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How do I know if CBS is "expressed"?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by anxiousguy, Feb 22, 2014.

  1. anxiousguy

    anxiousguy

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    I have heard that CBS is only a problem if it's expressed.

    I am attaching my 23andme in case I am reading it incorrectly
    cbs699t +/-
    cbsa360a -/-
    cbsn212n no call

    I was told that I should address CBS before methyl supplements if it is a problem. Could someone let me know how to tell if it is expressed?

    Thanks

    Attached Files:

  2. ahmo

    ahmo Senior Member

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    Star-Anise likes this.
  3. anxiousguy

    anxiousguy

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    I eat eggs and brocolli everyday because I'm trying to avoid a bunch of other foods for a bunch of other reasons (glutamine, glutten etc). Running out of things that I can eat. I have heard of sulfur strips. Anyone have any luck/experience with these?
  4. ahmo

    ahmo Senior Member

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    I use sulfate strips. They show me within acceptable range, have done so since I first started using them. By then I'd eliminated sulfur foods already. But I still react poorly to eating sulfur. I just looked at my hair analysis. It shows high normal sulfur, with me avoiding all intake. My only veggies for the past year have been cooked zucchini, and juiced lettuce/carrot, bit of red pepper. I'm also non-gluten. I don't know how else you can determine if it's a problem without eliminating things and looking for change in symptoms, behavior, etc. cheers, ahmo
  5. Star-Anise

    Star-Anise Senior Member

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    For me, I was quite fatigued & was having odd reactions to certain foods - anxiety/agitation mostly, but also increased fatigue following sulphur foods.
    I think that if you are ill, & quite fatigued/have brain fog it might be safe to assume that you may be having @ least some CBS issues. However, there are those that do not believe there is a enough research to constitute the severe dietary restrictions that are recommended for treatment of CBS issues. That being said, with a heterozygous CBS C699 snp, I would at least consider supplementing with molybdenum, being that within the CBS literature this is seen as one the more severe of the potential snps. Yasko recommends this mineral as well as manganese and charcoal/magnesium flushes & her RNA formulas. I find I'm too sensitive to manganese right now (you may want to think about this as according to Yasko supports dopamine production & you already have up regulation in this area COMT+/+), but used it in the beginning. But I supplement daily with Molybdenum (150mcg).
    If you try the other methylation supports (MB12, Mfolate) & are not seeing any improvements or increases in negative symptoms, then perhaps this might be a sign to also take a more serious look at potential of CBS issues.
    I, myself, have never used the sulphur strips, but ramp up charcoal when I notice an increase in my agitation or brain fog if I knowingly have consumed more high sulphur foods (usually in social situations or when I don't have another option).
    Hope that helps.
  6. anxiousguy

    anxiousguy

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    Thank you for the help @Star-Anise

    I am thinking about abandoning all of this and living with it. I can't go through another year of spending thousands and spending all my time taking tests and supplements then more tests and more supplements and studying and etc etc

    All of this stuff is what has stressed me to the point of being suicidal. You can't live. You can't eat anything. One doc says eat broccoli and animal proteins but no gluten. The next says no glutamine foods. Then no sulfur foods. Then no this. Then no that. Can't eat anything. You just have to live in a cage taking supplements/tests/talking to docs/researching all of this. It never ends!!!!! My relationship of 7 years has been destroyed. I don't have time for her. Just work and health.

    Should I just take molybdenum? What is the best way to proceed? Is there some way to test blood or anything else to determine if the cbs 699t is a problem. I can't deal with feeling worse so I am not sure that I just want to start folate/b12.

    Would it be better to somehow test to see if it is a problem before starting methylfolate?

    Should I just "treat" it first, then start folate/b12? How long does it take to treat it? Do you have to keep treating it? How do you know when it is fixed/treated/ready to proceed to methylation?

    Sorry. Just so exhausted and frustrated with all of this
  7. anxiousguy

    anxiousguy

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    @ahmo

    Thanks
    What sulfate strips should I use? Do you have a link? Have often do I test? What other way other than food elimination can I do to tell?
  8. ahmo

    ahmo Senior Member

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    @anxiousguy, I got my sulfate strips from an Aussie distributor. You'll have to search for them, sulfAte, not sulfite.

    I am really sorry you're in such distress. I've just passed the 2 year mark from when I felt that suicide was the only option, I was jumping out of my skin. I know you have to radically limit your diet. At least for now. You won't get better if you just keep on doing what you have been doing. The reason to get on top of the CBS before the B12/folate protocol is so that the sulfur load isn't also impeding the process, which will send you into, probably, an extremely anxious state. I'm sorry, I don't know how to be more gentle. But if you're sick enough to be gene testing and searching for answers, then you have to be willing to accept some limitations on what you'd *prefer* in life. It's easy to say, I'm 64, live like a recluse.

    If you've spent all this money on tests, then you know that path isn't helping you. You'd be far better off to try to get clear on exactly what's going on in your body, charting symptoms, and what happens when you add or eliminate certain things. Like sulfur. Eat zucchini. That's the only veg I've had for a year and a half. w/ carrot/lettuce juice. It was horrifying at first. Now, that's just the way I eat. I've found the GAPS diet great, but there's a learning curve, and patience is needed. the GAPS forums have been incredibly supportive and educational, putting me on my path to gene testing.

    Taking molybd, zinc, selenium, K+, mg+, manganese if you can. Also low dose lithium, per Yasko. You can get tabs, Dr's Best, from iherb. I'm only taking 1/2 tab. I used to use Orthomolecular Products capsules, 1/4 cap daily.

    OK, I feel like I'm catching your anxiety, like I'm wagging my finger in your face. Maybe take a bath. Both of us!:lol:
  9. anxiousguy

    anxiousguy

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    I just don't have the time , money, sanity to do this. 80% of my anxiety would disappear if I just decided to ignore the mthfr.

    I am not ill or sick other than anxiety/depression/ocd.

    Everytime I read/research or deal with this stuff I end up in a panic attack/have a depressive episode

    Thank you
  10. ahmo

    ahmo Senior Member

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    @anxiousguy, I just looked at your 23andme results. You have ++MAO, like me. I've finally come to understand how much histamines have pushed my anxiety. Are there any histaminic foods you can stop? Fermented foods, avocado...sorry, I can't link a list in the moment. I just thought about your name, complaints, and thought I'd look at the results. I don't know much about COMT, @Critterina does. Maybe CBS isn't your main problem.

    A few histamine links:
    http://thelowhistaminechef.com/dr-castells-interview-the-role-of-stress-in-mast-cell-disorders/
    ‪‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
    https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q
    http://criticalmas.com/2012/05/the-low-histamine-diet/ food list
  11. Star-Anise

    Star-Anise Senior Member

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    @anxiousguy
    Hmmm, if you are feeling overwhelmed then I would just stick to a common-sense basic diet. I would avoid dairy, and gluten as much as possible as these tend to cause the most gut problems. Anxiety, depression, ocd symptoms can all be related to gut health, as there are more neurotransmitter sites in the gut then there are in the brain. I wouldn't worry about CBS at this point. Addressing CBS was very helpful for my brain fog and my agitation/excito-toxin symptoms in relation to high sulphur foods, but if this is not your primary complaint then I wouldn't worry about it right now.

    Yes, you can try molybdenum. I would try a small dose though. At higher doses I found it contributed to my anxiety a bit. I don't think that CBS is your biggest issue right now. If you want to take molybdenum to generally support your sulphur pathway then this would be something you could do at a low dose. It is relatively inexpensive.

    From my understanding there is no definite test other than the sulphur test strips which were mentioned above. You have to trial and error. But I would do it at a time when you have more surplus. If you are feeling overwhelmed then this is not a time to introduce huge variables. Methylation is a big undertaking. It is not a smooth ride for a lot of people. Go low, go slow. Is one of the sayings by @Critterina

    It could take months. It took me a few months. My advice try the molybdenum small quanitites. Get stable on this (where it is not agitating or fatigueing you), then try to introduce the B12 - tiny, tiny dose. But also entertain the idea that you do not have to treat CBS first. I'm proceeding with my husband without doing so and he has a homogenous mutation on the same CBS snp you have. I tried CBS protocol with him. It didn't help. Any progress I have made with him has been with B12 in various forms.

    @ahmo makes an excellent point - I would research MAO+/+ & how to support. I would be wary of supplementing with too many methyl donors (methylB12, methylfolate) at this point if your anxiety is high. COMT +/+ keeps dopamine active longer & can make you sensitive to methyl donors & feel overwhelmed easily. Unfortunately there are no easy answers & only trial and error when it comes to this as far as I see. I personally would try hydroxy-B12 first. But there are various different opinions on this.

    I have MAO+/+ too, as well as a BHMT mutation that can both lead to problems with anxiety. I find a low dose 5-HTP really helps here (about 10 mg twice per day). Much higher and the anxiety or fatigue increases for me. I also use a low dose of Tryptophan at night to sleep (about 100 mg).
    Here's a thread where people are talking about how to support MAO:
    http://forums.phoenixrising.me/index.php?threads/rs6323-mao-a-what-this-gene-does-if-its-bust.15379/
    Over the long term proceeding with the methylation has really helped my mental health significantly, but this was not without its highs and lows with increased anxiety and moodiness at times. @Freddd has explained it as brain dysfunction within the limbic area of brain that needs to be healed. While the increased anxiety/agitation has been short-lived, to be honest, it was quite uncomfortable at the time.
    I have found however that proceeding with methylation supports has been much more complicated with my husband than it was for me. I am COMT-/- whereas he is COMT+/+ like yourself. That's why whatever you decided to do, I would use low doses (actually open the capsule and split into smaller pieces) and very slow.
  12. anxiousguy

    anxiousguy

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    Thanks @ahmo and @Star-Anise

    @caledonia (who I wish I could nominate for nobel)
    suggested hydroxy to see if adverse reaction (if I wanted to risk feeling bad)
    or sulfate strips (no risk)

    If everything went well add in folate.

    The only reason I am concerned with CBS is that everyone says heal gut first then deal with CBS. I am pretty sure gut is ok.

    What kind of potential reaction would the hydroxy give me if it would give me a problem? how quickly? How quickly would it go away and would there be a way to counteract it (niacin?)

    how many times a day and how many days would you check the sulfate?

    What do you think would be the best things I could do for my mental health. I am eating a good diet 90 percent of the time. Little gluten, no dairy and minor processed foods. Saturdays are a cheat day and I indulge in a glass of wine Sat nights. I do have high homocysteine btw.

    @Star-Anise if I could impose upon you: would you layout a simple strategy with doses?
    ie hydroxy at a certain dose for certain days, then folate (certain dose, certain days)

    I do have Deplin btw. Should I be taking a different folate?
  13. ahmo

    ahmo Senior Member

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    Here are some things that have worked for me. For dealing w/ sulfur/ammonia: ornithine, lysine, butyrate; For histamine: rutin, royal jelly, quercetin. Vit C and calcium help mobilize histamines out of the body. I've found in my current regimen of frequent coffee enemas, that what was driving my jitteriness/irritability was not caffeine, but histamines and sulfur from the process. Now that I take these supps straight after the process, I don't have these toxic reactions. Also, to mediate glutamate, amino acid GABA. I need to take all of these now...bye for now.
  14. anxiousguy

    anxiousguy

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    @Star-Anise

    I did have high ammonia in one test and it didn't repeat when retested. I also have high homocysteine which a1298c don't usually. My taurine is in the middle.

    I have been doing a bunch of reading so idk if that helps illuminate anything regarding The CBS, Comt, Mao, type of treatment suggested
  15. Critterina

    Critterina Senior Member

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    Oh, @anxiousguy , my dear, you know that panic, anxiety and depression are typical of mthfr A1298C and you are ++ for that. It's not your inability to deal with it, it's not a weakness. You were just built this way. It's the reason you need methylfolate. If you don't get worse every time you eat eggs, I wouldn't treat for sulfur. As a teenager, I was sensitive, couldn't even be in the room when someone was eating eggs. But now I'm fine with them. We have enough common sense to recognize if the sulfur in them is bad for us. So please don't stop the methylfolate. Were you using Deplin? It seems like you might need a decent dose. Methylfolate and a little B12 maybe, but later.
  16. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    Last edited: Feb 23, 2014
  17. anxiousguy

    anxiousguy

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    @Star-Anise , @ahmo @Critterina @caledonia


    Thank you all


    I was not wanting to treat the CBS first, but it seemed like that was what I "was supposed to do". I don't have a problem with eggs. I eat them every day. I did order the sulfate strips to rule it out completely. As long as I don't have problems with eggs, broccoli or fatigue.


    Heartfixer says “Laboratory findings consist of an elevated urine sulfate level, a low or low normal blood homocysteine level, an elevated or high normal blood ammonia level, and positive findings of ammonia, sulfite, or sulfite upon Asyra testing. My initial observation is that individuals with high heavy metal burdens upon provocative challenge testing are likely to be CBS positive. CBS (+) individuals will be intolerant to sulfur containing drugs, nutritionals, and foodstuffs (I am +/- for CBS A360A and cannot tolerate DMPS or glucosamine sulfate. A cold beer tastes great but I do not like wine, which is high in sulfite).”


    I have high homocysteine (tested last spring – 9.6 nmol/mL) (in the fall it was 13.5 Umol/L). Is that an indicator that CBS is not a problem and that I can’t start methylfolate and b12? I DID have high ammonia in one test and when a doctor retested it, it wasn’t the case. I don’t know if that is illustrative of anything regarding CBS or my treatment.


    Heartfixer says: “Biochemistry – The 10-fold up regulation in CBS generates sulfur breakdown products (sulfite and sulfate, which stimulate the stress/cortisol “fight or flight” response), excess ammonia (in the process wasting BH4 which is used up detoxifying ammonia)”

    I feel like I am in constant state of fight/flight


    In addition to the once elevated ammonia, I have high methionine. I am testing my cortisol this week.


    I am not currently taking any methylfolate or b12. A psychiatrist had me on 15mg of Deplin for 2 weeks. I then discovered mthfr and all of that on my own and discontinued until 23andme came back. He doesn’t know anything about mthfr, he just rxd Deplin to go with Pristiq (which I decided NOT to take).


    I don’t THINK that I had any adverse reactions to the deplin or methylcobalamin but I am not sure. I had such a hard time mentally that lead me to the shrink to begin with. I did take b12 shots in the past.


    Just to be on the safe side though, and considering my mutations, I think that I should take hydroxy and NOT methylcobalamin, correct? B12 is B12, correct?


    What is my best course of action?

    1)Try the sulfate strips and if everything is ok….

    2)Start hydroxyl for a certain amount of time? And if everything is ok….

    3)Start Methylfolate (Deplin since I already have it, or buy something else)?


    Should I be taking anything else? Will this help bh4 or do I need to take that too? My b6 was through the roof at one point (being retested this week), so should I be taking any more b vitamins (someone said no p5p with my snps?)


    I am reattaching all my info


    Thank you so much everyone! Once I learn more and straighten myself out, I look forward to helping people with this stuff myself – particularly mental health. That whole is field is just about incompetent.


    Here is my Nutrahacker
    https://www.nutrahacker.com/detoxRe...omer_51092f66-5c5d-4d88-92bc-c0e95df0b031.pdf

    Please see methylation and detox attached. - oops they won't attach as docs.
    Here is a link to a previous post of mine with those attachments
    http://forums.phoenixrising.me/index.php?threads/my-23andme-results-came-back-now-what.28429/

    THANKS:)
  18. Star-Anise

    Star-Anise Senior Member

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    @anxiousguy
    Hi there, I will try my best to answer your questions, but please understand I am no expert. I only am at the beginning of figuring out this for myself...

    It's a good idea that you ordered the strips. Many people make the determination that way. In some circles, i.e. Yasko followers, it is definitely suggested to treat CBS first. And use of the strips is strongly recommended as a guide to know where you are at with CBS expression/nonexpression.

    I don't know much about homocysteine. I have never had mine tested personally. I think that using the test strips will be your best quantitative evidence. Albeit there is some discrepancy about how accurate the tests are and what that means, but you need some sort of guide. My guide were my symptoms, but you do not have similar symptoms.

    Please understand that the snp information while useful, is in my experience, is also just one piece of the puzzle. Treating CBS, and adding methyl supports to your regimen many result in decreased anxiety. However, it may be useful to look at other parts of the puzzle like neurotransmitter balance (i.e. serotonin, GABA/glutamate), and adrenal health. Both of these areas of functioning can significantly contribute to anxiety & flight/fight responses in the body. It is super great that you are testing your cortisol. This will give you more insight into your situation for sure. Are you getting a saliva test or a one-shot blood test?

    With respect to high methionine Yasko adds:
    I noticed that you have ACAT +/-. I'm not suggesting that you address this mutation right now. But, this may be related to your high methionine levels.

    From my readings due to your MTRR A66G +/- mutation you likely need B12. We all tend to need B12 anyhow on this forum, unless you have excellent digestion of proteins & eat a diet rich in red meat, which likely many of us don't.

    Due to your MTHFR A1298C +/+, it is likely that you would benefit from methyfolate, but this is the lesser of the MTHFR mutations, but for some people still need to be addressed. You can read about this controversy here:

    http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

    He also speaks of BH4. This is where some of the CBS stuff might be related to you. Sometimes CBS if expressed can contribute to less BH4 being available for neurotransmitter production. It is possible that this is one of the areas that you are struggling with as you are lacking in more calming neurotransmitters. But use the strips first. This will help you to quantify the situation.

    Yes. Try these things.
    Read through Dr. Lynch's stuff regarding Deplin. After reading through some of it myself I'm almost wondering if you should try the folate route first. With respect to Deplin, sometimes it is too much too fast. Especially for you because of your COMT +/+. At least this is what is in the information available. I'm COMT -/- so I have not experienced this, but I do get overmethyled.
    When I tried hydroxyB12 before I got my testing back & seen I wasn't COMT+/+, I started at about 250mcg every other day, and I would alternate with folonic acid at the time. I then worked up to 1000mcg/day.
    I would try a similar approach if I was you. For me it worked to not take the B12 and folate on the same day at first, and work my way up to it by slowly introducing them on the same day but not the same time and so forth.

    Personally I wouldn't worry about adding extra B-vitamins right now. I would concentrate on testing for CBS expression with strips when you get them, and work on getting stable on a B12/folate dose - in a form that you can tolerate. Look at adding other Bs in later as further support. I'm not sure what would lead to high b6.

    Hope that helps.
  19. anxiousguy

    anxiousguy

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    @Star-Anise

    Thanks

    Cortisol urine test. I save my urine for however many days.

    I am getting neurotransmitters tested too.

    I read that Dr Ben link. It is from a few years ago. The decreased neurotransmitters were of interest.

    How do you dose drops of hydroxycobalamin?

    I was high in b6 b/c I was supplementing. I am getting that retested tomorrow.

    Thanks!!!
  20. anxiousguy

    anxiousguy

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    @Star-Anise

    As far as Deplin being too much too fast, you are referring to the dosage, not the Deplin, correct? Deplin is folate, correct? Deplin / folate and folonic acid are the same?

    Thanks

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