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I have CBS and need help with a low sulfur diet

Discussion in 'Genetic Testing and SNPs' started by freshveggies, Jul 18, 2012.

  1. caledonia

    caledonia

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    No. If you are healthy, living a clean lifestyle and eating a good nutrient dense diet, I don't understand why you were supplementing with methylfolate and B12 anyway, except maybe as some kind of "insurance".

    The CBS mutation (or any of the methylation SNPs) are not automatically "activated" just because you have them. They also require environmental toxins, viruses, or extreme amounts of prolonged stress to become an issue.

    Even if your CBS was "activated" you would only have to restrict sulfur for a few months - long enough to remove the excess sulfur stores and get the transsulfuration pathway working again.

    You can do the HDRI Methylation Pathways Panel to get a measurement of the functional status of your methylation pathway. This will tell you if things are operating correctly or not.

    So, if you're otherwise healthly and feel good, I would keep doing what you're doing. However, since our world is so toxic, I would also pay particular attention to eliminating toxins from your environment. So that means living as if you had MCS - so be careful about household cleaning products, paints, markers, new furniture, remodeling, new car, etc. All these things will offgas formaldehyde and other compounds and deplete glutathione.

    I would also suggest making a FIR sauna or other methods of detoxification part of your daily routine. This will detox out chemicals and metals which your body would otherwise squirrel away in your fat.

    ps. since your and your wife are both CBS +/+, all of your children will also be CBS +/+. There is a neat little chart on the Heartfixer page, that will give you an idea of what SNPs your children might have, based on what the parents have. http://www.heartfixer.com/AMRI-Nutrigenomics.htm
     
  2. Ripley

    Ripley Senior Member

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    Thank you, caledonia. Excellent tips and extremely helpful. Thanks again.

    I was taking methylfolate and B12 for insurance purposes — felt like I should be taking them. Clearly I shouldn't be taking them every day, but wouldn't taking them once a week be a good idea?
     
  3. greenshots

    greenshots Senior Member

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    Just a caveat, try not to get caught up in the trees and miss the forest. There isn't one single anything that leads to every CFS or chronic illnesses' demise. Its a combination of problems leading down to the who domino effect. The CBS is but one problem and even then, only if you have a bunch of other defects that intensify it. Then theres the toxic assaults and build up, stressors, multiple infections, and so on. The CBS alone didn't cause all these problems. Like I said above, you could have horrible genes but have led a super clean life so that you'll die at 90 of a heart attack. Or you could be an 18 year old with CFS due to a horrible genetic line up along with pool of toxic assaults.

    Since there's no one size fits all magic pill that big pharma has thoughtfully whipped up, we're left to our own devices. And to me, thats temporarily avoiding extra burdens where you can. Like I also said in an above post, we need many of the sulfur rich veggies for their anticancer and detox potentiation thru the NAT 1 and 2 pathway. Just because some people get caught up in the CBS or MTHFR frenzy, doesn't mean everyone is or should be. The forest is the main issue. If you have a bunch of trees ablaze, then I'd watch out for some ways to put out the fire before the whole forest burns down. Its a matter of being pragmatic, not radically eliminating everything. I'm not sure how much more I can hammer this point home. It is what it is and its not black and white. To me, it makes sense to stick with the bigger picture and do the best you can with what seems to work best for each person.
     
    Dreambirdie likes this.
  4. Dreambirdie

    Dreambirdie work in progress

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    greenshots I'm on the same page with you regarding this. I have eagerly jumped into and tried out so many people's theories and agendas, many of which have caused me huge setbacks in my health. I am not willing to turn my life upside down anymore with radical changes and food eliminations and hundreds of dollars worth of more even supplements, that require me to tough it out through endless herxes and detoxifications, in the hope that *one day* it will all pay off.

    Finding what works requires a lot more than jumping on the bandwagon of somebody else's supposedly brilliant agenda. You have to take into consideration how many changes you can handle at the moment, and how many of these make sense in the bigger picture of your life and health. Some of the things that have helped me most have been very simple ones--like learning to manages stress better, spending more time in nature, eating regular meals and getting protein at each one. Chinese herbal prescriptions have also helped me enormously. Are they helping with methylation? Who knows, and who cares. The point is they work and I feel better from taking them.

    In working with the SNPs I am taking into account the entire forest, as you put it, and keeping an eye on the worst of the SNPs without letting them take over my life.

    I just got my urine sulfate test strips, so when I finally figure out how to open the bottle, :redface: I can see how big of an issue this minor CBS SNP is and decide what to do next.
     
    LouiseSB likes this.
  5. Symptomatic

    Symptomatic Senior Member

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    Where did you get yours? I ordered both sulfate and sulfite test strips on Amazon, waiting for them to arrive.
     
  6. Dreambirdie

    Dreambirdie work in progress

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    Symptomatic likes this.
  7. caledonia

    caledonia

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    Also the form and amounts of folate and B12 are very important. You reported taking Metafolin and B12. What was the amount of Metafolin and what form and amount of B12? Was the B12 taken through the stomach, sublingual or an injection?
     
  8. Symptomatic

    Symptomatic Senior Member

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  9. Dreambirdie

    Dreambirdie work in progress

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    greenshots So I tested my urine sulfate levels 2 days in a row, and it comes out as >400. How serious is that? And what is the minimum I can do to lower that level?
     
  10. Ripley

    Ripley Senior Member

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    I took 800mcg of Metafolin and 1000 mcg of methylcobalamin for 4 days in a row. Had a major panic attack and anxiety on the fourth day. Sounded like classic over-methylation from what I read. Used niacin to back it down (as recommended on mthfr.net, which is how I stumbled on to all of this). B12 makes my brain feel sharper — feels like I need it, but my understanding is that you need to balance folate and B12 (as biotin?) together.

    So confusing. I think it may just be easier to eat grass fed liver once or twice a week :)
     
  11. greenshots

    greenshots Senior Member

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    For sulfur, my doc looks at numbers over 6-800 as being a slight problem but i think over 900-1,000 is really a big problem. If you're mostly eating good, nutritious sulfur foods and its lower than 600, she tells me not to even worry about it.
     
    Dreambirdie likes this.
  12. caledonia

    caledonia

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    That does sound like overmethylation, especially if the niacin helped cut it back down.

    800mcg methylfolate and 1000mcg methylcobalamin would be amounts used by sick people to get better. You would be more in maintenance or preventive mode.

    If you knew how to do self muscle testing, you could probably nail a number right away, without taking anything. But barring that, you have to do trial and error. So you can cut the amount in half and retry that. If you run into problems, stop, take niacin and let everything clear out. Then retry again, cuttin to 1/4 of the original amount. If that fails, cut to 1/8 and so on.

    Or you can go the other way - cut the amount to 1/8 and try that. If you tolerate that, then increase to 1/4 and so on, as tolerated. If you get a reaction, stop, do the niacin and let it clear out. Then restart at the last tolerated dose.

    If the 1/8 amount fails, you'll only have 1/8 the reaction that you did at the full amount. So that's my preference when doing these sorts of things. I've been known to cut things down as small as 1/256, but I doubt if you would be as senstive as that, plus it would be a pain to supplement that small of an amount just for preventive purposes.
     
  13. Ripley

    Ripley Senior Member

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    What about taking something like 800mcg methylfolate and 500mcg methylcobalamin once per week as a maintenance dose? Would that work? Seems like part of the problem was taking the supplements every day.
     
  14. greenshots

    greenshots Senior Member

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    You could do that with the b12 injections but not really the oral supps since you'll have erratic absorption and chemistry function. There's no law about dosing though. If you do well on more B12 then just drop the level of folate significantly and take a higher dose of the B12. Or take some hydroxy and methyl to split up the intensity of methylation and drop the dose of folate. I would play around with it and see how you feel on different combos or doses so it feels right to you.
     
  15. Ripley

    Ripley Senior Member

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    Not sure I understand how you figure that. Do you have any evidence to support that statement, or is that just your opinion? I only ask because before manufactured supplements existed every human on the planet got their high doses of B12 only on occasion — when they ate liver or kidney once or twice a week. That's the way it's been for millennia. This idea that we have to have lots of B12 every day is something that has only been attempted very recently in our evolution. It just wasn't possible to get high amounts of B12 every day up until a few decades ago. So, our own evolution — as well as evidence from traditional diets — suggests that our bodies are fully capable of taking occasional high doses of B12.

    Good tips. Thanks!
     
  16. greenshots

    greenshots Senior Member

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    Again, your basing your information on healthy people who also didn't have constant toxic exposures. If you fit that bill, then you can eat something a couple of times a week and probably do well. But if you have alotta methylation issues, are chronically ill, and live in the same world I do, this probably won't cut it.
     
  17. Dreambirdie

    Dreambirdie work in progress

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    You got it. When I was a healthy, athletic 20-something, I had the same genetic SNPs that I have now. Then came the mercury fillings, the alphabet soup of nasty viral infections (EBV-CMV-HHV6-etc...), and a neighbor who loved to hose his fence down regularly with toxic pesticides. All that changed the equation completely.

    You can't compare what healthy people do to chronics like us. We need a completely different operation manual.
     
  18. triffid113

    triffid113 Day of the Square Peg

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    Well...I agree with greenshots about acid/alkaline balance. I read there is a 200% greater risk in a wide variety of cancers due to meat consumption as shown in the 20 year Adventist Study of 7th day adventists, 50% of whom are vegan. So I actually eat a low protein diet - some days 60 some days 80g...so prolly average 70g, not sure...some days I even eat only 40g and on those days I increase my tyrosine supplements to 2g (I always take 1g) to make sure my thyroid works. I do not eat low sulfur but maybe not really high sulfur either. I always eat 1 egg and I always take 1 cysteine (broccoli) pill. Since I can tolerate 80g of protein I do not worry about it at all. I only think about it as a curiousity in retrospect like ("oh, so THAT's why I felt so crappy on an Atkins diet" and "Wonder if that's why I can only take 10 minutes of an Epsom salt bath?").

    I do not take charcoal or yucca. However I do take DHEA and I find a number of studies which say that the testosterone it makes controls the epigenetics of the gene (upregulating the genetic defects...of which I have 2 +/+...). That's not a typo...these genes raise my homocysteine and the DHEA helps lower it. However I take this protocol:

    2g TMG, 2 Thorne Basic B (active B's), 50mg P5P (supposedly helps reg CBS, but I started taking it because it spares your kidneys and my father is on dialysis and believe me, y'all want to avoid that), and 800 mcg Metafolin. I don't actually take more mB12 than is in my 2 Thorne as my homocysteine came out to a perfect 6.3 with the above. You have to understand that I take a lot of other supplements and there may be some among them that also impact, in particular, Vitamin D is kbown to interact (I take 50,000 units/week) and free radicals dysregulate the methyl cycle and I take: 1g E, 2g C, every day. I also take my calcium magnesium in a 1:1 as citrate and citrate protects against kidney stones from C and other causes.
     
  19. triffid113

    triffid113 Day of the Square Peg

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    Yes, I am very sensitive to chemicals. Some make me want to crawl out of my skin and so that I cannot stand to be touched. And it is hard for me to keep numbness/neuropathy at bay (like arms getting numb from raising them to drive). It also turns out that I lose zinc whenever I have an allergy attack and it consumes my zinc and zinc is also needed for the methyl cycle so that dysregulates it for me (which I see as raised homocysteine). I valiantly try to stay replete with zinc. I also learned that the amino acids needed for wound healing (and allergens WOUND my sinusses) are: arginine, citrulline, and cysteine. (These are the amino acids added to Pro-Stat AWC (Advanced Wound Care) that we have to give my Dad for healing a bed sore. And we have observed that Aloe Vera gel rubbed on my Dad's skin 2x/day helped him to heal from when his skin burst from retaining too much water at rehab rendering them like hamburger, a real bad thing for a diabetic. It helped his skin heal in 2 weeks and not only heal but it was as flaky as parmesan before and became normal skin after. I looked it up and it has the above aminos especially arginine and cysteine. I also read that Cleopatra used it as a beauty creme.
     
    merylg likes this.
  20. Ripley

    Ripley Senior Member

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    Ah... I see what you're saying. Thanks for the clarification.
     

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