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L-Methylfolate is a remarkable nutrient yet it can create significant side effects.

Those who have MTHFR mutations (especially the C677T MTHFR mutation) learn that methylfolate is critical to take – and that folic acid is critical to avoid. The issue is methylfolate can cause more harm than good if not started at the right time or tapered up slowly in amount.

UPDATE: June 25, 2019: I’ve gone through this article and thoroughly updated it. Surprisingly, it has held the test of time so not much has been added.

UPDATE December 7, 2014: Please read this article on how to prevent methylfolate side effects in addition to this one. I’ve since learned how to reduce the incidence of side effects even more.

There appear to be three types of responses to methylfolate:

FIRST: A person who can jump on methylfolate and feel absolutely wonderful. The only down side they experience is why didn’t they know about methylfolate before?!

SECOND: A person starts methylfolate has an amazingly incredible week where they are happy, interacting and alert. Then the second week comes and they switch to wanting to hide in a room by themselves or literally throw dishes across the room out of anger. Or they may become bed ridden from muscle aches, intense headaches or joint pain.

THIRD: A person takes a small amount of methylfolate and feels all the methylfolate side effects right out the gate.

Surprisingly, years later, this still holds true.

Methylfolate Side Effects:

[unordered_list style=”tick”]

  • irritability
  • insomnia
  • sore muscles
  • achy joints
  • acne
  • rash
  • severe anxiety
  • palpitations
  • nausea
  • headaches
  • migraines
  • nerves burning, stinging
  • runny nose

[/unordered_list]

If you experience any of the above methylfolate side effects, I highly recommend you discuss it with your physician and get your dose of methylfolate reduced significantly or stopped for a week or two before reintroducing it.

Some people just don’t do well with methylfolate at all – and it may be you – so don’t force it.

Gain a deeper understanding about L-Methylfolate:

Why does methylfolate create such an amazing week and then create such severe side effects so soon after?

It has to do with methylation, pre-existing inflammation, overall nutrient status and other genetic mutations which exist yet you’ve no idea they do.

This gets complicated quickly so I am going to keep it simple.

There are two three four 7 things you can do to quickly quench most of the methylfolate side effects:

  1. Exercise mentally or physically (new)- be using your brain or your muscles, you’ll burn through methyl donors. When I’m on stage presenting, researching or learning something for the first time, I notice I have to take more methylfolate. While the opposite is true as well: When I’m on vacation or just doing something that’s easy, I do not burn through much methylfolate. Exercise increases the utilization of methyl donors so get after it. Go for a run or lift some weights or play some sports – just don’t bulldoze anyone 😉 If your child is going nuts on methylfolate, get him or her outside and kicking a ball around or chasing butterflies. Seriously. Run ’em.
  2. Consider 50 to 100 mg of niacin as nicotinic acid. Why? Niacin is broken down by SAMe. This means that excessive SAM is quenched by taking niacin. Niacin also helps transform folates – especially unreduced folates. There are many other things niacin does as well – beyond my understanding. I continue to look for them and will update this as I learn more.
    • NOTE: You may experience flushing for 20 to 30 minutes. This is not harmful. It simply makes you feel ‘warm’ everywhere.
  3. Consider liposomal curcumin to help quench inflammation. If one takes methylfolate before inflammation is controlled, the methylfolate will worsen it.  One may consider taking 2 capsules of Optimal Turmeric three times a day during times of inflammation.
  4. Consider Hydroxocobalamin as it is an excellent sponge for reducing nitric oxide levels. Methylfolate increases nitric oxide levels – which is why it is so effective in reducing headaches, pain, cardiovascular disease risk, thrombosis, preeclampsia, periodontal disease, etc – but at the same time, excessive nitric oxide levels are harmful as they end up producing serious radical damage via peroxynitrite. Hydroxocobalamin quenches nitric oxide quite effectively. Hydroxocobalamin also works to reduce hydrogen sulfide levels (great for those with high sulfate-reducing bacteria or sulfur-smelling stools/diarrhea).
  5. Limit intake of leafy greens until side effects go away. This is because leafy green also contain methylfolate and nitrates.
  6. Electrolytes – as methylfolate increases, so does cell division and when that happens, electrolyte deficiency can occur. Taking Optimal Electrolyte helps knock out some of these side effects. There is also some niacin in the electrolyte blend. The added potassium and magnesium in active amounts are very supportive of reducing side effects. Given that folates may increase neuroexcitation in the brain, magnesium and potassium are key to help calm this down.
  7. Glutathione – as cells divide with more methylfolate, glutathione levels get further depleted. Restoring levels can help significantly. Do it SLOWLY though – a few drops. Consider Optimal Liposomal Glutathione.

“If I cannot tolerate methylfolate or methylcobalamin, what forms of each could I tolerate?”

I get this question a ton.

If this is the case, perhaps you need to just stop taking any form of folate and B12 for a while. You’ll need to evaluate with your healthcare professional.

The other option is to take other active forms of folate and vitamin B12 which are not methylated.

Since you are not tolerating methylfolate or methylcobalamin, then perhaps you’d do well without the methylated forms.

This is possible.

Folinic acid is an active form of folate that is not methylated.

Hydroxocobalamin is a recognized natural form of vitamin B12 that is not methylated.

You can get them separately or in a combination Hydroxocobalamin and Folinic acid lozenge.

The lozenge allows you to cut it into smaller pieces, easier to use as you don’t have to swallow a pill and more importantly, it allows you to dissolve the nutrients slowly which has the benefit of getting into your system better.

Another benefit? It allows you to remove the lozenge from your mouth if you’re not getting desirable effects – ie side effects. If you swallow a pill – that’s it. You cannot take it out. A lozenge you can.

As with any nutritional supplement, you need to talk with your healthcare professional. Some are more educated in nutritional biochemistry than others.

Long Term Solution for your MTHFR Mutation

Now that you realize that methylfolate may be actually causing you side effects, I’d really like to see you get on a full program vs just supplementing.

Reading my book, Dirty Genes, will help you immensely.

You’ll learn about MTHFR and how to use methylfolate in depth, yes, but you’ll learn WAY more than that.

Empower yourself and take action the right way.

Dirty Genes is the guide you’ve been looking for.

It continues to be a bestseller month after month for good reason.

Dirty Genes book by Dr. Ben Lynch

You’ll see why once you pick it up and start reading 😉

Don’t like reading books? Want to get more in depth and see how it all ties together?
Get access to the Dirty Genes Course where I discuss how food, lifestyle, environment, mindset and genetics are influencing how you’re feeling – and how to deal with it all.

The Dirty Genes Course is where I bring in a lot of published research, translate it and make it actionable for you. It’s an extension of the book, Dirty Genes. There is a lot of science, biochemistry and actual examples of how to use this stuff in your daily life.

Is it going to be over your head in terms of difficulty?

Absolutely not.

You’ll learn a ton and you’ll be amazed how easy it is to implement what you learn.

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Alina
10 years ago

Dr Ben,

Happy New Year!

I’m CBS A360A homozygote and C677T heterozygote. For the last 3 years I’m fighting lyme disease and co infections and had been taking lots of antibiotics and supplements. I’m allergic to almost everything now and feel toxic every time I ‘m taking any medication, vitamins, supplements, etc. I have lots neurological problems and my worse are dizziness, fatigue, leg weakness and numbness. I’ve been taking NAC for chlamydia pneumoniae and helps a bit but makes me tired as well. I understand that with CBS A360A I have sulfate allergy and I have to deal with this mutation first before trying the protocol for C677T. I’ve tried B12 spray before and had very bad reactions to it. Could you please advise what could I do to get better.

Thank you

Maghan Wankowski
3 years ago
Reply to  Alina

How did you find out about chlamydia pneumoniae? Was it through CD57?

Adam
10 years ago

Hi, sorry i havent had time to read the entire thread. I’m just wondering if you actually have scientific evidence to back up this method of lowering methylfolate side effects. I mean, it looks nice theoretically and all, but it’d be even better if there were actual studies about a) methylfolate side effects on both the physiological and psychological level; and b) using the methods mentioned above to help those particular side effects , and showing some kind of proof that it did or didnt work. thanks.

Adam
10 years ago
Reply to  Dr. Ben Lynch

Okay, reason I asked is because I seem to have a very adverse reaction to methlyfolate. It reminds me of how mentally ill I was in my teen years, and this has greatly spurred the idea in my head that perhaps im an “overmethylator” , or was at some point. Or for some reason very sensitive to methyl supplements. Now, if a person got adverse reactions from Methylcobalmin rather than Methylfolate, could they also quench the side effects with niacin?

Also, I’ve been taking a supplement with Calcium Folinate. Does this differ much from regular folic acid? I was guessing it was the best go-between from folic acid to 5mtfh.

What about hydroxycobalmin? Would this be the superior go-between from Cyanocobalmin to Methylcobalmin, or is it practically the same as one of those?

DO you have any suggestions for overmethylators (just some words or maybe some links if you already have the info somewhere here)? or is considering oneself an over or under methylator too simplistic and does genetic factors make the issue more compicated?

Also, is it possible that people could be sensitive to methylation due to other factors, such as mercury floating around in the body and becoming methylated? That’s a crapshoot I’m sure but it was this wierd idea i had in the back of my head which probably holds no credence.

Thanks a lot for the replies and hope to hear from you soon. I might try the methylfolate soon and quench it with Niacin but im quite worried.

Tonya
5 years ago
Reply to  Adam

Adam, did the doctor ever get back to you?

KeriB
5 years ago
Reply to  Adam

I think I may have the same issue. My doctor just prescribed this and boy can I feel it! And that’s not in a good way.
I feel over stimulated like never before. I don’t know about studies but wondered if others felt like this. I appreciate your reply

Michele
5 years ago
Reply to  Adam

Go to Mensah Medical -www.mensahmedical.com and you will be clinically TESTED via blood and urine which will show exactly ifnyou under methylated, overmethylate or have normal methylation, as well as low zinc, copper issues and/ or pyroluria. Both doctors are MD’s and their amazing work is based off William Walsh, PhD – he wrote book “Nutrient Power”. I find it’ insulting to have your excellent questions blown off by Dr Lynch as well as giving a “flip” rude reply. Shame on you! Furthermore, using niacin, a methyl steal IF you undermethylate is a bad idea. In fact, Dr Lynch I totally disagree with your approach and find it quite dangerous.
And I speak from experience with a son who severely undermethylates and has as done AMAZINGLY well under the care of Mensah Medical for the past several years. You would be wise to learn from both doctors – Judith Bowman and Albert Mensah as well as read the research of William Walsh.

Jan
4 years ago
Reply to  Dr. Ben Lynch

I would like to add that what is considered “normal” levels of anything is something which can vary from individual to individual.
This can mean that what level of a nutrient one person requires may be quite different from another.
We are all unique and complex.
This is an area for future medical study and research.
So to focus on any one nutrient is, in my opinion faulty reasoning.
You need to go by how you feel to a large extent until medicine catches up.

Bob
4 years ago
Reply to  Dr. Ben Lynch

Just before recently testing positive as a heterozygote, I took three capsules over three days of Thorne B-Complex #12 with 600mcg of B12 (300 as methylcobalamin), 668mcg of Folate (200 as methyltetrahydrofolate, 200 as L-5-methyltetrahydrofolate, and the rest as L-5-methyltetrahydrofolic acid), and 80mg of Niacin. I also took 3 capsules in three other days of Thorne B-Complex #6 with 100mcg of B12 as methylcobalamin and 80mg of Niacin. I’ve had some bad GI and sleep problems that doctors have left me high and dry with that lead me to try to figure out how to self medicate myself. I am STUPID for trying things like I did on my own, but coincidentally I just realized what my genetic test results meant as being a MTHFR Heterozygote, and just read (AFTER my exposure to this methyl stuff) about adverse reactions to it. I have been suffering chronic fatigue and mental anguish since I took this Methyl B-Complex stuff with Methylfolate a couple of weeks ago, and wonder if there is an antidote for the damage I’ve done??? Will this wear off and allow my system to get back to where it was, or am I stuck in this hell until I do something to counter it? I’m afraid to try anything at this point, but I need some relief badly. My appetite is gone and I have no more weight to lose. What little motility I had has vanished completely, and all my strength is being used to keep my sanity. I’m going to see the Psychiatrist who gave me the genetic test as a result of my medication intolerance, but I’m not getting to him for a couple of weeks and I only hope he knows how to deal with all this. Somebody please tell me that this will pass, my system will balance back out, and I will be back to the way I was within reasonable time??? Thank you for any positive feedback!!!

Michele
4 years ago
Reply to  Dr. Ben Lynch

With all due respect, some people definitely DO get side effects from methylfolates. Specifically those who are undermethylated because methylfolates increase gene expression of sert transport proteins resulting in reduced serotonin neurotransmission. Folates, methylfates and Dominic acidARE excellent methylation agents BUT for the person who has low methyl activity with low serotonin activity are INTOLERANT to any kind of folate including methyl folate. I am a undermethylator and also
Fall into this low serotonin as well as dopamine and norepinephrine activity. After two days on a methylfolate supplement I had a racing heart, extreme anxiety and felt depressed. I felt horrible. Likewise I feel the same on Niacine and I avoid it bc B3 reduces dopamine and acts as a dopamine reuptake promoter – hence lowering dopamine levels.
This is good for someone who overmethylates but a very bad idea for
The opposite group.
William Walsh has a date vase of over 30,000 chemical assays in this
Very subject. MTHFR genetic and related tests cannot predict the NET effect of
SNPS (mutations) that enhance or express methylation. – Lab tests that DO show the net effect of methylation and therefore making treatment extremely accurate are two tests – the SAM/SAH ratio test and a whole
Blood histamine test. An accurate diagnosis of methylation is essential to effective treatment.
I will add this – 10 years ago my son had 6 mental health dx and had bad reactions to a number of psychiatric medications as well as certain supplements. I remember Niacin and methyl folates completely destabilized him, as bad as any psych medication.
We found Mensah Medical and he was tested/ evaluated. He has a severe
Methylation disorder and undermethylates as his main inborn issue. Along with adding specific methyl donors and augmenting supplements, they lowered his
Copper, increased his low zinc and treated candida. His response was amazing – all of his symptoms stopped – he was no longer a psych patient bc his brain chemistry was healed. He has remained on his nutrient program; my sister and I – also severe undermethylators are being treated – all successfully and completely.
Perhaps there are many who treat patients with the MTHFR testing and have success. There were also many MD’s who believed my son needed psych meds and said the Walsh Method would/ could never work. Well it HAS worked amazingly for thousands of people who were desperate and like is, had tried everything. I just hope and pray someone who falls into the undermethylated, low serotonin activity, doesn’t seriously regress if given N3 or methylfolates and decide to hurt themselves. Induced depression by the wrong supplements can be as dangerous as taking the wrong medication.

Marcia
3 years ago
Reply to  Dr. Ben Lynch

Julie said “With all due respect, some people definitely DO get side effects from methylfolates.”

DUH. That’s the entire point of this specific webpage, but I guess you didn’t read the title of it.

As for Dr. Walsh and his cohorts, while I’m glad you did well, Dr. Lynch is correct — it’s too simplified to put one in the bucket of being an overmethylator or undermethylator.

Walsh states that there are five or six different ‘types’, which is also ridiculous, and says if (for example) one has ‘low folate depression’, then you will know you fit this category because you also have ‘high anxiety, panic, are non-competitive in sports, you have food or chemical sensitivities, a high musical or artistic ability, are an underachiever and have low libido’.

What if you’re artistic, bad at sports, but have a strong libido and no chemical sensitivities? Does that mean there’s ANOTHER category? Of course is, and probably a thousand more.

You stated that methylfolate results in ‘reduced serotonin neurotransmission’. That’s nonsense, with absolutely no published research to back it up. Methylfolate is a cofactor in the PRODUCTION of serotonin, that’s why it’s used (as well as folinic acid) to augment antidepressants.

If Walsh or Pfeiffer had any serious credentials, they would’ve published at LEAST a few studies backing up their hypotheses. You can’t say they didn’t because they didn’t have the money. Walsh has made a fortune off of the desperate who fall for his simplistic views.

Marcia
3 years ago
Reply to  Dr. Ben Lynch

Bob — I hope you’ve found some relief since you posted your horror story. I can relate, I wish I couldn’t.

One thing to mention — when one takes a b-complex, it’s very difficult to know what exactly caused the problem. It may have (and probably was the methylfolate), but it could’ve been the b-6 as well. There’s a thread online with hundreds if not thousands of people who had adverse reactions to b-6, even in tiny doses.

As for myself, I’m going to stop all methylating supplements for at least a month. I seem to do better with adenosylcobalamin and folinic acid.

Amy Habing
6 years ago
Reply to  Adam

Omg. Get a life. You want studies, then find them yourself.

Mar Sav
5 years ago
Reply to  Amy Habing

How completely insulting and incredibly unprofessional! Adam was making an entirely reasonable request for studies to back up your claims. It was a very smart and intelligent request. Your answer, on the other hand, leads me to seriously question your education and expertise. Why would you ever treat a person so poorly by making fun of them when they are simply trying to make an informed, educated decision about their health?! Shame on you-unprofessional!

5 years ago
Reply to  Amy Habing

I thought Adam presented good questions in a reasonable way. Your first answer was nice and professional. This one is just disrespectful. Makes me doubt your knowledge. Why get defensive? Just one more reason people have trouble with doctors.

Barbara Flowers
5 years ago
Reply to  Amy Habing

Well that is just mean. I am searching for answers myself and there are many ideas and Dr.s on the internet that say just the opposite things…confusing and some of us can not afford hiring a a physician to help. So try to be kinder to those of us who are suffering and trying to find answers please.

Barbara Flowers
5 years ago
Reply to  Amy Habing

Mean. We are hurting and searching for answers.

Shauna
10 years ago

Dr. Ben, if hydroxocobalamin is effective in quenching nitric oxide, I wonder whether it might cause problems for those with the NOS D298E SNP who may have impaired ability to generate nitric oxide?

This is important to me because several months ago I started 2.5mg methylcobalamin and 800mcg methylfolate and did really well: more energy, less pain, less brain fog. Then after reading some Yasko material a few months later, I added hydroxocobalamin, and now I’m not doing as well. There are a number of other factors that may account for the decline, but the addition of hydroxocobalamin would seem to be a possibility, given that I am heterozygous NOS. I may discontinue hydroxocobalamin for a while and see what happens. But would be curious to know Dr. Ben’s or anyone else’s thoughts on this.

Also, what effect, if any, does adenosylcobalamin (dibencozide) have on nitric oxide levels?

Shauna
10 years ago
Reply to  Dr. Ben Lynch

Thank you, that will be wonderful to know whether there’s anything relevant in the research. (I haven’t found anything, being limited to abstracts that turn up in Google searches.) The RS ID on the NOS SNP is RS6323.

Lawrence
9 years ago
Reply to  Shauna

I may be wrong, but my records on rs6323 indicate that it is not related to nitric oxide… my records show that rs6323 is:
Gene MAO A, Variation R297R, RS number rs6323, Alleles +G/-T (though Yasko says the alleles are +T/-G), Name monoamine oxidase A.

The only NOS snp that my 23andme records include is the following:
Gene NOS3, Variation D298E (G894T), RS number rs1799983, Alleles +T/-G, Name nitric oxide synthase.

Tonya
5 years ago
Reply to  Shauna

Curious Shawna, did the doctor ever get back to you with his findings?

Marcia
4 years ago
Reply to  Tonya

Tonya, Shawna posted her reply FIVE YEAR AGO. I highly doubt she’s checking this site for replies.

10 years ago
Reply to  Shauna

Shauna,

I’m not a doctor, just a C677T, otherwise, regular person whom has done a lot of reading on the subject of MTHFR mutations. I read something authored by Dr. Yasko that if a person’s lithium levels are low and they add hydroxocobalamin, the person might experience problems. She advised that it is best to get a hair analysis test done to check lithium levels first. If low, then get the lithium levels up before adding hydroxo B12. Lithium drives hydroxo B12 to the cells.

Shauna
10 years ago
Reply to  Kathleen

Kathleen, thanks. I have read that, also, and my lithium levels on UEE were off-the-charts high, which “dumping” pattern is, according to what Dr. Amy is seeing clinically, not unusual for those with MTR/MTRR mutations, which I have. (As if things were not complex enough, already.) Dr. Amy wrote a note for me to run HMT to check lithium that way. The only trouble with trying to follow the Yasko protocol is the financial burden. Supposedly lithium has to be within a certain range, neither too high nor too low, so we can’t just go supplementing without testing, which is bit frustrating. Thank you for the reminder. I do still need to balance lithium.

Jessie
10 years ago

Greetings! My 10 yr. old is compound heterozygous with normal B12 levels. It seems he can’t even handle 500mcg of L-5-MTHF without raging. His doc originally put him on 15mg of Deplin, then reduced it to 7.5mg, with both doses causing insomnia, anger, and borderline mania. We took 3 days off and then the doc started him today on 500 mcg, and he went right back into a rage (niacin to the rescue!). Any suggestions? We’ve been dealing with his mood disorder for 3 years, until we just recently got the MTHFR diagnosis. I had such hopes that we were finally on the right track, but today has been pure hell again. Any advice for what to do if even methyl can’t be tolerated at all? He’s been gluten/casein free for 7 months, eats a whole foods diet, and is in a very healthy home in general. Other than his unpredictable anxiety, rage, and ADHD, we are an otherwise stable household. All help and advice will be greatly, greatly appreciated.

6 years ago
Reply to  Jessie

Hi Jesse, sometimes the base line minerals need to be in place and the organs to elimination supported to be able to handle any detox that occurs when the methylation pathways are opened. I hope your son soon feels better

Dave
4 years ago
Reply to  Jessie

I recommend fish oil supplements. My son had a turn around using a gummy variety.

Genevieve
10 years ago

Hi Dr,

I’m very interested by your website but english is not my first language so it’s hard to well understand all the details.

I received the new that i’m homo C677T. My homocysteine, b9 and b12 levels are normal. I had 2 miscarriages this year following. Naturally, 3 years ago, I had 1 pregnancy that ended up because of trisomy 18.

I take a lot of vitamines including 5 mg of B9 daily since 2 years. During ivf, I also take 1 baby aspirin daily.

Do you think that’s enough if my homocysteine and vitamines level are ok. Or you suggest to take the active form of folate? Baby aspirin is enough to avoid miscarriage or should I take heparin or things like that?

It’s hard to lost baby… The ivf process is not that easy… And this new is an other difficulty…

Thank you so much for your advice and have a happy healthy new year!

Maryanne
10 years ago

Hi Dr Lynch,

I hope you can offer guidance!

I started OMV yesterday as I am waiting for my 23andMe results and thought this would be a safe place to start. I took one with breakfast and one with lunch. I was quite energised/jittery until the late afternoon but slept well. Today I have severe brain fog and am back to baseline motivation (aka none). I am confused whether this is a methylfolate side effect or if it sounds more like a sulphur issue set off by amino acids in the OMV. Is this possible with only 2 capsules yesterday? I’m so disappointed as I’ve been brain fog free for a few months although still fatigued. I hope it is transient.
I have ‘chronic fatigue syndrome’ and have had severe episodes of brainfog before. The worst following surgery and also while treating candida. I suspect I may have the A mutation although I have (slim) PCOS and that often correlates with some of the C conditions.

Dave Christensen
10 years ago

MY EXPERIENCE WITH OVER-DOSING

I used myself as a guinea pig and gave myself massive doses of methylfolate plus methylation boosters to learn the limits. I took them before bedtime. After a week I finally got too much. I experienced the feeling of my head being in a microwave, and he electricity racing in my brain. It was uncomfortable but no other problems. Taking niacin calmed it right away.

I believe that there are sensitive people who can get too much methylfolate with just a little. However I think that most people will only have good feelings. While your advice to start slow is wise, I caution you not to make the average person paranoid.

I have sent several people to your site and their reaction was to be afraid that they were going to hurt themselves by having half a mini tab, and they looked for symptoms with anxiety and expectation.

Knowing the power of suggestion, the placebo effect, I suggest that you first make it known that this is one of natures most wonderful vitamins that we need every day. People who get lots of it naturally in the Mediterranean diet with lots of fresh green are the healthiest, happiest most disease free people in the world.

People living on rural farms around the equator have about 1/10 of the diseases we have in America. Multiple sclerosis is unknown in rural India. Access to fresh greens every day of the year is credited for some of this. I’ve never heard of a population of people who suffered any problems from eating lots of greens or legumes.

On the other hand American’s health declines as we have less fresh greens in our diet.

This is only a food. You would not get paranoid over eating a second serving of spinach. Most people are only going to feel better for taking this. Life with serotonin is a thousand times better!

I am homozygous C677TT .

Expect to enjoy this vitamin! ☺

Michael_M_Dowdy
10 years ago

Hello Dave Christensen. I’m not a healthcare professional. Your comment is so true in most circumstances. But even natural and normally healthy things can have deadly potential. More specifically, spinach can be deadly to someone who is being treated with Coumadin/Warfarin for serious clotting issues. I have Factor V Leiden and MTHFR C677T++. I choose to treat my clotting issues with Aspirin because I am absolutely not going to give up healthy foods with vitamin K. I hope and expect to see Warfarin removed as an accepted protocol medication. Nobody will ever convince me that Warfarin, basically rat poison, is safe for humans. Respectfully, Michael Dowdy

Jenny
6 years ago

I’ve been on warafin for 27 years with no ill effects. Id take warafin over Xeralto any day. I’d much rather test regularly and know what my clotting factors are than leave it to chance. Plus they are now finding problems counteracting Xeralto in cases of bleeding due to overdose or injury etc

Long term aspirin use has loads of problems including issues with histamine intolerance.

Re eating a healthy diet, my original heamatologist told me to avoid iron and vit k rich foods and i ended up sick. All the heamatologists I’ve seen since have told me to eat a healthy diet, still be aware of vit k rich foods and be sensible about the quantities you eat, and your warafin dose can be adjusted when needed.

6 years ago
Reply to  Jenny

Hi Jenny, I am Factor V and MTHF and had 2 blood clots years ago. I am an RN. I am in total agreement with you about Coumadin!! I self test weekly and will stay on warfarin as there are no rescue drugs available for these new drugs. I had a hospitalization and needed to get a normal INR/bleeding time and there were several options-fresh frozen plasma and vitamin K are two. On the other new medications there is NO way to stop the bleeding quickly. Pradaxa has a rescue drug but not all hospitals can be guaranteed to have it. So, despite the fun commercials on TV, you and I are the safest!

JJ
5 years ago
Reply to  Jenny

Eliquis may work for you… my bro had a lower GI bleed on Pradaxa, but has not had any issues with Eliqus. Just an FYI.

Amy Brekke
10 years ago

Dr. I need a 2nd opinion. I went to a specializd antiaging natural doctor out in florida that I really respect and I wanted to go off of Zoloft and get on to something natural. After my extensive visit and through a series of strange techniques like pulling down on the arm of his nurse while he touch different parts of my body to see what supplements I would need, he put me on a regime that he felt would work best. I am now on and I hope you are familiar with the brands:
Cerenity 3 capsules 2 times a day
Gaia Adrenal Health (which I haven’t started yet because it was on backorder with his office) 1 capsule 2 times a day
5-MTHF 5mg 1 time a day
Corticare B 1 capsule 1 time a day
Omega 2 times a day
Vitamin D 2000 iu 2 times a day
Multivitamin
L-theanine 200mg 3 capsules at bedtime
Neuromag Magnesium L-Threonate 3 capsules at bedtime
Gaba Calm disolve one at bedtime for sleep

Now aside from the Adrenal Health, I began taking all of this as prescribed Nov 15th. I weaned off the Zoloft and I was feeling pretty good. Accept I noticed that after a couple weeks I started to feel a little more edgy and easily irritated/angered. Then 1 month exactly after starting to take these I began to get severe stomach cramping and diarrhea like every other morning or every 2 mornings. I thought at first maybe I was sick, but it kept persisting. I then thought maybe it is to do with some of the supplements. My doctor is very hard to communicate with because he is in Florida and he’s actually pretty popular and very busy, so while I did put in a request, his suggestion was to continue on the supplements and document what I eat and when I take my supplements and keep a diary of symptoms. I have tried to do this, but am sporatic with it. Anyway, I tried stopping the corticare b and that almost seemed to make things worse. (for my stomach) and then for 3 days now I went back on that and stopped the 5-MTHF and voila, no more cramps and diarrhea and actually I have a little constipation to be honest. But, since stopping that I do feel some anxiety and I feel reved up and have a hard time falling asleep. I don’t know what is going on with me. I hate it and I just don’t know enough about this to know what I should do. I thought maybe I could get a second opinion. Maybe it’s just too much 5-MTHF?? What do you think? Oh and plus the last 3 days I have also had a strange metallic taste in my mouth. Maybe unrelated. But, I just wish I knew.
Thanks for your help. I greatly appreciate it.
Amy (mom of 5 and need some help)

10 years ago
Reply to  Amy Brekke

Hi Amy,

I’m on this forum because I have C677T mutation. I wanted to comment on muscle testing. I find muscle testing extremely helpful and only use muscle testing to find what supps I need, as well as quantity. Magnesium has caused me gastro distress. Maybe its the magnesium that is causing your bowel distress??? Juicing more than once a day can also causes diarrhea. I had agitation and headaches too. It was from the methylfolate in my multi vitamin. Specifically, initially methylfolate didn’t bother me until taking it daily for about 3-4 weeks. We reach a point where we don’t need it daily (see Dr. Lynch’s podcast). I now take it every 4 days. Listen to your body and take it when you get the ‘feeling’ that you need it. Your body will tell you – just listen. It takes practice and trust in your intuition, together with a little trial and error when it comes to listening and taking action, or not (most likely you do this already). Hormone balancing is helpful, too. But take only bio-identical hormones. Dr. Lee’s Progesterall works very well and is natural. The estrogen you need to get from a doctor (I use an OB/GYN) and it’s compounded.

Kathleen

10 years ago
Reply to  Kathleen

Hello I hear this a lot about people saying magnesium gives them stomach distress there different types of magnesium 95% of the magnesium out there does go straight out your bowels the one magnesium that you need to get is called magnesium GLYniate doctors best Has a great magnesium GLY that is 100% absorbable And the beauty of it it gets into your cells which is where it’s needed instead of out through the toilet when it’s not wanted. We learned this from a natural path my daughter take 600 mg before bed I take 800 mg before bed it does not give us any diarrhea whatsoever in fact it has helped her migraines and my fibromyalgia immensely

Dianna Pele
6 years ago
Reply to  Renee

Hopefully you figured it out by now but this one of magnesium also hurt many people especially those overproduce oxalates I need to be on a low oxalate diet. I just find it so arrogant help people just go around and spout stuff off. What works for some people does not work for everyone. There are many different types of magnesium and each person needs to research the various forms and figure out which one works for them. Do you even know that that form of magnesium is sedating, while magnesium malate actually gives energy??

10 years ago

Dr. Ben —

I am heterozygous for the 677T and 1298C MTHFR variants.

My nervous system has been sensitized by antidepressant withdrawal syndrome since 2004 and I cannot take any B vitamins, they are too activating. This includes methylfolate and methylcobalamin. They will prevent me from sleeping, and I get little enough sleep as it is.

I try to eat green leafy vegetables every day, but you’ve stated this will be inadequate to compensate for compromised MTHFR variants.

How would you deal with this? Are there any precursors that would assist methylation, such as n-acetylcysteine, for example?

10 years ago
Reply to  Dr. Ben Lynch

Thank you, Dr. Lynch.

I have recently found about 150mg GABA with 130mg magnesium glycinate helps me get back to sleep. I take 100mg niacinamide every night.

You may wish to clarify https://mthfr.net/can-a-homozygous-mthfr-gene-mutation-can-be-managed-by-diet-alone/2011/09/28/ which, as I read it, says reduced MTHFR activity CANNOT be managed with dietary folate.

10 years ago
Reply to  Dr. Ben Lynch

Dr. Lynch,

That’s good to know. Please post a note when your B complex is available. In the past, GABA (I think it was GABA) has caused me to have headaches. Any idea why? What is a good alternative? In your opinion, is juicing just as good as ‘eating’ raw greens – say, in a salad?

Kathleen

Amy Brekke
10 years ago
Reply to  Iatrogenia

I take 1-2 GABA Calm disolvable tablets at night to help me fall asleep, I have also used them during the day to calm down anxiety and it works like a charm. Just thought I would put that out there. (Ps Orange taste better than mint)

Brian
9 years ago
Reply to  Iatrogenia

Hi,
I just read your comment about being sensitized from antidepressants. Are you saying that you are hypersensitive to anything that might stimulate your nervous system? I only ask because antidepressants and other psychotropic medications cause my symptoms to worsen (e.g. anxiety/depression). When I take them, I feel like my nervous system is being overstimulated and I can no longer tolerate most of this stuff, even at micro doses . I am set to start L-Methylfolate this week, but I am actually scared because of it’s potential side effects (anxiety, insomnia, irritability). I’m just wondering if I am now predisposed to the same thing. Would you mind if I asked you specifically what you experience when you take Methylfolate and B vitamins?

Fiona
10 years ago

Two years ago, my doctor started me on high doses of methylfolate (1mg) and methylB12 (1mg). My fatigue and depression were resolved within the week. Then, over time, I started to have severe anxiety and palpitations. I lowered my dose dramatically and felt better at that low dose. Then I ran out of the kind of pill that could be divided. So, I switched to a multi-vitamin from Thorne (Basic Nutrients V) that includes methylated forms of both of those vitamins. More anxiety, insomnia, palpitations. So I stopped taking it. Then, about a month later, I thought I should give it a try, so I took one. Within half an hour the anxiety and palpitations were back and I hardly slept that night. That was two nights ago. The anxiety is slowly fading. I don’t have the other things on hand to see if they will alleviate the symptoms. I don’t know what kind of mutation I have, if any.

Michael_M_Dowdy
10 years ago
Reply to  Fiona

Hello Fiona. I’m not a healthcare professional. We live in a time that our privacy is quickly disappearing. I prefer to know what’s wrong with me so I can hopefully make some positive differences for myself and others. Carefully think about the decision to be tested and weigh the consequences either way. It’s reasonable to believe that all of us probably have or will have some methylation problems since they’re currently studying only two of over fifty possible locations, specifically the 677 and the 1298. The mapping of the human genome was a huge undertaking. If you decide to be tested it can point you in the right direction to improve your health. Think seriously before you make a decision. You’re at the right website to learn about methylation problems. It can be overwhelming to learn of our genetic mutations. Dr. Ben Lynch and Seeking Health have provided tons of information. You can watch his videos here and on youtube that may influence you one way or the other. Wishing You All The Best. Michael Dowdy

10 years ago

Ten years ago I took a high dose of supplements (trying deal with depression). EM POWER PLUS they were called. When I was done with the supplements after one year, my sex drive was about 20%. It was always normal until I started taking the supplements. I thought it would come back but it never did.

I took a small dose of Deplin two days ago and my sex drive has been zero ever since. Stunning.

The supplement had huge amounts of folic acid. What happened to my sex drive initially? Why the amazing drop with tiny dose of Deplin?

Oliver Smith
3 years ago
Reply to  Joey Thompson

Hey, did it ever come back?

Rose CLaudia
10 years ago

Dear Dr Ben, I just found out that I tested positive for the Mthfr gene mutation, c677t, homozygous. My first question is does this mean that both of my parents had this mutation? My daughter tested positive also she is exactly the same as I. Does this mean it is likely that all of my children have it? How about my siblings? I am working with a functional med Dr, she has just prescribed supplements for me , but never mentioned the side effects that you speak of. I have not yet started the supplements I just received this news. Frankly I am confused about all of it. Any suggestions as to where to go from here? Thank you, Rose Claudia

Angeli L
10 years ago

Could someone please clarify when to take the niacin amd turmeric? I have been tested compound heterozygote C677T and A1298C. I began taking 250 mcg in the late morning- only to experience severe fatigue and drowsiness 4-5 hours later for the rest of the day. So, I stopped again until I have an answer to the following question:
Am I supposed to take the niacin and turmeric TOGETHER with the methylfolate, or am I supposed to wait 4-5 hours until the symptoms occur, and take it then?
Thank you!

Angeli L
10 years ago
Reply to  Dr. Ben Lynch

Dr. Ben,

Thank you for the prompt reply! I thought Niacin combats the sideeffects of methylation? I am getting drowsy and extremely fatigued from the methylfolate. I thought Niacin will help that? I don’t have insurance, and therefore don’t work with a doctor. I’d appreciate if you could clarify. Thank you!

JJ
5 years ago
Reply to  Dr. Ben Lynch

Old comment… but it is my understanding that niacin is great for OVERmethylators, because it REDUCES their high levels of serotonin…

Could you clarify?

Wendi
10 years ago

Hi Dr. Ben,
My daughter was placed on 15mg of Deplin by her psychiatrist 3 months ago after failing numerous antidepressants for endogenous depression and suicidal thoughts. Within 2 weeks her response was amazing. She went from nearly being hospitalized back to a typical 13 year old girl. Her psychiatrist had given me a copy of the drug study from his journal. It mentioned the MTHFR mutation and the more I read about it the more I was convinced she had to have the mutation. Long story short, I was turfed from genetics to hematology and both refused to do the test. I went to a local lab with a prescription from her primary and she came back as homozygous for the C677T mutation. I was tested too and came back compound heterozygous C677T/A1298C. That was a few weeks ago. Eight days ago my daughter came home from school with a migraine. (She has suffered from them since she was 11). Later that evening she had unbelievable aches in her joints and muscles. When I looked up the side effects of Deplin I knew this had to be it and I didn’t give it to her that day and gave her niacin SR and it calmed down the muscle pain but not the migraine. It has been 8 days and she still has a migraine and still has leg pain. I took her to the pediatrician on Monday and he told us to call the neurologist. She prescribed a medrol dosepack Tuesday and saw her in clinic today. The medrol was not helping so she took her off it after one day. I told her I thought my daughter was over-methylating since her B12 is only 370. She told me to not put too much stock into this mutation and was quite annoyed I was the one who initiated genetic testing and that this opens up a pandora’s box. She said her B12 is considered normal and that this could not be the cause. She barely glanced at the list of methylfolate side effects I gave her and told me my daughter is probably having this reaction because I took her OFF of Deplin. I again emphasized that I took her off of Deplin AFTER the migraine and the muscle/joint aches began so this could not be attributed to Deplin withdrawal. She has now been off Deplin a full week as of today and still has muscle aches and a migraine. The neurologist scheduled her for an MRI, MRA and an orbital scan on Friday. I still think all this is due to too much deplin and a lack of sufficient blood levels of B12 amongst other vitamins as I did not know about supplementing with B12 until it was too late. Luckily I had been giving her riboflavin and magnesium for a couple of years for the migraines. In the last few days I have added in methylcobalamin and will also add pyridoxine. She is seeing genetics on Monday and I am hoping someone will listen to me. I feel very let down as this is a large university hospital and I expected more. Not to mention the fact that I work there as an inpatient pharmacist. It seems as if hematology is the only department that puts any stock in this mutation, and anything else that MTHFR is linked to is treated as hearsay. I had to be extremely pushy to get her this appointment on Monday and I am hoping they can help guide us through this. If not, could you direct me towards a practitioner that will take this seriously? We live in Rochester NY but am willing to travel.
Thanks,
Wendi

Rebekah
10 years ago
Reply to  Wendi

Hi Wendi, I’m not a dr, I’m a mom w/a sick 13 yr old as well. Ask the hematologist to have her homocysteine levels checked, that will be evidence that a regular doctor should be able to wrap his/her brain around as to how the MTFHR mutation is being played out in her body. I am sorry she has been going through all this. My daughter has also had episodes of depression that seem to be physiologically based. I recently tried giving her one St. John’s wort pill each morning, that did seem to help. Whatever you try, it’s best to start small and work your way up. The body gets used to one way of working, and it can have a bad reaction to an otherwise good thing if there is too much all at once. You have to look at whatever else she is being given to make sure there are no bad interactions. Look it up on Pubmed to get an idea, there have been studies with children. Don’t get a super cheap brand. I would wait until after the MRI and all that. What ever you can think of to cheer her up, try it. Also, I would recommend you always research any treatment/med that is suggested by your kids docs first. They don’t care as much as you do, and you and your daughter are the ones who will have to deal w/the results. Isn’t it telling how some docs get annoyed and suspicious when you seem to not be clueless about a subject? That is telling….they are not docs you want to deal with. They prefer you to be naive so they can feel superior. If you are in pharmacy, you are smart enough to understand these things, whatever they have learned. Good luck, R

Michael_M_Dowdy
10 years ago
Reply to  Wendi

Hello Wendi. I’m not a healthcare professional. This is new stuff for most doctors. I was started on 7.5mg Metanx to start after finding I was homozygous for the C677T mutation and I took it for over a month. I don’t get headaches normally but I sure had them then. Eventually I’ve found the right dose for me and it was much less than 7.5mg. This website was the most helpful to me. I take psyc meds too and even though I saw improvement I still continue with my other meds. Methylation problems are treatable but new things have a way of showing up when you change the metabolism cycles. I was in my 30’s before issues linked to my MTHFR mutation showed themselves. I think you did the right thing stopping the Deplin for your daughter when you did. Before anyone knew about the MTHFR gene they made it through life. I’m taking 2400 micrograms a day of 5 L MTHF now and doing okay. The stigma of mental health issues is a serious problem. The ones smart enough to realize they need help are actually ahead of the game in my book. The ones that don’t know they have problems are really the worse off of all. I hope Dr. Ben can point you to a good doctor experienced in nutrigenomics. For now be patient and study to get an understanding of these slightly complicated nutrition problems. Good nutrition and good sleep are extremely important. Foods with the methyl donor trimethylglycine are important. If you and your daughter don’t get the TMG in your diet you may wish to take it as a supplement. It’s inexpensive and readily available. It’s derived from beets. Undenatured whey protein provides an abundance of amino acids which is also extremely important to those with full-blown MTHFR. Immunocal is in the PDR and is sometimes covered by insurance policies. I wish you the best. Michael M. Dowdy

10 years ago

Note: There is nothing special about Immunocal as an undenatured whey protein. There are far less expensive undenatured whey protein products on the market.

The company that makes Immunocal paid for some studies to make it eligible for Medicare reimbursement. This is not so much a tribute to quality or effectiveness but plain out-and-out soaking the government for an exorbitantly priced supplement.

(I’ve corresponded with the company to get their amino acid profile, which they refuse to release — a very suspicious policy for a “medical food.”)

Michael_M_Dowdy
10 years ago
Reply to  Iatrogenia

Hello latrogenia. I’m not a healthcare professional. Respectfully I have to differ with you about Immunocal. If you don’t know what the ingredients are how can you say there’s nothing special about it? Higher prices for patented items is what encourages further research. It wasn’t by accident that it’s listed in the Physicians Desk Reference. If I could afford it I would use it. The fact that it’s undenatured whey protein which is a huge difference in it’s bioavailability compared to others marketed that are denatured. In processing by using different things like the adding of lecithin to make it easier to mix, the adding of flavoring, heat, and other things destroy much of the effectiveness of other brand whey protiens. To make sure that Immunocal is more effective very strict measures are taken to assure it’s effectiveness and quality, therefore it’s patent. It would be my first choice if my insurance would cover it. MTHFR mutations reduce the efficiency of the body to break down and metabolize amino acids so my belief is add more amino acids and help the digestive system to be able to produce the necessary methyl donors to improve the methylation cycle. Maybe I’m wrong! Immunocal, Deplin, and Metanx are all medical foods but they’re recognized name brand products that undergo strict quality control so they can be prescribed by doctors. Thalidomide used to be prescribed proving things can go horribly wrong. After reversing the twist of a carbon molecule, L versus D, it looks the same in a mirror but the twist can totally change the molecule’s function. As far as soaking the government goes, the government and FDA set forth what they feel is good enough to prescribe. You clearly seem to understand the need for whey protein to be undenatured. I’m using an undenatured and organic whey protein because it’s what I can afford. Study the information provided by the National Institute Of Health website (nih) and see what leucine, a branched chain amino acid found in whey protein, does to the pancreas. Study how a gene can be turned on or off, how environment can cause a mutation, or what the founder effect is and resulting mutations, and the shortening of the strands of DNA with age. Study the Arih2 gene. It’s shocking to learn what information is available if you just look for it. With over twenty thousand genes in a human cell plenty of things can go wrong! The public trust is important but it’s easily shaken. Respectfully, Michael_M_Dowdy

10 years ago

The amino acid profile of a whey protein isolate is essential to evaluating its suitability.

I suggest you try corresponding with the Immunocal folks and see if you find their responses credible.

As a rule of thumb, I would not take any supplement, and I mean any supplement at all, where the purveyor will not disclose ingredients. Supplement manufacturers take advantage of desperate people just as much as pharmaceutical manufacturers do, and will make claims for their products to make sales.

Michael_M_Dowdy
10 years ago
Reply to  Wendi

Hi Wendi. Based on my own experience Rebekah is absolutely right. How are you and you daughter doing? Hormones are soon coming into play because birth control hormones can cause clotting problems once birth control pills are taken. Ask her hematologist. It may be a good idea for both of you to be tested for other clotting issues like Factor V Leiden since you’re both homozygous MTHFR C677T. Keep studying. Michael_M_Dowdy

Mary
5 years ago

Hi Michael – you speak a language that resonates and I’m totally overwhelmed by this as a mother with a child on Deplin. Would you be willing to email with me off the forum?

Naomi
10 years ago
Reply to  Wendi

HI Wendi,
I am heterozygous for C677T but have a bunch of other mutations that really impact B12 absorption, conversion to active form and transport to/use by the cells. I would strongly recommend you read the book “Could It Be B12?”. Bear in mind that while it is not a bible it is written by 2 very experienced medical professionals, a nurse and a doctor, and gives excellent advice on the tests needed to establish B12 deficiency (which are NOT done as standard by virtually any medical practitioner) and what the practical level are for B12 deficiency. It certainly sounds like you’re on the right track, though. For the meantime, why not try sublingual methycobalamin tablets and see if they have any effect? And I found that getting my genetic testing done was hugely helpful too. I did it with 23andme. You get a shed load of raw data which is pretty much impossible to assimilate on your own (unless you’re a researcher in genetics) but there are a few really good sites that can run the data and give you a breakdown. Hope this helps.

Pamela
10 years ago
Reply to  Naomi

If your blood work shows very high levels of B-12 BUT you are heterozygous for C677T – does that mean I AM absorbing B12 but just too much of it? or does it mean it’s not getting absorbed at all and so it’s “floating” around my blood not being truly absorbed. Anyone know?

10 years ago
Reply to  Pamela

TO me it means your taking the wrong B12 and your body does NOT know what to do with it since it cant convert it to Methyl which is the entire issue with MTHFR DO NOT take Cyanocobalaminn B12 mthfr have hard or no way to turn it into methylcobalamin B12.. so take methylcobalamin (methyl B12) so your labs show a high b 12 since it just sits in your body.. thats from the research I have done. Join the group MTHFR on facebook lots to learn

Pamela
10 years ago
Reply to  Renee

Actually, the form of B12 I’ve been taking for 15 years, since I was first diagnosed with Chronic Fatigue (didn’t find out about C677 till a year ago), is Methylcobalamin PF in injectable form. I get it from a compounding pharmacy that doesn’t add any preservatives to it. What now?

Lynn_M
10 years ago
Reply to  Pamela

Pamela,
The serum B-12 test shows total B-12, which is the active form of transcobalamin B-12 plus the inactive form of haptocorrin. That is the drawback of the serum B-12 test, that you don’t know how much of the inactive form you have vs. the active.

That’s one reason the urinary MMA test is preferred as a more accurate indicator of B-12 status. However, the MMA test is actually a measure of adenosylcobalamin, which is active in the mitochondria. Adenosylcobalamin and transcobalamin interconvert, but not also perfectly, so the MMA is not a perfect indicator of transcobalamin B-12.

Pamela
10 years ago
Reply to  Lynn_M

Thanks. The test said:
Vitamin B12 – 1737 HIGH
Folate (Folic Acid), Serum – >19.9 (no indication of low or high) the optimum should be >3.0 …
Should I stop any B12 supplementation including the Methylcobalamin shots?

Pamela
10 years ago
Reply to  Lynn_M

I should have written the median for B12 – the normal range is between 211 and 946.

Lynn_M
10 years ago
Reply to  Lynn_M

I wouldn’t make any decisions based on a serum B-12 test. You could get a urinary MMA test, either as a stand-alone test or part of an Organic Acids Test. Though I wouldn’t be concerned about your level of serum B-12, and I certainly wouldn’t be concerned if that was reflecting a high inactive haptocorrin B-12 level.

Injectable methylcobalamin is easily degraded by ambient light to hydroxycobalamin. Even though it’s in an amber bottle, unless the bottle and syringe have been protected by wrapped aluminum foil and kept out of the light otherwise, Freddd at Phoenix rising has reported that it degrades to hydroxyB12 in about a week. I like the adenosyl/methylB12 sold at B12oils.com, which comes in a lightproof pump and is applied as a red topical oil that rubs in the skin in less than a minute. It is as efficacious as taking subcutaneous injections of B12.

If you want to continue with injectable, subcutaneous is supposed to yield better results than IM. More consistent B12 levels are achieved.

You may need adenosylcobalamin as well as methylcobalamin. I felt a big difference once I added adenosylcobalamin to methylcobalamin. At that time I was taking both sublingually, but I noticed even more benefit once I started the transdermoil product.

10 years ago
Reply to  Pamela

Actually I’m still suspicious of this so-called pharmacy that you’re getting your B12 from I would go a whole Nother route to make sure you getting proper they could definitely be slipping you the cheap stuff but overseas especially! I’ve been researching chronic health issues for many years because I haven’t myself I have seen some pretty shocking things over the years as far as pharmacies go.

10 years ago
Reply to  Renee

Renee,

I’d like to try the transdermoil product from the site you mentioned. How does one know which is needed? I’m hetero C677T. Mutated homo are: 2 COMT, 1 CBS, MTR hetero, 3 MTRR hetero. All these are on the NutraHacker with notations about B12. Some are in need of one type of B12 while others indicate another type and are conflicting in some. I won’t be testing. I’ve been using Dr. Lynch’s sublingual Hydroxo B12 (1/2 tab) and B12 with MTHF (MB12). Haven’t had any problems that I can place on B12 or Methylfolate.

Shauna
10 years ago
Reply to  Pamela

Amy Yasko has found that lithium is critical for getting methylcobalamin into the cells. I had an abnormally high serum B12 level, and then learned through a Hair Metals Test that my lithium level was in the gutter, so evidently my body was unable to use all the B12 that was available in the blood, from my supplementation of sublingual methylcobalamin. You might get your lithium levels checked via either blood or hair test. I am now taking lithium orotate, and although I haven’t yet rechecked my B12 status, it has made a huge improvement in my mood. Anyway, lithium may be something you could look into.

10 years ago

Having the C677T mutation, I began consuming lots of dark leafy greens for the folate. NOW, I have a kidney stone!!! My initial concern consuming Kale was my thyroid. Had no idea Kidney stones were a threat to watch out for. How can I consume foods high in folate, dark leafy greens, in order to rely less on supplementation, and not get kidney stones? I have no idea what is to come with this kidney stone – I’m told lots of pain. I thought I had a muscle spasm in my side towards my back just below my rib cage – it was my kidney. Any suggestions on dissolving it? Today I drank olive oil and lemon juice, followed by a glass of water; 30 minutes later and every 30 minutes – lemon juice, water and ACV. Burdock tincture, dandelion tea, Aloe Vera Detox. My kidney is still having pain. No fever.

Heather
9 years ago
Reply to  Kathleen

I am told by my dr that eating only one type of green consistently can cause oxylate issues so there is a need to change the greens that you consume – kale, spinach, corriander, boc choy, mint, lettuce etc.

Laurel
10 years ago

Hello,

I just learned of the MTHFR mutation as a possible explanation for fibromyalgia symptoms, and I’m waiting for the 23andMe results. I have a question about histamine.

I once took a tablet of niacin (not time released) and had an extreme reaction. Flushing at first, and then severe gut clenching (with vomiting, stooling, and uterine cramping and bleeding.) I actually had the same reaction to morphine during childbirth.

To have such an extreme reaction to a tablet of niacin, could this be a sign of low histamine? (My thinking is that if histamine receptors are up-regulated due to an apparent deficiency, then stimulating histamine release would cause an extreme reaction.)

I usually feel terrible when I wake up after 8-10 hours of sleep, but taking histidine makes me wake up perky like a morning person. (It also makes me itch all night, so I don’t really like that part.)

Anyway, I’m wondering if I should try niacin… starting *very* slow with a time-released version?

Thanks!

Marcie Marwood
10 years ago

I have every side effect listed. I have two other complicating factors that could cause similar side effects, but I am suspicious of the Methyl B. I have sent my Doctor a message to inquire. I currently take 1ml per day. I am anxious for relief, especially from the monumental migraine.

Rebekah
10 years ago

Hello Dr. Lynch, I have a 12 yr old daughter who has had a lot of symptoms of a mast cell disorder; she did not have a raised tryptase, so the dr we went to sent us on our way. She was a healthy baby. Around age 8 she started having odd symptoms. I took her to many drs and they all wanted to find something common, which they did not. She has been traumatized by all the medical nonsense, so I have been trying to take care of her myself. I put her on a low histamine diet, adding omegas, probiotics, and (occasionally) tumeric for a while. She has improved a lot, but still has symptoms, especially heat, exercise intolerance and fatigue. I did have her dna run with 23andme-and she is heterozygous C677T A1298C …plus I ran her info through GeneticGenie.org and she is homozygous (++) for BHMT-02, 04, and 08. She also has the COMT 158M (AG) and BDR Taq (GG). I have read that with COMT (she is +/-), people may have trouble with methyl donors. Do you think supplementing with L5MTHF and Methylcobalamin would be wise? I haven’t been able to find a dr in my area that will spend any time thinking about her case. We are clear across the country from you in Florida.

Chris
10 years ago

Hi Dr Lynch,

I have been doing methylation injections”fairly” regularly. The other day I did one and experienced extreme fatigue within 10 minutes. I took a small amount of niacin which helped me clear my head. What is going on here? Is it a liver issue? Do I need a liver detox?

Thank you so much! You are doing good work here.

Candi
10 years ago

I started your B12/methyl folate sublingual about two weeks ago. I have since started getting more brain fog than normal but the worst is the heart palpitations. I get them after I sit down.

Brittany
10 years ago

I am a 25 year old female, diagnosed with depression and ADHD mid teens, was on antidepressants and ritalin until 21 years old. Got off everything, depression never came back, but symptoms of ADHD and extreme fatigue and brain fog did. Put on Adderall, hated it, switched to Vyvance, love it.

I feel like the Vyvance is just covering up symptoms of the real problem, so am always looking for the ROOT of the problem, in order to treat it.

got tested, came up homozygous for C677TT. Psychiatrist had never even heard of this before.

Tried Deplin (while still on Vyvance), that first day felt horrible brain fog and dizzyness. After a week of getting no better, stopped that, and tried just 1 mg of the same thing. Still no better. Took a few weeks off, felt better, started back on at 200 MCG, still felt brain fog, did that until it seemed to get better, thinking I could work my way up, past some kind of “healing crisis”.

I take supplaments to support homocysteine levels (which are normal) as well as liver function, and I’m up to 1mg of deplin

The only thing that seems to help (besides vyvanse) is methyl-b12. I sometimes take 50 mg a DAY which can get expensive, and I’m not sure if I can overdose on it.

should I just stop taking the deplin? am I taking too much methyl-b12? it’s the only thing that lifts the brain fog.

Katherine
10 years ago

I am Compound Heterozygous MTHFR and I also have a protein s deficiency. I have know about both of these for 12 years now. While pregnant I took folgard (sp?) and Lovenox. After the baby, I just took a baby aspirin a day and the hematologist told me I didn’t need to worry about the MTHFR outside of pregnancy. FF to last week when I met with my primary doctor (MD and Naturopath) to discuss some other issues and he was curious why I was not taking anything for it. He suggested I take two Methyl-Guard Plus capsules a day. So I started last Wednesday. One in the morning and one in the evening. Late Friday night, I started feeling nauseous and restless. I then vomited twice. All day Saturday, I was very week, tired, dizzy and had a 102 temp. All the things I got when I did a candida cleanse last year to stop the migraines. I had no idea this would come from this supplement. Saturday night I had horrible night sweats and that was the last of the toxin release. Now I have a sinus infection that started on Monday. I did take some activated charcoal on Saturday to absorb some of the toxins. I am treating the sinus infection with raw garlic and raw local honey and a sinus rinse.

Susanne
10 years ago

Does methylfolate supplementation affect DNA methylation? Specifically, recent research suggests that some DNA methylation can inhibit tumor supression genes, in ovarian cancer for example. Does the oral supllement increase the methlyation process on DNA?

Tammy Tomek
10 years ago

Talked to my primary care Dr. Today, told her of my (+/+) MTHFR didn’t want anything to do with me, told me to talk to my psychiatrist!!! I feel absolutely terrible! Been trying to supplement myself…making big mistakes..lots of side effects..do you know of any MD’s in Michigan that will be willing to help me??? I live by Flint no…willing to travel, had to miss work, I don’t know how I have held it together this long. New to all of this and have no family or friends that help me. Iam 52 yrs old..many many different issues and getting worse with age..hard to figure out all alone…I think I took supplements wrong..and probably not the correct dosages. I just learned from your site today that you should not take some at the same time, etc.. just diagnosed 1 month ago from 23&me, c677t ..iam lost, confused,and very sick right now. Thinking of stopping supplements, clear my body and starting over…and still on a lot of persribed medications….need a Dr. To work with me!!!!! Any suggestions?????

10 years ago

Hi DR Ben,I am heterozygous 677, my daughter 16 years homozygous 677 .i have hypothyroid , CFS ,both b12 deficient . My 3 children all ADHD youngest also ASD .My younger 2 children and husband most likely have one or two copies of the mutation.we are taking optimal multivitamins and kids Op multivitamin from seeking health.Im taking the ones with iron.we started off with 1 daily for one week ,2 daily now 3 daily.i have read with one or two copies we shouldn’t need anymore Methylfolate than what is found in a multivitamin.if we feel ok on say 3 capsules should we stay at that for now even though it’s lower than recommended dose.my husband is on 4 capsules a day .my daughter and I have methylcolobamin injections 2 monthly. I have read we need to also include adenosylcobalamin to make it all work well but I can’t see it listed on the optimal multivitamin. If it was we may not absorb it anyway so I’m confused a little.Thanks again Dr Ben giving us potential to improve our health and life .

10 years ago

Hi Dr Ben. Thank you so very much for your site. I was diagnoses 10 days ago with c667t homozygous and was put on methyl folate 1000mcg. I also have migraines, Hashimotos and Ehlers-Danlos Syndrome Hypermobility type and Interatitial Cyctitis. In the last week, everything is acting up! I have had daily migraines, forgetting words and things and increasing aching. But what is really bad is intense bilateral calf throbbing! I’ve suffered with this nightly off and on but it is BAD the last week. I can’t even sleep. I called my dr who diagnosed me and she said I should stop the methyl and see if it’s just a virus. And that I sounded dehydrated. So I’m home, drinking fluids and miserable. Do I stop taking the methyl or continue and get some niacin. Thank you.

Susan
10 years ago

Dr. Ben, I meet your #3 response to methylfolate: A person takes a small amount of methylfolate and feels all the methylfolate side effects right out the gate.

History: I have been searching for over 11 years now for answers to my chronic fatigue, fibromyalgia like symptoms. I also have history of complex migraines including hemiplegia, aphasia and classic with aura. I have white spots in my brain that neurologists say are from my migraines. I have had 2 abnormal EEG’s showing temporal lobe seizure activity (I get focal seizures, olfactory hallucinations). I was diagnosed with hypothyroid in 2004 and take 175mcg currently. I have also been on low dose prozac (20mg) for about 12 years (couldn’t get through the day without crying without it). The prozac seemed to help the migraines and my frequency went from about 12/year to about 3/year and they are now mostly ocular migraines only. I was recently put on Oxcarbazepine and Clonazapam for the focal seizures. Using muscle taken during a biopsy in 2012, I recently had that tested for CoQ10 and it came back abnormal/low. I had been taking 200mg/day of Ubiquinol (Hydrosoluable QH) and I upped that to 400mg/day about 6 weeks ago. My neurologist put me on B100 plus extra 300mg B2 which I have been on for about 18 months now. Basically, a “mito cocktail.” My biopsy histochemical and enzymology were basically normal (all levels were low normal) and my carnitine was on the low end of normal. I started levo-carnitine (333mg/3x/day) last fall. I also had organic and amino acids done in 2012 and they were all in the normal range. My Vitamin D has been low or low normal for years as well (20’s to low 30’s). I take 5000iu/day and it’s still not enough.

My B100 has 400mcg of Folic Acid, B12 (cyanocobalamin) 100mcg and 100mg Niacin (among the other B vitamins). It is the Kirkland brand from Costco.

1 year ago on Valentines Day, I had an Atrial Septal Defect closed with an Amplazter Septal Accluder. This was found just before my 46th birthday. I wonder now if my mother has folate issues?

I recently did the 23andMe testing and then read more about the Methylation Cycle defects. I only have one mutation on MTHFR A1298C, (C677T was CC/normal), but, it turns out I have many of the other mutations. The problem is, some of my mutations seem to contradict each other in how to manage them. I am having trouble determining how to interpret these together. I asked to have my homocysteine and methylmalonic acid tested last week. The first came back normal at 7.7, the other has not come back yet. I will add that my CRP-hs has been elevated for at least 8 years (since we started testing it). It is currently 7.8, it has never been below 4. My heart looks great as I had an angiogram at the time my ASD was closed so this is not cardiac. So, I have chronic inflammation and even after losing 20lbs this past year, my CRP went up. I am trying to eat better and have started moderate exercise.

My B12 plasma came back normal (600’s) and my PCP said to try B-12 and folic acid if I wanted but insisted there was no value in testing homocysteine (which I later convinced him to order). He deferred me to “my specialists” which I can’t find anyone in my insurance network in Colorado. My Neurologist nurse told me to see “my geneticist” when I mentioned the MTHFR findings.. I said “what geneticist,” again, I can find no one for adults in my state (they are all at Children’s).

So, I am basically on my own. Since the mutations contradicted each other, I decided to try Methyl-B12 (5000mcg under tongue) and Methyl Folate (500mcg in capsule) yesterday morning. Big mistake!!

I had the following problems:
extreme sore muscles (like the flu, all over but worse in my shoulders and back)
extreme achy joints
mild anxiety
severe fatigue (fell asleep at my desk at work in the morning, then took a 45 minute nap in my car at lunch, fell asleep for another hour at 8pm)

Last night after reading your post, I ran to the pharmacy and bought time release Niacin. The only time release one I could find was a capsule and can’t be split so I ended up taking the 250mg capsule. Most of the symptoms improved fairly quickly.

Here are my mutations that were ++ or +-:
COMT V158M rs4680 AA +/+
COMT H62H rs4633 TT +/+
COMT P199P rs769224 AG +/-
VDR Taq rs731236 AA +/+
MAO A R297R rs6323 GT +/-
MTHFR A1298C rs1801131 GT +/-
MTRR A66G rs1801394 AG +/-
MTRR A664A rs1802059 AA +/+
BHMT-08 rs651852 CT +/-
AHCY-01 rs819147 CT +/-
AHCY-19 rs819171 CT +/-
CBS C699T rs234706 AA +/+
AND:
SOD2 A16V rs4880 AG +/-
SOD2 rs2758331 AC +/-
NOS2 rs2248814 A AG +/-
NOS2 rs2274894 T GT +/-
NOS3 rs1800779 G AG +/-
NOS3 rs1800783 A AT +/-

Here are my medications:
MEDICATION 8am 4pm 12am
Oxcarbazepine 450mg N/A 450mg
Baclofen 10mg
Fluoxetine 20mg
Levothyroxine 175mcg
Levocarnitine 330mg 330mg 330mg
Aspirin 81mg
Clonazepam N/A N/A 0.5mg
Ubiquinol 200mg 100mg 100mg
B Complex 100mg
B2 (Riboflavin) 300mg 100mg N/A
Vitamin E 400 iu
Vitamin D3 5000 iu
Vitamin C 1000mg
Omega-3 Fish Oil 1000mg 1000mg
Calcium 500mg 500mg N/A
Magnesium 250mg 250mg N/A
Zinc 15mg 15mg N/A

I just also read your reply about not taking Vitamin C within 45 minutes of methy-B12 so that might have been an issue as well.

What I am taking has helped to an extent. It hasn’t hurt (until the methyfolate and methyl-B12 yesterday). Should I take anymore folate or B12, should I try the hydroxy forms? What about Phosphatidyclcholine (to help BH4)? It looks like CoQ10 and Carnitine were good choices for the CBS mutations, should I add Molybdenum and GABA?

I just want to feel better and I am not there yet.

Thanks for the info on the Niacin, it was a life saver last night. If it was the methyl-folate that caused this, does that mean the methylcobalamin is ok or should I switch to hydroxy form? Should I avoid all methyl forms of stuff and assume I am over methylated already? Are my mutations the cause for my chronic inflammation (ESR is normal by the way)? Nothing I have tried to help lower my CRP has helped (including curcumin) and weight loss. My PCP wanted to put me on statins (my cholesterol recently went over 200, up 35 in a year) but my Cardiologist said no need since my vascular system is great and because of my myopathy/myalgia like problems. My PCP pushes statins and said “well I guess if you aren’t going to use them, there is no reason to keep testing CRP.” Well, to me, this is the only measure of my inflammation and a way to see if what I am doing is helping. With my variety of mutations, how to I manage these as a whole?

Thanks,

Susan Davis

Susan Davis
10 years ago
Reply to  Susan

Following up to my own post. I think my first step is to take care of my inflammation. I can’t seem to normalize my CRP (never below 4 and last test was over 7). I have tried taking Curcumin pills for several months, this was before my last test. One of the methylation reports said my mutations indicate I should not take curcumin. I have lost 20lbs in the past year and my numbers still went up. I am also starting some exercise which has been hard due to how bad i usually feel. I am at a loss for how to attack this head on??

Can I ask also, do my defects play a role in my cholesterol and CRP numbers or are they simply a sign of blockages in the pathway and oxidative stress?

Michael_Dowdy
9 years ago
Reply to  Susan Davis

Hello Susan. Have you considered trying virgin coconut oil to reduce inflammation? If you research it you may wish to try it. Medical opinions have changed a little bit regarding coconut oil’s benefits as well as benefits received from red palm oil. It is an easy diet change with possible benefits. I don’t think I’ve ever had testing for CRP or MMA. There is a lot of information available from the nih and ncbi on coconut oil. They also have useful information on the benefits of trimethylglycine as another methyl donor in the diet. I’m only a patient and not a healthcare professional. I hope this is helpful for you.

HJ
10 years ago

My daughter (11) has been special since birth. She has *always* had constant pain that is not relieved by OTC meds. She is on serotonin and elavil now, one to act as a pain reliever for her autonomous nervous system (stomach pain without traditional medical cause after numerous medical procedures) and the other to help her mood issues. She has constant random nerve misfires also. I tested her on 23andme and here are her results: hetro MTHFR C667T AND A1298C; homo COMT V158M, COMT H62H, VDR Taq, and MTRR A66G; and hetro MAO-A R297R, BHMT-02, BHMT-08, AHCY-01, AHCY-19, AND CBS C699T. I am not sure if we have any doctors who are MTHFR-literate in our area, and I would like to start her on a protocol. After reading the above, I am concerned about CBS issues before starting metafolin. Can you please advise me?

Michael (NW)
10 years ago

Hi, does anyone know where to get these additional methyl defects tested?

GSTM1 – major detoxifier
HNMT – processes histamine (primary is DAO)
GAD – glutamate to gaba
QDPR – recycles BH4

Thanks.

Susan Davis
10 years ago
Reply to  Dr. Ben Lynch

The new v4 chip at 23andMe dropped about 300000 snps including some of the methylation cycle ones. Without the Rs numbers, I can’t check the ones he listed, but it is likely they were dropped. I had several N/A’s when I ran my recent results through several of the online reporting tools.

Michael_Dowdy
10 years ago
Reply to  Susan Davis

Hello Susan Davis. Your information stating that 23andMe now use a V4 chip which reduces the snp’s listed/provided by about 300,000 is disturbing to say the least. Do you have an idea of approximately the date the change occurred? I first downloaded my raw data on 09/09/2013 so I hope that my first download included the 300,000 snp’s that you say aren’t listed now. Thanks in advance. Michael Dowdy

Michael (NW)
10 years ago
Reply to  Dr. Ben Lynch

Hi, I did the $99 23andMe test, and it had NOTHING to do with methylation from what I saw. Seemed to be a waste of time and money for me as I was looking for more detailed methylation information. It was more about ancestor stuff and what diseases I might look forward to when I get older, etc… Nothing about methylation like MTFR etc…..

I did an actual methylation test via Dr. Yasko’s web site, but it didn’t include those other items that I had listed above…..I can’t find anyone who tests for those.

Thanks.

10 years ago
Reply to  Michael (NW)

Contact Jessie Armine or Shawn Bean on Facebook for your free first consult to tell you what you need to do.

ML
10 years ago
Reply to  Renee

YES, I contacted Dr. Jess Armine and he has helped me immensely. Website is http://www.drjessarmine.com/

He and Shawn work together to help you as well. 🙂

10 years ago
Reply to  Michael (NW)

Hi Michael,
I recently got my 23andMe results. I got the same impression, initially, as you – until I did the next step. You need an interpretation of the 23andMe raw data. To begin that process, I went to mthfrsupport.com and clicked on ‘Sterling App’ which is on the top bar to the left next to Radio Show. Once you hover your cursor on Sterling App a drop-down menu will be displayed. Select Order/View Reports and follow the instructions. The cost is $20 and the app will access your 23andMe raw data and present to you an interpretation with hyper-links to Pubmed research so that you can read the research on the mutations listed in your report. You will see the MTHFR mutations, as well as lots of others. This process is very easy. Once you have the report you can save it to your hard drive. Hope this helps.

Kathleen

Susan Davis
10 years ago
Reply to  Kathleen

I used mthfrsupport.com as well as geneticgenie, promethease, livewello, nutrahacker etc. to upload my raw data and get Methylation gene related results. Some include more snps than others in their report and as I mentioned before, the V4 chip at 23andMe is missing a few that used to be provided. But, I was pleased with all these for different reasons.

ML
10 years ago
Reply to  Michael (NW)

http://www.drjessarmine.com/ Is Dr. Armines website he works w Shawn as well… Is helping me with mine really knows his stuff.

Michael (NW)
10 years ago
Reply to  Michael (NW)

Hi,

Thank you for all the great responses. I will look into these…

I have another question, not sure if this is the right forum section to ask, but thought I would try…. I’m CBS ++ and BHMT +-. Since I have an issue in the sulfation process, does this mean I’m not making Glutathione properly? I had another test show that I had a high need for Glutathione…

Michael

Michael (NW)
10 years ago
Reply to  Michael (NW)

Thank you Dr. Lynch for taking time to respond. I’m actually CBS C699T ++. Previous tests showed I had a high/normal homocysteine levels and high/normal histamine levels. The NutrEval test by Genova Labs, showed I had a high need for B12 and Glutathione. I can’t methylate B12 as I previously had B shots and now my B12 is 1500+. I’m MTRR A66G ++ so that might be why…. So, not sure what is going on. I’m having a SpectraCell test done which apparently looks inside the cells to see what I’m deficient in, sounds more accurate than a standard blood test. It will be interesting to see if I still have a need for Glutatione, etc….

Charity
6 years ago
Reply to  Michael (NW)

Same- felt like 23andme test was a complete waste of money and it was all about ancestor stuff that was also very incomplete.

AW
10 years ago

I am compound heterozygous. I’m 46 years old and have had type one diabetes for 33 years. I started taking Methyl Guard 9 days ago, one tablet per day as per my doctor’s instructions. Felt fabulous and amazed at the difference it made to my energy and concentration. In fact, I felt quite hyped up at times. Then yesterday my doctor started me on 2 Methyl Guard tablets per day. By last night I had a bad headache and felt quite irritable. This morning I still have the headache and also feel very queasy. I rang my doctor who told me to take no Methyl Guard tomorrow and then go back to one tablet a day for another week, and then slowly titrate up. It’s hard managing the headache and queasiness with type one diabetes given I can’t really stop eating… I will persevere!

Stephen LaCorte
10 years ago

I would like to note that I am homozygous on MTHFR – A1298C, MTRR – A66G,
MAO A – R297R, and VDR – TAQ

I can not tolerate any amounts of methlyfolate nor hydroxocobalamin. If I take either of these together or alone, I get severe insomnia (even when taken early in the morning). 3am the following night feels like it should be 3pm after taking these. The effects where off with discontinuance.

Also, I would like to point out Dr. Julia Newton’s research at the University of Newcastle that demonstrates a correlation between cerebral vascular control and skeletal muscle pH in CFS/ME.

http://www.sciencedirect.com/science/article/pii/S2213158212000484

The discussion of this research surmises that the periphery may be affecting the CNS. This may be due to a pH gradient problem between the blood and the muscles. The research refers to another study showing increased lipid peroxidation indicating a poor membrane integrity speculating this as a potential pathway for pH gradient issues between the muscles and blood.

More recently, Dr. Newton gave a preview of her current research (soon to be published) at the Action for ME Conference in the UK. This video clip of her presentation suggests more and more the possibility that the periphery is responsible for problems in the CNS for patients with CFS/ME. I asked for Dr. Newton’s opinion on whether this may be the case in an e-mail and she responded, “possibly.”

http://www.youtube.com/watch?v=AevOA161Hdg

This research may help pave the way for more emphasis on problems with the redox potential of the cells in the muscles of patients – e.g. methylation, glutathione depletion, etc.

Jodie McGuire
10 years ago

Hi Dr. Ben,
My Dr. put me on a daily injection of methylfolate/B12 right out of the gate. She warned me of over methylation by saying, “If you get flu type symptoms, take some niacin”. She never warned me about the anxiety and insomnia. In no time at all, I was LOSING MY MIND with the most severe anxiety, nervousness, racing thoughts & insomnia I have ever experienced. I did not put two and two together until about 10 days into my injections when I googled if they could be causing my symptoms. I was LIVID! I now use your Seeking Health brand and I just break it in half and take it every other day. Been doing so for two weeks and thus far I haven’t had any bad reactions.

Sharon Elston
10 years ago

I tested positive for one heterozygote MTHFR mutation C677T, after having been on a prescribed 1 mg 5MTHF for about a month beginning Aug 2013. There were no noticeable side effects, although I’ve suffered from joint and muscular aches for about 10 years. I am a 63 yr old female. My (substitute) naturopath prescribed it because she thought it might be the answer to my perpetually low B12 levels. Since she told me that my test results were “normal” , I had given it no further thought.
Since then, my regular naturopath has reviewed my test results and sent me to this site for more information. Under his care, I am currently preparing to take a Spectracell test to determine my nutrient levels in order to better understand my supplement needs. In the meantime, I have stopped using the 5MTHF as well as most of my other supplements. Any thoughts on this?

Jaime
10 years ago

Dr. Ben, I really hope you can answer my question. Is it possible to get a reaction from foods that are high in folate? Every time I eat a cup of cooked spinach I feel the same kind of anxiety/agitation like when I take methylfolate. I am heterozygous1298c. It has happened several times (at first I thought it was a coincidence). Is there a connection? Will taking niacin with my spinach help? Thank you so much for your outstanding research and wonderful website.

Jaime
10 years ago
Reply to  Dr. Ben Lynch

Thanks so much for your confirmation and advice! This is all so complex and yet I know I need to figure it out. I greatly appreciate your generosity to take the time to answer questions and share this important information.

Lynn_M
10 years ago
Reply to  Jaime

Jaime,
Spinach is also very high in oxalate, which can cause reactions.

Michael_Dowdy
8 years ago
Reply to  Jaime

Hello Jaime. Lynn_M is quite correct. You need to be careful and balanced because kidney stones can form. Excessive protiens can be harmful. I’m fortunate and have never had a problem with kidney stones because I’m horrible about not drinking enough water. Drink good pure water like distilled water to protect your kidneys and flush harmful build-ups. Be careful to not over-treat problems and always check to see if you may be taking toxic levels of anything you take on a regular basis. One size does not fit all and we’re all different. Toxic levels may be necessary to correct some problems but should be reconsidered when using long term. Michael M. Dowdy

Stephen LaCorte
10 years ago
Reply to  Jaime

I am homozygous 1298C and on MAO A. I can tell you first hand that when I juiced red dandelion greens, I had severe insomnia, felt very hot, and mild muscle twitching on the nights following. Unfortunately it took me three nights of this suffering to discover the connection. I am also curious if niacin might be helpful for this kind of reaction.

I cannot tolerate any amounts of methylfolate or hydroxocobalamin – any amounts (even when taken early in the morning) will cause insomnia and some anxiety. If I take a large dose, I won’t be able to fall asleep until at least 3am. I get very wired by tired from lack of sleep. The benefit I do get is more energy and less feeling of air hunger. But the bad definitely outweighs the good for me.

10 years ago

I’m experimenting with magnesium to help with sleep, because when I began correcting for C677T sleep disturbances also began. Magnesium is doing the trick in helping me to sleep through the night. I also take GABA 100mg, 5HTP 50mg, and Ornithine by Now. Once I added the magnesium I began to sleep thru the night but I still take all the other stuff listed before bedtime. I’m looking more into magnesium deficiencies and looking at RnA drops (magnesium that supposed to be delivered to cells). But just from Natual Vitality magnesium in small amounts I’ve had improvements in wellbeing and sleep. But magnesium can cause a huge disturbance to the bowels – I learned the hard way. That’s why I’m looking into RnA Drops. Hope this helps.

10 years ago
Reply to  Kathleen

Using magnesium glycinate As your magnesium supplement cutback any stomach discomfort 99.9%! Find your best dose by adding one capsule every day until you have a soft stool That will be your cell Saturated dose! That’s what my natural path had me do and it’s worked beautifully for years. Best of luck

terri
10 years ago

Hi all, I notice on here answers are few and far between but I thought I’d try anyway as I’ve read through everything and can’t find anyone with my issue. I’m heterozygous 677 and 1298 with normal homocysteine levels (6). I have anxiety, ocd that comes and goes and panic disorder daily for the last 7 years. High stress brings this on but it seemed to last longer this time than back when I was younger. (I’m 32). I am single and have no children. Last summer I had food poisoning or something that spurred lpr and reflux symptoms with throat spasms that were worsened by anxiety and 7 month later I’m still healing. I’m lactose intolerant and off gluten and grains right now. I upped my greens but stopped almost all supplements because of stomach reflux issues. I have taken 5htp, NAC, and a host of other supplements for anxiety for years and we haven’t been able to balance neurotransmitters for years now as per urine tests. Since my homocysteine is normal, how would I go about treating my neurotransmitter problem? I don’t want drugs, I want to treat it from the root. I want to helpy body make and balance its own neurotransmitters. Keep in mind I’m on a 10 food diet right now while weaning off Nexium and healing my lpr and swollen throat. Any advice is helpful and appreciated. I’ve searched the web bit no luck.

10 years ago
Reply to  terri

Hi Terri,

I’m on here because of C677T hetero. My friend 1298 and 677 but doesn’t have the issues you describe. Perhaps other mutations causing the anxiety, etc. I have anxiety issues but not debilitating. Both parents have anxiety disorders. I first noticed anxiety by awakening in the middle of the night with a sense of rushing adrenaline for no apparent reason. I figured it was anxiety. I taught myself EFT (see http://www.emofree.com) using the video library that I purchased. The anxiety went away and never bothered me again that same way, in the middle of the night. I’ve always had social anxiety issues (hate the word disorder), and I neutralized that problem by about 90% using EFT, which is a meridian tapping technique. It works! I believe that I can also correct mutations by using tapping and cannot see why it wouldn’t work. Should you decide to learn about EFT and the technique of using it, you will see how you can change how your DNA expresses. I recently began taking Lithium Orotate 20mg/day and I feel better, not that I was feeling bad but I noticed an improvement in my mood and energy level – more buoyant and outgoing. My 23andMe uncovered some unpleasant things that I need to be watchful for and avoid stress, and litium was suggested on the NutraHacker report I purchased. I highly recommend NutraHacker to analyze your 23andMe raw data, in addition to uploading the raw data to http://www.mthfrsupport.com. I also found inositol to be calming. The NutraHacker is going to tell you what you need to take. From the NutraHacker I learned that Tyrosine would be helpful, and that was on my intuitive radar. Hope this helps.

Terri
10 years ago
Reply to  Kathleen

Thank you Kathleen. I was on Lithium orotate 5 mg. for years and yes, it does work on mood. I recently stopped all supplements for anxiety because I want my body to produce its own neurotransmitters. My DO/MD has a high autism population of patients and says he is well versed in MTHFR. He tells me there is no CBS or SUOX test but would look into CBS. He doesn’t think highly of Amy Yasko and the tests are too expensive. In addition, 23andme.com is down while the FDA investigates and they have a disclaimer that they only do heritage nationality testing and not health testing right now. My doctor also didn’t seem to think highly of it either. He gave me B12 liquid, methylfolate 1000 mcg as well as what is in my multi vitamin, and DMG liquid to take. I haven’t started any of it. He is blood testing my heavy metal detox ability, B12, folate and doing a food sensitivity test next week. He says there are no tests for methylfolate levels. So, aside from Amy Yasko and 23 and me which is not up and running, does anyone know of a CBS, SUOX and COMT test that is affordable? I’m supposed to go back on the NAC that I’ve been on for another reason for like 5 years, as soon as possible but I don’t want to until I have CBS tested. Also, what is the link between low neurotransmitters and MTHFR? Is it COMT?

Rebekah
10 years ago
Reply to  Terri

As far as I know, the 23andme test will still give you the genes, you would just have to look them up one by one in the area where your personal info is on the page. You would go to the spot, and type in, say COMT, and you would get all the ones that 23andme has of yours. Last I heard, it cost $99., which is pretty cheap for all the genetic info you have access to. If you really want all that info, mine as well pay less for it–just do a little digging to find out if you will be able to access the info, and the price…You would have to find out if the alleles you have are considered problematic, so you would run the data through the Prometheus program or the few others that are available. IDK if the feds have gone after these companies yet, though.

MIchael (NW)
10 years ago
Reply to  Terri

Hi Terri, why doesn’t your doctor not like Dr. Amy Yasko? I did take the Methylation test that is available on one of her web sites. It was expensive. But, the problem I have with it, I have multiple defects and they recommend too many supplements. I know that would not be good for me to be taking all those things and would be expensive. I need to find a doctor who knows more about this stuff and put together a plan to get the methylation cycle working better. I’ve done my own research and have put together my own plan for now as I don’t have any local doctors around here that really know anything about this stuff. There is one cardiologist who has a web page that goes into great detail about how to support the different defects, but not sure how he got his info, but he seems to know what he’s doing so I’m pulling ideas from his info to help with my methylation defects.

Anyway, I have tried Lithium Orotate 5mg and even 10mg now and then, and it does produce a calming effect. My ND said I could try it, but try it consistantly for awhile to see how it works. He treats people at doses up to 15mg-20mg I think. I’ve read reviews where people said it helped with anxiety and depression and they are not bi-polar. Sounds like it can be a helpful mineral. So, I will try it consistantly for a while to see how it goes.

You said you stopped all your supplements due to anxiety. Did you figure out what migth have been causing your anxiety? I guess it depends on what all you were taking. I know that certain supplements will cause me to feel stimulated. And I suppose if you take something that your body didn’t need, ou might push your methylation cycle the wrong way.. Kind of a trial and error some times, and finding the right balance. I just wish I knew of a doctor in my area who knew more about this methylation stuff, it’s just such a new technology.

I’m pretty disappointed with the 23andme test. Didn’t provide any methyation data that I could see. But the test I took from http://www.holisticheal.com, which I think is one of Dr. Yasko’s site was helpful. Just didn’t like the suggestions they made to fix things as I thought it was a pretty canned recommendation. And didn’t seem to be very customized for me, and didn’t really provide a good plan. Just here are all the supplements to take for these defects, etc. And there were lots. So, I just take my test results and show other doctors hoping for some insights (haven’t really gotten any but have found doctors interested in looking at it), and do my own research and seem to be doing okay so far.

Cheers.

M

Pamela
10 years ago

I was diagnosed with a single C677T mutation a year ago, the doc that tested me for it told me to take 1 cap of Methyl Protect (which has 2000 mcgs of Folate and 1000 mcg of B12). He said all I needed to do is take two a day for the rest of my life and that was it. Well, by October of last year I was waking up with severe inflamation of my joints in my left hand (pain/stiffness), that would go away after a few hours. Then in December I started having mild anxiety (attacks) and in January low level depression, plus weird feelings in my brain (emotions), also, had blood work in Dec that showed super high levels of Vit B12 and Glutamate/Glycine, so I decided to do some research of my own and that’s when I found your website and learned that it’s not that simple. So I stopped taking the Methyl Protect completely and started taking 100 mg of Niacin every day, plus Thianine, and this week gave up gluten and most dairy. I have an appt with Dr. Nancy Mullan today who is an expert on Methylation Genetics to help me balance my chemistry.

10 years ago
Reply to  Pamela

Pamela,
Dr. Mullan is in my area. Please post how you like your visits and progress with her. She’s very expensive. There is also a doctor in Thousand Oaks – he is listed at http://www.mthfrsupport.com

10 years ago

Dr. Lynch, or anyone who might know:

How does one increase Bh4?

Thank you!

Adrien
10 years ago

Hi,

Could seborrheic dermatitis and periodontal disease an indication of methylfolate deficiency? Thanks

Teresa
10 years ago
Reply to  Adrien

Hey Adrien,

I know that my periodontal disease improved after magneium/calcium pushes.

Terri
10 years ago

Hi,
I am heterozygous for both 677 and 1298. I have been on Vitaprime, a multivitamin which has 400 mcg of B12 and 800 mcg of methylfolate, for several years. My anxiety, OCD thoughts, and panic attacks have not improved. I was also on 5htp and several other supplements for this but stopped them last month. I’m interested in my body producing more neurotransmitters on its own. How do I go about this? My doctor just put me on 1000 mcg B12 methylcobalamin liquid twice a day and 1000 mcg methylfolate in addition to what is in my vitamin but I have only taken B12 once a day and haven’t started the additional methylfolate because I’m worried about side effects. He also wants me to take DMG. Can you give me your thoughts on all this and what am I missing as far as helping my body produce neurotransmitters. Also, I have cricopharyngeal spasms and LPR symptoms of reflux, swollen throat, digestive issues. Being on a 10 food low acid low histamine diet is really helping. Lots of kale and greens and some proteins and apples mostly.

Terri
10 years ago

I also want to say that I took the B12 liquid (methylcobalmin)1000mcg for a few days and felt weird in my head, like not myself. So I cut it down to 500mcg today and feel ok. Also, my multivitamin has 50mcg of B12 methylcobalmin and adenosylcobalamin and 60 mg of Niacin and Folate is 400 mcg. I mistakenly thought it was more. None of this has helped my anxiety over the years. My doctor doesn’t seem to want to test for COMT and MAO but they are responsible for breaking down neurotransmitters, right? Is there something I can get tested to see how well I’m making neurotransmitters? What is stopping my body from this?

Caroline
10 years ago

I am very confused by the terminology being used on this website. My understanding is that the normal gene is 677CC. A heterozygus mutation is 677CT. A homozygus mutation is 677TT. So you can’t be homozygus 677CT you would be 677TT. Also when I got my 23andme results back it did not have results for two genes, just one, and it was 677CT. I also have a heterozygus 1298CA (normal is 1298AA and homozygus is 1298CC). I understand that we have two copies of every chromosome except males who have the xy, but I’m not seeing on 23 and me results where it tells me results from each gene. It just says that i have the 677CT and 1298CA mutation, but doesn’t tell me if it is on one gene or both. Can someone help with this?
Incidently my homecysteine was 16.8!! I started on a supplement with B6, B12, TMG and regular folic acid (5mg) and it went down to 7 something. I am now taking the active form of folate along with many other supplements. I took 3 mg yesterday, headache today (and i never get headaches), so I reduced to 1mg and will try adding niacin and curcumin. Thanks for all the info on this site. I wish more people knew about this.
Caroline

Susan
10 years ago
Reply to  Caroline

Caroline, here is how I understand it. If you use the terminology C677T, that means that at point 677 on MTHFR Gene, you have a C to T translation. So, if someone says they are homozygous C677T, it means that both alleles have the C->T mutation. On 23andMe, when browsing, that would show up at TT because they show you the findings for each allele (not what it was expected to be or the commone allele type). So, when browsing, you would see CC, CT or TT to indicate your 2 copies. If you see TT, you are homozygous for the C677T mutation, if you see CT, you are heterozygous for the C677T mutation and of course CC means you are normal for the C677T mutation (meaning you don’t have it). I haven’t really seen the notation 677CT, but in that case, you I think you would be notating what each of your alleles show. I believe however that 677 C>T is the same as the C677T notation meaning C becomes T at 677. Note also that 677 is not a GENE, but a location (or snp) on the gene MTHFR (that codes for a protein).

A gene will have many bases, every 3 bases is a codon that defines an amino acid. If you look at this chart: http://www.cbs.dtu.dk/courses/27619/codon.html You will see that some amino acids have several combinations of codons that will define them (example, Valine= GTT, GTC, GTA, GTG, you can see that the 3rd position ca be T, C A or G and it will still code for Valine). So, for example, base 677 is the middle base of the codon (677/3 = 255.66). So, if you know what the 3 bases at 676,677,678 should be, you can see what it codes for. Then, if C becomes a T in the middle, you can see what in now codes for by looking in the chart. For some mutations, the change does not affect what it codes for, I think those are called “missense mutations.” basically, those types are not problems. But, if the mutation changes what it codes for, then it becomes more a possible issue.

I agree, the notation can drive you batty. It is really confusing. I hope what I explained makes sense. I wish that 23andMe would atleast tell us what the “Expected Allele” is when we are browsing. Also, I think that A=T and C=G when you are researching.

Adrienne
10 years ago

I have a quick question regarding taking Methyl Guard – I have started off slowly, one tablet per day and increase by one tablet every week. I am now up to 3 per day, and am taking 2 in the morning and 1 in the evening. I have the worst insomnia, and was awake until 3am last night. Should I be taking all 3 of the tablets (and subsequently 4, 5 and 6) each day in the morning? Or should I be taking the tablets in two doses a day, say 2 in the morning and 1 or 2 in the evening? Will taking them all in the morning assist with alleviating the insomnia? Many thanks 🙂

Adrienne
10 years ago

I have a quick question regarding taking Methyl Guard – I have started off slowly, one tablet per day and have increased by one tablet every week. I am now up to 3 tablets per day, and am taking 2 in the morning and 1 in the evening.

For the past 2 nights I have had the worst insomnia, and was awake until 3am last night. Should I be taking all 3 of the tablets (and subsequently 4, 5 and 6) in the mornings? Or should I be taking the tablets in two doses a day, say 2-3 in the morning and 2-3 in the evening? Will taking them all in the morning assist with alleviating the insomnia?

Many thanks to anyone who can assist with this – I am compound heterozygous and new to all this 🙂

Ashlee
10 years ago

Hi Dr. Ben-

I am 8 weeks pregnant and have been on optimal prenatal for a year(800 mcg folate). I’ve been doing really well-sleeping 8-10 hrs per night. My ob convinced me to up my folate by 400 mcg. I couldn’t sleep a wink! Was this dangerous? Do you recommend just dropping back down? Since I am still in the first trimester, I am worried about doing permanent damage.

Thanks so much,
Ashlee

10 years ago
Reply to  Ashlee

Hi Ashlee,
What if you backed down to 800mcg, then slowly increased your folate to what your doc wants you to take. My sleep was also disturbed, for some reason, and magnesium has completely helped in getting and keeping me asleep through the night. I use Calm magnesium by Natural Vitality, but go slowly at first. I did the recommended 1tsp dose and it caused bad diarrhea. After being at the dosage of 1/4 tsp for about a month, I recently increased it from 1/4 tsp to 1/2 tsp before bed, because I’m reading a lot about magnesium insufficiency in many people being common. Seems magnesium is the foundation of the function of our enzyme activity and when we get methylation working better by taking folate the demands for magnesium increase, putting more pressure on our body’s for magnesium that it doesn’t have enough of, so our sleep suffers.

By the way, I’m not a doctor or a member of the medical community. Just sharing what has worked for me.

Jan
10 years ago

Dr. Ben,

My daughter had her first methylated b12 injection (only .5 ml) and had a severe reaction (chest pains etc.) She is homozygous. Since the injections are too much for a start, what do you suggest in terms of a sublingual option? And should she take the niacin now even though the shot was a week ago? She still feels horrible.

Kreiss
10 years ago

Hi Dr. Lynch, I suffer from severe depression. I was tested for gene mutations and got this, but don’t know exactly what mutation it is:
MTHFR T/T – The explanation says I have reduced conversion of folic acid to methylfolate.
COMT val/val. – The explanation says I have higher COMT activity.

My doctor prescribed for me 15 mg of deplin, along with an antidepressant, and I got very anxious. I told the doctor, and he insisted it was not due to the deplin. I stop taking the deplin, but since then I feel anxious. I also, have the COMT mutation. How do you treat patients who have both mutations, and is there anything I can to do stop the anxiety. What tests do you recommend I should do. Thank you very much for your help.

Lynn_M
10 years ago
Reply to  Kreiss

Kreiss,
You are homozygous (double mutation) for MTHFR C677T. The COMT is normal, ie., unmutated. The COMT they are referring to is COMT V158M. Met/Met is the mutated version.

Your doctor is ignorant. Anxiety is a well-known phenomenon resulting from the high levels of methylfolate found in Deplin. Niacin will be helpful in relieving the anxiety. Dr. Lynch has discussed the use of niacin to counteract the effects of methylfolate many times on this website.

You need to start at much, much lower doses of Deplin or methylfolate and slowly build up. Maybe half a gram to start with, although some people are sensitive to even that much. You also should be taking methylcobalamin, aka methylB12, and probably other nutrients as well.

Michael_Dowdy
10 years ago
Reply to  Kreiss

Hello Kreiss. Lynn_M is certainly correct about how powerful methylfolate is. It may well be the most powerful substance I’ve ever used. Not knowing your doctor though I don’t think I’d call him ignorant, but I would say he’s uneducated in treating with Deplin. Four hundred micrograms may cause powerful and unwanted side effects. Fifteen milligrams might be enough to treat you for a whole month. You’re at what is probably the best site to learn about MTHFR mutations and how to treat them. Study the blogs about the effect methylfolate has on patients. I’ve been treated by a very knowledgeable psychiatrist for nearly twenty years now and even though I feel better after taking methylfolate his recommendation to stay on the medications he has prescribed for me as well is obviously the right treatment for me. If your doctor doesn’t realize that he needs to listen to you and learn more about these new findings then maybe he is ignorant. A lot of patients have a pretty good idea of what’s wrong with them and their doctors should listen to what their patients say

Joe
10 years ago

David,

You sound very antagonistic and potentially mentally ill. Why must you fight the good doc on this matter so? ODD?

Joesephina

Alan
10 years ago
Reply to  Joe

What in the world?

Pop psychology is not of much use in a place like this, but if you can’t resist, at least quote the exact words of the person you are attacking.

I can find nothing posted by anyone using the name David that remotely deserves this kind of nonsense.

madge
10 years ago

hi dr ben —

i recently tested positive for 2 copies of the A1298C mutation (homozygous).
(C677T was neg/normal)

my MD prescribed 500 micrograms methylfolate daily and in a week start methylcobalamin 500 micrograms daily.

i began with a pill form of methylfolate 400mcg by jarrow. i didn’t feel so great but had maybe a touch more energy. then i found the seeking health supp. line and first started with one optimal chewable multi and felt actually worse. today i just did a half of an active B12 with L-5-MTHF only and feel almost non-functional (nausea, fatigue, short of breath, achy). is the sublingual / losenge or chewable version more potent to the system or any thoughts? i know my gut isn’t great. i’d love to be able to take your formulas bc they are made precisely for MTHFR. if you suggest niacin is there a brand or form of it that is recommended? and do we have to continually take niacin with these supplements?

thanks!
madge

Naomi
10 years ago

Started with 400mcg metafolin to 500mcg methycobalamin to 50mg niacin back at the beginning of September. Dropped the niacin (wasn’t getting any side effects) and added 100mg B6 by end of October. Gradually titrated up from beginning September 2013 to now (March 2014) to 8000mcg metafolin to 10,000mcg methylcobalamin to 200mg P-5-P and feeling wonderful! I got my genetic profile done with 23andme in December and results came back in January. They indicate multiple mutations affecting B12 absorption, conversion and transport into/out of cells, as well as a high tolerance for methyl donors. Been TTC our second child unsuccessfully for almost 2 years at age 42 with endometriosis, cysts, fibroids and adrenal fatigue; since Sept 2013 (and taking metafolin/MB12) my cycles have regulated, lengthened and resolved luteal phase defect. Since increasing the doses of metafolin/MB12, basal body temperatures are now in healthy range (very low before) and stable, as are all other fertility signs. General health has improved, along with energy, endurance and clarity of mind. Thanks for all your work on this topic, Dr. Lynch. It has been incredibly helpful.

Sue
10 years ago

My husband is Compound Heterozygous.

His naturopathic doctor started him on one tablet of Homocysteine Factors by Pure Encapsulations. He was instructed to take in it the morning on an empty stomach. Within a 7-10 days she increased it to 2 tablets at one time, in the morning, on an empty stomach. He also started taking the probiotic that she recommended – Florajen 3.

After several days of taking the increased dosage, he broke out in a HORRIBLE rash/hives all over his body. He was very sick. He stopped taking both of the supplements and contacted the doctor who did not believe the problem could/would be from the new supplements.

GRADUALLY, with a lot of Benadryl, the reaction subsided and 3-4 weeks is pretty much gone. My husband has been on a long list of prescription medications for his heart, COPD, and arthritis pain for a long time. More recently he has been experiencing gout.

My husband did start going for acupuncture treatments – one treatment so far. It did make him feel better. The acupuncturist said his liver is not happy and gave him a supplement which does not seem to bother him.

My husband is now very reluctant to try the MTHFR supplement again.

Could the problem be that he was detoxing too quickly? Any recommendations?

Thanks for your help.

Selina
10 years ago
Reply to  Sue

Hi Sue.

I am homozygous for c667 and had started taking the active b-12 with methyl folate. After about a week and a half I started breaking out in hives. It was super random. One day it was half my scalp, on another day it was my neck. My thumb swelled up and turned bright red (like I had smacked it with a hammer) and my upper lip even swelled up one day. My doctor told me it was detox. I started taking liver support supplements and continued with the b12 and eventually those symptoms went away. I don’t know if this info helps your husband, but that is what worked for me.

Terri
9 years ago
Reply to  Dr. Ben Lynch

Is there a certain form of B1 and B5? Is there a test to determine our levels? My histamine level is normal but I have extreme congestion (no allergies according to the allergist). We think the congestion is from reflux/LPR reflux but can it be related to MTHFR? How can we tell if histamine is broken down?

Sue
9 years ago
Reply to  Dr. Ben Lynch

Received the Trace Mineral Complex and B Complex Without Folate and B12 yesterday and my husband started taking them this morning, after breakfast.

Questions:
1. Is one capsule of each enough? He’s a large person. Does that matter?
2. Does he wait until he’s feeling good or at least better to start the Active B12 with L-5-MTHF Lozenges?
3. Should he avoid leafy green vegetables until he starts the Active B12?

It seems like everything we’ve done lately has only made him worse and he keeps getting sicker and sicker. The rash/hives on his arms is horrible and he feels achy all over.. He spends all day and all night in his recliner and just walking from his chair to the bathroom consumes all his energy.

So far we’ve avoided going to his regular doctor who would mostly likely prescribe prednisone and antibiotics as he has done 3 or 4 times a year for the past five or six years. And with his naturopathic doctor not believing the rash could be from the supplements we got from her, we really don’t have a doctor to consult. I am ever so thankful for this website.

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