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HELP: Has anyone been able to resolve their CBS upregulation problems?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by dannybex, Oct 30, 2011.

  1. rydra_wong

    rydra_wong Guest

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    Whatever goes out on my methyl cycle w/o hormones (or with insecticides that intercept the hormones) - maybe CBS -
    I wanted to say that the strategy of extra TMG and adrenal glandular to deal with it is not very robust. DHEA is normally
    robust (except that insecticides anyway can take it out) for I can get 12 hours free of neurological symptoms out of it
    and I can manage something like that.

    W/O hormones on my side, what happens is the methyl cycle and adrenal assists I can manage to tame the symptoms with
    only last a few hours and as they wane it is not a sudden drop so you can go into a black hole forgetting the time,
    and forget to take the next supplement so then you wind up really hosed. It is a very unstable strategy since the first
    symptoms are neurological from which its had to step outside yourself and "wake yourself up" so to speak to go get the
    next dose.

    I can only list some symptoms of the methyl cycle w/o hormones with these genes as I just forget these things until a few
    minutes later I experience another and another. But they could be described as wired and tired I suppose since I
    normally sleep like a log but suddenly am having to take melatonin and I would say number 1 symptom is tension,
    but also skin can't stand to be touched, muscles feel "pulled" w/o exercise, anxiety, depression, worse than
    ever about losing all sense of time. So please do not think that what I listed a few screens ago as taking care of these
    symptoms is a good suggestion -- it's not a stable solution, despite that it works.

    The stable solution for me is hormone replacement, specifically DHEA (although I am pursuing estrogen replacement and currently am on a small startup dose. No one has commented on the use of hormones to fix these genetic issues. Has anyone else tried this? It works like magic for me. I doubt it would be able to work without a sound nutritional protocol behind it because it can't make up for deficiencies, but I think it helps regulate one or more of the genes in my makeup, specifically CBS and possibly others associated with BH4 (since it banishes those symptoms also).

    This is the main thing I wanted to clue some of you in about because women have cycling hormones and so they have a lifetime of chances to compare life with and without hormones and see their effect. But men's just wane later in life and they usually don;t realise the role their hormones play in the health conditions that arise. For instance, when I first got high blood pressure, it was measureable to occur only during low estrogen (PMS). Then my estrogen got lower and it occurred all the time. These tension-that-won't-go-away and can't sleep symptoms have been part of EVERY low hormone (PMS) period of my life. So it was easy for me to see that hormones would help. Maybe not so easy for some of you.

    I don't know why no one has even asked about this? Has anyone else tried it? I did ask Fredd about it and he said he also takes pregnenolone 100mg and DHEA 25mg.
     
  2. rydra_wong

    rydra_wong Guest

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  3. rydra_wong

    rydra_wong Guest

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    Possibly of interest to CBSers:

    Although genertic mutations of CBS Yasko tests for are supposed to UPregulate CBS, I have two of them and my homocysteine was high. If you wan to look at my protocol, it is here: http://forums.phoenixrising.me/showthread.php?14501-Wrong-Diagnosis-Site-Fredd-s-Protocol/page3 and here: http://forums.phoenixrising.me/showthread.php?14501-Wrong-Diagnosis-Site-Fredd-s-Protocol/page5

    Of interest to you might be in the latter link the fact that I become short of breath w/o at least 50mg P5P/day.
    Despite whatever Yasko says P5P, used by this enzyme, seems to be very critical for me. P5P is required to make hemoglobin.
    I don't know if you might find something similar. I just thought I'd pass it on.

    Rydra
     
  4. rydra_wong

    rydra_wong Guest

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    Also of interest. This is from Rich's recent study pub. in the Tonwsend letter:
    http://aboutmecfs.org.violet.arvixe.com/Trt/TrtMethylStudy09.pdf

    The data in Figure 4 support Yaskos claim that the CBS C699T polymorphism significantly
    drains metabolites from the methylation cycle when there is a partial block of methionine
    synthase. However, during the treatment, though there continued to be differences in the values
    of SAM +SAH between those who had the polymorphism and those who did not, even those
    who were homozygous for this polymorphism attained levels of SAM + SAH averaging near the
    reference value after 6 months of treatment, without compensatory treatment for the presence of
    this polymorphism. We did not measure sulfite or ammonia in this study, and we have not
    compared the symptomatic responses to treatment of those with the polymorphism to those
    without.
     
  5. rydra_wong

    rydra_wong Guest

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    Here is indeed a case in whch you may find you are low in homocysteine (and thus in SAMe) and it is due to COPPER defciency:
    (which is more easily correctable possibly)

    I have recently discovered that the enzyme METHIONINE SYNTHASE contains copper, so if you are copper deficient, this will lower your SAM, and your homocysteine:
    http://jn.nutrition.org/content/137/6/1370.full[/url]

    There are several other articles here:
    (Please note that most studies on copper are not useful as measures of copper status (although they may be useful in detecting inflammation) because the only valid ways to measure system copper are either view diet or liver biopsy since copper will be mobilized in the serum for all kinds of things, including any sort of inflammation, etc (it is an acute phase reactant):

    in rats: low copper diet reduces methionine synthase activity 21%: http://www.sciencedirect.com/science...04416599000434
    in men: high copper diet lowers homocysteine: http://www.sciencedirect.com/science...99900704001509

    Rydra

    (There have been papers calling for the development of an accurate way to measure systemic copper but science has not developed one yet. I used hair analysis to measure mine, but that is controvercial as well)
     
  6. dannybex

    dannybex Senior Member

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    Thanks for this Rydra...I'll have to go check out the thread. Looks like another bit of info that both supporst and kind of conflicts with Yasko's conclusions.
     
  7. dannybex

    dannybex Senior Member

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    Hi Bianca,

    Just re-reading your post, and was wondering if you could explain the lactate/pyruvate ratio situation. ???

    I'm not sure what testing you used, but on my NutrEval test from August 2010 (already!), it says that my lactate 'is measured to be low", and "low levels are usually a result of reduced amounts of its precursor, pyruvic acid."

    I had a plasma cysteine test run this past summer/fall (took forEVER) and wish I had done a test for sulfate at the same time. I'm just assuming that mine's low, because of not only the CBS issue, but a salicylate/phenol intolerance that requires a lot of sulfate (etc) to resolve.

    And how are you doing w/your dietary/supplement changes?

    Thanks,

    d.
     
  8. rydra_wong

    rydra_wong Guest

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    I have in the past periodically had high lactate too. I would spontaneously pullall my muscles (that is what it would feel like) without having done any exercise. In retrospect, I think it is because you cant make ubiquinol without BH4 and ubiquinol is needed in the Kreb cycle for energy and I am low BH4. I am not sure what the CBS tie would be though. I was shown to be deficient in CoQ10 on my Metmetrix test.

    For Bianca, though, hyperthyroid makes you lose weight and high dose carnitine prevents muscle wasting from it. John Johnson at ithyroid.com found it to be caused by low copper, as estrogen increases the half life of copper and waning hormones can lead to low copper. I lost 20 pounds at menopause w/o trying as I became hyperthyroid (hyper by www.lef.org ranges). But after that I started hormone replacement to get sudden Stage 3 hypertension down and so took iodine as a defensive move against cancer...this flung me into blatant hyperthyroid so it was diagnosed immediately rather than a slow creep up as occurs with most people. Stopping the iodine took care of the blatant problem, but I had hyper before I took the iodine, it was just not so bad. I followed whqt John Johnson learned on his hyperthyroid website (www.ithyroid.com) and use a copper solution by skinbiology.com that I apply externally plus a multi with copper. I am mostly fine with no need then for carnitine (tested in range). But every so often something throws me back into thyroid issues - specifically being anemic throws me back into thyroid issues. I still have to take iron even post-menopause.
     
  9. greenshots

    greenshots Senior Member

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    Dan, sulfate is a problem and yes, we do need sulfate and this is the reason Yasko prefers having the CBS controlled before pouring in more sulfur. I use the CBS RNA while some don't but my doc has me dilute the bottle and then use a few drops of that mix. I've had the same bottle for 8 mos now. I slowly add in tiny bits of methylation support as I go. Yasko also discourages any direct copper supplementation until the zinc is balanced and if its still significantly low, she says go for it. In general, most don't require it once you get the system running again. Owens hates Yasko & has done her best to disparage her to anyone who will listen. yasko isn't perfect by anymeans but much of Dr. Deth's work has come out in favor of what she's found. That nonsense about the urea cycle being able to compensate for a CBS upreg is pure crap since few in Cfs have a working one anyway. Dr. Pall's work clearly shows this. In the end, you have to take a little bit of everyone's and shape a good program for yourself in the end.

    I wish you the best in this journey & hope you find wellness.
    Angela

    Rydra's situation is different so she has high homocysteine but most do not. But she probably has other genes contributing to this such as BHMT, both MTHFR's, etc. Her Bp is also high so I do think her caution to you was meant well but yes, sounded a bit reactionary.



     
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  10. rydra_wong

    rydra_wong Guest

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    Regarding lactate, I found this:

    I recently found a very interesting paper on biotin -- it seems to ME that it might be of CRUCIAL importance in CFS because it appears to be the determining factor as to whether carbohydrate is processed anaerobically (leaving acidic lactate in the blood and producing only 2 ATPs), vs processing it via the aerobic Kreb cylce producing 36 ATPs (much more energy and no lactate).

    http://www.ncbi.nlm.nih.gov/pubmed/20798549
    I have an actual copy of the paper but dunno what website I got it from - the above is just the abstract.

    Rydra
     
  11. rydra_wong

    rydra_wong Guest

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    I have not proven it but I believe I have a problem with Vitamin A of some sort. And I just ran across something of interest in this regard to CBS'ers:

    Phyllis Acosta in "Nutrition Management of patients with inherited metabolic disorders" says that CBS deficiency may impair Vitamin A status as Vitamin A was found low even after retinol administration. She theorizes homocysteine may oxidise Vitamin A. There is more discussion that I cannot get as the books costs $246. (She begins to discuss elevated plasma copper -- something which indicates inflammation, not high copper stores...).

    She later discussed protein requirements in PKU and PEM...too bad I can't read them. I found elsewhere that in malabsorption the protein requirement goes up (to make up for what is undigested) - 30% or more depending on the degree of malabsorption.

    For me, I keep getting low ferritin (well a few times a year) and low ferritin causes hypothyroid (for me - but my ferritin goes below 20, maybe lower as it makes me gasp for air). This last time was because I stopped my multi which has iron in it...and yet I am over 50 and should not need to supplement iron, and I eat about as much protein as my friends who do not have these issues.

    I find ferritin is bound by RBP (retinol binding protein), and I cannot reaise ferritin sufficiently (supposed to be 70, but at least above 50, mine has never been above 47, and anything above 40 causes raised serum Fe (bad). I have several signs of low Vitamin A -- keratinus pilaris (which a college textbook on line said was a Vitamin A deficiency) and a loss of enamel along the tops of my teeth which occurred at 18 when my mother switched to low fat milk (maybe 1/2percent...I am not sure if the lowfat milk was supplemented with A at that time or if fat is required to absorb the A). So I am thinking I may have low RBP due to low A - not sure if due to inability to turn beta-carotene into A or due to CBS gene now. RBP is made of A, Zn, and protein...dunno what else. So I was investigating and have this also to report:

    Low ferritin causes hypothyroid. If one's thyroid TSH >=2.0 one is subclinically hypothyroid (www.lef.org) and it causes raised cholesterol land low HCL production, and the low HCL production alone causes a need for more protein per day or else this causes an endless loop of low RBP, low ferritin, and thus low thyroid and low HCL.

    But my friends just dont fall into this hole and so I think there is a Vitamin A component that is going on in my case....maybe due to CBS. Just thought I'd alert others. What precipitated this for me was that I stopped taking methylation supplements -- I did not mean to stop forever but I was so tired of being nausaous taking 42 pills...the only things I kept taking were my hormones, D,E, and C. Made me sick - of course. But it is so frustrating that no one else has to be addicted to many, many expensive and nauseating supplements as I seem to be.

    Well anyway, be aware you'all may be finding retinol deficiencies.

    http://books.google.com/books?hl=en...U8Lg_xvxBYpgESZYc#v=snippet&q=retinol&f=false

    It also makes me wonder if this can happen (oxidation/destruction of retinol) due to TRANSIENT rises in homocysteine such as after meals (making choline and betaine important to protecting retinol?).
     
  12. rydra_wong

    rydra_wong Guest

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    Bianca, I guess this post is old but I am wondering about a few things - like why curcumin is bad for a COMT gene? I find it does well for joint pain. I don't actually have it in my protocol but right now my brother-in-law died and his pills got bequeathed to me so I am taking it - why not?

    I took my homocysteine reading at supplementing P5P at these rates and there was no difference in the result:
    50mg plus whatever is in 2 Thorne Basic B's
    200mg plus whatever is in 2 Thorne Basic B's
    So at least with my stackup I dont think P5P can hurt and it protects the kidneys from glycation.

    I am curious about your bouts of anemia. Are you still having them? Do you look at your ferritin when you get them? I get low ferritin and when I supplement it rises a bit but never back to normal before spilling over to serum Fe. I think it is due to a retinol deficiency (I may not be able to make Vitamin A from beta carotene). There is something about retinol binding protein being required to bind ferritin...

    Also how did the lithium affect you? I am low normal but lithium supposedly keeps you from feels lows OR highs so I won't want to do anything with that unless it actually goes low. How did you feel on it? Are you still taking it?

    Thanjs
    Rydra
     
  13. BiancaS

    BiancaS

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    Hi, I thought my bouts of anemia would be over once my lovely tapeworm finally got out. Unfortunately, not the case. Levels recovered and now dropped again. Somewhat worried about a nwew worm coming up. Will go for another rounds of treatment. My ferritin is in the normal range, but I might want to do a few iron ivs, just to up it a bit more.
    Lithium does ot affect em at all. My hair results were at an all time low on lithium, so I am supplementing with 5mg per day. Did a new blood test, still very defficicient, so I am thinking of maybe increasing to 15mg, like Klinghardt recommends. It's supposed to help with sleeping.

    About this whole copper business, I decided to go with Klinghardt on that one and i am taking a supplement containing zinc and copper. Have moved away from one-sided supplementation, but rather a bit of everything, to kep it balanced. I feel for me it is better then going for high dose of one and not the other.

    I am subclinical hypothyroid, not hyperthyroid, so my weightloss was not explained by hyperthyroidism, but rather a combination of tapeworm and my SOD2 polymorphisms, triggering the CFS and the glycogenesis (or something like that) in which my cells used my own tissue for food. The high lactate basically means that my body is not producing and pyruvate (was almost nil), which means no energy for the conversion, which is clear, since ATP was very low. A vicious cycle. Carnitine fumarate plus high dose of CQ10 might have stopped that for me.

    As for the ammonia, yes, i have had huge ammonia. Problem was not my protein intake, but a rather overyealous naturopath who treated my CFS with high doe of iv Taurin, 600mg NAC, iv ALA,etc, etc, so sulfates gallore. I am not allergic to any sulfates and an take them all usually, but this just killed it for me. My CBS was going ballistic. And I got glutamine (high dose) for my gut. You can imagine what happened. I think that this clearly shows that high doses of something (even though vitamins) can create a lot of damage if you don't know the details. This guy should be careful giveing his "standard" regimen to his patients without knowing the genetical status.

    I am now only on sulfates in food (and some red wine ;-)) and I am doing fine. My Moly levels recovered. P5P is also limited for me and it works well. Homecysteine is low/normal. I am going to soon restart on some moderate NAC and ALA, but that's taht.

    You asked about curcuma. Well, according to Yasko this is a methyldonor, or something, and can put additional stress on COMT+. Apparetly mood swings, etc. Another result of my naturopath. He tested that this certain curcuma product, taken in high doses, would stimulate my NK cells. It did, downwards.....
     
  14. rydra_wong

    rydra_wong Guest

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    Thanks, Bianca. I don't think I have to worry about COMT so much because I have low everything -- it would only be - I think - if I had high dopamine or some such that I would have to worry. I don't know why low every neurotransmitter, but maybe due to the BH4 problems. I haven't taken high dose curcumin on a daily basis, never more than 3 days in a row because I take so much other
    stuff and dont find that crucial, but I never noticed a problem with it. Maybe if I were to take it for long periods, but I don't know.

    My doctor has me take a Senesco neuro lab and they want me to take their supplements to raise my neurotransmitter levels
    but we started with the adrenal ones and I could not keep they down...they made me puke. So we never got to the ones with tyramine...he said maybe we could jump ahead to that at my last appt. and I said - no, there is phenylalanine in it and that won't
    help me and one of those supplements has taurine in it (cant remember if it is that one) and that won't help me either. So we are
    looking at what is in these supplements and picking and choosing. He prescribed 500mg tyrosin plus 25mg BH4 for me. I could
    feel the difference immediately so I'd say I need it.

    For copper I am just taking a multi with 15mg zinc and some small amount of copper (2mg?) and I am using a copper water solution on my skin from skinbiology.com to get some extra copper. Because the ratio I need is 15:5. But it doesn't work out too well because I am very bad about taking a 6/day multi - I usually only manage 2/day. I know for sure when I need zinc because I break out so then I pop a zinc pill. Wish there was some easy way to tell about copper. They say it keeps your hair from losing color and by that standard I need quite a bit more. I am getting another hair analysis soon to see where I am at. I have considered looking for a zinc water solution as well...these minerals are hard on your stomach and it's great to be able to get them through the skin.

    We have very similar genes but I think you got that tapeworm on travel, yes? I know I don't have parasites because I take supplements that would kill them so it cannot be. Anyway I only lost weight when I went hyper. WHen I went hyper, this is curious, but I would get thyroid storm symptoms, but unless I went to get my blood measured right away, the thyroid measure would come back hypo - like 6.0. And yet I would still have the hyper symptoms AND the hypo symptoms at the same time. And it was from taking Iodoral, high dose iodine, so I would say I really was both hyper and hypo. I did catch the hyper once on a blood test. So here's the thing - it is possible to be 'hyper' in one sense and hypo at the same time...John Johnson worked with hypers (he is one due to smoking and cadmium poisoning from the smoke) and they found they all had a copper deficiency in common and he theorized that you need copper to turn off the thyroid. So if you are copper deficient you would not be able to turn off the thyroid. At the same time you may not make enough thyroid hormone and be hypo...but if you ate fish or sushi, for instance, ZAP -! you become hyper for a day or a few days or longer even from the iodine...or maybe like me you become hyper for only half a day before you run out of tyrosine to make more thyroid hormone (you rip through all the tyrosine in a flash and then go seriously hypo). Well anyway, that's how I figure it happens to me.

    Take care
    Rydra
     
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  15. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    So how's it going Dan, any progress?
     
  16. soulfeast

    soulfeast Senior Member

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    If CBS is upregulated and acting out, a by product may be too much sulfur which can overload SUOX whether you have a SUOX issue or not.. so when testing biomarkers with Yasko she looks for sulfur issues such as high levels on a UAA (I think) or sulfite issues on strips. It's not a hard fast rule.

     
  17. soulfeast

    soulfeast Senior Member

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    Where are you getting this information that downregulated CBS causes high homocysteine?

     
  18. dannybex

    dannybex Senior Member

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    Yes, some general progress, thanks. Definitely 10-15% better than a year ago. After reading Jill Jame's study, (where there were no sulfur restrictions) and 'talking' with Anne Likes Red, who also has the CBS 'upregulation' and has increased her sulfur and is doing MUCH better, I decided not to worry that much about it. I take some moly-b (as she did, which helped her tolerate sulfur) from time to time, but not every day...
     
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  19. dannybex

    dannybex Senior Member

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    Thanks Soulfeast. I do have one (or two) SUOX issues...and am taking moly-b to help with that.
     
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