The 12th Invest in ME Research Conference June, 2017, Part 2
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Lysine works for me but acetyl l carnitine doesn't

Discussion in 'General Treatment' started by tango, Apr 20, 2016.

  1. tango

    tango Senior Member

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    I'm curious about this as I don't have herpes or cold sores and wondered if it's the lysine-to-arginine ratio doing something positive.

    I feel like I have more energy and less pain. I was taking 500 mg once and now am taking it 2x daily and wondering how high I can do.

    I've taken up to 3 mg a day of Alcar with B cofactors and nothing!!!

    So I guess what I'd like to know is why it might be working so I can look at making other changes that might help. I'm post menopause so I don't know if it does something with hormones???

    And maximum safe dose. The internet seems to range from 1 mg to 6 mg daily but as I don't have herpes I'm unsure. I've had EBV put believe it's inactive now
     
  2. tango

    tango Senior Member

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    As an addendum I had a Nutreval and my lysine was low and arginine borderline low.

    image.png
     
  3. JaimeS

    JaimeS Senior Member

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    I'm staring at the cysteine and taurine. I'm not one to rely overmuch on SNPs, but what's your CBS status? That would seem to be a pretty big priority, at least theoretically. Never mind C699T; do you have any 'hazardous' SNPs for that gene?

    Do you know what I'm referring to? There is a big thread on interpreting this sort of test here.

    -J
     
    Last edited: Apr 20, 2016
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  4. tango

    tango Senior Member

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    Hey Jaime thanks for the reply. Yep I have some MTHFR and CBS issues. Let me get check my reports. There are so many I get lost!
     
  5. tango

    tango Senior Member

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    Can you recommend the best report for looking at CBS. I seem to have several from Amy Yasko, livewello, generic genie. I'm not sure which is the best one. C699t is okay but I know I have other issues in CBS SNPS
     
  6. JaimeS

    JaimeS Senior Member

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    Genetic genie is fine.

    The C699T is nothing to worry about, as we've discussed in an insanely methodical manner, so even if you did have an issue there, I wouldn't sweat it.
     
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  7. tango

    tango Senior Member

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    I don't have everything genotyped but the only mutations from BHMT and CBS are these.
    BHMT-02 rs567754 (T) CT +/-
    BHMT-08 rs651852 (T) CT +/-

    rs2851391 CBS A13637G T TT +/+
     
  8. JaimeS

    JaimeS Senior Member

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    This is interesting: http://www.hindawi.com/journals/bmri/2014/560183/fig2/#m shows that when C699T and rs2851391 occur in conjunction, the C699T mutation is significant.

    I will add that to le blog.

    But it seems that, based off of what we spoke about above, that you have a CBS problem. I'm not sure I buy the low protein diet as a solution, but maybe a low sulfur diet?

    The issue with SNPs is that we understand so very little. It's better to go from phenomena, which is that your cysteine and taurine are high. We might go one slightly speculative step forward and say that CBT is upregulated because of these increases, but even that is already a best guess. When we get into what diet or treatment is right, I feel somewhat at sea.

    Maybe someone who feels more confident about this can speak on it more, but I don't know that there are really any sources on this that would be considered scientifically reputable...

    -J
     
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  9. tango

    tango Senior Member

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    Thanks. C699t was -/- but that's interesting and makes sense.

    My other issue is that I eat plenty of carbs but am burning fat. I have extremely high BHBA so I have no idea what sort of diet is best.

    I'm very encouraged by the impact lysine is having so at least that's something positive. I'm not sure if I need to worry about the arginine levels.
     
  10. tango

    tango Senior Member

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    I'm on methionine which I think is Sulfur but I also take SOD to help clear the pathways and probiotics and enzymes.
     
  11. Valentijn

    Valentijn Senior Member

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    Is there a basis for this being labeled as a risk factor?
    There are no problematic CBS upregulations. And if they did exist, they would result in elevated cystine, not lowered cystine.
    I only see rs2851391 being combined with MTHFR A1298C in that figure (graph l)?
     
  12. JaimeS

    JaimeS Senior Member

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    The graph linked shows minor increases in homocysteine with that SNP, when it is with rs1801133. I don't think it's a risk factor in and of itself, but it may be in combination with other SNPs.

    I might be mixing up cystine with cysteine. ;)

    rs1801133 is C699T; maybe we're not looking at the same graph. It shows that the combo of the two CBS mutations I mentioned earlier result in increased levels of homocysteine.

    It's graph 'm', not the first graph. :)

    Jaime
     
  13. Valentijn

    Valentijn Senior Member

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    rs1801133 is MTHFR C677T. CBS C699T is rs234706.

    You're right about it being (m) though. I thought the letters were at the top of their graphs, not the bottom :p
     
  14. tango

    tango Senior Member

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    My homocysteine levels are fine. Phew!

    I got the list of SNPs from http://metabolichealing.com/metabolic-gateways-cbs-gene-mutations-glutathione/ who may or may not be experts ;)

    My sulphur tolerance varies. Sometimes it makes me a screaming agitated mess, other times it's wonderful. At the time I did the test at the beginning of the year I wasn't that good with sulphur but after taking a lot of activated charcoal, SOD, vitamin C and molybdenum I now do okay on it (mostly).

    I'm also on some new soil based probiotics that are giving me instant energy as does the lysine which is a huge surprise to me and I'm very curious about it given that acetyl l carnitine does nothing for me
     

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