MTHFR and Methylation Presentation – PDF Version

Many physicians have requested copies of various slides from my MTHFR and Methylation Presentation.

I have accomplished this finally.

 

Please respect my work and cite me as author: Benjamin Lynch, ND of www.MTHFR.Net

Education is critical here – for all of us.

You may share as little or as much with your physician as you desire.

For the full video presentation:

22 Responses to “MTHFR and Methylation Presentation – PDF Version”

  1. Dolores Seames June 8, 2012 at 3:19 pm # Reply

    video ends early. It stops near the end of “Main Therapies for MTHFR”. After Breath Thaerapy

    • Dr Ben June 8, 2012 at 7:26 pm # Reply

      Hi Dolores – it was the last slide ;) But yes – I would’ve talked some more on that area – not sure how it cut out…technology…

      I’ll have more videos out.

  2. Audrey July 31, 2012 at 5:22 pm # Reply

    Dear Dr. Lynch,

    My family is riddled with autoimmune disorders; but perhaps the strangest thing is the way that the mind “rounds off” experiences — it’s not just for numbers anymore! — to fit the way that Western Medicine perceives one’s medical state. There is a process of internalization — if that makes sense, to internalize something that is already internal! — that happens when one cannot be helped by a doctor who presumes that because he cannot help you your thoughts, your articulation of the problem, is in fact the problem, rather than the physicality: in order to agree, to find help, solace, company in thought, one can rationalize that the physical IS rational or willful in its genesis. I have tried really hard to make stories fit what the collective (medical) community says, to take it on myself, to say, “It’s just me” — and trot off to talk therapy. I leaned to ignore my migraines, for example, trying to talk through the aphasia they brought on, apologizing for my very lack of words, until they were actually bad enough to blind me — then I got my eyes checked. When I hear “confabulation” connected with vitamin deficiencies and think of the way it reminds me of the clouds, where once there were rivers, that move within my own mind as I search for information, then I think: I could almost be convinced that this problem is my thinking. It is becoming a problem of my thinking, even if it wasn’t before. It’s just a matter of time. And so, time is of the essence.

    I say this because I have in my hand a note that my nine-year-old daughter wrote the other night when she was having a seizure: “I don’t mean to make the noises it is not mot me.” I include her syntax because I find it so poignant and relevant, that mix between self and negation. She had just overcome an upper-body seizure only to find that she was wailing while her eyes continued to flutter — we thought she needed to throw up, what with her gestures to her throat, and she ran for the closet instead, to get her art pad and pen, and her hand sometimes couldn’t hold that pen.

    I have done what I can all along, of course; but when I saw that familiar sentiment, one that I had tried to my own family as a child, trying to declare independence from illness, I had a hunch that her problems might be related to my own, that maybe I really did experience paralysis before I woke, that maybe the fluctuations in my functionality were more than my “mood.” I am 42, and have spent my life ducking in and out of full function, but have been dragging so much lately that my Hashimoto’s, my migraines, my nystagmus, my dizziness, win more of my moments than my work. I struggle to remember words. I am a writer. I couldn’t remember Vanessa Redgrave’s name last night, and I was an actress in my productive days. I do not want my children to spend their lives hoping for help and finding their talents wasted on biomechanical accident; and I’m hoping you can help me with some suggestions for a balanced vitamin regimen for my family.

    My daughter has been denied coverage due to her epilepsy — though the diagnosis was Benign Rolandic Seizure Disorder of Childhood, and the seizures are all mild.

    A functional medicine doctor I am fortunate enough to call my neighbor tested me this year for MTHFR mutation, and found I am homogeneous for the A1298 mutation. My husband hasn’t been tested yet, but has sleep disorders and depression that have become worse with time, suggesting that depletion of nutrients could be aggravating his condition, like mine. We were all already gluten free, having tested for gluten intolerance years ago after my two pregnancies, when I was so exhausted and the kids were having diarrhea too regularly. My daughter has been off gluten since she was three.

    My homogeneity means that I know my kids have at least one MTHFR mutation. I have been on Thorne premethylated folate and B12, Folgard I think it’s called, and I just saw last night on your site that homogenous A1298 mutations might not require folate at all — and the Lucidal I’ve been taking for cognitive relief has Folic Acid in it, also cyanocobalamin, which I also understand from your presentation is contraindicated. My Hashimoto’s is not extreme, but I wonder whether I should be taking thiamine, too? I used to be sharp, but I now have trouble carrying information from one Wikipage to another, so all I really know is that thiamine is related to thyroid problems and sometimes to nystagmus, which I have; but I cannot seem to memorize the cycles well enough to make my own determinations. I apologize.

    I think I need magnesium, D, fish oil/krill oil?, premethylated B12, selenium, Alpha lipoic acid, taurine, B6, B1, biotin, — and I read on your site that BH4 is useful? But, after taking things that seem in your talk to be contraindicated, I am nervous about what I should be giving my daughter. With Rolandic epilepsy, I can guess she needs nervous system support just as I do; actually, I suspect Panayiotopoulos syndrome, because my son has had what I now realize, with my daughter’s diagnosis, was probably a seizure in the night, and they are both enuretic in spite of all our years of nighttime training, which suggests to me autonomic system seizures in addition to the Rolandic, motor seizures. And indeed, when I try to get my son up at night to go to the bathroom, his sleep state is such a rag-doll absence that I can’t wake him, for one to twenty minutes. Even when he opens his eyes and can answer me, it turns out he’s sleepwalking: I can sit him on the toilet and he stays there, asleep with his eyes open, unable to do anything until I walk him back to bed. We’ve had both kids in for sleep studies. They found nothing but Restless Leg Syndrome and high CO2 levels — but they keep the room cold so that the electrodes don’t come off, and I was there: I know they weren’t sleeping and grinding their teeth like they usually do. Eight thousand dollars later, they tell me “we know we’re catching the worst cases of apnea,” but my kids get no treatment, and they haven’t found the epilepsy.

    Oh Dr. Ben. I’m so sorry to ramble. I really can’t tell where the truth lies. I’m hoping that if we can get on a regimen of vitamins that supports us, these symptoms, including my own confusion, will decrease enough for me to work again and for the kids to get a solution that allows our family life to be about something more than surviving.

    What can I safely give a child with Rolandic epilepsy and one A1298 mutation? If there is an undiagnosed C677 mutation, are there any supplements that would put the child at risk for cardiac difficulties, in case I am right that Panayiotopoulos/autonomic seizures are also happening?

    We are in Seattle. But even the functional medicine that my beloved neighbor is helping us with seems to be young enough a practice that, according to your information, I’ve already made mistakes as to what I’m taking. My kids’ neurology seems delicate enough that even supplements don’t seem benign. And with my younger brother having Primary Sclerosing Cholangitis, my older sister having experienced a schizophrenic break at 25, me with Hashimotos and gluten intolerance and basilar migraines, and my younger sister having developed full-on Celiac’s and Graves disease, I am feeling like my DNA is a time bomb on a raft. With my daughter’s seizures getting a little more frequent, I’m afraid that her neurology appointment this week will bring some anti-seizure med that will make things worse — your presentation suggested that some could.

    I don’t want to treat the symptom. But I need to get her care, now. Should I cancel the appointment at Children’s and get her to a neurologist friendly to functional medicine? Do you think that even those neurologists know what you know? What antidepressants should my husband be avoiding?

    We have all, you see, been trying to fit the mold of Western medicine, to get treatment; but I am afraid we have been colluding in our own depletion. It is not me, as in it is not my choice, to flail, or to wail in complaint; my daughter is such a collected little soul, and we would all have dignity. I have a hunch that you may have a fairly unique dataset that could help us get some relief.

    Thank you.

    Audrey

    • Dolores Claesson August 13, 2012 at 12:41 pm # Reply

      Audrey, I would get the whole family tested for tick borne pathogens, ie Borrelia, Babesia, Ehrlichia, Bartonella, Anaplasma to name a few. Compare all of the above mentioned symptoms to lyme disease and see what shows up in a search.

    • Anne Chaka February 13, 2013 at 8:58 pm # Reply

      Dear Audrey,

      I just read your post, as I just found out last week I have 677/1298. One thing in your post caught my attention – the nystagmus and dizziness. This is something I suffered from for years (with associated brain fog, poor cognitive function, vision that had trouble tracking, trouble handling visual and sound stimulation, and fatigue), and it turns out it was due to another defect that they are beginning to think is genetic.

      Between 1 and 3% of the population have a hole in the bone over their inner ear that allows sounds and pressure changes to cause dizziness. Nystagmus is one of the key symptoms. The name of the condition is Superior Semicircular Canal Dehiscence Syndrome. The dizziness can come on gradually when a person is young or old, or can begin suddenly from an airplane flight, snorkelling, scuba, childbirth, car accident, fall, or bonk on the head. One you have it, it gradually gets worse. It will not get better on it’s own, but it can be cured with surgery.

      SCDS was discovered only about 12 years ago independently at Johns Hopkins Univeristy and Tulane Medical School. Only about 1000 people have been diagnosed so far, even though there is a large amount of unexplained dizziness in the world. Doctors know less about this than MTHFR. The best source of information is scdssupport.org. You can get a lot of help there, or just read what others have gone through. (My story is there.) Wikipedia has a pretty good description, too. There are several places that may be able to diagnose you, but if/when you get to the point of wanting surgery (if you have it) there’s only one surgeon I’d have do the surgery, because he preserves the function of the ear. That’s Dr. Gerard Gianoli a the Ear and Balance Institute in Covington, LA. He’s the doctor at Tulane who discovered the syndrome. Dr. G is also an excellent diagnositician. A team at Johns Hopkins and 5 other doctors I went to couldn’t diagnose me. I saw Dr. G, had both ears repaired, and now I’m symptom free! Free at least for dizziness, nystagmus, brain fog, and severe fatigue. Now I just need to figure out the MTHFR-related stuff.

      Happy to answer any questions for you, or just be a good listener! I know from my SCDS experience that forums like this one for MTHFR are invaluable. (Thanks, Dr. Ben!!!) We gotta help each other.

      My heart goes out to you.
      Anne

  3. Monique August 8, 2012 at 1:30 am # Reply

    Hi Dr Ben,

    Thank you so much for putting this up. I’m about a third of the way through printing it, but my poor little printer just had a fit so I’ll let it have a little rest.

    My doctor has had to go interstate for a little while, although he is still supporting me by phone. Upon his return he will be greeted with some homework :)

    Most of the supplements I ordered from you arrived yesterday, and I also was notified yesterday that the other product had been shipped so I am looking forward to taking the next step in my treatment. I had another methylcobalamin shot last week but it has been hard to work out if it has made a difference this time or not because I’ve also been put on other meds to help me get through what’s happening in my family and what’s to come, so I have this strange false energy going on and can’t distinguish what is real energy from the methylcobalamin and what is false energy from the other meds. We were expecting that though, and decided to keep going with what we’re doing anyway as even if I can’t tell that it’s making a difference, we know that somewhere in there it will be.

    Well it looks like my poor little printer has died completely, so it looks like the time has come to set up the laser printer on the network.

    Again, thank you so much for posting this, and for taking such good care of me when I contacted you on Facebook last week. I am looking forward to buying your book one day.

    Monique

  4. Mary Braud October 3, 2012 at 7:43 pm # Reply

    Thank you so much for posting this lecture. It is incredible.
    I have a question about your instructions for starting the protocol. When you talked about adding B6, B2 and TMG, you said you might do this on it’s own. Just to clarify, do you mean holding the SL methyl B12 and/or the methylfolate only during the transition of adding in the new ones to see how they are tolerated?

    Also, do you have suggestions for what diagnosis could be used when ordering labs to help get insurance to pay.

  5. Cheri January 16, 2013 at 5:56 pm # Reply

    Slide 18, is the column header correct on column 4 or is that a typo?

    • Dr Ben January 16, 2013 at 9:21 pm # Reply

      Cheri –

      That is a typo. Very odd. My slide presentation has a mutation :)

      • Cheri January 16, 2013 at 9:55 pm # Reply

        Very excited about tonight. I will be listening intently! :D

  6. Bonita Poulin April 3, 2013 at 10:11 pm # Reply

    I just downloaded the powerpoint and have a question about this quote. “Multivitamin with minerals and complete B’s (if patient can handle it)” I was wondering what you meant. I am allergic to B1 and B2 and have a 1298A-C varient. Is allergies to B vitamins what you were referring to? Is this common with this varient?

  7. Janet April 5, 2014 at 9:19 pm # Reply

    When is testing covered by Medicare?

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