Some help, if possible..

[N otQuiteAntonio]

First of all, I just want to say that I realize that no one is going to be able to figure all of this out for me, and that I am going to have to do a lot of my own footwork.

Honestly, while it'd be awesome if someone could give me all the answers, even if it were possible, I wouldn't feel right expecting that from them, unless they were a doctor, being paid for their services.

I say that because this methylation stuff has the potential to be so thick, especially the more a person is affected by it, it really takes a lot of time, thought, and energy to properly figure out.

All that said, if you could just take a quick look at my list of mutations, and offer some brief insight, suggestions, what have you, that would be great!

Here they are:

COMT V158M +/-
COMT H62H +/-
COMT P199P +/-
VDR Taq +/+
MAO A R297R +/+
MTHFR C677T +/+
MTRR K350A +/+
BHMT 02 +/-
BHMT 08 +/-

Tested via 23andMe. Raw data ran through Genetic Genie.

I suffer from Lyme and a few coinfections, leaky gut, and multiple chemical sensitivity (I really seem to have a problem with salicylates, phenols, and histamine). I believe sulfur/ammonia is a problem as well, as large amounts of meat make me feel bad, to put it simply.

My reactions to these problem items range from the mental and physical - difficulty thinking, aches and pains, thirst, runny nose, dry, watery, irritated eyes. Mornings after reactions, I wake very dehydrated, and with blurry vision.

Because of these things, my diet is rather limited. I mostly eat chicken, fish, eggs, broccoli, asparagus, avocado, healthy fats and oils like coconut and avocado, ghee, nuts occasionally, green beans, cabbage, zucchini, and a few prepackaged mixes of veggies.

Not much fruit, because I am on what's known as a ketogenic diet, due to my issues with sugar.

I could probably eat some small amounts, but being that there is a carb maximum to maintain ketosis, sticking with vegetables means I am able to eat more/get more nutrition.

One medium-sized apple, or half a pound of steamed broccoli with some oil? Call me crazy, but give me the broccoli.

I would like to be on a "regular" diet, but I have terrible reactions to high sugar, carb items, even starchier vegetables. I do not know if it is fungal, leaky gut, a combination, but I can't.

Now, I realize that certain aspects of a high fat, high protein diet are bad, and that a number of the foods I am eating are high in chemicals I am sensitive to and/or create them as byproducts, but I just have no other options.

It is a case of if I eat X food it is bad for Y condition. If I were to adhere to all of the recommended diets for each of my conditions, I wouldn't be able to eat at all.

For years, I half starved myself to death, avoiding certain foods, because of some of my health conditions. For the first time since 2013, I have been able to get more than 2000 calories a day, thanks to being on a ketogenic diet, and without feeling like the foods are setting me back, aside from the chemical reactions.

My goal is to get back to a more traditional, yet still healthy, diet. But, I can't just yet.

That said, I would really like to work on the methylation issues, supporting for my particular mutations, while adding in a few more foods so that I can better rotate the ones that I have trouble with to minimize chemical sensitivities.

I figure that if I start to get the methylation cycle functioning properly, these chemicals will no longer be as much of a problem.

I have other issues to work on as well, which I am/have plans to once I get the methylation, diet, gut support, and detox pathways in order.

Lastly, I realize that this is kind of a lot to throw at people, I'm a total stranger to you, you all have your own lives, etc. I intended for it to be as short as possible. I tried. This is the bare minimum.

I am not asking for cures, just some quick thoughts and suggestions.

I have done a lot of my own research. The popular mthfr websites, heartfixer, etc. I have other health forums I am receiving help from. BUT.. I've been told that this is where the methylation experts reside, so here I am.

Again, just a quick comment, if you can manage. Really appreciated.

Thanks!

Also, methylation-related supplements:

FOLAPRO - 800mcg
Adeno/Hydroxy (b12 50/50 combination) - 2000mcg
GABA 500mg three times daily
Seeking Health's multivitamin
TMG, but stopped due to reactions. I have read that some are sensitive to this, depending on mutations.

Powdeded yucca for ammonia.

I have noticed headaches from the folate and b12.

I have other stuff planned to be taken, but wanna see if any of that aligns with what is suggested here.

Again, IF you can offer a little help, thanks. If not, understandable.

Will check back after work tonight.

 

[Snowdrop]

You might find some useful info here: http://forums.phoenixrising.me/inde...e-results-and-starting-supplementation.26912/

And there are whole sections here in the forums I believe dedicated to Lyme, leaky gut and MTHF/methylation. If you find you have some more specific questions you could ask in one of those threads or start a new one.

I know @Valentijn is very knowledgeable about genetic data too.

 

[prioris]

It isn't too much to comprehend.

Yasko would say you have the most common worse case methylation scenario. I have somewhat similar situation. i haven't solved it. I am putting the methylation on a back burner for now but i am currently researching for a back door method to help with methylation. The front door is not working. Push comes to shove, I will go get some more testing to figure out what my level is of the things that interfere with methylation. I get over methylated when I take any b12 or folate hence anxiety and migraine. the sickness wear off within 24 hours.

 

[alicec]

Genetic Genie bases their analysis on Yasko who is not a reliable source of information. She has made serious errors about several SNPs, promotes others which have little or no effect or for which there is no research and promotes myths based on dubious assumptions.

Of the SNPs you list, COMTV158M definitely slows the enzyme though the effect of +/- is not large. Magnesium is the co-factor for this enzyme so supplementation may help to stimulate a sluggish enzyme.

The other two COMT SNPs have little effect.

Sometimes with COMT it is combinations of SNPs that have an effect, but you need more info than Genetic Genie gives to follow this up. There is a thread about COMT here plus other threads on PR.

It is a myth that COMT SNPs mean sensitivity to methyl groups. Certainly people do have these sensitivities but it has little to do with COMT.

The MTHFR and MTRR SNPs definitely slow these enzymes. The former could limit methylfolate formation and the latter methylB12 recycling. Supplementation with methyl folate and methylB12 could be advantageous but it would be wise to start with a low dose and build up slowly. Adverse reactions are not uncommon. You may need to vary the combination you are taking.

There are many threads about methylation protocols on PR.

In addition vit B2 is a cofactor for the MTHFR reaction so ensuring that you have adequate amounts of this and other B vitamins would be wise (the group acts synergistically).

The other SNPs you list have little effect.

 

[Critterina]

My first reaction is that if you have leaky gut, then all the methylation in the world won't be enough. There is a test called the lactulose-mannitol test that is definitive for leaky gut (a.k.a. intestinal hyperpermeability). I would recommend the test if you haven't had it and if it's positive, then start a 4R gut rebuild program. You may have to do a gut rebuild from time to time.

And if you don't have funds for the test, a 4R still isn't going to hurt you. But it will take a long time, because the first step is to eliminate everything you're sensitive to. For me, that meant about 6 months on an elimination diet, and not the kind where you test something and add it back it. Everything but the core foods get tested and not added back in. And that's just step 1.

I did a combined steps 2-4 for two months and then a week of Christmas eating before my lactulose-mannitol test and was between 1-2 standard deviations in the test result, plus had extremely improved bowels. Shortly thereafter, I did my doctor-recommended fast, which improved my health considerably. But my doctor warns that fasting is not recommended for everyone.

For me the important SNPS you have are only:
VDR Taq +/+ (getting enough sunshine?)
MAO A R297R +/+ (probably not depressed, or if you are, the Folapro may help)
MTHFR C677T +/+ (you're already taking Folapro)

Best wishes on your journey to health!
Crit

 

[alicec]

VDR Taq +/+ (getting enough sunshine?)
MAO A R297R +/+ (probably not depressed, or if you are, the Folapro may help)

Sorry I beg to differ.

Yasko (and hence GG) alone report the common allele as risk and hence +/+. There is no research to support this but in any case, even for the other allele, the effect of the SNP is minimal. There are indeed SNPs which have a significant effect on the VDR (see this thread), but Taq and Bsm are not among them.

The MAO SNP is another for which there is lot of misleading info around. See here.

 

[brenda]

@N otQuiteAntonio

Hi and welcome. Your story sound so much like mine it is amazing! I also have Hashimotos though.

After many attempts at methylation l gave that up and realised that l must concentrate on fixing my gut and SIBO and am doing the Terry Wahl's autoimmune protocol instead of concentrating on sals, histamine and other problems and it has been the best thing although l would prefer to be keto but must eat a small amount of cassava for my thyroid. I have a cup of berries daily.

The big difference on this diet is the huge amount of veggies you have to eat, and l am boosting it by dried barley grass and juiced celery with parsley. The protein is lower than other keto diets. Higher good fats though. Very important to have grass fed meat and that means not grain finished so chicken is not as good as red meats.

She says that supplements are not needed when you eat this way. I have liver twice a week.

Healing has kicked in and l have many improvements.

 

[prioris]

correction
MTHFR A1298C +/-
MTHFR C677T +/-
is considered the most common worse case which i have
the VDR Taq helps chooses which b12 to take

 

[Valentijn]

@N otQuiteAntonio - I generally agree with what @alicec said above.

But I'd add that the MTHFR variations can be completely compensated for with a diet high in vegetables, which is what you seem to be eating. In that case, it's possible that supplementing additional folate is overkill.

I also get a headache if I add a high dose of folic acid to my high dose of hydroxoB12. But I keep taking the hydroxoB12 because it helps significantly with my chronic pain issues. So I just don't take the high-dose folic acid any more, and just get what's in a normal multi-vitamin.

Regarding your MTRR missense mutation at rs162036 (K350A), it isn't one I see here often. It's not particularly rare, however, and the research ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700092/ ) does indicate it's associated with an increased risk of folate-related birth defects in offspring, so probably does have a negative impact on folate levels or methylation in general. But it does seem to be milder than MTRR A66G and some of the other MTRR missense mutations.

So it's probably good that you are supplementing B12, since your meat intake is a bit limited.

 

[prioris]

you guys seem to be way more advanced than i am in understanding methylation. i just digested what was in the phoenix rising documents and some videos.

I'm still in my infancy in comprehending this methylation thing but my intuition says I need to approach it differently than those protocols. If I'm getting sick taking b12 and b9 then my body is saying - you must find an alternative door or approach it from a different perspective. when something works with me, i don't have side effects.

when i was trying antibiotics, i immediately stopped once i realized a couple were tearing up my flora. i wasn't going to rationalize that it was so called die off. so many people suffered. i went no further than 2 days. it took a week or more for my flora to recover. from those couple experiments i would never touch any broad spectrum antibiotic. narrow spectrum antibiotics i will be more open minded to like penicillin, amoxicillin and minocin which have minimal to no side effects with me. other than those three, i stay way from all other antibiotics. the effect of antibiotics on people will differ. they can be deadly for many people.

i would really like to experiment with all those nerve repair nutrients to repair the trigeminal nerve but most of the nerve repair supplements make me sick. benfotiamin and spingolin i have no problem so i will experiment with them.

i look at the genetic expression stuff for ideas on what i could experiment with. i wonder if taking the methylation tests to see what levels certain things are at may be worth it. maybe i may give it a go 6 month down the road.

 

[N otQuiteAntonio]

Thank you, everyone! I apologize for the late response! I passed out that night after work, and I have been a lot busier than usual lately, due to a number of doctors appointments, helping my grandmother remodel her living room, etc. Plus, what free time I have had has been dedicated to sleeping and/or feeling sorry for myself.

I do not mean to make excuses, especially that last one, because health should be, IS, priority, but sometimes life is life.

I had meant to get on earlier today, but after lunch, eggs and asparagus with coconut oil (whoooaa, sulfur town), I was hit with a wave of fatigue, and just could not resist taking a nap, no matter how hard I tried and despite the fact I'd only been up for a few hours. Normally, I would have forced myself through the exhaustion, but I have no outside obligations today. Well, I had intended on doing some health research, which I am.. albeit a little late.

Anyway, yes, the exhaustion, as well as waking very dehydrated, and with a slight headache. I've been doing some reading, and it is really reminiscent of the "hangover" effect. Some sources site acetaldehyde due to candida, while others point the finger at certain gene mutations, issues with the methylation cycle.

I am not sure. I have been on this diet for quite some time, which I imagine is very hard on candida. I have read that it can survive on anything, but no simple carbs, no sugar, as low carb as low carb gets, the candida has to be really struggling to survive. I also take high doses of biotin (8mg daily), which I have been told prevents the candida from going into its more resistant form (hyphae, I believe was the word). I have also dosed with powdered Nystatin and Diflucan before. Candida should not be a problem for me.

I hardly show many telltale symptoms. There are many that could be attributed to a number of my other conditions though. Plus, there's the fact that those other conditions often make it very easy for candida to become a problem, especially leaky gut.

Also, I should mention that I cannot tolerate alcohol, even in small amounts (such as what is in tinctures). It produces much brain fog, sinus and weird gut tingling sensations, to name the more pronounced symptoms.

I have also been noticing this when eating cabbage. I have wondered if it could be due to sulfites, pesticides, etc. BUT, I have come to learn that cabbage contains fermentable fibers or something called oligosaccharides, which reminded me of FOS, which are in some probiotic supplements, and seem to be a source of controversy among candida sufferers in that some say it is good and others say it is bad.

I tried a product containing FOS, and experienced similar symptoms to those I get with alcohol and certain foods.

That said, the more I speak on it, the more candida sounds like a huge part of my issues.

But, then there are the things I have done to treat it, and my notion that it SHOULD not be as much of a problem for me so as to cause such problems.

I have been on a diet strict for candida. I have treated. But, still, I have these problems which indicate an overgrowth. Why?

I wonder if it is candida. If so, what the heck more I could do to treat it? I have run down the list of available options.

I can't eat anything else. I can't eat less. I am running on the basics, things which should have starved candida down to nothing a long time ago, especially to the degree where I shouldn't experience side effects from eating things like cabbage, carrots, avocado, etc.

It is thoughts like those that make me question whether it is candida. I have heard that cabbage is good for an overgrowth, as the bacteria combat bad fungus. Though, the oligosaccharides make me wonder.

Either way, healing my gut more is something I would like to pursue. I just do not know what more I could do beyond what I already am (diet, glutamine, and probiotics - S. Boulardii and Prescipt-Assist). You mentioned the GAPS and/or SCD diet, I believe, which I have heard a lot about, and have looked into. The thing is, they both contain many things I either have a problem with or am very likely to. Namely, fruits, sugars, starchier vegetables, and even some grains, I believe, at least one of the diets des. I will look into them again to refresh myself.

I also do not know whether or not healing my gut would alleviate my methylation issues. It might for you, but we could be dealing with different things, and to different degrees, despite our similarities. I have also read that healing the gut could take months to years, especially if SIBO is the culprit. I am willing to take months or years to heal, but I do not know if I can live with the methylation issues that long to find out whether it is just a matter of my healing my GI system. I would like to treat methylation somehow now in combination with the gut.

Such a tall order though. So much ground to cover.

I also have read that offending foods and whatnot have to be removed from the diet for true healing to begin, and not just in terms of things that feed overgrowths or are damaging to the GI lining (such as lectin-containing foods), but also foods that one has sensitivities to, because they promote inflammation. Those foods are ones I am eating now, but cannot remove, because again I have no other options.

That said, how can I heal my gut to heal my methylation issues, when to heal my gut.. I have to address certain issues that are more than likely caused by methylation defects? Does that make sense?

Oh, boy, what a mess. lol

That is exactly what I am trying to do as well, prioris, pick and choose products, try them out, and go from there. It is just the fact that there are so many things recommended for every snp, and a process to taking those things (i.e, if you start one thing before another, it may not work and/or could be damaging), that it is such a toss up as to which direction I should head in.

Valentijn, thanks for the information. Regarding my meat intake, would you consider 12+ eggs a day, over a pound of chicken, or a pound of salmon a day limited? These are regular numbers for me. I feel like that is high. edit: I do not eat ALL of these on a daily basis, but rather eggs one day, chicken the next, and so on.

Also, one of you pointed out the fact that I should avoid eating animals who were fed a diet of grains. I KNOW! I wish I could find and/or afford a steady stream of such products, but I cannot. It is either a matter of stores simply not having such items or having such a limited amount and being one of the town's sole providers that they charge insane amounts.

I am working on getting to a more accomodating city, but my health is standing in the way of that. I cannot go back to school like this. I can barely treat (poorly) and get my basic life affairs handled. It sucks.

The possibility of going direct to the source has been mentioned, but I have looked into this, and all the providers who are "out of network" so to speak are actually part of a network, and charge store prices for their goods. There are no "farmers market" prices going on.

Plus, as far as some things go, such as goat's milk, state laws require that they be treated in ways that damage the milk, which sucks. I really wanted to try some goat milk.

Anyway.. I know I am dragging on here, and all over the place, so I will go. I guess I'll start from the bottom again, regarding my methylation issues, genes, etc.

CBS/BHMT/COMT, I believe is the starting point.

But.. yeah, thanks, guys! I will use what you have provided to the best of my abilities.

 

[N otQuiteAntonio]

Thank you for reminding me of that test @Critterina. I had planned on trying to get one, but forgot after one of my doctors refused it to me. I will have to try again, and on my own (if possible, money and access permitting).

That said, I will look into the 4R program, even without the test. I also want to mention that one is new to my ears (eyes). I am surprised I have not heard of it, all the time I have spent looking into the various "healing" diets out there.

@prioris, as much as I would love to be on a combination of strong abx to murder my infections, I know that they would also kill my gut, which sucks, because I do not know if I will succeed going the herbal route.

Though, I do know that a lot of what is preventing the herbs for Lyme/co from working properly is the gut, methylation/detox pathways, which is why I am here.

Detox pathways reminds me, it has never been mentioned to me elsewhere the existence of Genetic Genie's DETOX PROFILE. All anyone has ever mentioned has been the methylation profile.

I just checked out my detox profile, and apparently I am a victim of the SOD2 A16V mutation. Homozygous. I see there have been some posts made referencing this, so I will check those out.

Anyway, apologies for not replying to all in one. I am forgetful, and there is much to go through. You understand.

I have read everything and will go over the response more as I look into the things mentioned.

 

[prioris]

I would suggest you could try using NAG supplement to help rebuild the colon wall. It is used in Crohns disease.

 

[outdamnspot]

@N otQuiteAntonio

After many attempts at methylation l gave that up and realised that l must concentrate on fixing my gut and SIBO ...

Hi brenda, can I ask what happened when you tried to fix the methylation before the SIBO?