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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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  1. thegiantess

    thegiantess

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    I recently took the UAA and posted the results here, but didn't receive a response. I also posted some questions on the Yasko forum to the tune of... what do I do? And I'll tell ya, I have gotten some wild responses. Basically, the issue is that I have high Taurine (but not high ammonia) and also high-ish Anserine. Then there are like 6 markers that are low. But, homocysteine, which is why I originally tested is low.

    Anyhow, there are folks on Yaskos forum that are trying to convince me that I probably have a H.Pylori issue. Something about how people with CBS mutations (I am only hetero for the A360A) are more prone to H.Pylori and that elevated Taurine may be an indication of H.Pylori infection. I tried to assure them that I have had a stool tets which showed nothing of the sort, but of course they are firm in their stance and maintain that H.Pylori is hard to diagnose (which I don't refute, but think it is neither here nor there).

    I find it a little disconcerting that Yasko basically just sends you comments back on the tests to the tune of "Take these 27 supplements," that of course can all be purchased through her. Anyone had luck with a protocol of hers? I am just not convinced that I need to go through the first stage of "healing," that she prescribes for everyone, from kids with severe Autism to people with general methylation issues. I mean.. it is a laundry list of supplements that you are just throwing at theories.

    Here is my original post with my UAA results:

    Hey all,

    In my quest to get to the bottom of this madness I took the UAA and have gotten my results. Yasko put some comments in the margins, but mostly just recommended supplements. I am hoping someone can shed some light. Anyone taken it or can point me to a resource here. I searched for UAA in the forums, but it was a bit overwhelming to weed through all the posts.


    Here are the issues that stand out:

    HIGH:
    Taurine--Like off the charts high.
    Anserine--just regular high ;)

    LOW:
    Amonia
    Methionine
    Isoleucine
    Cysteine
    Histadine
    Aspartate
    Glutamine
    Alpha-Amino-N-butyrate

    Now, what I think is interesting is that there is a little chart off to the side called "Presumptive Needs," and Need for Folate/B12 is not marked as needed. Now that is exactly what I thought my problems were considering the symptoms and MTHFR markers! This has just confused me more.

    Additionally, most of the descriptions I read for the low and high readings all seem to point to a b6 issue, but B6 is also not marked as needed.

    Anyone have experience or knowledge of this test?
  2. sweetlily

    sweetlily

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    i'd be curious about your answer, too. thanks
  3. dbkita

    dbkita Senior Member

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    High urine taurine may mean taurine wasting as per high beta alanine affecting kidney function.
    That is why a plasma taurine is more indicative than a urine test regardless of what Dr Yasko et al claim.
  4. thegiantess

    thegiantess

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    Ok, and why would Taurine be wasting? I did read that when one with CBS mutations puts the methylation steps in place; starts taking active b12, folate, etc and the pathways get ignited that could cause elevated Taurine. I do have +/- for one of the CBS markers. This could be the case, but alas, the only solution I have found is to take a supp from Yasko called CBS RNA.
  5. caledonia

    caledonia

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    Out of the 3 or 4 people I know with CBS A360A, it doesn't seem to be as much of an issue as CBS C699T. They haven't had to do a CBS protocol before starting B12/folate.

    This is from the Nutreval Interpretation Guide (which tests some of the same markers):
    high taurine = taurine wasting in the urine or you're taking taurine supplementation. If you're not supplementing, I'm not sure what causes the wasting, or what it means. Consistent with high beta alanine.
    low methione = partial methylation block
    low histidine = folate deficiency = partial methylation block
    low ammonia = burning amino acids for fuel at a lower rate (could also mean vegetarian type diet, taking ammonia lowering supps, etc.)
    low isoleucine = if ammonia is low, this should be high, so this is a strange result
    low aspartate (aspartic acid) = consistent with a high rate of burning amino acids for fuel, another strange result
    low glutamine = if glutamate (glutamic acid) is also high, check for manganese deficiency
    low Alpha-Amino-N-butyrate (ANBA) = consistent with low glutamine
    dannybex likes this.
  6. dbkita

    dbkita Senior Member

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    High beta alanine either due to gut dysbiosis or muscle catabolism affects the renal tubules in the kidneys in such a way that taurine is not properly retained in the body and the body wastes taurine.
  7. thegiantess

    thegiantess

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    Huh. I called my functional med doctor to the table. This is all too much for me to sort out.. so we will see what he has to say and I will keep you posted. Thanks for all the ideas!
  8. dannybex

    dannybex Senior Member

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    Keep in mind that Yasko has changed her views on some things over the years, but doesn't really allow too many questions IMO. Also, Susan Owens will remind everyone that Yasko has no studies or references to back up her claims re the so-called CBS 'upregulation'. Owens also thinks she's dead wrong when it comes to sulfur and sulfate.
  9. caledonia

    caledonia

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    Question - I have to take large amounts of taurine otherwise I'll wake up often during the night with my heart pounding and racing. So when I did Nutreval I didn't stop taking it like they suggest. This, of course, made my taurine look very high.

    But I keep wondering why I do I need to take so much taurine. I guess that could answer it, because the test did show I have gut dysbiosis and muscle catabolism.

    In your opinion, even if I had stopped the supplementation, would my test result still be high?
  10. dbkita

    dbkita Senior Member

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    Very possibly.

    When i took my nutraeval my taurine was 4x above normal range witg high beta alanine. I only then started to supplement. But over time i came to realize taurine is very high when the body is in a high inflammatory state. I also did serum amino acid profile which is a better indicator for taurine when done fasting. That showed i was high normal so maybe both effects were going on. Long story short I controlled inflammation, shifted my diet, increased magnesium and stopped taking taurine (was elevating ammonia and sulfites) and voila fasting beta alanine dropped and taurine is low normal in both serum and urine and magnesium rbc is smack in the middle.
  11. aquariusgirl

    aquariusgirl Senior Member

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    Interesting. Don't think many PWCs have good rbc or intracellular Mag....presumably cos of low b6 , a knock on effect of low B2 (there may be other factors)... For some reason, lots of us have low B2...something to do with anemia of chronic disease.
  12. aquariusgirl

    aquariusgirl Senior Member

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    dan: what does susan say about sulphur? that we need it??
  13. dannybex

    dannybex Senior Member

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    Yes. Right now I can't find the post where she cites studies that back up her (Owens) claims, but here's a post on the forums, that resonated with me, where InvisibleJungle mentions one of the reasons we need sulfur:

    http://forums.phoenixrising.me/index.php?threads/test-strips-for-cbs-mutation.22194/#post-339771

    Okay...found a couple more. This one she talks about the importance of sulfate, which Yasko thinks should be avoided by most, especially those with the CBS mutation:

    http://www.speech-express.com/boards/viewtopic.php?t=491

    And I don't know if this will show up -- but here's a post from the 'trying low oxalates' group, where she discusses her differences with Yasko:

    http://health.groups.yahoo.com/group/Trying_Low_Oxalates/message/65221

    Quoting:

    "
    I had studied the sulfur biochemistry for about ten years pre-Yasko, and had
    spoken at DAN! conferences on the sulfur system twice before she came on the
    scene. I was disturbed about what she said about cutting back sulfur because of
    a SNP that doesn't even change the protein. What would the consequences be to
    someone with a depleted sulfur chemistry, as you find in autism? What the body
    will do in that case is self-catabolize to get at more sulfur, and the
    consequent loss of glutathione might indeed upregulate CBS all on its own!
    You don't want that to happen in children. I started seeing the markers for
    catabolism in amino acid tests that came back from those using her advice. Not
    good!

    My biggest objection always has been the way she lumped all the sulfur compounds
    together for she didn't seem to understand how they were different, nor how they
    were regulated in different ways from organ to organ, and she didn't seem to
    understand the differences in measuring things in blood and urine and the
    significance of these differences for interpretation of things like urinary
    ammonia. Her gaps in knowledge were obvious to those who had studied these
    areas for years and years, but they weren't obvious to others who were coming to
    her work with a sort of blank slate."
  14. thegiantess

    thegiantess

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    Huh, well, I spoke briefly to my functional med guy and he doesn't agree with Yasko's recs. He said that bc I show low in many aminos, and high really only in Taurine that it is likely a gut issue due to inflammation or stress. He recommended just taking an Amino supp and seeing if that works. He theorizes that bc my gut is out of whack (that is my ongoing, long standing issue) that I am not able to use a lot of the aminos that I am ingesting via food. So, supp. I might get back into taking BCAAs that I used to take pre-workout.

    As a note, my beta alanine, wasn't out of range. It was in the high range, but not above. the upper range is 20, mine came in at 18. So, I should be getting my new (and expensive) curcumin supplement today which I hopes addresses some of the inflammation. And I'll also start on the aminos.
  15. dbkita

    dbkita Senior Member

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    If your read my "Couple of Questions" thread you will see the Yasko 10x up regulation of CBS is a myth.

    She misinterpreted a research paper where they intentionally and artificially created a SAM-e independent upregulated CBS enzyme by introducing a stop codon that chopped off the entire 3' tail of the enzyme (some several hundred residues). That "artificial" enzyme is 10 x upregulated relative to normal WHEN there is no SAM-e present. In the presence of SAM-e the wild type and the artificial were essentially similar activity.

    Yasko et al made a gross error when they assumed any SNP in the regulatory "tail" would cause the same level of effect. It does not work like that, not even close! In fact the C677T homozygous mutation leads to a 10-15% increase in trans-sulfuration flux post methionine loading. While 10-15% may have biological impact, it does not equate at all to the bogus 10x upregulation that falsely terrorizes people on these boards. Just bad science pure and simple.

    The 10x claim always bothered the heck out of me because if true there is NOTHING you can do to correct a defect that severe, and in fact ... it does not exist. So paradox resolved ....
    Gestalt, Valentijn, Helen and 2 others like this.
  16. dbkita

    dbkita Senior Member

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    Excellent comment. Especially the last line. And the problem is those of us on these boards are all coming in with a "blank slate"
    dannybex likes this.
  17. dannybex

    dannybex Senior Member

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    Totally agree. I know some have been helped by her, and RIch and others were inspired by some of her work, but the more I read, the more upset/frustrated I become, as it looks like she's misinterpreted quite a few studies and references. Just read of another one last night where she completely misunderstood/misinterpreted something regarding oxalates and the kreb's cycle...

    sigh.
  18. caledonia

    caledonia

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    My beta alanine is 141! If I was supplementing with taurine, does that affect the beta-alanine result?
    I don't understand how inflammation fits into the picture? It causes gut issues? Does it cause muscle catabolism? I take plenty of magnesium, and my ammonia and sulfites are low (because I did the CBS protcol).


  19. caledonia

    caledonia

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    How did you control inflammation?
  20. dbkita

    dbkita Senior Member

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    Your body responds to systemic inflammation by shunting to production of taurine since while not strictly anti-inflammatory in the sense of reduced cytokine signaling, it counteracts amino acids that tend to rise when inflammation increases. Ironically taurine is put into energy drinks to reduce the neurological negative effects that would arise from all the sugar and caffeine! True story.

    Beta alanine is traditionally (assuming we are talking fasting result FMV here or fasting serum) due to either gut dysbiosis OR muscle catabolism. What is causing those is another matter. High beta alanine in turn can lead to taurine wasting. You need a serum value along with the urine to tell what is really going on there. The best way is to get a serum / plasma and a urine amino acid test from Labcorp or equivalent. Make sure fasting and the urine is done first or second morning void. That will tell you more about what is going on as a steady state and you have both readouts at same time. Doing it non-fasting can lead to fluctuations due to diet.

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