MTHFR Mutations? Help Wanted

MTHFR Help Wanted

MTHFR Help Wanted by Dr Ben Lynch

While reading this blog post, or rather, rant by me, listen to this 10 minute explanation of why I started MTHFR.net

Listen to the Podcast: MTHFR Mutation? Help is Here. (opens in new window)

I know many of you with MTHFR mutations are frustrated. Lost. Confused. Scared.

I understand completely.

I went to naturopathic medical school because I was lost, confused and tired of the ineffective standard medical treatments.

I am not bashing medical doctors – far from. I am bashing the system of medicine itself.

Medicine is profit driven. Period. 

The reason MTHFR is not at the forefront of awareness right now is because there is no money in it.

If MTHFR was at the forefront, think how many billions of dollars would be saved by preventing cancer, embolisms prevented, strokes prevented, schizophrenia and bipolar and depression drastically reduced and mothers not losing their infants to placenta previa or eclampsia.

I’m frustrated just like you.

I happened to stop my highly paid six-figure salary a year company to attend medical school. My parents thought I was nuts.

I didn’t. My wife didn’t either.

We both knew that if we want to get anywhere in terms of health, we need to know how our bodies work inside and out.

So – I invested over $200,000 on my medical education at Bastyr University. I walked off that beautiful campus ready to open a clinic and help 8 to 12 patients a day.

Then I woke up a few years later and realized how many millions of people are receiving inadequate health care. In fact, you are not receiving health care at all.

You are receiving ill care.

What??

Yes.

You are receiving ill care.

When did you go to the doctor last to prevent a disease or optimize your health??

Hmmm?

Right.

Let me make my point clear.

  1. Is your doctor doing anything for you besides giving you aspirin and coumadin?
  2. Are they just giving you high dose folic acid or actually 5-MTHF? If they are giving it to you at all.
  3. They telling you all the risks with MTHFR mutation?
  4. They telling you to test your relatives and close family members?
  5. Are they telling you that your mental and physical ailments may be due to the MTHFR mutation? If so, they telling you how to reverse those physical ailments?
  6. They telling you to test your children since you have the MTHFR mutation? Then to take action to protect your children?

Now let me make one more point solidly clear.

It is not the doctor’s fault. Not by any stretch.

Your doctor wants the best for you.

The issue is there is no training yet for MTHFR. There are no lectures being given for doctors about MTHFR (I am actually preparing a 90 minute MTHFR lecture right now for an oncology association to make them aware of how cancer can be prevented by identifying MTHFR mutations in people early on – and even during treatment).

The bottom line is there is not one place for anyone to obtain effective information regarding the MTHFR mutation.

The information is either way over your head with all the scientific jargon or it is totally frantic as you are reading a blog or forum post from a distressed mother with MTHFR.

My goal with MTHFR.net is to provide an outstanding resource for you so you – and your doctor – have all the tools needed in order to make the right decisions and choose the right treatments.

My goal with MTHFR.net is to prevent MTHFR mutations from killing and/or ruining millions of people’s lives.

My goal is to get you motivated, educated and inspired to take charge of your situation.

I need your help.

MTHFR.net is brand new.

It takes a movement to get something like MTHFR out in the media and into public health policy.

I’m reading research which clearly says basically, “There is not enough benefit to screen the population for MTHFR mutations.”

The genetic test for MTHFR costs only $150! That’s it!

How much does one breast cancer patient spend? About $50,000 to $100,000?? I believe that is in the ball park.

Yes – certain MTHFR mutations put post-menopausal women at a much higher risk for breast cancer.

Cancer is the number 2 killer for women. Cardiovascular disease is number 1.

Cardiovascular disease is #1.

Let me say that again.

Cardiovascular disease is #1

Combine estrogen with a MTHFR mutation and you have a breast cancer and a cardiovascular disease time bomb.

Scary yes.

Something you can do about it? Absolutely.

Subscribe to MTHFR.net. Bookmark us. Share us on Facebook, Twitter and talk about us on YouTube and get your local newspaper to interview me.

I’m on your team when it is difficult to find someone to be.

It starts with one person – and from there – can become a global movement.

I love this TED video.

I’m the crazy guy dancing.

You’re the first person to join me.

Help Wanted.

Dr Ben

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113 Responses to “MTHFR Mutations? Help Wanted”

  1. Hope Wood September 9, 2011 at 2:07 pm # Reply

    I was diagnosed with a double gene MTHFR mutation in 2007after my 20 week baby was stillborn. I was also diagnosed with Factor V Ledien at the same time. I take Metanx and baby aspirin daily. Metanx is not covered by insurance but I want my body to have what it needs so I buy it every month. Others have been told to take Folbic but my understanding is that with the MTHFR mutation our bodies cannot process folic acid or use it at all, therefore we need folate in its pure form, methyfolate (?). Am I in the right ballpark??? Thanks so much!

    • Dr Ben September 9, 2011 at 8:30 pm # Reply

      Hope –

      Great name! My wife’s name is Nadezda (she’s Russian) and her name means ‘hope.’ :)

      You are absolutely correct.

      Folbic is not good to take as it uses only Folic acid – not 5-MTHF. In fact, I don’t recommend Folbic for anyone as taking that high a dose of Folic acid is not safe in my book.

      Metanx is the best I’ve seen for a prescription based homocysteine formula.

      The only thing I don’t like about Metanx is that it uses so many artificial ‘other’ ingredients in order to make it in tablet form and ‘pretty.’ The last thing those with MTHFR mutations need are artificial ingredients and toxins.

      I am not sure of the price of Metanx either.

      I have a new formula of Homocystex coming out soon which will have 5-MTHF, methylcobalamin (active B12), pyridoxal-5-phosphate (active B6), riboflavin-5-phosphate (active B2) and TMG. Research is showing me that in order to effectively support healthy homocysteine levels, all these nutrients combined do a better job of it.

      The other thing about Homocystex is that it is pure. There are no ‘other ingredients’ which are impure.

      Also while having these other nutrients, one does not have to take so much 5-MTHF which is safer in my opinion. Taking any single nutrient in high doses potentially causes undesired effects – such as a deficiency of other nutrients.

      Let me provide some input on possible causes when too much folate is being taken (I haven’t seen any research when too much 5-MTHF is taken):
      - diminishes zinc absorption potentially causing zinc deficiency
      - Folate levels taken over 5,000 mcg can mask a B12 deficiency
      - Folate levels taken over 15,000 mcg can cause insomnia, fatigue, irritability, low zinc levels, GI upset.
      (sourced from: page 296 of Advanced Nutrition and Human Metabolism, 3rd Edition by Groff and Gropper)

      I would make sure you add a multivitamin which has 5-MTHF in it. You should not take any supplement with Folic acid. I need to find a research reference why but I know you shouldn’t.

      I would also ensure you are protecting yourself from free radical damage and clots. Baby aspirin is a good idea since you have Factor V Leiden. Consider using Krill Oil or Fish Oil as well.

      Vitamin C protects folate from oxidative destruction. (page 293 from the same book above). This means that vitamin C allows folate to do its job more effectively as folate is not damaged.

      Also make sure your doctor monitors your Homocysteine levels – and blood clotting product levels (such as fibrin). Fibrin is the main building block behind blood clots. This is why I recommend using Flow Fx as it helps support healthy levels of fibrin.

      Keep us posted how you are doing!

      In health,
      Dr Ben

      • Cassie Brown October 4, 2011 at 11:52 am # Reply

        Quoting Dr. Ben, “Baby aspirin is a good idea since you have Factor V Leiden.” I would like to point out that baby aspirin is not considered especially helpful for FVL patients. I was diagnosed with FVL 6 years ago after having a 29w baby (I also have MTHFR A-C mutation which was missed until 3 years ago). I’ve read extensively about FVL which basically causes the body not to be able to stop making a fibrin clot which mostly form in the veins. Baby Aspirin works on another aspect of clotting and that is the platelets which are more active in arterial clotting. While taking it probably does no harm with FVL, it is not especially helpful for FVL. I do take it now for my MTHFR A-C.

        • Dr Ben October 4, 2011 at 5:54 pm # Reply

          Cassie –

          I greatly appreciate your comment.

          I am not familiar so much with Factor V Leiden. I will spend time researching it.

          It is important that I do as FVL and MTHFR mutations seem to pair up on a fairly consistent basis.

          Again, thank you for your comment!

  2. diane September 9, 2011 at 4:32 pm # Reply

    After being tested for the gene mutation of MTHFR, I found I have two copies of C677T, negative on the Factor V. What would you suggest?

    • Dr Ben September 9, 2011 at 7:52 pm # Reply

      Diane –

      Thank you for your comment and sharing.

      I am glad you’ve been tested and discovered the MTHFR mutations – that is an excellent first step. Knowing that you have it is step 1.

      I am going to write blog posts and create a MTHFR program for people so they have complete information in one place. The MTHFR program will also be a guide which allows people to stay organized and understand MTHFR in an organized fashion.

      To start improving your health, I would definitely:

      Work closely with the doctor who diagnosed you

      Have your family members and children tested for MTHFR – and inform your brothers and sisters and parents so they test also.

      Identify all health conditions and symptoms which you may have which relate to MTHFR.

      Have your doctor monitor your Homocysteine levels and keep them maintained at a low level

      Consider taking HomocysteX (2 capsules twice a day) to support healthy homocysteine levels.

      Talk with your doctor about being on a blood thinner if you are clotting severely. Baby aspirin, coumadin are commonly used. I prefer using fish oils, nattokinase, and reducing homocysteine levels. Your level of clotting needs to be determined.

      Make sure you obtain a multivitamin which has active folate (5-MTHF) in it – and all your supplements must have active 5-MTHF in it – not folic acid or folinic acid. All Seeking Health supplements which have folate in them use only active 5-MTHF.

      If you have children, your children must also only take children multivitamins which use active 5-MTHF.

      Taking only high doses of Folic Acid is not going to work effectively and put you at risk. Taking active Folate as 5-MTHF is an absolute must.

      Taking only high doses of active 5-MTHF is not nearly as effective as taking it along with active B12, active B6, TMG, active B2. All these nutrients are soon to be found in HomocysteX. Currently HomocysteX contains active 5-MTHF, active B12 and active B6. However, my research shows one who has MTHF C677T mutations require high doses of B2 and TMG as well. In order to make it easy and cost-effective for people, creating one formula with all is needed – and done. The new formula of HomocysteX will be available within 2 weeks from now. The current formula of HomocysteX is still very effective for supporting proper levels of homocysteine and is far better than taking 5-MTHF alone.

  3. Shari September 9, 2011 at 7:10 pm # Reply

    I was diagnosed by this Doctor in Richland, WA. Here is a link to his lecture series about it on line.
    http://www.renewashoe.com/medical/

    • Dr Ben September 9, 2011 at 7:55 pm # Reply

      Shari –

      Excellent. Thank you. I have seen these videos in the past. They are quite informative.

      Dr Ben

      • Lynn_M February 28, 2012 at 1:11 am # Reply

        Starting at 10 minutes of the third segment of the videos that Shari referenced, Neil recommends DMG rather than TMG. He says they found that TMG interfered with the methylation from methylcobalamin, but DMG didn’t seem to cause the methyl interference problems. I know Dr. David Brownstein, a noted medical author and physician, also says he likes DMG better than TMG, and he uses DMG in his formulation.

        Are you aware of these variant opinions on DMG vs. TMG, and do you still think TMG is better?

        • Dr Ben February 28, 2012 at 7:03 am # Reply

          Hi Lynn –

          I am familiar with DMG and TMG.

          DMG is the methylated form of TMG.

          Those who are severely undermethylated may benefit more by taking DMG yet those who are overmethylated may benefit from taking TMG as it takes some of the methyl groups out from circulation in order to convert TMG -> DMG.

          There is no one right formula for all people – this is why I recommend such a step-wise fashion in addressing C677T MTHFR mutations. First, methylcobalamin, then add in methylfolate, then add in pyridoxal-5-phosphate then add in riboflavin-5-phosphate with TMG.

          I find it very easy to overmethylate people and overmethylation is harmful just as is undermethylation. Cancer is caused by both – and so are other major conditions.

          So – to answer your question – there is not one better than the other. They are different and have their uses.

          DMG is quite a bit more expensive which is one drawback and if one can generate DMG from TMG, then why not do that?

          There are SNP’s in the BHMT enzyme which may inhibit the methylation of TMG -> DMG. In those situations, DMG is better.

          I am working on a genetic SNP panel that tests for the BHMT SNP’s.

          • Lynn_M February 28, 2012 at 7:42 am #

            Thanks for your quick reply. Does your stepwise progression change any if addressing an A1298C mutation rather than C677T?

          • Dr Ben February 28, 2012 at 6:05 pm #

            Lynn –

            It does. I am working on the A1298C mutation suggestions today.

            Basics for A1298C are:
            - decrease inflammation
            - heal the gut
            - increase positive thinking
            - foundational supplements

          • Pete April 2, 2013 at 1:45 pm #

            Dr. Ben,

            I am reading through the posts on this site because I am trying to get the whole Methyl Cycle straight in my head.

            I had a question about this post because I just searched TMG and DMG on other websites and they indicate that TMG is methylated and that DMG is formed from TMG upon the loss of one of its methyl groups. Here is a quote I found from a site:

            “TMG, also known as betaine, is basically the amino acid glycine attached to three methyl groups. Dimethylglycine is similar to trimethylglycine, except it has two methyl groups.”

            This indicates the only difference between TMG and DMG is the loss of one methyl group and that TMG has more methyl donors than DMG.

            You say that DMG is the methylated form of TMG, am I missing something? Please let me know!

            Thanks!

  4. Farrah September 12, 2011 at 5:36 pm # Reply

    I am Compound Heterozygous MTHFR and currently take Folbee. Should I take something like Homocystex instead?

    Thanks!
    Farrah

    • Dr Ben September 12, 2011 at 7:16 pm # Reply

      Hi Farrah –

      Compound heterozygous MTHFR – but which one? 677 C -> T or 1298 A -> C?

      Folbee contains the inferior forms of folic acid, B12 and B6.

      I do recommend the use of HomocysteX over Folbee for a few reasons:
      1) HomocysteX contains all the most active forms of folic acid (5-MTHF), vitamin B12 (methylcobalamin) and vitamin B6 (pyridoxal-5-phosphate).

      2) Soon HomocysteX, starting 9/22/2011, will also contain vitamin B2 (riboflavin-5-phosphate) and TMG (Betaine).
      These additional ingredients provide even further protection against homocysteine.

      3) Homocystex is free of any food coloring, preservatives, dyes, chemicals and caking agents. Folbee contains quite a few of these which anyone with MTHFR should not be ingesting.

      I recommend taking 1-2 capsules of HomocysteX twice a day – breakfast and lunch. This way the blood levels of all the ingredients stay elevated longer.

      Taking only once a day is not as effective as B vitamins are water soluble so you simply urinate out the excess.

      Evaluating the effectiveness of HomocysteX is easy to do. One, you will likely feel better. Two, your doctor needs to run labs checking your homocysteine levels and levels of fibrin. The levels of fibrin will definitely reduce when taking Flow Fx. I am of the belief that levels of fibrin will also drop while one is taking HomocysteX (due to supporting healthy levels of homocysteine) and while one is taking Optimal Krill Oil or Optimal Fish Oil (due to decreased blood viscosity and reduced oxidation).

      I also recommend the use of Optimal Krill Oil and Flow Fx to further support a healthy cardiovascular system for those with MTHFR C677T mutations.

      These nutrients may be found here:
      http://www.seekinghealth.com/natural-health-remedies/c677t-mthfr-mutation-products.html

      In health,
      Dr Ben

      • Farrah September 13, 2011 at 1:58 am # Reply

        Thank you Dr. Ben! I have one of each mutation.

        • Dr Ben September 13, 2011 at 6:10 am # Reply

          Farrah –

          Obviously – sorry – spaced it!

          Compound heterozygous MTFHR mutation couldn’t be any more explicit for having one copy of each! I need to read and write more slowly at times…

          You need further support for the A1298C form – at least with lifestyle changes.

          Those with A1298C mutations do not detox as well. Make sure you are careful when taking hormone replacements, using birth control or taking medications as you are unable to process them as quickly.(3)

          Make sure you test your hormone levels to make sure estrogens are not getting too elevated. Also test your Estrogen Fractionation and ‘Lipoprotein a’ to further reduce your cardiovascular risk.

          If you are planning on becoming pregnant, you must continue to take Homocystex, Flow Fx, Optimal Krill Oil along with a very good prenatal which also has L-methylfolate in it. NeevoDHA is a prescription prenatal that has L-methylfolate. And – I believe NeevoDHA is the only prenatal with L-methylfolate in it. (I don’t like monopolies but there it is).

          The addition of N-acetyl-cysteine (NAC) is recommended to help reduce the toxic burden seen in those with A1298C mutations. Start with low amounts first – 1 capsule a day – and see how you feel. The side benefit of NAC is that it also helps reduce blood pressure by increasing blood vessel relaxation(1) and helps prevent accelerated atherosclerosis.(2)

          1) N-Acetylcysteine Decreases Angiotensin II Receptor Binding in Vascular Smooth Muscle Cells. J Am Soc.Nephrol. 2005;16(8):2346 -53.

          2) The Antioxidant N-Acetylcysteine Prevents Accelerated Atherosclerosis in Uremic Apolipoprotein E Knockout Mice. Kidney Int. 2005;67(6):2288-94.

          3) http://cebp.aacrjournals.org/content/13/2/285.full.pdf

          Best,
          Dr Ben

  5. Beth September 13, 2011 at 2:16 pm # Reply

    I just have hetero MTFHR – one messed up copy. After two miscarriages, my doc had me on 5 mg of FABB tabs and a baby aspirin a day and I gave birth to a healthy baby girl.

    With only hetero, do I need to continue taking extra folic acid when I’m not pregnant. My doc seemed to think not. If I do, are there any impacts on breastfeeding. And, if I do, are FABB tabs (they contain all the B vitamins) a good option?

    • Dr Ben September 15, 2011 at 8:13 am # Reply

      Hi Beth –

      I am very happy you have a healthy baby girl ;) Congratulations!

      FABB is not a great product in my book.

      Read this post:
      http://mthfr.net/comparison-of-homocysteine-support-products/2011/09/13/

      Make sure you test your little one for MTHFR mutations right now.

      I do highly recommend that you only supplement with active forms of Folate, and active forms of B6 and B12.

      B Complex Plus by Seeking Health has all the active forms of Folic acid, B12 and B6. HomocysteX does as well.

      It is completely safe to breastfeed while taking active B vitamins – in fact, it is preferred as folic acid is becoming a problem for reasons beyond the scope of this response.

      I do recommend you continue monitoring your Fibrin levels. If they get elevated, then consider nattokinase, via Flow Fx by Seeking Health, and/or taking Optimal Fish Oil capsules or both.

      Keep an eye on your homocysteine levels also.

      Optimal Fish Oil capsules are needed for all breastfeeding mothers as the beneficial EPA/DHA is needed for your baby’s neurological development.

      Consider taking 2 capsules of Optimal Fish Oil capsules by Seeking Health once a day.

      Optimal Krill Oil is also a potential candidate as it is high in a potent antioxidant along with EPA and DHA.

      Also make sure your vitamin D3 levels are in the healthy range. Breast feeding mothers should be taking at least 5,000 to 6,000 IU of Vitamin D3 a day – especially during the winter months. I recommend taking 3 DROPS, not dropperfuls, of Liquid Vitamin D360 by Seeking Health each day. Recheck your vitamin D3 blood levels in 3 to 6 months.

      Probiotics are CRUCIAL for your baby as well. Consider giving 1/4 teaspoon of ProBiota Infant each evening to your little girl. ProBiota Infant contains beneficial bacteria in 10 different strains which are designed to support the development of a healthy immune system.

      All suggested products may be found at http://www.SeekingHealth.com or http://www.healthegoods.com/brands/seeking-health.html

      Should you have further questions, please post another comment.

      In health,
      Dr Ben

  6. Jill September 13, 2011 at 7:46 pm # Reply

    Hi,
    I have MTHFR 677T heterozygous. I have had chronic fatigue all my life and have just received a diagnosis of bipolar disorder. Will the product you offer be safe for bipolar? I have heard that TMG can cause shifts to mania. I took Deplin and felt like I was on speed. Why is that and will your product produce different results? My homocysteine levels were very high like 11. Also, will treatment for this eliinate the bipolar or am I stuck on a mood stabilizer the rest of my life?

    • Dr Ben September 15, 2011 at 8:03 am # Reply

      Jill –

      I need to research the reason why those with Bipolar (a label for symptoms – not really a disease in my book) cannot take active folate.

      Homocystex will likely cause you to feel like you are on speed as well.

      Listen to this podcast I did on Bipolar:
      http://www.seekinghealth.com/natural-health-podcasts/bipolar-natural-treatment-suggestions-and-causes.html

      You are absolutely NOT stuck on mood stabilizers the rest of your life. I have successfully removed symptoms of bipolar from people simply utilizing nutrients and dietary changes. They lead a totally normal and happy life without meds.

      Best
      Dr Ben

  7. Dr Ben September 15, 2011 at 8:00 am # Reply

    I just received this via email:
    ” I am trying to get family members to get tested as my sister tested for AC, me two A’s and my daughter AC. One family member told me it cost him $400.00 to get tested and I wondered where one can get the testing done for the $150.00 you mentioned it should cost.

    Also, I had a sister die at age 18 and they never figured out why. I suspect that she also had AC, given the mutliple medical problems in her last few years. My mom still has a lock of her hair from her baby years and I wondered if it were possible to test this both for closure but for understanding what type my father may have had. Mom is getting her order for lab work to be tested this Friday.

    Thanks for any help. I am interested in helping to get this out as I live next to 4 med students who were told by a teacher at Loma Linda Hospital that they would never see this genetic mutation! I have also found several people at work for whom I strongly suspect have it themselves of family does. Since I work at a school I have found a family with this who have 3 children on the spectrum of asbergers and autism. I will be pushing hard to get this in the news or out to med schools – whatever it takes to wake people up to this problem. I would think the insurance companies would prefer to treat us with the right vitamins than to have to deal with all the ailments caused by not having the proper treatment.”

    My response:
    Hi [name removed] –

    I am posting laboratory tests soon – hopefully tomorrow.

    I can get the lab tests at a very competitive rate.

    I then offer consultations so we can discuss your lab results if you like. I cannot diagnose, treat or prescribe – but I can provide my thoughts on what I see and then you share these ideas with your doctor.

    I will email you once the lab tests are posted.

    I am sorry about your sister’s passing. MTHFR mutations can take someone’s life very quickly depending on the severity. It is possible you are correct.

    There is a huge link between Compound Heterozygous MTHFR and Autism.

    I thank you for your outstanding understanding of the severity here of MTHFR. It is massive and all need to know.

    Best
    Dr Ben

  8. Narelle September 15, 2011 at 8:59 am # Reply

    Hi Ben
    Thanks so much for making this site and sharing your knowledge of MTHFR….I was recently diagnosed with issues at both A677T & A1298C heterozygous mutation…

    It has answered a ton of questions for me with regards to health issues I have had over the years. In terms of treatment my GP has prescribed Solgar 5MTHF, B12 and TMG – they seem to be helping. He does not appear to know a great deal about the condition except for his own experience of having it and obviously knowing how to get the test. In Australia it was free under medicare so there should be no reason why people here cannot get checked out. This treatment has reduced my homo cysteine levels quite a bit which is good news!

    My GP here he has done a lot of lab work suspecting links to other conditions and found my under active thyroid was being incorrectly treated with T4 as I was making a lot of reverse t3 from it, I now also take compounded T3, the PCOS that had been earlier diagnosed as causing insulin resistance is quite possible the other way around. I still need to find a way of getting the insulin sensitivity back, currenltly m trying chromium supplements and krill oil….

    The years of chronic fatigue that has been a result of EBV and CMV comes and goes and is VERY much stress driven – something that I believe may contribute to the degree of how this mutation manifests. I never had a single health issue until I had a car crash at age 19 -it has been all down hill from there. Pregnancies made matters worse(although not until after delivery – smooth sailing during them)

    It is nice to actually understand why this shit keeps happening to my body when I do otherwise look after it better than many of my peers….

    Keep up the good work – and I would be happy to share lad results if they aid your research in any way

    all the best
    Narelle

    • SJB October 31, 2011 at 4:37 am # Reply

      Narelle, can you tell me who your Dr is, and how you got this test done in Australia?

      Thanks

      SJB

  9. Heather September 15, 2011 at 8:00 pm # Reply

    Hi Dr Ben,
    I was recently diagnosed heterozygous MTHFR w/ 1 copy of the C677T gene. I asked the testing to be done after having 3 miscarriages in a row. My 1st pregnancy did result in a living, healthy child.

    I’m currently taking the NEEVO prenatal and not doing anything else since my OB GYN and Perinatologist do not believe that this was the cause of my miscarriages. Is there anything else you would recommend for me to take as a precaution while trying to conceive? My homocysteine levels came back within the normal range.

    Thank you,
    Heather

    • Dr Ben September 16, 2011 at 8:31 am # Reply

      Heather –

      I am sorry to hear about your 3 miscarriages in a row. My sincere blessings go out to you and to them.

      I am glad you are taking NEEVO. It is decent because it has active folate in it but I do not think it is enough.

      Definitely consider taking EPA/DHA such as Optimal Krill Oil by Seeking Health or Optimal Fish Oil by Seeking Health. Both are very pure and offer a lot of benefit to a developing infant.

      I also think taking baby aspirin or nattokinase may be a good idea to help prevent clotting.

      It is NOT only about normal homocysteine levels and MTHFR. Doctors do not seem to understand that.

      The risk still exists for the child – and to the individual.

      Research – I know – is conflicting in this area – as I just talked with Stephanie about in a previous comment.

      But think about it.

      You had three miscarriages. You are heterozygous MTHFR. Link? I would think so.

      When doctors say things like:
      “do not believe”
      “don’t think”

      That is inadequate – especially when you are a pregnant mother who has lost three pregnancies in a row.

      Why not take further precaution? What is wrong with preventing another miscarriage?

      Why not rule out all odds?

      Just because homocysteine is normal?

      I don’t agree.

      I’ve got to back up my comments here with hard facts. I was recently at a conference discussing this very problem earlier this summer and it was unanimous among my colleagues that homocysteine is not the only marker for those with MTHFR mutations.

      I need to get this documented and written out.

      In short, I think you’re awesome to have asked for MTHFR testing. I also think you should test for things like vitamin D, iodine levels and others.

      50% of pregnant women are deficient in iodine. Leads to retardation in kids.

      Many pregnant women are deficient in vitamin D. Should be taking 5,000 IU per day of Vitamin D3 according to Dr Cannell, MD of VitaminD3Council.org. Consider 1 capsule of Vitamin D3 5,000 IU by Seeking Health daily.

      Pregnant women should be taking probiotics. Consider ProBiota 12 capsules – 1 every night after dinner.

      Pregnant women should be chewing xylitol gum to help prevent cavities in infants and as they grow up.

      Pregnant women should avoid plastics, cooking with gas stoves, painting, exposure to toxins, etc.

      I need to create a Healthy Pregnancy Program!! I know too much and it needs to get out there…argh.

      I’ll get it done…

      Meanwhile, be careful. Do protect yourself and your little one. You are in charge.

      I’ll get my support for saying homocysteine isn’t the only marker for MTHFR issues…and then I’ll post a blog article.

      Huge issue.

      Best to you and keep me posted on your progress with little one #2 :)

      Dr Ben

  10. Stephanie September 16, 2011 at 4:38 am # Reply

    Hello,

    Thank you for providing all this information for people like us. I just happened to be searching MTHFR in preparation for another pregnancy, and came across this website.

    I first found out I have Homozygous MTHFR in 2007 after my son was stillborn at 40 weeks, 2 days. My OB and Perinatologist don’t really believe that MTHFR had anything to do with him being stillborn, but they took all the precautions anyway for my second pregnancy. I took a baby aspirin, 3mg of Folic Acid, 50ug of B-6, and 50ug of B-12, and a prenatal vitamin with DHA everyday for the course of my pregnancy. My homocysteine levels were also checked at the same time as the testing for MTHFR, but all was normal. I often wonder if my homocysteine levels were high in my amniotic fluid though. With my first pregnancy, I think towards the last week I may have had preeclampsia. I also gained 52 lbs! With my second pregnancy, I ate very well, watched my caloric intake, took all that extra stuff, only gained 25 lbs and felt great throughout the entire pregnancy.

    So, here I am preparing for my third pregnancy and wondering if I should do the same thing that I did with my second pregnancy. My OB just told me that he didn’t think the baby aspirin was necessary because it’s been shown that MTHFR is not really associated with clotting disorders. What are your thoughts? I have already started taking the prenatal with DHA and B vitamins everyday.

    Thank you for the info!

    • Dr Ben September 16, 2011 at 8:00 am # Reply

      Stephanie –

      There is a lot of evidence with MTHFR mutations and stillborn births and preeclampsia.

      Edema can be associated with preeclampsia.

      Homocysteine is not the only thing to worry about with MTHFR. Yes, if homocysteine is elevated, that is definitely a sign of a folic acid issue and potential MTHFR mutation, but it is not the end all be all for being the only reason to take active folate, B12, TMG, B6.

      I am still researching all the reasons why homocysteine is not the only reason to take these nutrients when people have homozygous MTHFR C677T. I know that methylation is interrupted but why that causes still births or other issues is not clear to me.

      Consider running a Methylation Profile to see what is going on with your methylation pathways. I am offering that lab test inexpensively here shortly. It will be about $150 and it will show you blockages in your methylation – beyond the homocysteine problem.

      Homozygous C677T is something to be concerned about and be addressed – especially during pregnancy – even if homocysteine levels are low.

      MTHFR is fully linked to clotting disorders. Yes, there are articles out there that state otherwise, but in my mind, if I see one or two respected journals publishing a meta-analysis, review or study demonstrating clots related to homozygous MTHFR, then that is enough for me.

      Given that you have had one stillborn child (perhaps due to multiple small-artery occlusions blocking oxygen delivery) leading you to take baby aspirin and the B vitamin trio and the outcome was a healthy child, I’d go the route you went with the second pregnancy again.

      Here is one abstract that discusses clots and homozygous MTHFR:
      http://www.sciencedirect.com/science/article/pii/S0049384803004705

      Keep in mind doctors only relate risk with elevated homocysteine – and not the homozygous MTHFR.

      I disagree vehemently. There is not enough conclusive evidence in my mind to risk a woman losing her unborn child.

      Biochemistry is complex.

      Folic acid is needed in many more pathways just beyond reducing homocysteine. And I know that those with homozygous C677T mutations do not get folic acid through very well at all. To me, it is very important that you take something like Metanx, baby aspirin, DHA and a prenatal vitamin.

      I am not happy with Metanx totally because it is full of garbage other ingredients. Yes, in small amounts, but I am a purest and environmental health nut. I also don’t understand why people need to swallow food coloring or polyethylene glycol or titanium or soap! in a tablet. Can you?

      This statement is very important to dissect:
      “My OB just told me that he didn’t think the baby aspirin was necessary.”

      What are the key words there?

      ‘didn’t think’

      To me, that is not enough.

      You have to KNOW or otherwise take precaution.

      Having a healthy, safe pregnancy requires absolute care and knowledge about what is going on. To be fair to your OB, MTHFR is new and unclear. No one knows about it.

      But…your history says it all. Stillborn first child, healthy second child, homozygous C677T mutation (huge), took precautions 2nd pregnancy (all good). No brainer. Repeat what you did with 2nd pregnancy in my book – but with better B vitamin quality.

      Definitely must watch your magnesium and CoQ10 levels also. Doctors always run serum magnesium levels. That is wrong.

      Doctors need to run Intracellular Magnesium levels….to get a true understanding of magnesium levels in the body.

      Make sure you test your first child for MTHFR mutations. Need to catch that right now and work with it accordingly.

      MTHFR is still new and research is conflicting.

      Doctors are conflicting.

      I’m sure my information here is conflicting.

      However, you have to think with a mindset of prevention.

      Standard medicine is not very good at prevention. They are good at dealing with crises or diseased states.

      I excel at disease prevention and health promotion.

      Don’t work with me when you break a bone, but definitely consider working with me if you want to reduce your risk – or your child’s risk – of disease or a severe isolated event.

      A few more things to shout out about:
      - Probiotics. Pregnant women should all take probiotics every night while pregnant. The benefits are staggering to your little one. Consider taking ProBiota 12 by Seeking Health. 1 capsule each evening after dinner.

      - Xylitol Gum. Research shows that women who chew xylitol gum while pregnant have little ones with amazingly healthy teeth – so healthy in fact – that no cavities are seen within the first 6 years of the child’s life compared to other kids!

      - Probiotics when baby is born is paramount from day 1. Consider giving 1/4 teaspoon of ProBiota Infant the first day your little guy/girl is born all the way up to their 3rd birthday. Then switch to a 1/16 teaspoon of ProBiota 12 Powder each night. The benefits of probiotics in infants is staggering again: reduced allergies, improved resistance to illness, reduced eczema, less gas/bloating, less cramping, less smelly stools (something I found out with my three boys).

      As a father of three healthy boys, I am passionate about healthy pregnancies and healthy children. I cannot stand the thought of people losing their children due to ‘I didn’t think MTHFR could cause stillborn babies because your homocysteine levels were fine. Research says it is fine.”

      Look harder. Think outside the box.

      Prevent. Protect.

      In health,
      Dr Ben

    • Cassie Brown October 6, 2011 at 2:03 pm # Reply

      Hi Stephanie,
      So sorry to hear about the loss of your baby. If you did have preeclampsia, I wanted to tell you about a study that is recruiting participants. Dr. Ben may be interested as well. Here is the link:http://www.preeclampsia.org/research/learn-more

      I had a 29w preemie (Pg # 2 after a m/c) and although I did not have spilling protein (a classic pre-e symptom), I did have stroke-level blood pressure for about 2 weeks off and on. I gained 20 lbs with only a 2 lb baby. It was all fluid and diminished rapidly after he was born.

  11. Jill September 19, 2011 at 1:53 pm # Reply

    Dr. Ben,
    Here is something I found on bipolar and folate/B12 with undermethylization:

    Vitamin B12 (Cobalamine) Histadelic (undermethylated) persons, get much worse if they take folates & B-12 which can increase methyl trapping. [Willam Walsh, Ph.D., past senior scientist, Pfeiffer Treatment Center http://www.hriptc.org

    Vitamin Folic Acid Histadelics should avoid supplemental folic acid as it can produce excess histamine. In fact, anti-folate drugs may be required. Folic acid increases depression in histadelic patients and a trial of folic acid could be used to distinguish between histapenics and histadelics. In extreme cases, folic acid in food or in multivitamins is enough to produce the adverse effects.

    Pfeiffer Treatment recommends treatment with SAME.

    I have a coexisting condition called Esophillia Esophogitis — too many white blood cells caused by food allergies in addition to the high homocysteine. Would SAME bring down my homocysteine without making me manic? Also, I think I read somewhere that when the methyl block has been in place, a horrid, sometimes intolerable detox can take place when methyl donors are introduced. Thanks.
    Jill

    • Dr Ben September 19, 2011 at 11:01 pm # Reply

      Jill –

      Your comment inspired me to dig further and I believe I found the connection – or at least one of them – or more than one:

      Methyl trapping does not occur if one takes – and absorbs – both folate and vitamin B12. Methyl trapping happens when people take folic acid only and not the active form of vitamin B12 (methylcobalamin).

      What happens in methyl trapping is a methyl group (CH3) is moved from 5-MTHF to vitamin B12 via an enzymatic process called methionine synthetase.

      The issue is the enzyme methionine synthetase requires vitamin B12 (cobalamin) in order to function.

      If methionine synthetase doesn’t have adequate vitamin B12 to function, the methyl groups created by 5-MTHF do not create methylcobalamin.

      If cobalamin cannot accept the methyl group from 5-MTHF, 5-MTHF accumulates, is trapped and THF doesn’t get regenerated.

      What is supposed to happen is methylcobalamin donates its methyl group to homocysteine to convert homocysteine to methionine – a major requirement for methylation. Thus, the methyl group found on 5-MTHF is no longer trapped as it has been given to methionine.
      (Only thing else required for methionine to assist with methylation is the addition of ATP and magnesium.)

      What is THF used for?

      THF helps make purines and to process histidine.

      High levels of histidine have the ability to create high levels of …histamine.

      Histidine, without THF, doesn’t break down to FIGLU.

      FIGLU is then further broken down into what is a problem for those with bipolar: Glutamate.

      So, having said all this, you can understand what happens if you take high levels of active 5-MTHF and methylcobalamin:

      You will process histidine more effectively thereby lowering your histamine levels. This is excellent.

      The problem is you will suddenly begin processing histidine very effectively thereby increasing your levels of glutamate.

      Glutamate is often elevated in those with bipolar.

      This begs the question then – what breaks down glutamate?

      The glutamate dehydrogenase enzyme breaks down glutamate.

      What is required for the glutamate dehydrogenase enzyme to process glutamate?
      Abilify? Lexapro?

      Hell no.

      Niacin.

      Niacin enables the glutamate dehydrogenase to process glutamate.

      My opinion here is many of those with histadelia have MTHFR mutations – or at least I believe those with MTHFR mutations is what is contributing to histadelia.

      Why do I think that?

      Because those with histadelia have high levels of folate. I bet those with histadelia also have high levels of histidine.

      High levels of folate occur because folate is unable to proceed through the MTHFR enzyme and become methylated to 5-MTHF.

      If something is unable to be processed, it builds up in the body. This shows up on the lab testing as ‘elevated folate’.

      What they should be testing are levels of 5-MTHF.

      I bet the levels of 5-MTHF are low.

      Why?

      Because if folate becomes methylated and lead to 5-MTHF, the methyl group gets donated to homocysteine changing it to methionine (in the presence of B12).

      If methionine is formed, then S-Adenosyl methionine can be made from methionine and ATP via the methionine adenosyltransferase enzyme.

      In order for the methionine adenosyltransferase enzyme to work, ATP and magnesium are required. If magnesium is deficient, then the reaction does not move forward.

      What is S-Adenosyl methionine?
      SAMe

      Remember what I said above:
      Histidine break down requires THF which comes indirectly from folic acid via the synthesis of methionine.

      That said, if folic acid is able to get ‘through’ the MTHFR defect, not only will homocysteine levels drop, but so will histidine levels.

      If histidine levels drop, histamine levels should drop also.

      But…histidine converts to glutamate.

      But you now know that glutamate is broken down by an enzyme using niacin.

      That is a pretty crucial step and nutrient for those with bipolar.

      You asked:
      Will SAMe lower your homocysteine levels without making you manic?
      One study showed SAMe induced mania in a patient
      http://ajp.psychiatryonline.org/cgi/content/abstract/147/5/591

      I can see this happening because a methyl group from SAMe will be donated to folic acid and bypass the MTHFR cycle perhaps and also increase levels of glutamate from histidine.

      If those with bipolar take niacin (vitamin B3) along with 5-MTHF, B12, TMG and B6, will the mania not occur?
      Biochemistry shows this possible. Is it clinically? According to those who practice functional and orthomolecular medicine – yes.

      Read this:
      http://orthomolecular.org/library/jom/2002/pdf/2002-v17n01-p017.pdf

      I think if the authors knew about MTHFR, they would have a real solid paper.

      On another note:
      You are absolutely right that those who are toxic (and we all are) and begin taking nutrients which increase methylation are susceptible to detox reactions.

      This is why I suggest people to order the methylation profile to see what it is looking like – along with a full history by your doctor. Start slowly and work up.

      If there is any block in the methylation process or detoxification pathways, the detox reactions will occur.

      Dr Ben

      • Peter April 19, 2013 at 8:28 pm # Reply

        The idea of vitamin b3 as a treatment for histadellia seems counterintuitive from the perspective of the methyl cycle. From Dr. Walsh’s material, the way to decrease histamine is to increase methylation, as I guess histamine is broken down by SAMe. According to Walsh b3 decreases methylation, and increases histamine.

        Now, I don’t necisarilly believe everything one person says in relation to these things because our biology seems much more complicated than to say “if this one thing goes up, this other thing goes up or down all of the time”. But this seems confusing to me. Assuming that Niacin DOES soak up methylation, it might increase histamine in that sense, but meanwhile the niacin is breaking it down in other ways?

  12. Susan September 21, 2011 at 7:32 pm # Reply

    Hi Dr. Ben:
    Here is my history in a short-ish nutshell: (I just turned 41 and am single no kids) I just tested: C677T Mutation – Negative
    A1298C Mutation – Homozygous

    My parents are old school and listen to authorities..mom a nurse so I have receive over 50 vaccinations in my life that last being in 1997 (I was also in the Peace Corps, in Russia by the way :-) and they loaded me up good before I knew any better). Given tons of antibiotics…thank god I grew up in the 70s before Ritalin.

    I had tons of amlagam fillings which I intentionally had removed in 1998 when I started to wake up to holistic healing. so for mercury…I have tested high with elevated levels – however I did the Andrew Cutler’s hair test and if you know this, I did not meet the counting rules for toxicity, even though mercury was elevated in me. someone said that meant I had it in me but was detoxing it. I also did the NutraVal test and here are my basic results there:

    depleleted B12 and B6 and glutathione and
    low levels of glutamine (161).
    high levels of mercury
    gut dysbiosis
    low glutamate/glutamine (on urinary markers page) (6)
    high glutamic acid (26)
    high oxidative stress
    high detoxifcation impairment
    high methylhistidine
    Disease risk mitochondrial was a zero (which is good).
    the list goes on, but from my own research so far (three days worth) of MTHFR, these seem to be the important items.

    However, part of my issues in my life have been complete overwhelm sensorily easily, fatigue…like the kind you just want to cry from because how are you going to make it like everyone else, accomanpanied with pain specifically in the neck shoulders area.(i have never been able to do main stream living like “normal” people)…depression (was dxed bipolar about 8 years ago which is not true…only symptomatically…but reading here my gluatmate was not elevated), and what’s been getting worse is Pain in my body specifically nerves and neck/shoulder/hips. Epsom salt baths help tremendously. I now get headaches about once a week that last 2 days or so.

    I have been on a healing quest for YEARS as you saw in 98 getting my almagans out, doing tons of cleanses (which never gave me the high that so many talk about) fasting ones, candida ones, parasite ones…never done a heavy metal cleanse though as the whole thing confused me with Andrew Cutler saying one thing and the natural products wold saying another (like zeolite is good, corinader etc.) do you know Cutler’s protocol? i’d be interested to hear if you think it’s the be all end all or just another angle to make $.
    I have done shamanic work, therapy, life coaching, worked with psychics, done quantum energy healing, cleaned up my diet (eat like you I think now..whole food, local, organic) and living environment (clean products for house, skin, hair, clothes etc.), sat in saunas, done colonics, did 100% raw food for awhile, vegan diet for awhile, been to multiple spiritual healing/self help self growth workshops and seminars…got an MA in Transpersonal Psych with life coaching…getting certified as a holistic nutritionist now..work in the natural products industry as a broker (which is why I started getting clued in to the methylation issues). needless to say, my quest has been health and I won’t compromise with the silly little solutions of the medical world. I cannot believe how short sighted the whole thing is…another story…
    But it seems now, I am truly finding the missing piece of WHY, healthy me who does everything pure and clean is still feeling like crap and don’t get the “high” on cleanses and never have had an extreme feeling of well being after doing all the healthy things (holistically healthy…not main stream “healthy”).
    My questions to you are: From the above, what do you think I need?
    2. Doesn’t all MTHFR people have this problem with methlyation? and if not, how do I find out?
    3. Does taking NAC inactivate B12?
    4. Does taking methyl B12 methylate mercury as well?
    5. Eating a whole food organic diet doesn’t give us the methylated form of folate that we need? (obviously not as i still feel tired, achey, and overwhelmed much of the time).
    6. You give suggestions for supplements here, but not dosing numbers.
    I’d love an answer here or set up a consult to get some more testing and interpretation down. I know you don’t dx and am not looking for that…I don’t buy into that anyway and I have no doctor…I self diagnosed…got the test on my own from a free clinic…i always do things on my own outside of the system as it doesn’t provide me any help, only harm.
    What do you suggest my first steps to be? I already ordered the 5-MTHF..I have already been taking methylated vitamins from Ultra Labs, a company I rep which alerted me to this issue, along with a friend who intuited this in me. But taking the basic B complex and Multi of methylated hasn’t fully helped me, only marginally probably because doses are low and I need other things. I do take NAC, but could up that and add in magnesium perhaps and do a heavy metal clense…just which one?
    Love a response here and also set up a consult – an indepth one to see what I need. This is the final piece I think, now I’m ready to be healthy and shine!
    Thanks!
    Susan

    • Dr Ben September 21, 2011 at 8:35 pm # Reply

      Susan –

      Excellent summary and I must first say – my hat is off to you.

      I absolutely respect people like you who take initiative to get better instead of relying on the medical system to do so. Then, add the bitterness and resentment of “Doctors are idiots and I’m still sick.”

      Doctors are not idiots – they are just stuck in a system that is directed by insurance companies, lawyers and pharmaceutical companies.

      It is people like you who are ignored by the medical industry because there are no medications for you, there are no surgeries for you and the end result is you are left on your own – along with millions and millions of others.

      I’ll get off my soap box now.

      There is a lot in your history that has increased your toxic load – or body burden we environmental docs say.

      I guarantee that your heavy metals are through the roof.

      Hair analysis is a bunch of *()$ – excuse me – but I cannot stand that test.

      Here is why hair analysis for heavy metal testing is a bunch of crap:
      1) False Positives: You get heavy metals in your hair from shampoo, the air, the water and other things you put in your hair – such as hair coloring – loaded with metals.
      2) False Negative: Those who feel quite ill live a highly pure life by filtering their water, using natural shampoos and avoiding hair dyes.

      The main issue though is it is the sickest people who get the False Negatives with hair analysis.

      Hair is a waste product – it is actually literally waste along with our nails, urine and feces. Not in a total literal sense but pretty much.

      If hair is a waste product that means in order for hair to show heavy metals, the heavy metals have to make their way into the hair.

      People who are very sick do not have the means to excrete heavy metals into the hair.

      You have low glutathione. Classic example. Without glutathione, you are not going to get the heavy metals out of your system and into your hair.

      Now, if you begin detoxing properly, a hair analysis may be an effective way to see if you are actually eliminating the heavy metals. So, if the hair analysis has a purpose at all, it is to measure the effectiveness of a detox protocol – but not to DIAGNOSE heavy metal toxicity.

      You have good questions:
      1) Does methylb12 methylate mercury? It may. I would say methylcobalamin is a much safer form to use than cyanocobalamin because cyanocobalamin has to accept a methyl group from 5-MTHF and it cannot because mercury steals it. I think there is potential that methylcobalamin can donate to mercury but I think it is much less of a risk because methylcobalamin is in the form utilized by the body. So the body will use it before mercury can mess with it.

      The key is to not take too much methylcobalamin. Take what your body needs and skip the rest. If you have excess, unused methylcobalamin levels in the bloodstream, then that increases risk of methylating mercury.

      This abstract supports my thinking:
      http://pubs.acs.org/doi/abs/10.1021/bi00790a024

      2) Why would NAC inactivate B12?

      I know that more than 500 mg of Vitamin C can and does destroy vitamin B12. Not many know that connection.
      http://www.victorherbert.com/cv767a.pdf

      and http://www.ncbi.nlm.nih.gov/pubmed/3911266

      3) Yes – all people with MTHFR mutations have methylation problems. How do you find out? You order this lab test:
      http://www.healthegoods.com/methylation-profile-doctors-data.html

      You also see first hand how toxic you are – that is a sign of hypomethylation.

      4) Eating foods to get folate give you folinic acid. You cannot get 5-MTHF from food sadly.

      I cannot give dosing on this website. Everyone is different and have different requirements.

      I also cannot prescribe, treat or diagnose online. It is not safe for you or good medicine.

      I can give useful information and provide suggestions – but only your doctor can diagnose, treat or prescribe.

      Cleansing and detoxing is very complicated. People do it wrong every day. Doctors do it wrong every day.

      I approach detoxing from a totally different perspective and that is cautiously and biochemically.

      You may find information about the consultations here:
      http://www.healthegoods.com/consult.html

      Before you set up the consult, I highly recommend you make yourself a timeline.

      Make four rows – with time on the top

      - Birth to now
      - Exposures: Add when you were exposed to amalgams, vaccinations, antibiotics, drugs, chelations, amalgams out – anything significant
      - Onset of symptoms
      - Add treatments

      This way you can see development and progression easily and effectively – gives you a perspective and causation.

      But you are right – A1298C homozygous is a major major ‘WHY’ because you cannot get toxins out effectively.

      Good news is you can get them out – just need to know how and do it properly.

      Best
      Dr Ben

      • Susan September 24, 2011 at 2:26 am # Reply

        Thanks for the reply! I’m glad to hear the good news. For me, I imagine I’m almost there as far as good/vibrant health…all I really need now is the right supp combo and some proper detox specific for my body. I’ve cleaned up everything else over the past decade.

        “I can give useful information and provide suggestionsI can give useful information and provide suggestions”
        I KNOW I KNOW :-) I’m NOT looking for a dx! all I want is what you state above…useful info and suggestions based on your knowledge and experience interpreting these tests. Otherwise, I’d do it on my own, but I’m sure I don’t have quite the biochemistry you have…so I’ll pay you to help me.

        The timeline you mentioned is easy to do…much of it I already have outlined above…fatigue and sensitivity (easily tired and overwhelmed…slaughtered really by life) and pain in my body worsens as the years go by and headaches are new in their frequency as well now.

        So let’s set up the methyl pathway test as you suggested and then do a consult on it. Is that the first step you recommend at this point? I noticed the posts below and you two have some serious tests going on there. Hopefully I won’t need all that.

        That NutrEval test results that I quoted from above is from 2 years ago…i got it w/ a naturopath in Sonoma and then I got IVs w/ glutathione, B12, ascorbic acid, magnesium and a few others, plus a B12 shot. That first night I had shivers like I had the flu, shaking and aching. I’m trying to get them to give me info on if the shot was cynano or methyl and they haven’t gotten back to me. The IV treatments were with hydroxycobalamin I found out. The treatments did not do anything for me frankly. And I wonder if my reaction was from the wrong form or my body kicked started into detox…

        Since that time (2 years ago) I have added in NAC and finally 6 mos. ago added in the correct form of Bs (methylated), but I have not been consistent with the NAC and i’m sure I need much more than this too.

        When you say above that you only should take enough B12 that you need, no more…how do I know this level? I imagine blood work/test only shows it to be in my body, but shows nothing of if it’s being utilized or not (I had my B12 tested too, along with MTRFR a week ago and it was very high).
        Should i do another NutraVal test or just start with the methylation profile? FYI..on my previous NutraEval under Detoxification Dysfunction…my impairment was a 7 with B-Alanine, Cystathionine, Pyroglutamic Acid all high and Glutamine Low. Then under that the “Impaired Methylation” was only a 1 and the only red marker was Vanlimandelic Acid being low….I think low means good here.

        Oh by the way, I never said doctors were idiots…only that the system is short-sighted and honestly I’ve never really used it because intuitively i knew it would not help me.

        Looking forward to hearing from you and working with you soon.
        Susan

        • Susan September 24, 2011 at 2:35 am # Reply

          p.s.
          Oh, and I do want to make it clear that I JUST found out about this at the beginning of this week, so this piece of the puzzle is very new, but makes ALL the sense in the world and explains everything to me now.

        • Dr Ben September 24, 2011 at 2:48 am # Reply

          Susan –

          I know you never said ‘doctors were idiots’ – it is just many do. I’m trying to dispel this idea that docs are idiots whenever possible – and get people to understand the reality of the medical system.

          You understand that reality well which is why you are not working within it. They have nothing to offer you – sadly.

          Chronic disease and standard medicine = bad mix.

          Your post was a perfect moment for me to get on my soap box again because you’ve worked so hard and I want others to understand this.

          One has to work hard in order to obtain – and maintain health. It is not up to doctors to do that. It is up to doctors to guide and inform and educate – unless a medical emergency.

          Sounds like you had a detox reaction from the IV nutrients to me. You should not have been shaking from that. Too much too fast.

          Those with MTHFR have to ‘ease’ into detox carefully and with the right nutrients.

          I also cannot recommend any nutrients for detox until I have more information about all your functions: liver, digestion, bowel movements, skin, chemical sensitivity, methylation profile.

          A comprehensive lab test does make it easier but it is also expensive.

          To keep costs down for you, a thorough history is needed plus the methylation profile to start.

          NAC is a great nutrient – one of my favorite actually – but again – have to suss out what is going on with you before recommending anything.

          You know your body best. If NAC makes you feel good or no change, then it is likely fine to take.

          The moment you feel ‘off’ or ‘shaking’, you are detoxing way too quickly and need to back off immediately.

          My biochemistry is pretty good ;) Been doing it for a loong time and still researching and learning daily.

          I will never stop learning.

          Off to relax – loong intense week here at MTHFR.net and my other companies. While intense, it has been an absolute pleasure talking with you and others about MTHFR.

          I feel as if I am at home discussing such a massive issue with so many like-minded people. Like-minded is perhaps not the right term as you all are affected by this mutation; however, together, we’ll get you better.

          I am going to get myself and family tested for MTHFR mutations. I don’t sense any issues within me but I also lead a very healthy and active lifestyle (ignore the almond milk ice cream container on my desk right now ;) )

          Once I get my testing done for MTHFR and methylation, I’ll post results.

          Till we talk – have a great weekend,

          Dr Ben

          • Dr Ben September 24, 2011 at 4:29 am #

            Susan –

            Per your email wondering if you should do the NutraEval test – I am not familiar with that test and I prefer to use tests that I am familiar with.

            I prefer the Metametrix ION Panel. It provides you over 18 pages of information and I have a $200 lab evaluation textbook that goes with it which I use to interpret the issues and interactions between the issues found.

            I’ve used this test successfully for a number of clients – my biggest success with it – well – two – was getting the information required for an autistic child. He began to talk and interact after adjusting based on the results.

            My other amazing one was completely reversing schizophrenia/bipolar in an individual. Doctor’s couldn’t diagnose him with any particular mental illness – he was all over the place – and he was VERY ill.

            Here is the ION Panel:
            http://www.healthegoods.com/ion-profile-blood-urine-metametrix.html

            I want you to know that I do not profit from this test at all.

            If you’d like to proceed with that testing, it does provide valuable information.

            If you don’t, then that is fine also.

            Do what you feel you need and must do.

            Understanding your body’s unique biochemistry from a comprehensive approach – history and lab testing – does provide a faster and more direct path towards optimizing function and therefore …health.

            Best
            Dr Ben

          • Susan September 24, 2011 at 9:44 pm #

            Thanks for the post. I did just send you an email asking about which test as I did not see these postings (or rather wasn’t alerted to them). I’ll check out the price of the ION test and see how it compares to the nutraEval and see if I can do it. Will make a decision and purchase at least the methylation test and consult asap.
            thanks! have a good weekend.

          • Susan September 24, 2011 at 9:48 pm #

            ok wow! a little pricey, so I’ll wait on that. It looks VERY similar to the NutraEval test, which was done 2 years ago, but I’ll use that data along with the methylation test and work from there. Besides after 41 years of living like this, just two little years ago won’t give us much more info b/c I feel relatively the same, not too much improvement, although I made significant life changes…moved from the Bay area to rural Tennessee…so slower pace, more rest and added in NAC and methylated Bs, but that’s about i.

  13. Jill September 21, 2011 at 7:48 pm # Reply

    Thanks for the fun science lesson! So, I should try niacin (vitamin B3) along with 5-MTHF, B12, TMG and B6? Your formula with an added B6. Where do I get a methylization profile? Lab Core did one and showed heterozygous 677T but I do not know how complete the methylization profile was. Truly, thanks again!

    • Dr Ben September 21, 2011 at 10:01 pm # Reply

      Jill –

      You are welcome! It was fun for me writing it as well – and also helps educate me.

      They say that teaching others makes one understand the material better – and I want to understand better! So it is a two-way benefit! :)

      I cannot tell you to take supplements. I can only provide information. I’m sure you can understand why.

      I highly recommend you locate an orthomolecular physician or a functional medicine doc. Both are knowledgeable in nutritional biochemistry. Naturopathic physicians can be as well.

      Niacin has shown amazing things in those with bipolar and from looking at the mechanism, it makes sense why it works.

      You may order the Methylation Profile here.

      It sounds like LabCore did a MTHFR Genetic Test – which is totally different than a Methylation Profile.

      Talk with your doctor about ordering a MMA test also.

      Best,
      Dr Ben

  14. Jill September 22, 2011 at 2:31 am # Reply

    What is the difference between the test you recommend and Dr. Yasko’s:
    This test is comprised of a 30 SNP panel and will include a Methylation Pathway Analysis. You will receive your results on a CD that will include: data collected from your 30 SNP panel, your Methylation Pathway Analysis based on your results, a work book to help guide you through the program, as well as other addition information. Description of SNPs: ACAT – 1 SNP, AHCY – 3 SNPs, BHMT – 4 SNPs, CBS – 3 SNPs, COMT – 3 SNPs, MAO A – 1 SNP, MTHFR – 3 SNPs, MTR – 1 SNP, MTRR – 6 SNPs, SUOX -1 SNP, VDR – 2 SNPs, SHMT – 1 SNP, NOS-1. The MPA contains suggestions for consideration based on an individual’s test results. By looking at diagrammatic representations of the methylation pathway we are able to draw a personalized map for each individual. The methylation cycle is the ideal pathway to focus on for nutrigenomic analysis because the proper function of this pathway is essential for a number of critical reactions in the body. Nutrigenomics integrates concepts in molecular biology and genomics to study the ability of foods and nutritional supplements and how these may assist in maintaining overall health and wellness. According to the National Center of Excellence in Nutritional Genomics at UC Davis, “The science of nutrigenomics seeks to provide a molecular understanding of how common dietary chemicals (i.e., nutrition) affect health by altering the expression and/or structure of an individual’s genetic makeup… by understanding our nutritional needs, our nutritional status and our genotype, nutrigenomics should enable individuals to manage better their health and well being by precisely matching their diets with their unique genetic makeup.”

    • Dr Ben September 22, 2011 at 2:43 am # Reply

      Jill –

      Looks like a really good test.

      How much is it?

  15. Jill September 22, 2011 at 3:11 pm # Reply

    Dr. Ben,
    Pretty pricey at about 500.00 but could yield some powerful results. Many who do this follow Doctor Amy Yasko’s protocol. Many have good results but you pretty much have to sell the farm to do this protocol. As a consumer, I can’t help but feel she really has a hefty price tag for her clients. Perhaps it is just because insurance covers none of this though…
    http://www.holisticheal.com/health-tests/nutrigenomic-testing

    • Dr Ben September 23, 2011 at 6:49 am # Reply

      Jill –

      $500 for a test like this is pretty fair.

      The question is – how good are the results and suggestions after?

      I am looking into it.

      Dr Ben

  16. Dr Ben September 22, 2011 at 4:49 pm # Reply

    I looked at it.

    It is pricey but could provide some good results.

    My main concern is once you do the test, you are recommended a ton of supplements which makes it even more expensive.

    I am in communication with them and evaluating their system now.

    There are plenty of methylation tests out there along with genetic testing.

    The true question is – do you really need all the information presented in this lab test or not?

    Or is a lab test by Metametrix – the ION Panel – more effective? I prefer using the ION Panel by Metametrix as it is a comprehensive functional biochem test covering many facets. This test is also expensive – but it is very very thorough.
    http://www.metametrix.com/test-menu/profiles/integrated-profiles/individual-optimal-nutrition

    Needs to be sussed out.

    Dr Ben

    • Susan September 26, 2011 at 5:07 pm # Reply

      Found out that the NutrEval by Geneova is a far more economical option at $150 for a test similar to the ION one. This is through a program called PayAssured…so if you have insurance (most qualify), you can get the reduced price. NOTE: this doesn’t mean it’s covered under your insurance, it just means because you have insurance, you get it for an awesome price of $150 versus like $800.
      Not sure if a handbook of interpretation comes with it, but I’ll buy it if it does.

      • Dr Ben September 26, 2011 at 6:37 pm # Reply

        Susan –

        Give NutraEval a shot again. I will look at its information online. The ION Panel is way more than just a nutrient evaluation test – it looks at other things as well. But $150 is quite good.

        I am happy to evaluate the results for the NutrEval and the Methylation profile at the same time during the consult.

        Studying the results on your own is a good idea but you may get some things incorrect – or not understand the larger picture.

        Testing may give you results such as low Vitamin B6 or low vitamin D, E and A but understanding the big picture of why these nutrients are low is what is most important.

        Best
        Dr Ben

        • Susan September 26, 2011 at 8:21 pm # Reply

          Excellent! I’m getting ready to give you a call and solidify things if possible.
          The NutrEval tests for: oxidative stress, organic acids, amino acids, essential fatty acids, toxic elements and nutrient elements.
          thanks,
          Susan

          • Susan September 27, 2011 at 4:26 pm #

            I called Genova and all you need to do is open an account with them and then order the test. It doesn’t matter if you process insurance or not. I They handle that end with the paperwork and they provide in the kit they send directly to me. To be clear for anyone else reading..I only have catatstrophic insurance..this will not cover it, only that I can get the $150 since I am using my insurance through them, not you Dr. Ben.

          • Dr Ben September 28, 2011 at 4:00 am #

            Susan –

            I called Genova yesterday and they said I wouldn’t be able to get you covered.

            I’ll try again tomorrow – today was slammed with about 6 consults.

            I have an account with Genova already so that is not an issue.

            Best
            Dr Ben

          • Lila January 19, 2012 at 4:17 pm #

            There are certain insurances that the PayAssured plan does not cover. Aetna and a few other more obscure companies, plus Medicare, Medicaid, CHAMPUS, or Tricare.

        • Lila January 19, 2012 at 4:10 pm # Reply

          I worked for a doctor who treated kids with autism. We used both the ION panel from Metametrix and the Genova NutrEval. The NutrEval was popular because of the price.

  17. Susan September 28, 2011 at 2:40 pm # Reply

    Is Calcium folinate not good to take with the MTHFR?

    I have been taking Total Amino Solution http://genesaliving.com/products/total-amino-solution/ and just realized it had this as a form of folic acid.
    Thanks!

  18. Dr Ben September 28, 2011 at 8:41 pm # Reply

    Susan –

    Calcium folinate is a step above the standard folic acid.

    I do recommend those with MTHFR take only the most active forms in order to prevent an elevated serum folate level due to ineffective utilization of folic acid.

    Of course, one may obtain elevated active folate levels also should they take too much active folate.

    Everything in moderation :)

    What I recommend instead is a whey protein isolate that is rGBH (growth hormone) free and ideally from grass-fed cattle.

    Whey Slim by Seeking Health is an excellent source of amino acids:
    http://www.healthegoods.com/whey-slim-protein-isolate-with-l-carnitine-microfiltered-300-grams-seeking-health.html

    You may also utilize egg protein powder or pea protein powders. These are also good. Just make sure they are rGBH free, antibiotic free and non-GMO.

    In health,
    Dr Ben

  19. Katy Gonzalez October 19, 2011 at 5:10 pm # Reply

    Hello Dr,

    I’m so glad that I found this site. I’ve just been Diagnosed with MTHFR. mutation C667T one copy. I’ve had 3 miscarriages the first and the third were early miscarriages at 6 and 7 weeks. With the second one I got to nine weeks what was more shocking is that just a week before having my second miscarriage I had heard my baby’s heart beat. I didn’t know much but I had read that once you hear the baby’s heart beat the odds for having a miscarriage drops. Well not my case and now I know why but what is more shocking to me is that the Doctor that diagnosed me with the mutation didn’t seem to preoccupied. He didn’t even prescient me any vitamins after I left his office I was so confused ans I started doing a lot of research and reading about it. I’m trying to get pregnant again but I want to make sure I’m taking the correct vitamins to prevent more miscarriages and be able to carry full term. How can I get a consultation with you? Please help!

    Thank you,
    Katy

    • Dr Ben October 20, 2011 at 5:21 am # Reply

      Hi Katy –

      Great talking with you today. I will be following up with my notes from our discussion earlier. You should have them tomorrow.

      In health,
      Dr Ben

  20. Brett October 22, 2011 at 10:44 am # Reply

    Dr. Ben: I am seeking a better understanding of methylation issues (especially methyl trapping).

    I recently discovered that I suffer from undermethylation (very high histamine) and did not respond well to folate (or methyl b12) supplementation.

    Please explain a little bit about how these mutations relate to undermethylation and overmethylation (and pyrrole disorder). My partner and I both have pyrrole disorder. She has overmethylation problems and I have very significant undermethylation problems.

    I see contradictory advice on the net. I have found some supplements have helped my condition and some worsen it. In addition to antioxidants like astaxanthin, I take a multivitamin only part of the time (because it has 800 mcg of folic acid in it), and take p5p, magnesium citrate, C, zinc, and lysine (I have Behcet’s Disease secondary to an HSV1 infection for which I take the lysine).

    Since I’m very undermethylated, should I be taking some form of folate and b12? If so, which form? Or, should I consider something like TMG alone instead to address the undermethylation problem? Still trying to understand this relatively new area of biomedicine! Thanks for any and all advice and claifications you can give.

    • Dr Ben October 22, 2011 at 7:56 pm # Reply

      Hey Brett –

      Excellent question and one that many cannot answer.

      It is also a long drawn out answer but I will simply provide a summary.

      In my opinion, the only way to absolutely know which nutrients are needed in the methylation cycle is to order a Methylation Profile.

      If one simply takes one of the nutrients which may increase Methionine (the major nutrient needed for methylation), then other parts of the methylation cycle will remain imbalanced.
      The nutrients needed in the methylation cycle are TMG, B12, B6, folate and B2 plays a role as well.

      Given that you both have pyroluria, B6 levels are likely very low.

      B6 is a key player in methylation. When you take B12 or folate, and you are deficient in B6, your methylation cycle is not optimized.

      Methionine (made from B12 and folate) gets recycled back into homocysteine. Vitamin B6 processes homocysteine into cysteine. Folate, B12, TMG are also needed to process homocysteine but through different parts of the cycle.

      Another issue is if you take B12 or folate, you increase methylation and that in turn increases detoxification. You sound like you may be detoxing too quickly. A lower temperature sauna for longer duration may be effective for you.

      I always recommend people to start methylating slowly and with all key nutrients together – not separately.

      I developed HomocysteX to contain all these nutrients in their most active forms in a vegetarian capsule without flow agents or crap in it. HomocysteX contains TMG, methylcobalamin, P5P, riboflavin-5-phosphate and L-5-MTHF.

      That said, I recommend taking 1 capsule of HomocysteX in the morning and see how you feel. If you feel great, then you can try taking another capsule in the afternoon. If you do not feel well at this point, you know you are methylating too quickly and you back down to 1 capsule a day for a few weeks or simply remain on that dose.

      The Methylation Profile will demonstrate how your methylation cycle is performing and you can adjust your dosing of HomocysteX accordingly.

      Of course, there are numerous other issues in play here as well:
      - diet
      - lifestyle
      - occupation
      - other supplementation
      - meds
      - other mutations

      Do you have MTHFR? If so, which mutations? That plays a role here.

      Best,
      Dr Ben

      • Brett October 22, 2011 at 9:56 pm # Reply

        I guess part of my confusion stems from some of Dr. Walsh’s statements like this one: [high histamine/undermethylators] ..”get much worse if they take folates & B-12 which can increase methyl trapping.” – I found this very true for me.

        I’m seeking more detailed information on the ways in which methyl trapping occurs.

        I see now that some of Walsh’s statements may be too broad (and sometimes in error) considering the subject of methylation is much more complex than previously thought. Nevertheless, Walsh’s notes were helpful to me, along with other researchers’ notes, in developing my chart describing overmethylators / undermethylators – in which I’m described to an absolute ‘T’ by information the right side. You can see the results of my literature research notes here: http://is.gd/OFNNDv

        To my surprise, the supplements folate, methyl b12, and B3 (niacinamide) did indeed make my condition noticeably worse the very same day. These (folate, methyl b12, niacinamide) were tested/taken individually (I’d also taken my multivitamin on the same days which included a ‘standard’ amount of all the b vitamins).

        I clearly need to study this subject further before engaging in therapies. There remain many questions for me such as: How does my autoinflammatory condition influence methylation?

        My condition is Behcet’s Disease which is characterized by chronically high tnf-alpha production secondary to a viral infection (which at least in my case is HSV1). This has resulted in a heart attack, stroke, seizures, malignant hypertension, detached retinas, etc.

        I found that my symptoms and their severity were directly related to HSV1 activity – and taking lysine (in therapeutically effective dosages: 1,800 mg TID) proved to be my single most effective tool (as it does effectively slow the virus’ replication). The lysine supplementation, along with vitamin C and zinc/b6 seems to have halted all of the more serious disease components related to B.D. – no more progression has been the result –after 30+ years of suffering greatly, never once was I clinically diagnosed correctly.

        I’d even gone to the Mayo Clinic in AZ for two weeks. At one point my doctors had me on up to 5 medications simultaneously in a desperate attempt to control my malignant hypertension – and it was failing before *I* discovered the cause of my illness. To this day, I’m surprised they were unable to diagnose my condition. But I digress… ;)

        Did my undermethylation problem come first (resulting in immune weakness which let to advancement of my viral illness)? Or, was it the result of chronic illness from my disease? I believe methylation issues may result in some cases from various chronic illnesses.

        How does pyrolle disorder (and the resulting zinc and b6 deficiency) effect these issues (esp. as these deficiencies may compromise immune integrity)?

        If I had undermethylation problems before the B.D., then the viral infection may have advanced as a result of poor glutathione levels and resulting poor immunity. Especially, in the presence of pyrolle disorder. (Lowering glutathione levels leads to viral replication).

        Therefore, identifying and correcting the methylation and pyrrole disorder problems could be crucial in ultimately defeating my B.D.

        This may help explain why some patients with HSV1 infection do not develop B.D. and others like me do.- and point us in the right direction to resolving the immunity defects in affected patients and effectively curing them.

        I continue my research…

        • Dr Ben October 24, 2011 at 6:18 am # Reply

          Which MTHFR mutations do you have?

          Which form of folate are you using?

          What is your B12 level?

          As I understand it, methyl trapping occurs when you have a B12 deficiency and plenty of 5-MTHF. If your B12 levels are fine and you are not taking too much 5-MTHF, you should not get methyl trapping.

          You may be just detoxing too quickly as well – especially if your glutathione levels are really low due to a chronic viral infection.

          B6 is critical in breaking down homocysteine which is essential to making more 5,10 MTHF which then the MTHFR enzyme turns into 5-MTHF.

          Zinc is critical in immune support and heavy metal detoxification as well. Metallothionein is zinc-dependant and critical in heavy metal detoxification.

          Best
          Dr Ben

  21. Lilly October 25, 2011 at 2:52 am # Reply

    Hi Dr. Ben,
    I tested positive for MTHFR type A & C during my pregnancy. I was on heparin BID until 14 weeks pregnant. I was then prescribed Foltx and heparin was discontinued. My PCP minimized the MTHFR and prescribed FOLTX because I requested it. I now have a new doctor who stated foltx is not necessary. Should I go back on the foltx? Also, should my sons and daughter be tested? Thanks!

    • Dr Ben October 25, 2011 at 7:03 am # Reply

      He Lilly –

      Compound heterozygous is serious. In fact, compound heterozygous is very prevalent in children demonstrating autism spectrum disorders.

      We also do not know what your husband/partner has in terms of a potential MTHFR mutation – one, none, two? There may be added risk to the developing little one if the father has passed a MTHFR mutation.

      Test your children’s father before you test your children.

      I do think you should test your children – especially if their father comes back positive with one or more copies of a MTHFR mutation.

      I am working with a MTHFR genetic lab trying to get an excellent discounted price on MTHFR testing. Currently, I offer SpectraCell MTHFR genetic test.

      Only order the MTHFR testing from me as a last resort.

      Try having your doctor order the MTHFR testing for your family first so it is more likely to be covered by insurance.

      Foltx is not utilizing the best nutrients possible for those with MTHFR.

      I do not like people using it. I prefer MetanX or HomocysteX.

      Lowering the amount of fibrin may prove useful as well. This can be done by using a fermented extract called nattokinase. Flow Fx contains nattokinase. Consider taking 1 capsule of Flow Fx in the AM and one capsule in the PM. Make sure it is ok with your doctors as Flow Fx thins the blood. They may need to adjust the Lovenox and baby aspirin dose – and likely so.

      There is a comment somewhere on MTHFR.net that a woman used Lovenox, baby aspirin and she still miscarried a couple times. It wasn’t until she added nattokinase did she carry to full term. Coincidence? Perhaps. Worth a shot? In my book, yes.

      A quality prenatal, EPA/DHA, probiotic, nutrition and lifestyle are all critical as well.

      I highly recommend you schedule a 30 minute consult with me so we can get into detail and specific to your situation.

      A lot to discuss! ;)

      As I said to another mother here at MTHFR.net:
      There is a lot of room to improve here and that is what I’d like to do – simply increase the odds of a healthy outcome. I cannot guarantee anything – I am not a miracle worker – but I certainly can help direct you to calmer and safer waters which are critical to a developing little one.

      In health,
      Dr Ben

  22. Chris Beman October 25, 2011 at 9:09 pm # Reply

    Hello,

    I was just diagonosed with MTHFR 677t and 8 yrs ago with factor V Liden. I have been given a methyl group supplement and that seemed to work pretty good but my doctor took me off of that and has me doing methyl B12 shots every week with still taking a methyl group for folic acid. Since I started taking the shots I have felt like I am slipping back to the old symptoms, are the shots less effective than a daily supplement?

    • Dr Ben October 25, 2011 at 11:35 pm # Reply

      Hi Chris –

      It is hard to say which is more effective as it is purely individual in many cases.

      I would communicate your concerns with your doctor and ask why they pulled you off the supplement you were originally taking.

      I believe that one must continually adapt and alter which supplements they are taking given the current symptoms, situation, lifestyle and dietary intake.

      If you are taking standard Folic Acid, that is not a good idea. I would avoid standard folic acid as MTHFR mutations cannot process it well at all.

      Best,
      Dr Ben

  23. Tanya October 26, 2011 at 6:02 pm # Reply

    Hi Dr. Ben,

    I have been recently diagnosed with single polymorhpism (A1298C), and, as most, I’m confused. I am reading all of the questions and responses and am trying to put all of the pieces together. I’m 46 now, have had two children, no miscarriages, so I feel very fortunate. I have already informed my family about this and am having my two children (17 and 19 years) tested. I lost my father at 52, coronary heart disease, I’m guessing he had this too. My brother (now 52) had a heart attack at 49, he is doing okay and is getting tested for this mutation. My doctor (she is new to me) diagnosed this before even seeing a drop of blood. She started me right away on the following:

    Metagenics VesselCare am
    Metagenics Somnolin pm (before bed)
    Metagenics EstroFactors 3X daily
    SAMe (200mg) am/pm
    NAC 500mg am/pm
    Magnesium Glucinate 235mg (before bed)
    Iodine 1x (am)
    Methyl B12 (2 am)
    Joint Support (Glucosomine/Chondroitin/MSM)
    3 drops of oregano oil before bed

    This was prior to my bloodwork confirming MTHFR. I will be seeing her next week (I have been on this protocol for 8 weeks now) She also did an infectous disease panel and we will be discussing that next week too. Adenovirus, parvovirus, epstein barr all showed up in my blood.

    I am sleeping better, which is great, I haven’t had restful sleep in years. But my joints are so painful and I have days when I just want to sleep, my brain is foggy. I’m struggling with weight and hormonal ups and downs, painful periods. My eating habits are good, I try to stick to a blood type diet, I’m a B, and feel best when I stick to B-healthy foods. Does it seem like we’re on the right track? Should I share any of your products with her? Many of the things I’m taking contain folic acid and folate, is that not correct? Any help or advice would be greatly appreciated.

    Thank you for sharing this, and I plan to be very active in promoting awareness of this unfortunate disorder. I will continue to listen to your pod casts and am anxious to continue this new journey to health.

    Tanya

    • Dr Ben October 26, 2011 at 7:27 pm # Reply

      HI Tanya –

      Appears you have a great doctor who is truly working on your behalf. Great to see.

      I do not want to step on your doctor’s toes or interfere with their plan. Definitely communicate what you’ve told me to your doctor.

      I’ve found it best to have my patients and consult clients to tell me right away what their immediate goal is for today, for next month, for three months and long term. This way I know exactly what I need to focus on and the end result is a happy patient and client.

      Things I am wondering:
      - How is your thyroid doing? Needs a thorough lab test of TSH, T3, T4, anti-TPO, anti-TG
      - don’t see a multivitamin in there
      - what is causing your joint pain?
      - VItamin D3 levels?
      - adrenal dysfunction?
      - dietary intake?

      My thoughts:
      - You have a single A1298C mutation which is more likely to cause mental emotional disruption and increased pain along with increased chemical sensitivities.
      - Would a sauna be helpful?
      - Would avoiding wheat completely help? I bet it would
      - Avoiding dairy help? Perhaps

      You are right that you need to limit the amount of fortified foods with folic acid and only supplement with products containing methylated folate (5-MTHF or L-5-MTHF)

      Make sure you allow time to heal. Many things cannot be fixed overnight or even in a month or two.

      I am very glad to see you are promoting awareness of MTHFR. That is excellent!

      Keep me posted how your following up visits go with your doctor. I’m here for second opinions and consults if needed.

      Best,
      Dr Ben

      • Tanya October 26, 2011 at 9:26 pm # Reply

        Thank you so much for the quick response!

        A couple things I failed to mention, but your questions reminded me.

        How is my thyroid doing? She called my thyroid “Beautiful”, so I am guessing that I’m okay there.

        - don’t see a multivitamin in there – I will ask her

        - what is causing your joint pain? – Not sure, I have inflammation, maybe hormonal? Another question for her. I assume that’s why she ran the additional blood tests.

        - VItamin D3 levels? Very low – 28.6 (I failed to mention she has me taking 5000 units of D per day.

        - adrenal dysfunction? Will discuss with her too

        - dietary intake? I avoid all gluten, refined sugars, corn, chicken (Blood type), nightshades. My staple foods are lamb (lean meats), quinoa, fresh leafy vegetables and whole grains, sprouted grains, walnuts, some dairy, but subsititute almond milk. No processed foods, sugar substitutes…How much time do you have? Haha! You get the point, I’m sure. I cook and bake fresh as much as possible. (yet I struggle with weight!)

        Sauna is a good idea, I do take hot baths, that seems to alleviate the aching. It’s comforting to hear your comments about my doctor, I feel so releved to have found her. She is a huge advocate for this and does some speaking and seminars too. I will be patient, I know it takes time. Everyday is a new beginning!

        Thanks again! Keep up the good work!
        Tanya

        • Dr Ben October 26, 2011 at 9:52 pm # Reply

          Tanya –

          Make sure she ordered everything for your thyroid. TSH doesn’t cut it.

          She needs to evaluate:
          - TSH
          - T4
          - T3
          - anti-TPO
          - anti-TG

          Given that you don’t eat any gluten, your thyroid may be ‘beautiful’ as gluten is very damaging to the thyroid gland. Excellent to see you are not eating gluten. Hard to do initially but the benefits are awesome.

          Weight gain can be tied to eating times, toxicity levels, food intolerances, hormones, adrenal fatigue- the main ones.

          Jump in that sauna – talk with your doctor how to safely sauna and get in there ;)

          Best
          Dr Ben

          • Tanya October 26, 2011 at 10:41 pm #

            TSH 0.994
            Thyroxine (T4) 0.98
            Reverse T3 234
            Triiodothyronine 2.7
            Thyroid TPO 6

            Does that constitute beautiful? :>

            My brother lives in Oregon, the one that has CAD. I’m going to have him contact you! Thanks again…this has been great!

            Tanya

          • Dr Ben October 27, 2011 at 9:04 pm #

            Tanya –

            That is beautiful ;)

            Thanks for the referral!

            Dr Ben

  24. Chris Beman October 27, 2011 at 12:59 pm # Reply

    Good Morning,

    I have been diagnosed with MTHFR 677C and factor 5 Liden and Iam being treated. (This made a world of difference, as far as energy and depression) My 6 yr old daughter is going to be tested for a learning a disability (cognitve and memory mostly) and I am going to try and get her tested for my disorder also. Her doctor will test for it and but is something he will not treat. (I dont blame him and I am not going to push it from his response) Have you heard of any other kids having similuar issues? And if I order the kids multivitiam from you with the methyl groups is it safe to use even if she is not positive? I really don’t want to put her on one of their ADHD meds unless it is absolutley necessary.

    Thanks Chris

    • Dr Ben October 27, 2011 at 9:25 pm # Reply

      Hi Chris –

      Glad you are feeling much better with treatment of MTHFR C677T.

      Your daughter may have other mutations – beyond MTHFR – or she may simply have a nutrient imbalance that is not due to a mutation but simply due to dietary intake and lifestyle.

      It is very safe to use Kid’s Optimal Multivitamin for your daughter – and other kids ages 4 and above.

      From my experience, it is not necessary to put kids on ADHD medications. ADHD can be improved greatly – or eliminated – by simply identifying and restoring nutrient deficiencies combined with improved dietary intake and lifestyle.

      I am happy to consult with you regarding your daughter should you need further guidance and information. As a father of three young boys, I understand the desire of having your child experience the best of health.

      In health,
      Dr Ben

      • Chris Beman October 28, 2011 at 5:30 pm # Reply

        Dr Ben,

        Thank you for your response. I would love to set up a consult for my daughter. Do I need to have her present and how much time do you think I will need for the first session?

        Thank you Chris

        • Dr Ben October 28, 2011 at 11:21 pm # Reply

          Chris –

          You do not need to have your daughter present. What I’d like you to do prior to the consult though is email me as much information as you can about her history:
          - what she eats for breakfast, lunch and dinner typically
          - what she craves: which foods, drinks, activities
          - bowel movements: stools formed, loose, constipated, foul smelling
          - current medications
          - current supplements
          - additional symptoms: runny nose, fatigue, sore muscles, headaches, eczema…
          - general history: when it started, progression
          - what makes her better
          - what makes her worse
          - what are your immediate goals for your daughter? What do you want to have achieved after the first consult? In two weeks? In one month? In three months?
          - what are your daughter’s immediate goals? “” “”
          - please describe what her problem is as much as you can – how is it that you or her doctor thinks she has a cognitive and memory disability along with ADHD?

          Additional laboratory testing may be needed. I try not to order labs as I feel a thorough history is more effective.

          However, if I feel we are not making progress with her after one month, labs may be needed.

          I will never forget what my professor told me:
          80% of the visit must be spent on history
          20% spent on physical exam
          Laboratory tests should be ordered more to confirm potential problems rather than used to discover them.

          We obviously cannot do physical exams but we certainly can do some serious investigating.

          You have my email address. Please reply to it with this information.

          Once I have this information, I’ll review it prior to the consult.

          I would say 45 minutes is what we’ll need to start. Some education is needed here and establishing history. We’ll get to suggestions by the end of the consult so you’ll have things to implement immediately. If we don’t use the full 45 minutes, we can apply it towards the next consult or simply refund it.

          You may obtain the consult appointment here along with payment.

          Make sure to schedule the appointment at least one day after you email me the information I’ve requested above. This will make our time efficient and effective.

          Keep in mind that your daughter may be experiencing symptoms because she has dysfunctional biochemistry. It is my job to help figure out why her biochemistry is dysfunctional. Once her biochemistry is restored, symptoms may resolve as long as her body responds to the nutrients, lifestyle and dietary changes.

          I look forward to working with you and helping your daughter!

          In health,
          Dr Ben

  25. Lauren Stout November 2, 2011 at 1:39 pm # Reply

    I SOOOO appreciate this website and your insight and passion for people with MTHFR. I absolutely think that doctors do not have the proper knowledge about it. With that being said I am absolutely freaking out. I have had two perfectly healthy children (one 5 and one 3). This year my husband and I decided to try for a third. I got pregnant my first month and had a miscarriage at 15 weeks where the fetus had multiple issues. Got pregnant again and had a miscarriage at 5 1/2 wks. This all didnt make sense to me since I had two healty pregnancies prior. I pushed for the bloodwork. It came back positive as hetero MTHFR for the A1298C mutation. I also have PAI-1 (5g/5g) which is a clotting disorder. My doctor acts as if this is no big deal. I will go on to have to have heparin injections with a positive BFP. My meds are what I am confused about, and this is the first month me and my husband are trying to conceive again so I am especially anxious about finding answers. My doctor told me to be on 4 mcg of folic acid, a prenatal, and a baby aspirin. After doing research I have taken it upon myself to switch my regimen around a bit but am wondering if I should further switch after reading your blog. I am currently taking….2000 mcg of l-methylfolate (brand Life Extension), 2000 mcg of folic acid, a prenatal vitamin, a super b-complex vitamin, and a baby aspirin. What should I be taking??? There is alot of info on the c mutation but not alot just for the hetero a mutation…..now I am worried about detox, worried if I should be taking fish oil, worried if I should be on Metanx or Homocystex….Please help!! How should I confront my doctor on these issues??

    • Dr Ben November 3, 2011 at 7:06 am # Reply

      Lauren –

      I feel your frustration which is one main reason why I am here running MTHFR.Net.

      Given that you have a clotting disorder combined with A1298C, your baby is at high risk of dying from lack of oxygen caused by a blood clot.

      Research is out there proving that women with A1298C mutations do indeed throw clots. Most research done on A1298C is with men and women combined. It appears that men with A1298C are not susceptible to clots but women are. To me, this makes sense because women have estrogen and estrogen increases risk of blood clots (which is one reason why cardiovascular disease is the #1 killer of women – NOT breast cancer).

      You have a lot to do here and I urge you NOT to try and get pregnant until you have a game plan.

      Let me help you get a game plan. I, of course, am not a miracle worker nor can I guarantee anything but I certainly believe that I can increase your odds of a successful pregnancy.

      I would like you to schedule a 30 to 45 minute consult with me so we can establish a game plan. Running the risk of another miscarriage is inherent and I’d like to reduce that risk as much as possible.

      Your current game plan is not solid and, in my opinion, will pose risk to your little developing one.

      I’m quick, thorough, knowledgeable and a good listener. Take some time out and schedule a consult.

      Right off the bat – you do not want to be taking 4 mg of folic acid. You should not be taking folic acid. You should be taking only methylated folic acid.

      You also need more clotting prevention support – and more nutrients on board – different than what you are taking currently.

      Here to help.

      Dr Ben

  26. Andy November 15, 2011 at 6:26 pm # Reply

    Hi Doc-

    I have the:
    Non-compound C677T heterogeneous polymorphism
    A homocystine level of 10.2umol/L (which I understand is in the high end of normal range)
    a history of aniexty/depression

    What would you advise for someone in my situation? Supplementation with 5-MTHF? B12? P-5-P?

    • Dr Ben November 15, 2011 at 7:28 pm # Reply

      Hi Andy –

      It is hard to say without a complete picture. There are many other possible mutations which make it difficult to say what will work well for you.

      However, I commonly am recommending HomocysteX by Seeking Health to help support healthy homocysteine levels. A level of 10.2 is elevated in my book. I’d like to see it down around the upper 5′s and low 6′s.

      Consider taking 1 capsule of HomocysteX for a few days to see how you feel. If you feel fine, then consider taking 1 in the AM and 1 in the afternoon. If you begin to feel anxious or irritable, you are taking too much. Stop until those feelings go away and then resume but at a lower and less frequent amount.

      Example, you may take 1 capsule twice a day for a week and feel great. Then you begin to feel anxious and irritable. You stop for a couple days. Then you resume by taking 1 capsule every other day. This seems to work well for you as you are in good spirits and your homocysteine levels are maintained at a healthy level.

      It is totally individual how much to take.

      HomocysteX has 5-MTHF, MethylB12, P-5-P, R-5-P and TMG. These nutrients support a healthy homocysteine level as it tackles it from all angles.

  27. Jessica November 15, 2011 at 6:36 pm # Reply

    Do you know if there is a link between MTHFR, and celiac disease. I have found several women who have tested positive for both. I found a case study done in Italy but am not sure exactly what the results of it mean:

    http://www.ncbi.nlm.nih.gov/pubmed/16917400

    Thanks!

    • Jessica November 15, 2011 at 6:38 pm # Reply

      I forgot to add if you know if there is a link between Endometriosis, and MTHFR as well.

      • Dr Ben November 15, 2011 at 7:41 pm # Reply

        Jessica –

        A direct link between MTHFR and Endometriosis, I don’t think so. I cannot see the connection directly.

        However, indirectly – absolutely.

        MTHFR mutations limit production of methyl groups. Methyl group production, via 5-MTHF, is critical to detoxification.

        Downstream of this inadequate production of 5-MTHF results in glutathione, sulfate, cysteine and methionine not being made in significant amounts. This leads to problems.

        If one is not detoxifying well (by not making methyl groups), xenoestrogens accumulate from the environment within the tissues. These xenoestrogens actually look like estrogen to the body – but are much stronger in action. Take BPA for example. BPA is significantly more stimulating to the body compared to natural estrogen. BPA is a xenoestrogen.

        Most, if not all plastics are xenoestrogens.

        Restore methylation via restoring MTHFR mutations and symptoms of endometriosis should diminish IF, and only IF xenoestrogens are not continually ingested.

        Recycle ALL plastic from your house – I don’t care if it is BPA free, it needs to go. Use only lead free ceramic, glass or food grade stainless steel. Period.

    • Dr Ben November 15, 2011 at 7:23 pm # Reply

      Jessica –

      Great comment.

      I have not heard of the connection but it makes sense in some ways.

      Italians are the largest group of people to test positive for MTHFR mutations so there could be just a coincidence.

      The intestines require a ton of folic acid as they are constantly repairing and regenerating their cells.

      This is speculation as I do not know which form of folic acid the intestines use (specifically, the enterocytes)….a theory:
      MTHFR mutations may severely limit active folate from being made. This may leave the intestines susceptible to inflammation and destruction because active folate is required to make DNA and RNA. This destruction leads to faster leaky gut and autoimmune conditions…ie. Celiac.

      If Italians are now using our crappy GMO wheat, they set themselves up for celiac due to the significantly higher gliadin content of our GMO wheat. I believe all Europe is using GMO wheat now based on my experience.

      My experience:
      - In 2005, I had to stop eating wheat due to allergic responses to it.
      - In 2008, my whole family began reacting. Now all off of wheat.
      - In 2009, went to Russia where we all ate wheat without any reaction. We ate wheat in France and reacted to it.

      In terms of the case studies you found, the results simply mean if you remove gluten from their diet, you are not going to solve the problem because MTHFR mutations are depleting folate levels and slowing methylation significantly because of it.

      What is very important here is that in order for celiacs to prevent nerve damage, their B12 status has to be quite good. In MTHFR mutations, the methyl group coming from 5-MTHF to methylate cobalamin does not happen very often. Therefore, they are very very susceptible to B12 deficiencies.

      As said above, if their blood levels of 5-MTHF are low, their intestines will not heal well and they will also be more susceptible to colon cancer, stomach cancer or other cancers relating to MTHFR mutations.

      It is critical that those with MTHFR and Celiac disease be supported with methylcobalamin, 5-MTHF, vitamin B6, TMG and vitamin B2. If they are not, nerve damage may occur – even if gluten-free.

      I highly recommend those with Celiac Disease and MTHFR mutations take 1 to 3 capsules daily of HomocysteX along with fish oil or krill oil. CoQ10 is critical as well.

      Here is another study from the Netherlands discussing a link between Celiac and MTHFR.

      Thank you for informing me of this connection.

  28. Dandelionmama December 6, 2011 at 5:29 pm # Reply

    Hi Dr. Ben

    I was wondering if you could help me out. I have been sick for 5 years. The illness started in my pregnancy and I became very ill and bedridden. I was living in a moldy basement apartment and also been bitten hundreds of times by fleas from a stray kitten I had taken in. I have no previous illness or health issues. To make a long story short tons of doctors and tests and many diagnosis and misdiagnosis and yet, no treatment has helped (and I have tried everything frmo western to alternative) WHat is always seen in bloodwork is high inflammation, lyme ab’s, and high markers seen in mold-biotoxin illness (Dr. shoemakers work) Again, all treatments don’t help. Recently I had the MTHFR gene and my result was one copy of the C677t and one of the A1298c gene.. it says I am compound Heterozygus. Could this mutation have anything to do with my illness, the severity, complexity.. and how it is neurological in nature. Thank you!

    • Dr Ben December 7, 2011 at 6:10 am # Reply

      Dandelionmama – Great name ;)

      Yes – the compound heterozygous mutation can lead to neurological symptoms due to the inability to eliminate toxins and chemicals well from your body.

      Mold is a killer and combined with compound heterozygous makes a harmful combination.

      The first thing is to address the MTHFR mutation with specific nutrition and then slowly begin to support additional detoxification pathways – through sauna, coffee enemas, lifestyle changes, nutrients

      Getting glutathione levels up are essential but have to be careful how one does that.

      Are you out of the moldy environment now?? 100% mold free? If not, you need to move now.

      I am available for consults should you want to discuss further.

      Having your doctor test your nostrils for the presence of mold is a good idea – go to an EENT doctor and have them do a swab of your nares up high. Then send those swabs in and have them culture for mold.

      If you have lung issues or constant runny nose, these could be related to the past mold and it may be lingering still inside you.

      The underlying causes must be found and eliminated.

      • Richard December 10, 2011 at 9:10 am # Reply

        “Dr” Ben
        I commend you for you marketing skills for your new product here, however this site is over saturated with false statements. For an individual claiming to give out genetic testing and treatment advice (although you did state you are not permitted to diagnose or prescribe) I would hope you’d be more versed in the topic. This website is misleading and boarderline inappropriate from a medical standpoint as you pose as a medical doctor and are in fact both diagnosing and recommending treatments….some of which may seem benign to you, although can have detrimental effects if you dont have medical knowledge of those you are treating. I am a MEDICAL doctor, in the field of cardiovascular medicine and also am conducting a great deal of research on the MTHFR gene. I feel your intent is good, but please for the sake of the vulnerable individuals posting here, do your own research and keep your advice to yourself if it is not based on known science.

        Good luck with your marketing.

        • Dr Ben December 12, 2011 at 7:03 am # Reply

          Richard -

          Thank you for your comment.

          I am glad you wrote.

          I am well-versed on the topic of MTHFR. I am constantly learning about it and spend hours and hours a week buried in the biochemistry, talking with other physicians, working with people, developing genetic tests and other testing which is needed for those with MTHFR.

          Do I know it all? Absolutely not. Will I ever? Absolutely not?

          In your opinion, which statements do you find inappropriate? Which statements are false?

          I, too, am a medical doctor. A naturopathic physician is trained fully in medicine just as a traditional medical doctor is – if the ND attends a credible school such as Bastyr.

          I am not offended anymore about being ‘talked down’ or “Dr.” I am just as skilled as a conventional doctor with some differences. In some ways, I am more skilled and in others, I am less skilled.

          What does this mean?

          It means that we need to work together and stop fighting each other. We need to complement each other’s strengths and weaknesses.

          I would greatly enjoy working with other conventional doctors so people can obtain excellent information on MTHFR. I already am.

          MTHFR.Net is a not a ‘marketing’ website nor a ‘product’ website. It is an informational website with a mix of researched and referenced information along with my opinions and experiences.

          MTHFR is a passion of mine because millions of people across the globe are being left without anywhere to turn. There are chat groups, forums, blogs, facebook pages dedicated to MTHFR. Why? Because people are not getting the help they need.

          If you are working with patients successfully with MTHFR, I need to know your clinic and location along with your website so I can refer people to you. I will post it right on the MTHFR.Net resource page.
          If you have colleagues who are also familiar with MTHFR, even better. I’d love to have them listed as well.

          It would be great to have you write some articles here and post them on MTHFR.Net so people can find you, read your information and get better. You interested? If so, please send them to me along with a brief paragraph of who you are, type of doc, location and url – along with how you work with MTHFR.

          I’d also love to debate on the topics that you don’t agree with me on. We can do a live podcast on it and publish it right here on MTHFR.net.

          I agree that MTHFR is a very serious problem that is affecting millions of people. If physicians do not get out and speak out about it, it will not get to the masses and MTHFR then will continue to harm them.

          There are many things that are not yet known about MTHFR.
          There are many things not yet known about Methylfolate.

          It is absolutely correct that MTHFR C677T and A1298C are not all about homocysteine. You agree?

          It is absolutely correct that those with MTHFR mutations should NOT be taking standard folic acid. You agree?

          It is absolutely correct that those with MTHFR mutations should not be taking antacids, or other medications, that inhibit or seriously affect the CYT P450 enzyme. You agree?

          It is absolutely correct that women who are routinely miscarrying should have their husbands – and themselves – tested for MTHFR mutations. Both. You agree?

          It is absolutely correct that some women routinely miscarry even while taking Lovenox, methylfolate, and baby aspirin. Is it MTHFR causing the miscarriage or other things? Needs to be sussed out.

          I am going to post more medications which are dangerous to take for those with MTHFR.
          I am going to post more lifestyle and dietary changes which those with MTHFR need to consider.
          I am also going to post articles, podcats and videos from other physicians knowledgeable about MTHFR.

          I look forward to hearing from you and, even more so, working together as a team so those with MTHFR can receive the best information possible.

        • Sterling December 13, 2011 at 1:36 am # Reply

          Richard,
          What is wrong with the advice doctor Ben is giving?
          He had the same medical school training as you minus 3 hours of pharmaceutical training and Eastern medicine added which you don’t have any training in. That is the difference between an ND and MD.
          So please do your research like you have stated to him.
          Before I met doctors like Dr. Ben, I had MS, fibro, lesions on my brain, panic disorder, multiple pulmonary embolisms and TIA’s just to name a few.
          His products are not as costly as your Big Pharma products and have helped me much more than anything supplied by a pharmaceutical company.
          My homocysteine has gone from an 11 to a 6.425.
          And Richard if you are researching, you could ask people like me with the MTHFR gene mutation what have we done to recover. Do you have to wait for the NIH, CDC, ADA, AMA, WHO and Big Pharma to tell you differently?
          Doctor Ben has never ever pushed his products on me. I respect him for that.
          By the way Dr. Ben, thank you for MTHFR.net. It has only helped people that have chosen to live an organic toxin free healthy lifestyle.

          • Dr Ben December 13, 2011 at 3:53 am #

            Sterling –

            Thank you for your comment. Much appreciated.

            Our training at Bastyr is quite comprehensive and the first two years are comparable to standard medical schools. You can look at the curriculum of Bastyr naturopathic medical students here.

            But the main point is we are highly trained physicians who do all we can through the least force possible.

  29. Sara December 14, 2011 at 2:21 pm # Reply

    Dear Dr. Ben,

    Your work is a blessing! I know and feel that you are truly concerned and determined to help. My 18 year old daughter was diagnosed with a homozygous MTHFR C 677T gene mutation at 17.

    I insisted that before she would go on birth control she would make sure she didn’t have what I just knew at that time to be a blood cloging condition that both my sister and I have. The results came back as I stated above and to my dismay, the hematologist and the obgyn and her intern doctor all were perfectly fine with prescribing her birth control.

    In a year she tried 5 different ones, the side effects would change but all after 3 months would bring her to slur her words, loose her balance and be dissoriented. The pills altered her mind so much that she couldn’t see the writing on the wall that birth control pills were a danger to her life. Finally, after her 4th emergency room trip,and after uncovering the following she stopped taking them.

    In the ER I read her “Unremarkable” MR angiogram that she took 9 months before to rule out stroke. In the circle of Willis, her Right A1 segment is hypoplastic but is a normal anotomic variant. At that point we convinced her that we didn’t care how normal that variant was and that together with the MTHFR gene mutation it was crazy to have her still on the pill. We had her start taking baby asprins as a precaution.

    You know after all of this her NYU neurologist still dismissed us. I don’t care what anyone says but I know that it was a miracle that she survived this medication.

    Not surprising throughout this ordeal. she was also diagnosis as border line bipolar. I’ve been insisting for months now that the bipolar is a sympthom not the cause. At one point her b12 was 70 and we started giving her b12 but we didn’t realize until very recently from a Thyroid Coach that it must be Methylcobalamin not cyanocobalamin. Then a spark went up when I put two and two together and saw the relationship between methylenetetrahydrofolate reductase and Methylcobalamin. I learned of how important this vitamin is for detoxing the liver and that people with MTHFR don’t have this help!

    Now she is in college and off birth control for almost two months. She is still having lots of sleep issues, migraines, hand and tongue shaking, and sharp pains in her arm with tingling and she doesn’t have an injury. Her blood pressure which at one point in the summer scored to 190/80 seems to have stabilized more. With the exception of the high blood pressure, we know that these are all signs of B12 defficiencies. The problem is that only once in 6 times that we checked her B12 vit level did the result show up positive.

    I hope you can hear in our story, how overwhelmed, distraught and helpless we feel. All three are dealing with it differently. I know I’m becoming obsessed about helping her and neglecting so many of my other responsibilities. It’s just that in my heart I know how serious this all is and that if we don’t acknowledge and do something about MTHFR we will pay the consequences.

    I can’t thank you enough Dr. Ben! You are our answer to our prayers! Let us know how we can help.

    All the best,
    Sara

  30. Najwa Power January 1, 2012 at 5:41 pm # Reply

    I am currently 9 weeks and 2 days pregnant. I have had two beautiful children in my first marriage. I was 18 (1998) with my first child, and he was born with some superficial birth defects and some other complications. I had my second at 20 (2000). She was basically born healthy save a short stint with a heart murmur at birth and a strange benign rice shaped cyst on her tongue. Both of those pregnancies went well and both children were born via C-Section since I would not progress. They were both born at 39 weeks.

    After that, I tried having one more child in that marriage in 2003. I remember walking into the doctor’s office for my 16 week check up, and there was no heartbeat. An ultrasound revealed that the baby had stopped growing at 14 weeks. The doctors ran many tests on me, my ex husband, the baby, but nothing could be found. They were not sure of the sex save that they assumed that the tissue sample they collected was normal and female. This was an extremely stressful time for me anyway as my marriage was already falling apart due to abuse.

    In 2005 I was divorced and had met a new partner and had fallen pregnant. This was also a very stressful relationship. I made it as far as 17 weeks I believe before the baby’s heart stopped. I found out again through an ultrasound and lack of a heartbeat. Once again I had no idea that anything was wrong. It was a little boy definitely. Again, there were no genetic or other complications found. I was taking baby aspirin at the request of the doctor at the time, but i guess it wasn’t enough.

    Earlier in 2011, I was with my current husband and became pregnant. Things seemed to go well but since my husband was trying to tie up loose ends in Ireland (where he was living at the time) i was stressed waiting for him to get to the US. He finally got here and was able to see the baby via ultrasound> i was much more cautious and very anxious about this pregnancy, so of course i spent a lot of time going to the doctor and getting the heartbeat checked and so forth. I noticed that at about 12 weeks the baby was lively and healthy via ultrasound. The following 3 ultrasounds i noticed that the baby was always on his side, but had a decent heartbeat. I went in at 16 weeks, still had a good heart rate, but still sleeping on his side and not really moving. The next week i went back in, no heartbeat and apparently had stopped growing at 16 weeks. Everyone was shocked because all of my blood tests, my genetic tests, the baby’s genetics, and just everything was perfect. I was even taking baby aspirin to see if that would help.

    In that pregnancy the doctors ran all the tests they could on me, or so they said. I had a sonohistogram done, i had no physical issues with my cervix or anything. some minor scarring, but the doctor said it wasn’t significant enough. I had been diagnosed a few years previously with PCOS but the doctors wrote that off as insignificant and had nothing to do with what was going on.

    With this new pregnancy, I’m scared to death. I have been looking up possible issues that could be what was going on, and MTHFR seems plausible. The doctors won’t test for it here. None of them. Just like PCOS, they said it was irrelevant and controversial. They said there was no proof it had anything to do with my miscarriages. Also, I have been diagnosed by symptoms only to have celiac disease and for the past year have been avoiding wheat gluten. They said that didn’t have an affect either.

    Im currently taking the following:

    NEEVO DHA as my prenatal vitamin (I looked that up and it seemed many women with MTHFR are using it and have had good results. I asked for Folgard which was also recommended, but my doctor wouldn’t go for it.)

    Metformin for pcos.

    Baby Aspirin (81mg) at the request of the doctor.

    Lovenox 40 mg 2x a day

    and Buproprion (wellbutrin) a half dose once a day for the severe depression i was dealing with as a result of my last miscarriage.

    Do you have any other suggestions for treatment? Please help me. I cannot bear to think I would have to bury another baby.

    • Najwa Power January 1, 2012 at 5:44 pm # Reply

      Also, I forgot to mention that my funds are limited unfortunately and I’m a medicaid patient, which causes me even more grief because the doctors do not want to put more effort on someone who cannot spend more on their care.

      Thank you so much for your time and care for these situations.

    • Dr Ben January 3, 2012 at 12:47 am # Reply

      Najwa –

      I am glad you are taking some methylfolate and taking anti-clotting precautions.

      I cannot offer treatment advice but I can provide you some information which may help support your pregnancy.

      I encourage you to take additional methylfolate, CoQ10 and a more complete multivitamin/multimineral. While NeevoDHA has methylfolate and some other nutrients, it is not a comprehensive multivitamin at all.

      Consider taking 100 mg of Active CoQH which is one capsule with food twice a day. This provides the most active form of ubiquinol which is shown to be very supportive in pregnancy.

      Also consider taking 1 tablet of Active B12 with Methylfolate and placing it under your tongue three times a day. This will provide an additional 2400 mcg of methylfolate.

      A colleague of mine who works with MTHFR mutations and pregnant women recommends they take 4 mg of methylfolate daily until they are at least 20 weeks pregnant. The NeevoDHA provides 1 mg, the Active B12 tablets provide 2.5 grams and the chewable multivitamin (below) provides 400 mcg which totals 4 mg of methylfolate.

      You may notice that you need less of the Wellbutrin while taking additional methylfolate and methylcobalamin. Please have your doctor adjust the dose as needed.

      Consider chewing 1 tablet of Optimal Multivitamin with breakfast and 1 tablet with lunch. This is a comprehensive multivitamin and multimineral with only high quality nutrients in it.

      Vitamin D3 deficiency is incredibly common and taking 6,000 IU of Vitamin D3 daily while pregnant and breast feeding is recommended by http://www.VitaminDcouncil.org. Consider taking 3 DROPS a day of Vitamin D360 any time of day or you can take 21 drops of Vitamin D360 ONCE a week.

      If you can, I highly recommend you take 1 capsule of ProBiota 12 probiotic supplement after dinner as it will provide a tremendous benefit to your developing baby and your digestive/immune system.

      If you can, I highly recommend you consider 1 capsule of Optimal Krill Oil with food daily as it has potent antioxidant potential along with krill oil which is excellent for neurological protection and cellular membrane support.

      Please have these nutrients sent to you priority mail or overnight mail and get on them immediately.

      Use coupon code HAPPY2012 to save 15% off these nutrients.

      I really would like you to get on them and increase the likelihood of a healthy baby.

  31. DH January 9, 2012 at 2:44 am # Reply

    I may be too late to be your first follower, but count me in. Why? I’ve been plagued with odd medical issues my entire life – seizures as a child, depression, anxiety, lethargy, classic & visual migraines, and IBS. As an adult, the worst was losing 2 children – one from mitochondrial disease and one from Trisomy 21. And I’ve now had 6 miscarriages and a breast lump that I just discovered (I took large doses of folic acid for the past year, reco’d by the RE I saw for the RPL). I’m tired of feeling lousy and I want something different from life – health! After my son died from mitochondrial disease, we never found the exact gene flaw which caused the disease, leaving me to wonder the rest of my life if I had a mtDNA mutation myself that I passed on. I found out last year that I have a homozygous C677T mutation, but was told that it wasn’t anything to worry about, just that you can’t process folate properly and to take a high dose of folic acid. I feel duped and I don’t want this to happen to anyone else. If I can help you connect the dots, especially if there’s any sort of link between this and mito disease or Trisomy 21, let me know.

    • Dr Ben January 9, 2012 at 7:00 am # Reply

      Hi DH –

      I am sorry you are not feeling well and you’ve experienced numerous miscarriages and two lost children. I commend you for sticking with going for the cause of your condition and why your children are not doing well either.

      MTHFR homozygous C677T is a BIG deal and taking high doses of FOLIC ACID is far from accurately addressing it.

      There is definitely a link between MTHFR and mitochondrial disease. I see it every day. I’ve worked with kids who couldn’t even walk because they are too fatigued but now they are doing very well running and playing with their friends. Why? Their mitochondria was shot due to MTHFR mutations and likely other mutations which I’ve yet to test them for.

      Trisomy 21 linkage? I’ve been searching for the reason there and the link between it and MTHFR. I kmow that a CBS mutation which upregulates CBS contributes to a worsening of symptoms. Also Trisomy 21 may also be due to lack of methylation and if proper methylation had been in place during the time of pregnancy, Trisomy 21 may have been prevented – or it may not have.

      I am very VERY excited about this new genetic panel that I’ve worked months on with a genetics lab. I am going to recommend it to any woman who wants to get pregnant as it will greatly identify many significant potential mutations which must be addressed prior to pregnancy.

      My passion is healthy women leading to healthy pregnancies and thriving children which then go on to create their own healthy children. Nothing makes my day feel fulfilled more than identifying ways to make this happen – and I find something that will contribute to this almost daily.

      All your symptoms relate to MTHFR.

      I encourage you to get off of high dose folic acid NOW and switch to HomocysteX. Folic acid is not what you need and high doses of standard folic acid may contribute to increasing the proliferation of pre-existing cancer cells. Methylfolate has not shown this characteristic.

      I look forward to potentially working with you or hearing how you improve – as you will.

  32. Katrina January 16, 2012 at 7:11 am # Reply

    Hi Dr. Ben,
    I was diagnosed with compound heterozygous MTHFR, negative for Factor V during my 4th pregnancy after 3 miscarriages. All three analyses determined birth defects. I delivered a healthy baby girl. I was on progesterone during the first trimester,a prenatal, 4mg supplemental folic acid, b complex, and dha. I have celiac disease (I can’t eat wheat barley rue or contaminated oats), hypothyroidism, and have had chronic idiopathic hives for 6 years. I am scared to death of potential health problems with my daughter, and myself. (my grandmother has severe cardiovascular disease(which started in her thirties! Only 4 years away!), hardening of the arteries, high blood pressure, angina, and strokes. I am understanding reading through your site that my doctors are wrong. The doses of folic acid I’m still taking (2mg daily) are not helping.

    My medications are as follows: synthroid, vitamin b complex (I routinely test deficient), 2mg folic acid, over the counter prenatal, DHA, evening Primrose Oil, Fenugreek (breastfeeding for low milk supply), probiotic.

    I would like to know what I should be taking if I can find it gluten-free? What are some good questions to ask my doctor? What needs to be tested regularly for MTHFR? What lifestyle changes I can make to benefit the compound heterozygous MTHFR?

    -Katrina

  33. Andy January 18, 2012 at 7:24 pm # Reply

    I am compound heterozygous for the mutations, c677T and A1298C in the MTHFR gene. And they say it is not presently possible to determine whether these two mutations are on opposite chromosomes (trans) or the the same chromosomes (cis). This can only be determined by testing the parents. Both my parents are dead. Any ideas on what I should be doing?

    • Lynn_M May 31, 2012 at 7:17 pm # Reply

      Andy,
      Why does it make a difference whether your compound heterozygous mutations are cis or trans? Why would you want to determine that, if it were possible?

      • Dr Ben May 31, 2012 at 11:52 pm # Reply

        Lynn –

        It is possible to have two MTHFR mutations on the same chromosome –

        Example, a compound heterozygous individual may have one mutation on each chromosome – 1 from the mother and 1 from the father. OR the individual may have both mutations on one chromosome – donated by either the mother or the father.

        It is important to distinguish this if one desires children or has children. The only way to distinguish this though is to evaluate which MTHFR SNP’s your parents have and even then it may not be possible.

        If one has two MTHFR SNP’s on one chromosome, and that chromosome is passed onto a child, then that child has two MTHFR SNP’s without even looking at the partner’s MTHFR status. If the partner is homozygous for any MTHFR SNP, then the potential for a triple mutation exists – and I do have clients with triple mutations.

        Remember, a MTHFR SNP is based on location. The MTHFR 677 mutation is located at the 677th base on the 20,000+ long MTHFR gene. So having another mutation at position 1298 is totally possible. The MTHFR gene is on chromosome 1

        • Lynn_M June 1, 2012 at 2:04 am # Reply

          If a couple decided not to have children because one or both parents had cis MTHFR mutations, then I guess cis or trans would matter. If they already had children, seems like just testing the children for MTHFR would be the most straightforward course of action. I guess I don’t know what Andy is trying to decide.

          Since you have shared your family’s MTHFR mutations, Dr. Ben, I am confused by how Theo could have 3 mutations, assuming you are the biological father. Since Tasman is hetero C677T, that means his mutation came from you, since mother Nadia is hetero A1298C. But Tasman doesn’t have your hetero A1298C, so that must mean that you are trans for your compound hetero MTHFR. But if you are trans, and Nadia is only hetero, how could Theodor be Homozygous A1298C + Heterozygous C677T? Where does my thinking go wrong?

          • Dr Ben June 1, 2012 at 3:08 am #

            Lynn –

            You are correct.

            The lab which performed my MTHFR testing did the test wrong. This testing shows that DNA testing can be inaccurate. This is why I caution those who run genetic testing to perhaps rerun it through another lab as you may in fact be treating something incorrectly.

            I’ve been meaning to edit this article stating that the results are impossible to occur.

            I am now working with another genetic lab. I was supposed to talk with their lab director today but got caught up with consults.

            I will redo my family’s MTHFR testing and post it.

  34. Val March 29, 2012 at 11:26 pm # Reply

    The blood clotting disorders resulting in death in my family history are too many to be a coincidence. I was diagnosed with MTHFR this past year. I have lost my father, two aunts, my cousin and second generation aunts. My homocystine level normal My brother just recovered from leg blood clots and after being put on blood thinner was finally taken off them when his homocystine level showed normal value. I will keep oj checking this site for new info, Thanks.

  35. ZGS May 30, 2012 at 11:12 am # Reply

    Hi Dr Ben…

    After one of my stepson’s therapies with his counselor (a Registered Nurse Practitioner and Clinical Nurse Specialist in psychiatry and mental health with Prescriptive Authority) she found that he has double MTHFR mutation… is our understanding that is one from his mom and one from his dad (my husband)… he was prescribed to take Deplin + B12… Deplin price increased too much that now he is taken 5-MTHF over the counter (Thorne Research – 5-MTHF) and now we find out that B12 needs to be the Methyl B12 (methylcobalamin)… added to this he is taking Vyvanse (ADD) and Lamotrigine (for his moods)…

    Now, even we now that he is not consistent taking the medication we also want to understand the “diet” to be follow… we were explained that he cannot eat any product with folic Acid but Folate is ok… that is the hard and confuse part… some product shows Folate/Folic Acid %… what that means? it is Folate or it is Folic Acid? as a teenager is frustrated that he cannot eat “regular” stuff but also he was told that he CANNOT cheat because it is extremely toxic to his body… Also, his moods and behavior had being increasing for worse… once the same counsel talked about Bipolar (run in the mom’s family) but cannot be diagnosed because he is under 16…

    Can we said that all this behavior are related to the mutation? can we said that if someone discovered the mutation in an earlier age of his life maybe ADD will not be part of his life? do I need to test my son just because my husband?…

    Need help… I am confuse and want to understand what are we dealing with…

    Thanks

  36. Tracie Clemenz September 6, 2012 at 6:19 pm # Reply

    I was told by my doctor that the UDSA and Drug administration should be approving L-methylfolate as a prescription within the next year……..instead of it being available in a max form at 15 mg, it would be 30-60mg. I like everyone else here have been sick since I was a child……I lost everyone in my family to strokes, heart disease or cancer. I sit and watch my son’s hands shake just like mine used to….he has the headaches, body aches and stomach problems as well. Hopefully we can catch his before it is too late.

    • Tracie Clemenz September 6, 2012 at 6:25 pm # Reply

      By the way I just found out that I have the homo C677T and hetero A1298C. The Deplin is helping but the headaches and muscle and joint pain will not go away. The doctor said I will always be in pain and also told me I cannot take most of the standard pain medicine on the market.

  37. Angie September 19, 2012 at 3:18 pm # Reply

    Need Help. I am 39 y/o mother of 3 seemingly healthy boys. I was diagnosed with MTHFR A-1298C mutation-heterozygous when I was pregnant with my 3rd child in late 2008. My first pregnancy was normal/full term natural. Second & Third pregnancy I bled the entire prenancy & had Placenta abruptions. 2 nd pregnancy water broke at 61/2 mos so I stayed in hospital with water broke for a month then they induced labor and I had natural birth of a premie. 3rd pregnancy I had a doc who knew about MTHFR (DR EINHAUS/EINHAUS GROUP/FORT WAYNE, IN) she tested me & determined I was MTHFR. I had to give myself daily injections into my stomach blood thinner & also take aspirin daily. I was loosing so much blood at 7 months she had to induce labor and I again had natural birth. Although my last two children were premies I am just very thankful all 3 boys are healthy. Since my 3rd pregnancy though I just haven’t been able to “bounce back” to being healthy again. (Please note: I was also a smoker, but never picked it back up again after the birth of my third child like I did with the others) From the beginning my uterus didn’t want to shrink back to normal size (doc called it a “Boggy uterus”). I have had what I call “bouts” of deep muscle pain that is debilitating. It is mostly in my hands, feet, knees & back. I am also Chronically fatigued…literally cannot funtion. Brain Fog is BAD….feel like I have demensia. Cannot think of words that I want to say or even sales pitches I’ve made hundreds of times over. Some other minor complaints are sores on my tongue, dry eyes, water retention, body temperature isssues, skin sores that won’t heal,low immune system, stomache distention, weight gain, intolerance to hot/cold. My blood often come back I am Iron & Vit D deficient. I usually have High SED Rates & Inflammation markers as well. In the last year I’ve had pnemonia, mono (pos for epstien Barr), Sleep Apnea (which I really don’t think I have), digenerative disc disease, osteo Arthritis, Plantar Fasciatis, I am currently in a cast because my plantar tendon where it attaches to the heal torn away, I am also recently diagnosed by an Oncologist with Underactive thyriod and put on bioidentical T3/T4, Estogen dominance and told to use progesterone/testosterone cream, non funtioning pituitary give myself daily injections of Genotropin human growth hormone. All the while being bounced around from Family Doctor to Rhuematologist, to Nuerologist, to Oncologist and when I bring UP my MTHFR NOT ONE of these Doctors will address it. It most certainly is all connected. Outside of the above stated oncology meds I take I also take a variety of Standard Process whole food vitamins daily (Catalyn, Cataplex B, E-Manganese, Calcium Latate, Symplex F, Drenamin, Ligaplex I, Promaline Iodine, Folic Acid B12) as well as Zinc, Maca Root, Fish Oil, & aspirin. Am I killing myself somehow with what I am currently doing? I know I am Medically bankrupt but Am I just slowly dieing or is there SOMETHING I CAN DO??? Your help is appreciated more than you’ll ever know.

  38. Jennifer Henry November 13, 2012 at 8:14 pm # Reply

    Hello,

    I have had five miscarriages and one successful pregnancy. I found out yesterday I have a compound heterozygote mutation of MTHFR (??)

    My RE said that he recommends taking Folgard and then once I become pregnant again begin taking heparin shots. I’m reading on babycenter.com that I need active b vitamins that are not in Folgard. Is this true? Any advice you can give would be greatly appreciated. I just want to prevent another precious life lost if possible…

  39. Katie December 3, 2012 at 10:05 pm # Reply

    Hello everyone and Dr. Ben,

    I am happy there is a website like this. I was diagnosed with MTHFR about 9months ago. I was shocked, scared and along with that, everything started to make sense. So i guess what im going to do is share my story, hopefully to help others, and get some feedback.

    I was diagnosed with MTHFR by my neurologist at the Dent Institute in Buffalo, NY… Thank goodness. Along with that, i was diagnosed with a PFO, which is a hole in the heart, a birth defect apparently.

    I am only 21, i dont know if that is young to find out i have a gene mutation or not.. but either way it isn’t exactly what a 21 year old is to expect, two possible serious health conditions. I started seeing my neurologist 2 years ago when i was 19 due to suffering from migraine with aura, which consists of temporary close to complete loss of vision for 30 minutes. For 2 years she disregarded my condition basically, stating that it was normal for some people to have migraine with aura… Until last October when i was getting one every two weeks. When i saw her this past March, she seemed alarmed. She asked if heart conditions ran in my family. So i was tested for a few things. And as i said above, tested positive for the MTHFR gene mutation.

    She didn’t tell me much about the gene mutation, which i am kind of angry about, but i am at the same time thankful that it was discovered and that i am being at least somewhat treated for it with Deplin. I am not sure which mutation i have exactly, i was told that i inherited a mutation from each of my parents. All she said about the mutation was that my body was unable to absorb folic acid. I will be sure to get more details on my exact mutation when i see her in January. When i got home, i looked up MTHFR on the internet, and that is when i became scared.

    It can cause blood clots (which i am even more at harm for because with the PFO hole in my heart, it can allow a clot to pass through and shoot right up to my brain…) birth defects, miscarraiges, depression, anxiety, and a long list of things including cancer…

    I still dont know too much about MTFHR, and i plan to really figure out more info on it all, along with ways i can change my lifestyle to lower my risks, and habits i can form to lower my risks as well.

    I must say, ever since i was diagnosed and put on medication/ “medical foods” (Deplin) which insurance doesnt cover… I am a whole different person. I am on 162 mg of baby aspirin to prevent blood clots, i am on 2500 mcg of vitamin b12(I had a b12 defficiency) and i am on the Deplin. Before i began this, i was extremely tired all of the time, i would sleep 8 hours at night and 2 hours in the day napping, i had anxiety, and what i think was depression, as much as i had denied it or didnt want it to be true. I especially suffered this in the last year before i was diagnosed. I also, as i said earlier, was getting the migraines every two weeks.

    Now, i am pretty much always energized, seldom have anxiety, and rarely feel down or depressed. Along with that, i havent suffered from any migraines ever since.

    I agree, i wish MTHFR was more well known… i am thankful i was diagnosed when i did, but it took two years before my Nerologist jumped the gun to test me.

    Thanks for letting me share my story

    ~Katie

  40. P April 19, 2013 at 7:59 pm # Reply

    Dr. Ben,

    I have been trying to understand the difference of hydroxyb12 compared to methylb12. As far as I know, and according to this article (http://doctorsdata.com/methylation.pdf) hydroxyb12 is just as much a part of the methylation process as methylb12 is.

    “It is 5 methyl THF that passes its
    methyl group to hydroxycobalamin, vitamin B12.
    Hydroxy B12 then becomes methyl B12 which
    donates its methyl group to homocysteine.”

    On forums people stress methylb12 (as I do understand it is an “active” methyl donor) and downplay hydroxyb12. Now I would be all over methyl-b12 if I knew I wasn’t going to react poorly to it. I am trying to go for the most “natural” approach, and slow and steady approach as I can possible. As far as I can tell, people are taking hydroxy and methylb12 for the same reason, b12 deficiency, but one might prefer methyl if they are undermethylated.

    The ultimate goal for an undermethylated individual is to get the methyl group passed from 5-mthf to SAMe, is it not? So obviously along the pathway one could supplement from the most direct to least direct form with 1) SAMe, 2) Methionine,3)methylcobalamin/ TMG 4) 5 mtfh 5) folic/folynic acid (assuming one doesn’t have an MTHFR defect).

    I watched your entire presentation and I know your recommendation in the folate cycle is to start with methylb12 first, or some form of b12 at least and then move onto folate.

    Bottom line is, does supplementing with hydroxyb12 enhance methylation? I know it needs to be methylated, but that methylation gets passed onto homocysteine to form methionine, so as far as I know, hydroxyb12 does not “demethylate” you. In your presentation I think you mentioned a sort of “watering down” effect if one were to supplement with non methylated forms of folate, which makes me wonder does the same thing happen with hydroxycobalamin?

    I can see a couple of possible reactions:

    1) I am really low on any form of b12, therefor hydroxycobalamin would be helpful in that it would stop methyl trapping from occuring and allow 5 mtfh to convert into methionine.

    2) I have moderate amounts of b12, and methyl trapping is not an issue, but I have an MTHFR defect and I am not getting much 5 mtfh at all, so I would need some form of methylating agent.

    3) I have adequate amounts of 5 mtfhr and methylcobalamin, but possibly have some sort of MTR or MTRR defect and taking hydroxycobalamin might “water down” the existing methylcobalamin.

    I have not recieved my 23andme results yet, so I am still waiting to know my SNPs. What is your take on hydroxy cobalamin as a methylating force?

  41. Komoss February 23, 2014 at 6:51 am # Reply

    Can I take Hgh having mthfr and factor V Leiden?

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