enough potassium, as increased methylation has a tendency to cause hypokalemia in many people.
     
  19. Linda

    Linda

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    Adreno

    Could you explain to me why increasing methylation would cause increased inflammation?

    Linda
     
  20. adreno

    adreno 3% neanderthal

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    I am not sure it causes inflammation, per se. But if you already have inflammation going on, it can exacerbate it. I don't know the exact mechanism, but it seems to drive the SNS, and activate the immune system. I also recently discovered that folate can feed gut pathogens.
     
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