Home › Forums › MTHFR Support Forum › General Discussion › Conflicting Advice for b-12 COMT +/+ and VDR Taq +/+ and MTRR A66G +/+
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Hi!
I’ve been reading for a few days straight and I’m at a loss. I tried the ask a physician forum but its closed.
I guess I’m looking for any advice- has anyone else had this conflict?Where because of my COMT V158M and COMT H62H being AA +/+ and TT +/+
and my VDR Taq AA +/+ I’m reading I should stay away from Methalated B-12 and methyl donors.
but then I also have MTRR GG +/+ which the reading I’ve done and reports I have say to take methyl b-12 for…
I also have CBS C699T AG +/- and am not sure how that plays in.
My symptoms are chronic fatigue- drowsiness beyond description, joint pain, lack of ambition or will to do much, foggy brain, confusion, exercising makes me more tired the next day – except yoga but its hard for me to initiate much. anxiety and panic attacks, social anxiety, mild depression and more.
I’m thin with very low muscle tone and feel like I’m just going through the motions of my day.
I’ve seen Dr’s but non that specialize in this area. Guess I’m looking to see if anyone has advice, suggestions, has this combo of abnormalities etc.Thanks
MelissaI dont doubt that u r confused
rule #1: treat the person, not the snps
Rule #2: follow rule #1
History and testing will point to the root causes and downstream effects that are leading to your symptom \complex. The snps will give some guidance, but not as exact as you would expect.
You need to work with a practitioner who can put it all together…the snps u mention do not “cause:” your symptom complex. More investigation is necessary
Dr Jess.
Hi Melissa,
I share your SNPs, but Im 57 so have walked the crazy of waxing and waning estrogen that comes from COMT homozygous; tough years. So, I know that focusing on anti-inflammatory foods is key. It’s the boring stuff, but you will rap a clear brain if you can follow. Chocolate and wine on Sat nights only when you can sleep in (minimum). Other than that, stay with anti-inflammatory foods, exercise and keep blood sugar level with proper snacks.As you have CBS SNP, consider Sodium Potassium butyrate to clear ammonia. I like hydroxy B12 5 days per week, pulsed with lithium orotate 2 to 3 times per week for myself with homozygous COMT.
I would recommend a book by Datis K called “Why Isn’t My Brain Working”. The title is misleading, but its full of good info.
Diet– Low grains, and definitely no gluten or soy or yeast foods.
Yes, I learned to stay away from direct methyl donors and instead upped my creatine and sunflower lecithin (very slow on the sunflower lecithin as its “secondary” a methyl donor).
I ended up in hospital when I took 1200 mgs of SMAe after being suggested by Amen clinic after SPECT scan. I lived and learned. The ride in the ambulance was embarrassing; brought it on with SAMe. My gut pain was so severe that I had a vasovagal response that caused me to pass out on sidewalk in front of Bloomingdales with my daughter in stroller. No SAMe for me with my COMT homozygous, ever.
I augment with daily dose of Vital Nutrients prenatal (even though there is no way I would ever get pregnant; full supplement is best way to cover bases), and Emulsified Apex Energetics Turmeric and Resveratrol. I would suggest a smoothie that is rice protein based with coconut milk and frozen blueberries, augmented with GI support, omega 3 fats, pre- and pro-biotics and glutamine. I like ProThera for these things.
So, I can’t advise you directly, but I can tell you what I do. I would recommend that you work with a Practioner.
CynthiaCynthia and Melissa, I also have COMT V158M +/+, COMT H62H +/+, MAO-A R297R +/+, and VDR taq +/+ status. It seems that at least the first 3 will cause issues with TOO MUCH dopamine, serotonin and norepinephrine in the synaptic cleft. I was also diagnosed with ADD, which I don’t understand in the first place because I should have more than enough of these NTs. I’m also confused because people with COMT (met substitution) SNPs tend toward ADHD and anxiety, but it would seem to me that the treatment for ADD, intended to further INCREASE NT in the pre-frontal cortex to help with attention and executive function, would actually WORSEN my problems. This would seem to make matters worse. Now I have concerns about taking Vyvanse.
I really have NO symptoms besides difficulty with attention, horrible thought jumbling/working memory, some anxiety, mood swings and, probably some impulsivity.
Melissa, do you think the same recs for hydroxy B12, lithium orotate, and especially the sodium potassium butyrate (I’ve never heard of this) would be appropriate to try in my case?
Thanks!!!
Homozygous SNPs
COMT H62H
VDR Taq
MAO-A R297R
BHMT-08Heterozygous SNPs
VDR Bsm
MTRR A66G
MTRR A664A
BHMT-02
AHCY-01
AHCY-19Hi Lyla1613,
As particular supplements may help one person but harm another it is always wise to work with a practitioner who can advise you on what is appropriate for you.
This is a very individualized form of treatment and further testing may need to be done to ascertain if a SNP is expressing. It is the expression that is treated when necessary not the SNP. Don’t try and fix something that may not be broken as you may break it in the process. There are many other factors besides SNPs that may play a part in causing symptoms and while the report from Sterling’s App is helpful to practitioners it is just one diagnostic tool of many used by practitioners.
Please consider connecting with one of the practitioners here http://mthfrsupport.com/find-a-practitioner/Lea
I get that you have to post that kind of response, Lea. I am an Integrative MD. I get the neuropsychobiology behind this and am in the early phases of training to provide help to my patients who are increasingly undergoing gene mapping. I seek to first understand how this combination of SNPs, expressed or not, may explain MY symptoms as this very much helps me to thoroughly comprehend the pathways. I’m not going to go buy anything Sterling or any forum participants post here, but I would like to know what people do use for various SNP/symptom combinations as well as how they’ve responded to it. I imagine the point of this forum is information-sharing and that is what I’m attempting to do as a PART OF my training. Thanks for your recommendation.
Cynthia thanks so much for your response, I almost took Sam-e a few years ago thinking it would help my energy levels but got scared off because of the warnings on the label. glad I never took it I have a feeling I would have had a bad response also!
So I have NOT added many supplements in yet – I’ve been trying to find ones that include the amount I want in as few pills as possible and am finding seeking health seems to have many formulas for people who can’t handle methyl donors. I’m going to try their hydroxy b12 lozenge with their “B-minus” complex which has no methyl donors in it- I also found I don’t metabolize vitamin A from beta carotene well. so a few things I’m going to try next are
Hydroxy B-12
NAC
Omega-3 (pro-omega nordic has with more EPA?)
D3 with K2
and a mult-vitamin seeking health has with the retinol version of A and no excitable b12
Tumeric/black pepper with resveritrol- I hear they work in a synergistic way (a new study came out about it not too long ago)
and DIM I think Naturesway has a great looking DIM product to help keep healthy estrogen levelsI don’t know what to do about L-methyl folate on one hand I feel I need it and on the other its a methyl donor but I think if I add some in last and maybe counter it with a high amount of niacin it might help?
I have tried taking niacin recently and felt calmer after.
Since writing this I did go gluten free – mostly grain free, jumping on the paleo band wagon. my head feels a little less foggy with just this step- I can’t wait to figure out how to get my whole body to wake up- I finished a graduate degree in September but I feel like I was foggy and asleep the last two year – I don’t know how I made it through.
I am working with my Dr. but she doesn’t seem to know a whole lot about any of this – She’s supportive though so as long as she doesn’t roll her eyes at me trying things I’ll stay with her. She know’s I’ve gone the conventional route with her and nothings really worked. so I do think I have to attack these symptom at their root- my DNA – diet and supplementation.
What have you guys done to get enough folate? what was your experience using turmeric as I think that’s also a methyl donor? have you given up caffeine? I switched to tea but it didn’t make a difference- think maybe the next step is getting away from caffeine altogether.
Oh and I did try Lithium Orotate and stopped because I was getting weird eye twitches. may be because my body was adjusting though so if I try everything and still feel I need something to balance me more I may try it again last.
So this is where I’m starting – lots of fiber- flax in smoothies too and cooking grain free most of the time.
Again thanks for responding I’m sorry I didn’t check back for the responses sooner!
Oh also the grain free diet is for more than my genes!! anti inflammatory grain free is helping my IBS too- I get cramps so severe its like a sharp razor blade is rubbing the inside of my intestines- so if this diet helps the inflammation in the rest of my body too it would be a major perk- It feels like its starting too but I’m not strict enough with it I think. I’ll update.
Also I do agree I don’t want to treat an SNP that’s not broken- but if I have a symptom for 10 years plus and it correlates with some of this new information – I don’t think a good diet and taking a supplement short term will hurt- has anyone else hear of turning on SNP’s that are not expressing? For all I know I may have turned these ones that are on on accident maybe by taking too much vitamin D a few years ago before I had this DNA test done? That’s def. something I’ll bring up with my Dr. But If I try a supplement and feel funny or worse I’d def. stop taking it. I appreciate all the answers as well as the concerns- I really hadn’t even considered that.
Thanks!!
MelissaHi Melissa,
I have informed Cynthia that you have posted again here and appreciate your patience in awaiting a response.
Lea
Hi Melissa,
Sounds like you are B6 and zinc and magnesium deficient, and may need some upper GI support. Can you contact me off line at c.smith@lifezonewellness.com? Also, please include your Variant Report in the email. What is your TCN SNP status?
CynthiaThanks! I sent an e-mail from my g-mail account because I check that more often – this was getting updated from my yahoo. Mt report is limited- I don’t think my TCN SNP status was included. I would consider doing further testing though.
Hi Melissa,
I have forwarded your post on to Cynthia as the practitioners are not always able to check the forum and respond immediately due to their work/life schedules but do their best.
Lea
Hi Melissa,
If you do your 23andMe test and run resulting raw data through Sterlings App, you can get the status of TCN carrier protein SNPs. Besides taking the sups mentioned above, you may want to work with someone who can administer a GI Effects test and other tests that reveal you vitamin and mineral status (e.g., NutrEval, Spectracel, OATs).
Its usually “safe” to start with a MultiB, sans b12 and Folate, and a multi mineral and lithium orotate (2 days per week). Check out Seeking Health. Supplements however, will not address all health issues, hence some basic testing mentioned about. Sleeping properly, eating properly, pooping properly need to be addressed first. -
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