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One Uncertainty About the CBS Protocol Before Commencing...

Discussion in 'Genetic Testing and SNPs' started by topghetto, May 26, 2014.

  1. topghetto

    topghetto

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    Hi @caledonia and All,

    My name is Farouk, and I have been lurking on this website for quite some time. I did Dr. Richard Van Konynenburg’s Simplified Methylation Protocol with the addition of one other supplement, called acetyl-l-carnitine (which helped me get out of bed aha); I stayed on the protocol for a year and a half. To be exact, I started in Oct ’12, and I did no 23andme testing (or anything of the sort) so, I sort of just did the protocol blindsided.

    Prior, to starting the protocol, I had constant headaches, and no matter what I tried, it just would not go away, then within 8 weeks of starting the protocol, I realised that my headaches were longer constant – I still had brain fog, and all the other symptoms of CFS but, it was somewhat almost tolerable. Now, we fast-forward a year and a half later to January 2014, and I have now relapsed. I did not relapse because of Dr. Rich’s protocol but I believe I relapsed because I took a supplement called Biotec Extra Energy Enzymes. I took that supplement for about a week, and then suddenly, I felt a pain in my body that I had never felt in my life, and the constant headaches returned so, I discontinued the supplementation of the Biotec Extra Energy Enzymes. After a week of discontinuing the Biotec supplements, the extreme body pain wore off but the constant headache still has not subsided.

    For months, I was clueless as to why the Biotec supplement caused me the relapse but, as I stumbled upon the idea of genetic mutations (thanks to Caledonia’s Methylation videos), I hopped onto the Heartfixer website, and read about the CBS mutation, and how it can potentially create excess ammonia and have difficulties converting sulfites to sulfates. Then when I read that MSM, Glutathione, and NAC supplements are really high in sulfur and should be avoided if an individual has an CBS mutation, I was like “Oh, yeah, the Biotec supplements contained glutathione. Hmm, I may have an CBS mutation, and by taking those Biotec supplements, it must have added to the excess sulfur pool”. I decided it was time to finally do the 23andme testing so, I ordered the kit about a month ago, and sent the saliva sample back to 23andme days after the receiving the kit, and received the results for the test about a week ago. I processed the raw data through Geneticgenie (thanks Geneticgenie) – and low, and behold, I am heterozygous for the CBS mutation C699T (though, it is not a rare mutation, it just proves my point with my suspicion of having a CBS mutation… tehehe).

    Now, I want to start the CBS protocol by going low-thiol instead of low sulfur (and of course, with the supplements Dr. Yasko/Heartfixer suggest, which are molybdenum, yucca, hydroxocobalamin and weekly charcoal flushes). There is one thing I am unsure of, I am also heterozygous for the BHMT-08 mutation. Apparently, the work around for this mutation is to supplement with phosphatidylcholine but, is this done during the CBS protocol or after the CBS issues have been addressed? Because, I have sort of already started supplementing for the BHMT mutation using Now’s Sunflower Lecithin (as GMO is a no-no for moi) about 2 weeks ago :p

    I will also attach a screenshot of my SNPs too ☺



    Kind regards,

    Farouk.

    Attached Files:

    Last edited: May 26, 2014
  2. minkeygirl

    minkeygirl Senior Member

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    I'm not able to read all that but my NP put me on molybdenum for my CBS mutations. She said between 100-400 mcgs.

    I just started on 100mcg methylfolate last week so can't report anything else.

    I also take 1000 mcg MB12 and HB12.
  3. topghetto

    topghetto

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    Ooo, how long have you been supplementing molybdenum before you introduced the methylfolate? :)
  4. minkeygirl

    minkeygirl Senior Member

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    I started last November. I never noticed an issue with sulphur foods and there was no real way to test so se decided I should just go for it.

    I have an appt this Thursday. I'm going to ask her then if I should continue with the molybdenum and when I should up my methylfolate.

    She also did not have me change my diet and eliminate foods.
  5. topghetto

    topghetto

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    Ah, I see. Thank you for sharing that with me. Good luck!
    minkeygirl likes this.
  6. topghetto

    topghetto

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    Hi @caledonia

    Do I address the BHMT mutation while I do the CBS protocol or is it only after the CBS issues have been addressed? Any sort of input would be much appreciated.

    Kind regards,

    Farouk.
  7. caledonia

    caledonia

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    Wait until CBS is addressed. Otherwise the methyl groups from the lecithin (converts to TMG, which is tri methyl glycine), could cause problems.
  8. topghetto

    topghetto

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    I started taking it about 3 weeks ago so I will definitely discontinue the supplementation until the CBS mutation has been addressed. Thank you so much for your input :)
  9. topghetto

    topghetto

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    Sorry @caledonia

    I have one more question. I have been taking Acetyl-L-Carnitine and Rhodiola Rosea for over a year now to help me get out of bed, and Betaine HCl for issues with stomach acid. I was wondering if it is okay to still supplement these whilst doing the CBS protocol? Thank you so much for your time
    Last edited: May 28, 2014
  10. caledonia

    caledonia

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    Check the Free Thiol list (linked in my signature) to see if they're ok.
  11. topghetto

    topghetto

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    Well, they are not on the list of supplements to avoid so I will assume (and hope) it is okay to have, thank you :)
  12. Grimace92

    Grimace92

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    I know Im late to this post, but wanted to chime and say I believe Betaine HCL should be avoided while working on CBS. Betaine is in fact trimethylglycine, so that will contribute methyl groups that will get dumped down CBS and turned into sulfite, adding to your symptoms. Personally I have discontinued the Betaine HCL, and I am using swedish bitters (1 tsp before meals) to stimulate digestion, and it's working better for me than B-HCL ever did.
    merylg and Aileen like this.
  13. topghetto

    topghetto

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    Better late than never. Ooo, I guess that explains why my sulphate levels still have not dropped even though I have been doing the CBS protocol for almost a month. I'll look into Swedish bitters. Thank you so much for your input, Grimace92. It is highly appreciated.
  14. topghetto

    topghetto

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  15. Grimace92

    Grimace92

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    You're welcome Topghetto, glad to see you are still around to see the message, I hope it helps.

    I know for me personally, Betaine HCL was definitely ramping up my sulfur symptoms for awhile, before I knew what was wrong with me. I used the big capsules from Thorne, varying my dose according to the size of the meal, and it's clear to me now that the more Betaine HCL I was taking with a meal, the worse I was feeling. On occassion I would forget my HCL supps, and I actually felt a little better. That should have been a clue to reduce the Betaine HCL, but I'm a stubborn fool sometimes. I think I believed the B-HCL was killing pathogens in my gut, and the resulting herx was why I was feeling unwell in hindsight.

    Swedish bitters work great for me now. If you still have low stomach acid issues with the bitters, check to make sure your body has what it needs to make stomach acid. These are the most important off the top of my head:

    Unrefined sea salt: I like Celtic Sea Salt. It should be greyish and moist. If its pure white and totally dry, even if it says "sea salt", chances are it is highly refined and I wouldn't recommend it. Salt supplies the chloride for your stomach to produce HCL.

    Adequate zinc, magnesium, and B vitamins are also necessary to produce HCL. B1, B3 and B6 I think are most important for this purpose.
  16. Grimace92

    Grimace92

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  17. topghetto

    topghetto

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    Thank you so much, @Grimace92, it is hugely appreciated. Hopefully, the Swedish bitters will do the trick so I would not have to supplement anything extra, though, I am already taking chelated magnesium hehe.

    And indeed, great minds alike. Wish me luck! :)
  18. Grimace92

    Grimace92

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    I just wanted to follow up. If you find your digestion going downhill after switching from betaine hcl to bitters, it's possible you may need some betaine hcl with your higher protein meals (>15g protein). Very little acid is needed for low protein meals, and too much hcl can actually be counterproductive for high starch meals, which need an alkaline environment to digest properly. I'm getting off track a little, but one shouldn't mix high protein with high starch in 1 meal for this reason. It causes a partially digested mess to travel through the gut. I have found proper food combining to be very important for my digestive health.

    So yeah, you may need some occasional betaine hcl. Some people with chronic infections or something like pyroluria may not be able to produce enough stomach acid with just bitters. Pyroluria causes massive depletion of zinc and B6, so stomach acid production will be basically non-existent until it is treated. This is usually done with large doses of zinc (50-150mg daily) and active b6 as p5p (200mg/day). This has to be done slowly, as the chronic zinc deficiency will have allowed accumulation of heavy metals. The release of those toxins via zinc supplementation can be very unpleasant. In my opinion, everyone with symptoms that have led them to this forum should definitely be checked for pyroluria.
  19. topghetto

    topghetto

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    This may take a while for my poor head to take in all this aha. I eat about 130g of protein a day :$. Reason being is that I do a ketogenic diet, and I generally feel a bit better doing a keto diet rather than the high carb diet.

    You know how you mentioned that I should take a little bit of B-HCL if I feel like my digestion is going down hill when taking the bitters, should that be done only after I have finished the CBS protocol? I don't want my body to add any more sulfur to my sulfur pool aha
  20. topghetto

    topghetto

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    Hi everyone (including @caledonia),

    I have been doing the CBS protocol for more than 8 weeks now but, I cannot seem to get my initial sulphate levels (800 >) to (400 >). Though, about 4 weeks ago, Grimace92 helped point out that the Betaine HCl that I was supplementing has been stimulating my BHMT, which results in more sulphate being drained down the CBS pathway. The only thing that I can I can think of that would be causing my sulphate levels to drop, is that I don't supplement yucca because I had negative reactions when I tried it a few times during the early stages of the CBS protocol.

    I eat about 130g of protein a day. Is lowering ammonia levels also crucial for successfully lowering sulphate levels? Any input would be much appreciated, thank you

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