CBS mutation · GAPS diet · Lyme Disease · MTHFR · Paleo Diet · Sulfur intolerance

MTHFR / CBS protocol help?

 

 

 

 

imagesFor all my MTHFR mutation followers and friends:  Anyone out there doing a CBS mutation protocol that is working for them?  If so, please let me know any protocal, supplements, or diet changes that have helped.  I’m going to be writing an expanded post with my treatment plan soon but I sure am having some problems getting my methylation going again. Basically I’m doing this:

CBS Support: molybdenum, charcoal 2-3x week, low “free thiol” sulfur diet for over 2 months now, limited animal protein (3-5oz/day), no grains/potatoes right now (still mostly GAPS/paleo diet).

Short cycle (BHMT mutation) support: GABA-calm (Yasko), GABA, Equilibrate (TMG, L-theanine, 5HTP, L-tryosine, methionine combo. It has a small amount of B6 (20mg) so I’m hoping it won’t upregulate CBS too much)

Methylation support: small amount of methyl B12, hydroxyB12 drop, lithium, homeopathic detox drops, methylated multivitamin formula

Nutrition general: ATP fuel (Vit 3, L-carnitine, CoQ10, mitochondrial support), zinc, digestive enzymes, vit C, probiotics, fish oils

Yasko results: MTHFR A1298C+, CBS 699T++, MTRR ++, COMT-, VDR Taq +, BHMT 2,4,8 +, MAOA +

I’d love to hear what others are taking that is helping.  Also what foods seem to make things worse.  There is so much confusion on eating a low sulfur diet vs a low free thiol sulfur diet.  Also different opinions exist on Ammonia support for CBS++

2015 UPDATE: After a year on a low sulfur diet, along with moderate daily doses of molybdenum, I feel like I’ve got a good hold on the sulfur issue.  I just avoid high sulfur foods most of the time, keep my methylation pathways clear with homeopathics, methylfolate and B12.  I think stress is the biggest factor that affects this pathway as stress directly affects ability to drain anything that is unwanted from the body.  So from now how my first advice of what to take for sulfur/mthfr issues is a “chill pill”  🙂 We can affect our mutations most with epigenetic approaches, not hypervigilant research trying to “fix” our defects.

15 thoughts on “MTHFR / CBS protocol help?

  1. Hello, Cathleen: I found your blog today and am so glad I did. Our lists of mutations are identical (so long as the MTRR SNP in question is either A66G or A664A and “COMT-” means no COMT positives)(either way, very similar mutations).

    Only yesterday I began to explore moving away from high-sulfur foods on an already highly-restricted diet. I do take SAM-e (200 mg Vitacost brand) first thing every morning, and it calms me incredibly, but I still struggle with poor brain function and system fatigue.

    Thank you for your work here. It is helpful and hopeful – I have no idea how I’ll be able to restrict these high-sulfur foods when they are the core of my diet, but it helps to not be alone as I plant more zucchini.

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    1. yes, the low sulfur thing is the headache of my life. I’m taking 1000mcg of molybdenum/day and my ND still won’t let me eat garlic and stuff. I”ve had major issues with detoxing my liver b/c of the issues so let me know if you find things that work for you!

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  2. I’m doing pretty much everything you’re doing. I’m also taking 3200mcg of methylfolate, 10,000 B12–a combination of methyl, adeno, and hydroxo cobalamin. It’s taken me 6 months to get here. I’m doing ok. Sleep issues still dog me.

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  3. Hi Cathleen, just came across your blog today. I too sound like I have a very similar list of SNPs as yours. I see this post was written over a year ago, and I’m interested to hear how your healing has been since? Were you able to figure out a protocol/diet that worked for you? I’ve been on a low/no sulfur diet for months now plus molybdenum, Yucca, and EDTA and haven’t had much improvement!

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    1. actually I realized I had SIBO and need to be on the FODMAPS/SCD diet that’s also low sulfur. I am just starting antibiotics for it. If you have had issues with absorption and gut you might want to learn more about SIBO (small intenstinal bacteria overgrowth). It’s a huge component to healing. I also do methyl B-12 shots 3x week which has made a huge difference and tons of detox- sauna, bath, homeopathic, coffee enemas. good luck

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  4. I’ve been trying different things since July. Daily, I’ve backed down to 1200 mcg methyl folate, 5,000 mcg b12 methyl/hydroxo/adeno combo, 1,000 molybdenum for a month and then down to 500 mcg in January, 200 mg SAM-e+1 mg melatonin + gaba at night, Emerald Laboratories “B Healthy” every other day, and Source Naturals Cilantro Metal Detox plus a teaspoon of organic chlorella.: http://naturalsociety.com/proper-heavy-metal-chelation-cilantro-chlorella/ . I’m starting to feel pretty good, especially since I increased my thyroid dose, by adding more straight T4 and reducing the Armour. The only dietary changes I’ve made is to avoid sugars, using stevia for sweetener, and avoiding dairy, gluten, and eggs. Oh–and everything is made from scratch and from organic/non GMO foods. I also go for a two hour hike 4 days a week. Sleep is getting better and better. I’m learning less and simple is more.

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  5. Hi. So glad I came across your blog. I have to confess I feel so lost and panicked. I have mthfr a1298c + and cbs++ amongst other ones. But I feel so exhausted, my joints ache, my brain is sooo slow, and no one can help. My folic acid levels and b vit levels are so low and my homocysteine levels are high and I keep getting bounced from one specialist to another. No one knows anything about mthfr and they don’t care to. I’m desperate to get better.

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    1. Dr. Dan Purser wrote a book called “The 85% Solution” It’s all about MTHFR. He is an MD who helps people with hormone issues and MTHFR issues. He is based out of Utah.

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  6. Interested in what homeopathics you are using. I am working with a homeopath for chemical sensitivites and hope it will help me tolerate B supplementation. I have high homocysteine but any kind of methylation sends me into a miserable detox of headache, low blood pressure, brain fog, irritability, vertigo, frequent urination, and extreme photophobia. I have same CBS and other snps you listed except for the BHMT (2 and 8 but not 4). Rrecently a couple of days of pos-choline sent me into detox and I tested urine sulfates and they were >1200. I did low sulfur diet at one point and still had detox issues. I am searching for the fixes in cycle as it does not seem so cut and dried as go on low sulfur or find the right supplementation. Everyone is so different and I am very biochemically divergent (my words) when it comes to reactions. I have reacted negatively to almost every pharmaceutical I have ever taken and for past two years to most supplements. I feel my best not taking any supplements but the homocysteine lurks. Thanks for sharing your story and information!

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  7. Hi Cathleen, googled CBS mutation and found your blog! Do you have the homozygous or heterozygous mutation? My son is heterozygous so I am not sure if he requires the same dietary requirements etc., or if it is even considered something of concern. A doctor is looking into his case, however we are in Hong Kong and there really isn’t anyone who has expertise in this area. I have read that it is the first mutation to address.
    To complicate matters my son is also MTHR compound heterozygous as well as homozygous for MAO-A (rs6323) and MTR A2756G.
    I noticed my son doesn’t have as much energy as other kids. He has been diagnosed with sensory processing disorder caused by structural problems (compressed neck and spina bifida occulta) and is doing well seeing an osteopath. I have the hetero MTHFR C677T (haven’t been tested for other mutations but mostly feel ok), but my mum who has not been tested suffers from chronic migraines, hypothyroidism and folate anemia. I don’t want my son to suffer the way she has so any advice would be much appreciated!

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  8. I have compound heterozygous for MTHFR. I also have better CBS, almost ever MTRR mutation there is ( some hetero, some homo), BHMT 4&8, MAOA, MTR NOS VDRbsm +/+ and I think SUOX.My life is a nightmare and I’m keeping urine sulfates usually always < 800, often < 400. Doing Yasko " All in One" vit & mineral 2 x a day, Yaskoqs CBS/NOS kident support, Yaskoqs MTHFR Liver Support, probiotics, BIND detox, fish oil, pancreatic enzymes,turmeric, vit D, Synthesize brand L theanine, and for my low progesterone & estrogen supplements as well as phosphatidylserine for my ridiculously high cortisol levels. I work with a doctor of chiropractic who also has a degree in human biology, acupuncture and sports medicine. I am constantly irritable, depressed and anxious so my psychiatrist has me on antidepressants ( don't seem to help), benzodiazepams and gabapentin. I really just want to go to sleep and not wake up. Am I the only one suffering with depression/ anxiety this bad ? It's been a life long struggle.
    Thanks for responses

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    1. I want to give u hope. Not offend u. Here’s my advice from my own experience of what helped me the most. Read “the biology of belief” and forget everything u think u know about your genetics. It’s a rabbit hole that only leads to depressing anxiety bc it makes u feel powerless. The truth is u are a powerful co-creator and there are things that influence your genetic expression far greater than any supplement. The difference between genetic expression and mutation can change life forever.

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      1. Thank you. I have been hospitalized 4 times in the past year for severe depression and difficult to manage anxiety and panic. I am also told I am high functioning Autism. You are right, it is a rabbit hole and it feels like a vacuum, sucking me in and sucking life away. Any other suggestions are welcomed. Kindest Regards

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      2. Hello! I am homozygous 1298 MTHFR, VdR Taq, 3 out of 4 MTR/MTRR’s +/- , heterozygous BHMT & heterozygous CBS C699T. I wondered which homeopathic remedies had been working for you. I am currently exploring a low-sulfur diet & also am recovering from Chronic Lyme. Many thanks!

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