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CBS Upregulation Confusion (Yasko Contradiction, Cysteine, Heavy Metals, etc)

Discussion in 'Genetic Testing and SNPs' started by AimingHigh, Sep 24, 2014.

  1. AimingHigh

    AimingHigh

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    Quick back story......

    I am currently being treated for heavy metals toxicity. I have tested slightly elevated for lead and mercury on a provoked urinary heavy metals test/challenge. My first doc thought the levels weren't significant enough to be concerned about, so we spent two years battling Lyme disease with many various Rx antibiotics and herbals. Nothing I took caused a reaction (other than obvious gastro issues from the Rx abx).

    Since then, I have seen another doctor on his recommendation. This doctor says my heavy metals lab results are very relevant, especially when considering my genomic deficits (CBS C699T +/-, BHMT 1 +/+, BHMT 8 +/+, etc.) . His theory is that my body does not detoxify efficiently, and therefore my system will not spill large amounts of heavy metals on a provocation test.

    The current doc has me on a low thiol/sulfur diet along with DMSA, ALA, and Zeolite all taken twice per day. This is along with many supporting supplements. I am also doing infrared saunas three times per week. Other than some skin breakouts, I am not seeing a whole lot of signs of improvement.

    OK - On to my concern. I don't know whether I should be restricting thiols/sulfur or consuming it abundantly. Most of he detox gurus recommend a lot of sulfur to help in glutathione generation, etc. However, Andy Culter and others have stated that excess cysteine reacts negatively with free mercury and causes worse symptoms. This is all very confusing, and I am a very involved patient, but there seem to be a lot of contradictions.

    Does an up-regulated CBS pathway lead to high or low cysteine status? There is no longer blood test for cysteine, so a low-thiol/sulfur diet is used to test for sensitivity. After a week, if you feel better, then thiol groups are an issue for you. However, after two months, I do not feel a lot different (not much better or worse... maybe slightly better, but not significantly).

    Bottom line - How can I tell if I need more or less cysteine based upon the info above. Yasko's site states the following:

    Taurine
    Why will the CBS mutation tend to produce higher levels of taurine? One of the roles of the transsulfuration pathway is to generate both glutathione and taurine. If the cell detects a low level of cysteine, it will favor glutathione synthesis. High levels of cysteine lead to taurine synthesis. With a CBS upregulation, more cysteine is generated, shunting the pathway toward taurine formation. Some animal studies indicate that the CBS C699T represents a forty-fold increase in enzyme activity. The CBS A360A is a less active upregulation. It’s not surprising that in those with the CBS mutation it’s common to see low levels of homocysteine, cysteine, or cystathionine, due to the rapid conversion to taurine.

    I have highly elevated urinary taurine levels and borderline high blood taurine levels. So, based on all of this can I determine if I have high or low cysteine, and therefore determine the need for thiol avoidance or increased need? Yasko sounds contradictory when she says: "High levels of cysteine lead to taurine synthesis. With a CBS upregulation, more cysteine is generated, shunting the pathway toward taurine formation." And then she ends the paragraph with: "in those with the CBS mutation it’s common to see low levels of homocysteine, cysteine, or cystathionine, due to the rapid conversion to taurine."

    So which is it?? Does a CBS/BHMT mutation lead to high Cysteine or low Cysteine or is CBS activity not related to Cysteine levels at all?

    Thanks in advance for you help with this.

    Ryan
     
  2. Cheesus

    Cheesus Senior Member

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    Ryan, you've pretty much hit the nail on the head. The problem is that this stuff is not sufficiently researched and so we're left working with theory alone. 'One doctor says this, whereas another says this.' I'm not confident that anyone here can give you a definitive answer that will put this to rest for you. Perhaps just trust in the experience of the doctor you have, and focus on raising glutathione later once you have done enough rounds of chelation?

    Apologies that I can't comment on the more detailed elements of your post. Good luck!
     
  3. Valentijn

    Valentijn Senior Member

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    @AimingHigh - Yasko can't cite to any published research to support her claims about CBS, because it all contradicts her. CBS +/+ is a very mild and beneficial upregulation.
     
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  4. AimingHigh

    AimingHigh

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    @Cheesus - Thanks for the response. I would like to chelate and worry about the Glutathione later, but it seems that it's kind of a package deal. Glutathione is produced to detoxify heavy metals, etc, so if it's absent, my fear is the DMSA, etc. is wasted.

    @Valentijn - I respect your opinion, but what else would you say is driving up my urinary and plasma Taurine along with elevated Ammonia (52 uMOL/L), elevated ALT (Alanine Transaminase) 63 U/L, and elevated DHEA-S even though DHEA is right in the middle of ref range. Also, Manganese (whole blood) is borderline low at 8 mcg/L even though I am supplementing with 30mg per day. Molybdenum (plasma) is 2.4 mcg/L, but MACL doesn't list a reference range. It just says that the value is usually less than 3.

    My point is that all of these lab values appear to indicate a problem with transulferation. If CBS / BHMT pathway is not a problem, then why are these lab values off, and why do I feel like I am always in a fog amongst other issues?

    Thanks for your input.

    Ryan
     
  5. Cheesus

    Cheesus Senior Member

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    I have a limited knowledge of this and you seem to be really quite clued up. However, it was my belief that it specifically is not a package deal - that you do not need glutathione to effectively use chelators.

    Isn't Cutler arguing that whilst you're provoking movement of heavy metals with DMSA/ALA, you specifically do not want single thiol binding molecules floating about? His FLDC protocol is designed to get the chelators binding to the mercury and to keep levels high enough for it to be excreted before entering a rest period. The sulphurous detox pathway gets in the way of this because (supposedly) the single thiol does not sufficiently bind to the mercury and the result is you're constantly picking it up and redepositing it elsewhere. It does not interact with the chelation agent.

    Or am I missing something here?
     
  6. AimingHigh

    AimingHigh

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    @Cheesus - Sounds like you're more up to speed than you think. :) Specifically which single thiols are problematic (that we can control)? Not sure which belong in that group... I would assume Cysteine, since AC specifically mentions thiol avoidance if you have high Cysteine. However, I've been on a low thiol diet (while taking DMSA and ALA, per doctor) for a couple of months with no major changes. The doc understands that DMSA and ALA will add sulfur, but along with avoiding thiols in my diet, he felt this to be best. Thanks, Ryan
     
  7. Critterina

    Critterina Senior Member

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    If I remember correctly, (and that's a big IF), B6 deficiency and low BH4 can help cause high taurine levels. And for me, taking 100 mg B6 didn't do it, but taking 50 mg P5P (active form of B6) did. And of course, taking methylfolate helped raise my BH4.

    I don't know about the other things that you say are high, because they weren't high for me. My lab results sometime have results that are only specified by an upper limit, like <3. If that's the case, then anything below 3 is in range.
     
  8. Cheesus

    Cheesus Senior Member

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    Hang on... so your doctor doesn't think you'll have much coming up on a provocation test because your body isn't detoxifying properly, but he doesn't want you getting your detox pathways moving and instead recommends a protocol with the very thing which was incapable of removing much of the metal?

    That sounds a bit off to me! Especially since you've seen no change. Are you sure you have a metal problem?
     
  9. Sidereal

    Sidereal Senior Member

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    I agree it's very frustrating to read all this conflicting information. It would appear that one of the main challenges of having a chronic illness is figuring out who is a quack and who is worth paying attention to. This is not at all easy since the worst most mendacious quacks tend to be doctors whom we are trained to respect/obey by the society.

    Fortunately you can ignore anything Yasko says about CBS (or anything else really) since, as Valentijn said, there is no evidence to support it. There's one less thing to worry about. For what it's worth, I am CBS C699T +/+ and wasted six months of my life chasing down that rabbit hole.

    IMO, among the "detox gurus", the only person who understands the issues is Dr Cutler. According to his writings, taking DMSA & ALA twice a day (or on any other random schedule that does not observe the half-life of these chelators) is a harmful protocol since all it does is temporarily pick up some mercury and redistribute/dump it somewhere else when the blood levels of the chelators drop. To prevent this, he recommends taking them every three hours around the clock (including nighttime dosing; this is critically important and cannot be worked around) for few days ("a round"), followed by a break of a few days during which you only take supportive treatments like C, E, Zn, Mg etc. This way you get redistribution only once a week instead of several times a day. He also warns against doing challenge tests (check out dmpsbackfire.com for horror stories) or FIR saunas. Of course you also must make sure you've removed any acute exposures such as amalgams from your mouth before you start chelating otherwise you risk permanent worsening of symptoms.

    If you are serious about chelation, I would recommend studying his work very carefully because doing random things in this instance (which is what most doctors/gurus do) may not just be a waste of time/money but can actually make you sicker.

    As for glutathione (a single thiol) being low in ME/CFS and basically every other chronic illness, it being low in states of heavy metal toxicity could actually be a protective measure against worse things happening like death. There are lots of stories of severe adverse reactions to IV glutathione. Here's just one such thread:

    http://forums.phoenixrising.me/index.php?threads/has-anyone-seen-dr-kent-holtorf.31025/

    Taking stuff orally that raises glutathione (e.g., methylation supps or NAC) or eating a diet high in free thiols is of course nowhere near as dangerous as getting injected with it but can still cause unpleasant symptoms.

    Also, the two years of abx treatment for Lyme disease which you don't have has likely decimated your gut microbiome which is of critical importance to health. We have a good thread here on PR discussing the issues related to gut health but I warn you it's 100 pages long and it's not light reading.

    By the way, you mention supplementing 30 mg of manganese a day. Personally, I would be nervous about supplementing one tenth of that amount on a daily basis.

    Good luck with whatever you decide to do.
     
  10. ebethc

    ebethc Senior Member

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    @Sidereal - what's wrong w manganese? I just started taking it because it's a co-factor for SOD (which I need help with..)

    thanks
     
  11. adreno

    adreno PR activist

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    So many of Yasko's assertions have been proven wrong that at this point I do no longer consider her a reliable source of information. I would disregard anything Yasko has to say about CBS or otherwise. Unless you can find scientifically valid research involving those SNPs, forget it. She is in the business of selling supplements more than anything else.
     
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  12. Sidereal

    Sidereal Senior Member

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    Nothing wrong with manganese. You just wanna be careful that you're not taking a big dose because it can build up and cause toxicity.
     
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  13. adreno

    adreno PR activist

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  14. brenda

    brenda Senior Member

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    I find it rather annoying how Amy Yasko is trashed so often on this forum . I know that she goes against the beliefs of a lot of doctors and some researchers, but Rich vanK had a lot of respect for her and you only have to spend some time reading on her forum, that you will see that many many parents of autistic kids have been helped a great deal by her, some of them her own, and most of them with lab results to show it. She will be wrong on certain points but no-one is right all of the time, and no-one else is helping autistics like Yasko.
     
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  15. Valentijn

    Valentijn Senior Member

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    It's not about "beliefs". It's about the science. Evidence from many scientific studies directly contradicts her claims, and other studies which she seems to use to support her claims do nothing of the sort. If she's going to contradict science, she needs more science, not a bigger fanclub.
     
  16. Sidereal

    Sidereal Senior Member

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    I don't doubt that some people have benefitted from Yasko's protocol but that does not "prove" the validity of her hypotheses. Some of those supplements could be helping for reasons unrelated to their purported role in her protocol.
     
    Last edited: Sep 26, 2014
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  17. Gondwanaland

    Gondwanaland Senior Member

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    I think Cutler's protocol is to take them every 3 hours? And I don't think Cutler recommends zeolite.

    izzy
     
  18. CTR

    CTR

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    Hi Valentijn,

    Could you advice a site instead of Yasko? I will have 23me results soon and I
    am expecting CBS issues and more with a 4 years ASD child. What would be a good
    site to interprete 23me? I understand I can interprete the results on Yasko's site
    but it could give a colored picture with maybe unnecessary supplements.

    Thanks


     
  19. Valentijn

    Valentijn Senior Member

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    Promethease seems to do a decent job. I'd stay away from Nutrahacker.

    There's also a downloadable program at https://sourceforge.net/projects/analyzemygenes/ which can pull out very rare SNPs, to create a shorter list to look into. We've got some extra databases at https://sourceforge.net/projects/analyzemygenes/files/Databases/ (remarks.zip and ten_percent.zip) which can make it even easier, by automatically labeling the results with gene names, mutations, and pathogenic status.

    CBS issues are pretty much a myth. The only pathogenic CBS SNPs are serious down-regulations. There's no indication that the mild up-regulations singled out by Yasko are ever capable of causing problems, and at least one is actually mildly beneficial.
     
  20. CTR

    CTR

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    Hi Valentijn

    Thanks I will use these. Do you know a good doctor in the Netherlands that could
    help us? ( I am also in the Netherlands)

    Thanks

     

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