Dr Ben Lynch

My story is long and can get pretty involved so I am going to skip many details and get straight to significant life events. I feel once you understand who I am as an individual based on my experiences, you and I will resonate on a deeper level. After all, DrBenLynch.com is not about me – it is about how I can help you.

Life experiences change a person. Or do life experiences create a person?

Bottom line: I am not your typical guy nor am I your typical doctor.

  • 1974: Born in Portland, Oregon
  • 1984: Turned 10
  • 1986: Moved to Central Oregon. Lived on a 100 acre horse ranch in Prineville, Oregon. Prineville has two famous claims:

1) highest teenage pregnancy state in the State of Oregon (not sure if we still hold that stat) and

2) home of Les Schwab Tires (really).

All kidding aside, ranch life taught me a ton: hard work, self-motivation, appreciation of nature and the cycle of life.

  • 1992: Graduated Valedictorian from Sunriver Preparatory School in Sunriver, Oregon
  • 1994: Finally reached my final height of 6′ 5″
  • 1992 – 1995: Rowed for the University of Washington Huskies Crew Team. Overcame a serious 2 year knee injury after discovering the root cause on my own.
  • 1995 – 1996: Had enough of ‘structured life’ in lecture halls and training rooms.

The travel bug hit – and hit hard.

Took a 1 year leave from the University of Washington to backpack throughout the South Pacific and Southeast Asia.

I left 213 pounds, fit, short-haired and with hard-earned money in my pocket.

It was while absolutely ill in India that I first discovered Ayurvedic medicine. This eventually led me to Bastyr University and where I am today.

Highlights of the one year backpacking trip are numerous but the most significant are:

  1. working in the Prem Dan in Calcutta and meeting Mother Theresa;
  2. yacht race from Darwin, Australia to Ambon, Indonesia. Got caught in a White Squall during night watch and experienced a 70′ yacht touch its mast head to the ocean’s waves in the blink of an eye;
  3. spending my last $10 to buy a tie so I could attend a ‘tie-only’ event. This event was the celebration of the rodeo and all the big ‘cattle station managers’ were there. If I wanted to land a job, it was here. Completely by chance, out of 100′s of places to sit, I happened to sit myself down next to the wife of the Brunette Downs manager. Brunette Downs is one of the largest cattle stations in Australia. I got the job.
  4. working as a Jackaroo (cowboy) for one month on a 1.5 million acre cattle station, Austral Downs, in Outback Australia. I was nicknamed ‘America’. The romantic hard lifestyle could not be beat: riding horses all day and working with cattle in the heart of Australia’s Outback desert with 7 other excellent people;
  5. lived with an Fijian family on a remote island, Somo Somo, and learned that no matter how poor and remote a place may be, happiness is possible;
  6. hiking in Tasmania for one month. Ran out of food during a 14 day hike in the wilderness;
  7. kayaking the Fjords of New Zealand. Got caught up in a sudden severe storm during a crossing;
  8. experiencing the enormity of the Himalayas while traveling north of Manali;
  9. returning to America with $0.80 cents from 3 different currencies in my pocket weighing 160 pounds, long-haired, ill and continuing to treat my scabies while on the airplane.
  • 1997: Graduated from University of Washington with a BS in Cell and Molecular Biology. Switched focuses four times: International Business, Pre-Veterinary Medicine, Pre-Med, Landscape Architecture (I enjoy diversity).
  • 1997: Summited Mt Rainier and Mt Baker, parachuted from an airplane
  • 1997 – 2005: Founded and operated a high-end residential landscape construction firm based in Seattle, Washington. Became ‘bored’ as I ‘figured it out.’ Needed a challenge and to return to my passion of medicine. I left a high six figure income to attend medical school.
  • 1997: Traveled throughout Western Europe for 2.5 months during the winter solo: Significant experiences: Krakov, Auschwitz-Birkenau
  • 1998: Traveled throughout Eastern Europe for 2.5 months during the winter. Highlights: Russia, Ukraine, Romania. Met my future wife in a tiny part of the world, Narva, Estonia.
  • 2000: Russia visit for 2 months in the middle of winter. Experienced ‘Dacha’ life and the freezing country winters.
  • 2001: Married Nadezda Mikhaylova
  • 2002: Began Bastyr University. Birth of our first son, Tasman, right smack in the middle of first quarter med school finals week. Complicated delivery. Finally understood the meaning of life: Being a father.
  • 2005: Mathew, our second son, born.
  • 2005: Began HealthE Goods from an empty bedroom of our home. Idea behind HealthE Goods was to offer a ‘virtual dispensary’ for my future patients. I later figured, “Why benefit only a few?” So I expanded the offerings, began answering health questions, blogged and shipped health products globally.
  • 2006: Russia visit #3. Finding out that I am in the right place on the planet while living in a totally remote part of the world in an extremely rustic 100 year old cabin on 2 acres on a river growing and harvesting our own food. Three families living together under one roof. Life as it should be. I would have done well living 150 years ago as I enjoy the rustic, down to earth lifestyle.
  • 2007: Graduate from Bastyr University with my doctorate in Naturopathic Medicine.
  • 2007: Russia visit #4 for nearly 3 months during the summer. Fished, worked the land, played with my sons and enjoyed living a very simple life.
  • 2008: Birth of our third son, Theodor.
  • 2009: Russia visit #5. A powerful visit. My wife’s grandmother passes at 92 years old. Learned the Russian remote country way of preparing for the memorial service, burial and all traditions surrounding the loss of a loved one. A very human and respectful way to say goodbye to our loved ones. Everything was handled by the family – everything – beautifully.
  • 2010: HealthE Goods is one of the Inc 500 Fastest Growing Companies in America
  • 2010: Began Seeking Health line of Dr Ben’s products
  • 2011: Understood the massive importance of people needing expert health information. The failure of America’s health care system is failing millions of people on a daily basis. Led me to the creation of Dr Ben Lynch and all the sister partner sites and programs which are constantly in development.
Learn more about how you can RSVP Dr Lynch for your next seminar, conference, webinar, radio show or TV program.

120 Responses to “Dr Ben Lynch”

  1. Bridget R. Briggs, M.D September 21, 2011 at 6:43 am # Reply

    Hello, Dr. Ben….like your website……I am a family practice doctor in Southern California….trained in functional medicine through Scripps Institute for Integrative Medicine and certified via Institute for Integrative Holistic Medicine….anyway…I run MTHFR analysis on more than half of my patients….and I treat all single and double polymorphisms with methylators…..you cannot believe the lives that change miraculously with simple supplementation! I will be speaking in Seattle Washington with Dr. Jeffrey Bland Oct 15 on this very subject as well as detoxification.

    Bridget

    • Dr Ben September 21, 2011 at 7:12 am # Reply

      Bridget –

      Fantastic! ;)

      Could you please post another comment here:
      http://mthfr.net/calling-mthfr-doctors-where-are-you/2011/09/19/

      I’d like to get your clinic up on MTHFR.net. People are looking for you…

      Please tell your colleagues to come and post their clinic name and information as well if they work with MTHFR.

      I’ll come to your talk. What is the website link for the conference? We can get together before or after and discuss further.

      I’m very excited about the amazing outcomes with people who have MTHFR and are properly treated. The issue is – they cannot find doctors who know anything and they are not properly treated even if they find a doctor who says they know about MTHFR.

      Love your thoughts on this post I wrote today:
      http://mthfr.net/mthfr-mutations-are-more-than-high-homocysteine/2011/09/20/

      Thanks for commenting!

      Remember – get your colleagues who work with MTHFR to post a comment on the Calling MTHFR Doctors post. I’ll be setting up a referral page – free for docs – as a service to our readers.

      Best
      Ben

      • Judy Batty October 28, 2011 at 2:02 am # Reply

        Just starting reading your website and saw this page- What are methylators? I have been told I have MTHFR and recently have been having chest pains, very painful leg cramps in middle of the night( inside both legs and on outer left leg. Tonight I have pain on inner right thigh and am concerned about possible blood clot. Please advise- Thanks!

        • Dr Ben October 28, 2011 at 3:07 am # Reply

          Hi Judy –

          I recommend you call the fire department and have them come out and assess your leg. Many times paramedics can determine if a clot is present just from palpating (feeling).

          If you are homozygous C677T or compound heterozygous (one copy of A1298C and one copy of C677T), the risk of clotting is significant.

          Please call your doctor.

          Best,
          Dr Ben

  2. Kim Hammond December 14, 2011 at 11:35 pm # Reply

    Dear Dr. Ben,

    I was looking for information on MTHFR and found your website. I received a call from my neurologist today who was doing a blood workup on me due to a resolved blood clot in my colon ,superficial blood clots in my legs and arm and easily bruising, he informed me that my lab was abnormal and had MTHFR. I haven’t been able to find much info. about it but at this point I am desperately looking for answers. I should give you a little background. This all started in April 2011. It began with pain in my upper back and arms. They first thought I had a pulled muscle. By June I was hurting all over, sleeping 20 out of 24 hrs and extremely weak. I then went to a rheumatologist, I wasdiagnosed with fibromyalgia. Started on neurontin which totally messed me up. Was then put on cymbalta,lodine and norflex for the pain. It did ease the pain but only at rest. I also began losing weight, and couldn’t eat due to stomach pain and vomiting. By August it was so bad I had to take off work on disability. They decided to do EGD and colonoscopy, finding a small ischemic area in my colon caused from a resolved blood clot. They also diagnosed me with spastic colon/ibs. I have diarrhea for a couple of weeks then go days to 2 weeks without anything then diarrhea starts all over. I have frequent migraines and have large bruises on my legs. Other symptoms include breast discharge,nausea chronic fatigue, hx of depression and anxiety. I have been to a colorectal specialist, a gastroenterologist, hemotologist, neurologist and to the ER twice due to severe abd. pain. The main answers I get is that my history is complicated. Its like noone wants to find a cure for me. They just continue to treat symptoms with different meds. Currently I am taking Cybalta 90mg, Lodine 500mg bid, Norflex 100mg bid, ASA 81mg, Librax bid, lomotil daily, Trazadone 100mg q hs, phenergan 12.5 q 4 hrs prn, Treximet daily as needed for migraines, and as of today added Vit b12,b6 and folic acid. I have 4 kids and cont to be off work can barely function day to day. I would really like to be able to live my life again. PLEASE if there is any way you could help I would be so grateful.

    • Dr Ben December 15, 2011 at 1:34 am # Reply

      Kim –

      Sorry to hear you are not receiving appropriate care – instead – drive through medicine is what you’re getting.

      Which MTHFR you have? I assume 1 copy of each or?

      There is hope – I’ve seen some very complicated and crazy symptoms over the years. The key is to find the underlying causes, address those and work out from there.

      Due to your complexity, a consult is highly recommended. Please call 800-689-8221 to schedule. I am not so available this month but will be more available next month.

      • PShaw March 18, 2012 at 10:14 pm # Reply

        Check for Lyme & Co infections, Use IGENIX labs.

  3. Ann January 24, 2012 at 3:01 am # Reply

    My 9 year old Autistic son has just tested positive for the A1298C Mutation. I saw the hematology clinic at childrens hospital, but was told not to worry. At the time of testing they also had performed several tests for prominent venous distention in upper thoax and neck. In one test it showed he had cervical lymphadenopathy, (not sure what that is) There was no evidence of thrombus or obstruction. They did find however that his liver and spleen were enlarged and his gull bladder was distended. The blood tests they took showed his AST at 83 and his ALT at 101. Both extremely high, His WBC, RBC, HGB, HCT, MCV, and MPV were also high. His MCHC was low. Can you tell me if any of these things have to do with the Mutation. Even though we are seeing different clinics at Childrens hospital, I am really not getting any answers. Not once did they ever tell me to test the other children. My sister had a leg amputation at age 29 due to blood clots, and all but 1 foot of bowel removed due to blood clots at age 31. Would this mutation run in the family? Any light yu can shed would really help.
    Thanks

    • Dr Ben January 24, 2012 at 5:51 am # Reply

      Ann –

      Sorry to hear about your son.

      A1298C MTHFR mutation may have some effect here – but not entirely. It also depends if he has two copies of the gene mutation or one.

      MTHFR does run in the family.

      It sounds like he is fighting some form of infection which may be stemming from his gallbladder. Hard to say though.

      Keep me posted.

  4. elena January 24, 2012 at 9:49 pm # Reply

    Thank you for all your work!
    I read that you like sauna and I do too. I was wondering what is your opinion on having a sauna/ steam bath during pregnancy (first month-when you don’t know if you conceived).
    I read one scientific article on this, generally cited in this case, but it did not convince me. The theory is that raising the women’s body temperature (fever; and fever is equated to hot bath; hot tub; sauna) can cause mutations and spina bifida.
    It was done as a “retrospective” study of women in California. It found that “hot tubs” are connected with birth defects and sauna ranked second in the list. But I thought that it might also be because of the high chemicals in “hot tubs”.
    Here are my questions:
    1. Do you think that heat can be bad and particularly bad for mthfr mutant pregnant women?
    2.Since your wife is Russian, do you know of any study done in Russia/Finland or in the Magreb (steam bath) on this subject? What do women do there traditionally?
    This kind of study would make more sense to me if done in those countries, since it could offer a larger amount of data.
    Thank you.

    • Dr Ben January 24, 2012 at 11:32 pm # Reply

      Elena –

      I love sauna – immensely.

      I do not recommend having sauna while pregnant as hyperthermia causes toxins and chemicals to be mobilized from storage sites – especially fat and tissues. It is not really that temperature is bad – it is the fact that sauna increases mobilization of undesired compounds into the bloodstream which get into the developing baby.

      1) Yes. Sauna and hot tubs are potentially bad for pregnant women – MTHFR or not.
      2) I have not seen a study here on this subject. I do know that it is not recommended over there though to sauna while pregnant – at least in Russia. Finland I am not sure. I hope so.

      If women do sauna or steam, they do so for a very short time and lower temperatures.

      I personally do not recommend hyperthermia while pregnant for more than 5 to 10 minutes.

  5. Brianne Tull January 28, 2012 at 12:20 am # Reply

    Ok, I am really frustrated. This is going to be quite long, I will shorten it as much as possible. Let’s start with my uncle and work down. He has some autoimmune eye disease that is degenerating his sight and soon he will not be able to see. My aunt has some characteristics of lupus, but they aren’t calling it systemic lupus, also has Addison’s and RA, as well as an unidentified antibody in her CSF and other symptoms they can’t relate to any of these things which are a lot like my symptoms. My mother, has symptoms of MS, but has been checked for it and her myelin sheath is intact and no sign of scar tissue. She has hair loss, depression, anxiety, heart racing, extreme cold sensitivity, night sweats, tingling in hands and legs, shortness of breath, severe fatigue, numbness, headaches, memory loss, aches and pains all the time. My brother, has Insulin Growth Factor Type 1 Diabetes, has severe nausea and a constant migrane and cannot eat very well. I’m sure you know, it’s a very rare form of that particular autoimmune disease. My sister, they thought she had Addisons, she doesn’t.. they can’t figure her out. Let’s talk about her first. She passes out and has “mini siezures” as the EMT’s call them. She is 90 lbs and 5 ft and they have to pump 2 to 3 bags of IV fluids in her every time she passes out. THey have done a glucose monitor on her hip that checks her sugar every 3 minutes (or seconds, can’t remember) and her sugar gets remarkably low (40s) at night and she is still coherent. She also has night sweats, general weakness, hair loss, anxiety, panic attacks, depression, difficulty sleeping, nausea, abdominal pain, mucous in stools, cloudy urine, vaginal discharge, shortness of breath, difficulty breathing at night, headaches, and cramping in legs at night.They have also flushed her kidneys to find nothing unusual and she has bicornate uteruses and poly cystic ovarian syndrome(they aren’t sure she really has it now with all the other symptoms). She also has chest pains, EXTREME fatigue (sleeping 20 hrs a day when she is allowed to and still feels tired), GI problems (diarrhea and constipation alternating basically). They don’t know what’s wrong with her, but they tested her IGF-1 and it was “normal”. Now to me, I have had a 1:160 speckled ANA titer when I was pregnant with my son, as well as low protein S. I also have both MTHFR gene mutations, C677T and A1298C but normal levels of homocysteine (never checked my urine, just plasma). These were all checked three years ago when I was pregnant with my son. My ANA now, is negative, my RA is normal, I do however have Thyroid peroxidase antibodies and thyroglobulin antibodies that are starting to attack my thyroid. I however, have a LAUNDRY list of symptoms I am having that they can’t explain. For instance, my hands and feet swell, hurt, and my hands turn a blueish color on the palms and red in the joints. I have LOTS of pain upon getting out of bed in the morning in my feet, they feel like they are going to break. I have mood swings and severe panic attacks, difficulty breathing, nausea, cramps in legs and my back feels like it’s breaking when I lie down (I have to ease down, and then come up and then let down and come back up over and over until I can finally get used to the pain and lie down), hair loss, occassional night sweats, heightened cold sensory, migranes and dizzy spells, memory loss, heart palpations and intermittent mini nose bleeds (which are more like mini clots in my nose). i also have pain during intercourse… enough to make me burst out and cry, but no endometriosis or anything abnormal was seen during my c-sections. I have severe fatigue and have to drink 2 energy drinks a day to even function, sometimes I have to take B12 as well to not fall asleep while I am driving to work. My EKG is normal too by the way. My mother has had 2 miscarriages in the 3rd trimester and my aunt has had 4. I have not had any and neither has my sister. Now, my daughter has a small cleft palate in the back of her mouth that barely nicked the hard palate, she also has a split uvula and a whole side of her labia was fused ( we used a cream to fix that) and she also is pre-asthmatic. My son, had an inguinal and umbilical hernia, he is what they are calling a “reactive hypoglycemic” for now until more testing is done on my brother, sister and I. WHAT IS GOING ON?? Can this be caused by the MTHFR mutations??? I am so at a loss right now. My sister goes to a rheumatologist in a few weeks and I go on the 20th of February. I am LOSING MY MIND!!! Please help with any information you have.

    thanks so much,
    Brianne

    • Tammy Studebaker July 18, 2012 at 1:33 pm # Reply

      Have you been tested for Celiac disease and or Lyme disease throughan LLMD? My son had both, Celiac is genetic, hopefully someone has been tested? remember the only 100% accurate test for Celiac is Endoscopy,

      • Mary Ann March 28, 2014 at 8:52 pm # Reply

        An Endoscopy is not 100% accurate. The reason behind this is if you’ve been off of gluten it can be negative.

    • Wendy Donaldson June 29, 2013 at 1:43 pm # Reply

      Lyme disease has over 100 symptoms…many of which you described. Some of the co-infections associated with Lyme have similar symptoms…including the sore feet you mention and Bartonella can cause anxiety attacks and wrecks the immune system, lowers body temperature making it harder to fight infection and slows the metabolism. These infections are hard to detect, hard to treat, and hard to find a doc that knows what they’re doing or even willing to treat. You have to do a lot of your own research and seek a Lyme literate doctor. I have Lyme, Mthfr and myasthenia gravis. Have probably had Lyme 20 years. After 20 yrs of my immune system attacking an infection it could not kill, it began attacking my body…resulting in myasthenia. Felt sick all the time, extremely tired, sleep disturbance, hair loss, leg pain and weakness, heart palpitations, acid reflux, throat problems,brain fog, etc. Can infect the brain, causing the convulsions you descibed. Have a dr. test you for Lyme via Western Blot test ONLY. ELISA test is very inaccurate and waste of time. Mthfr is just another complication in my health problems. Treating mthfr I am sure will certainly help some of your symptoms but will not cure if you don’t find out the cause of all your ailments. Google Lyme disease and see if it fits for you, and get tested for it! You have to take matters into your own hand and educate yourself as much as possible. There are excellent books out there to read too. Good luck to you! Wendy

    • Isavedachildfromlyme February 15, 2014 at 2:53 am # Reply

      My heart is breaking for you and your family. We have a Lyme plus co-infections family here in Florida and we do truly understand. You are not alone, and this is your today – not your tomorrow. Please stay strong – crying and hysterical laughter as needed! Please also strongly consider a very simple blood test for HLA typing. From your post I suspect you and some members of your family may also share a dropped (gene? alleles?) for molds and fungals.

      In addition to research with Dr. Lynch et al. regarding MTHFR, reading through information of Dr. Ritchie Shoemaker (“Mold Warriors” etc.) as well as Sponaugle Institute in Tampa, Fl. May help you identify patterns you yourself are most familiar with. I am personally HLA DRBQ (molds fungals mycotoxins / gene or allelles) deficient as well as compound heterozygous MTHFR and when I read your post I thought someone had just posted from MY med journal … I am just now at the beginning of this research (HLA DRBQ as well as compound MTHFR) and apologize for not being able to offer more help. The path our family took to realizing that everything that we had been taught about western medicine our whole lives was not going to help us with the insidious ills that had consumed our lives so suddenly was a long, hard uphill lesson driven in part by “but I have insurance” and trying to “save our savings”. Who am I kidding, what savings:( For the rest of our lives my husband and I both will tell everyone consistently we wasted years and almost died because of our inability to make the leap into the less familiar. Please, please leave no stone unturned in your search for root cause, vitality and hope. The test that sounds unusual (often even expensive) like Igenex, Fry labs, blood smears, amino acid hair testing, brain scan, leptin, neurotransmitter spit samples, C4a, cd57 etc. as well as the licensed practitioner who recommends them, might be your bridge to your best ever “aha!” moments and quality of life and longevity. It’s hard. It is a journey on every level. Your friends, family, regular practitioners and neighbors all possibly label you as nuts. Use that energy, that frustration, to dig deeper and tap your desire to survive and thrive! You know who they are going to come to in a few years when they hit their wn brick wall? Yeah, you – because you survived to pay it forward and soothe your karma:) My ten year old wrote a paper for school about his Zyto energy feedback sessions (we got lucky, everybody loved it) – if you had told me four years ago that would happen I would have thanked you for the great laugh. Now instead we’re scrambling to catch up on the learning curve regarding all the missing links and lack of synergy that constitutes western med. Advocate for yourself and don’t give up if you know something is wrong! Universal blessings to you.

  6. Fred Davis February 9, 2012 at 8:10 pm # Reply

    Hello Doctor Ben,

    While I have never been tested I have arrived at a pragmatic determinations of my lifelong inability to utilize folic acid, folinic acid and vegetable food source folate. All of these block the utilization of Metafolin in my body and those of many others. The website listed above is a hotbed of MTHR testing and discussion of paradoxical folate deficiencies and induced folate deficiencies via glutathione, NAC, whey and other items. I an others are in the process of solving the problems of these induced deficiencies and restoration to health. Also, another source of testing and consulting will be much appreciated in that web community. There are thousands there with intense and very personal interest in these polymorhisms and their affect on health. In addition, we are all always looking for quality products serving our needs at affordable prices. Feel free to drop by and introduce yourself to a lot of very interested people.

    • Dr Ben February 9, 2012 at 8:51 pm # Reply

      Hi Fred –

      I am very familiar with Phoenix Rising and am impressed with Rich and all those interacting there. I believe I’ve read some of your posts as well.

      Thank you for the invitation to stop by and interact. I will do that.

      Gaining additional perspectives in the web of health is always needed – and appreciated.

      I am a firm believer of ‘let food by thy medicine’, elimination of gluten and dairy, digestive health and specific detoxification methods such as sauna, colonics, coffee enemas. Understanding how our environmental affects our health is also critical.

      Supplementation can be a double-edged sword and often is. For example, I am working with a gentleman who has MTHFR and has not been doing well at all – in a wheelchair, unable to walk unassisted. This is until I stopped all of his supplementation and put him on a strict fruit/vegetable/chia seed diet. He has improved dramatically in a matter of days. Journey still continues…

      While my company, Seeking Health, provides supplements, we also provide lifestyle products such as enema equipment and neti pots.

      I have no problem issuing all at Phoenix Rising a long term discount program for Seeking Health items. I know obtaining and maintaining health can be frustrating and expensive at times – and I want to help those continue on their journey towards it. I will talk with my team about this and we’ll go from there.

      • Fred Davis February 9, 2012 at 10:21 pm # Reply

        http://forums.phoenixrising.me/forumdisplay.php?49-Detox-Methylation-B12-Glutathione-Chelation

        I didn’t realize that the link wouldn’t show. We are solving a lot of the practical problems like low potassium caused by high rate cell formation, commonly called “detox” and induced folate deficiencies, commonly called detox”. Some are much more up on the polymorphisms than I am though I clearly have a number of them. Thankyou for your generosity. A lot of us spend hundreds of dollars per month for these kinds of items. The “web of health” is complicated and an active interchange can clarify a lot of things. We all have a common goal despite having a wide variety of theories. I am glad I ran into your site. I’ve posted some links and there is already discussion springing up. You will find that there are people who will agree or disagree about almost everything. What we are all desireous of is results, and that comes by combining information and trying things.

  7. lynn miller March 9, 2012 at 8:06 pm # Reply

    Dr.ben. I have factor five and mthfr. I w as told its very uncommon forone person to have both disorders. Could u please get back to me on this. Thank you. L miller

    • Dr Ben March 9, 2012 at 8:23 pm # Reply

      Lynn –

      I see it all the time together – it is not uncommon at all.

      • Anitha Påhlman March 13, 2012 at 6:37 pm # Reply

        Dear Dr. Ben

        You have reacht out to Sweden :-)
        We ate a large groupe on internet who also suffer from Thyreodea illness of different kinds, finding it hard to get a god responce from doctors.
        I myself has the MTHFR from both my parents and almost got demens before I luckely found a doctor who tested this.

        I do not knov what kind of MTHFR I have.. I sucsessfully get injektions 2 times a week vit Mekobalamin and 4*5 mg Folacin, but it unfourtunatly took about 4 years before I found the doctror and I´m suffering from pail in my feet. Still gettin tired and I never knov if it´s my Thyreodea illness (treated with Radioactive Jod 1994) or lack of something else. I medicate for Thyreodea with T4 Levaxine and also ´20 mg T3 Liothyronin sinca about 6 mounths. Not getting any help from that but not getting worse either.

        Great to find you here. Please let us know if you are coming to Sweeden. I live in Gothenburg, a lovely city in the summer :-)

        Best regards
        Anitha Påhlman

        • Dr Ben March 13, 2012 at 9:20 pm # Reply

          Anitha –

          Great to hear ;)

          There is a researcher in Sweden who I respect immensely – she studies thyroid disorders also – I cannot recall her name at the moment…

          There is a big link between mercury amalgams and thyroid disorders – read this study

          There is a connection between MTHFR and thyroid issues as well –

          I come often to Russia (every 2 yrs) and fly through Copenhagen. I’d like to speak on MTHFR defects to a panel of doctors or a large group of interested people. If you want to help organize those who’d be interested, I can be there ;)

  8. Cathi March 27, 2012 at 5:34 pm # Reply

    Glad I found this site. Looking for connection with hyponatremia, lyme, psychiatric issues, OCD, depersonalization, bartonella. I’d love to talk to Dr. Ben. Looking forward to answers.

  9. Teresa C April 18, 2012 at 10:54 am # Reply

    Hi Dr. Ben, I was just diagnosed positive for two copies of the A1298C on February 1,2012, and I have had a miscarriage of twins in 2000, almost miscarried my oldest living child, D&C on a dead singleton on 2006, lost two of three in 2010. I had constant passing out episodes ever since I was a child. They (military and civilian doctors) told me that it was in my head. They gave me meds that did NOT help. They gave the meds, because it made them feel like they were doing something. Now, I am feeling like life is short. The doctors are not 100% sure if I had heart attack on 1-27-2012. My Cardiologist is not in the least concerned about my MTHFR results. I had many irregular heart beats (EKGs), echos done, 24 hour holter showed some PACS and palpitations, a nuclear stress test showed two areas in the lower left chamber that have significant 64% blood and oxygen depletion. No biggie, said my doctor in round about, but not spoken way. I am still having increased sharp squeezing chest pains since the nuclear stress test on March 15, 2012. I am very dizzy and shaky if I stand longer than 5-10 min. I collapsed in my Chiropractor’s office this past Thursday. He told his staff it was emotional, then told me privately that my adrenals are in the state of shock. Adrenal shock? What? Then he told me that I have to lose a #*$% load of weight. He knows that my thyroid is subpar and my adrenals are shot and he makes overweight rude comments towards me. If it were not for him helping me when my spine went out in 2007, I would not see him. On 4-19-2012, I am scheduled for a CT-Cardiac angiograph to see more details. What is going on in my body? Why is my body attacking me? I had my two children tested for the MTHFR, but have no results yet. Would you please help me? Dr. Laura Power a biochemist/nutritionist ordered the tests that the doctors don’t want to. Please help me. What other tests should be run? Normal BP= 90/60, Total Chol= 161, trigly= 144, CRP= HIGH, lipoprotein=normal. In 1986, I was dignosed with fibromylia, CFS,.. TC

  10. Joey Marie May 16, 2012 at 1:42 am # Reply

    Hello Dr. Ben, I had a stillborn son this past January. I had a bunch of blood tests done and they found out I have mthfr and factor v leiden. I am currently on heparin shots and 81 mg of asprin. I am also taking a Dr. prescribed prenatal that has 1mg of folic acid in it, and an extra 800mcg of folic acid along with that. Do you think that is enough folic acid?

    • Joey Marie May 16, 2012 at 1:43 am # Reply

      Okay I am sorry. I left out the part that I am expecting again! ^

    • Dr Ben May 16, 2012 at 7:03 am # Reply

      Joey –

      I do not think that is enough –

      Please read this article on Prenatal Supplementation with MTHFR.

      Taking extra folic acid is not what is needed here.

      One needs additional methylfolate and folinic acid – along with other nutrients.

  11. evy June 1, 2012 at 8:43 pm # Reply

    Our 19 year old daughter was diagnosed with MTHFR (both genes) yesterday. I feel like this might FINALLY bring some answers to years and years of increasingly problematic health problems-and I am optimistic (though guardedly!)!

    We have tried one thing after another (I am an RN but have bent much to the alternative treatment/medicine way of things as the years go by). I was almost certain my daughter MUST have fibromyalgia AND chronic fatigue AND (she has nearly every single symptom common to BOTH of those syndromes and more).

    We have opted out of medical doctors, and have trie many alternative therapies and more,allergy testing, etc. …. most recently ending with the GAPS/SCD way of eating, in hopes that this might be the ticket. How frustrating when the GAPS actually made her feel worse!!!! Nothing has brought any improvement. Period.

    After trying so many things on our own, we finally decided maybe it would be worth one more try with the naturapath. Our wonderful Naturapath/Midwife here in Moses Lake WA, Dr. Trautman, ordered a lot of blood work, urine test, etc. and while all the original blood work came back fine (and one was left wondering how that could all be FINE when our daughter presents with so many awful symptoms!!), the urine test prompted the Dr. to say….you know, there’s some newer testing genetic testing on something that might be worth a look.

    So, here we are today, with hope that we might actually be going in a direction that might bring some healing in our daughter!

    Thanks for all the information on this site!I have read much, but have much more to read, to get to all you have here! I’ve been on a mad whirlwind to learn about MTHFR, which was completely unheard of by me. My poor brain is trying to wrap itself around all the information, but today was the 2nd day for my daughter to take the methylfolate and I am praying it will be the answer we need!

    :)

    evy

    • Fred Davis June 3, 2012 at 7:26 pm # Reply

      Hi Evy,

      My life was devasated by FMS/CFS for decades. I was the sickest person one might ever see with all the tests “normal, in range”. Of course all all these tests are normed on a population with the deficiencies that casue fms/cfs as endemic and widespead so the norming itself, and henace the onterpretation is very biased. For instance, MCV is influenced by b12, folat and b6. However a lot of people can take folic acid, b6 and cyanocbl or hydroxycbl and if their body dies not conform to 100% of the “shoulds” of how it should convert these inactive vitamins to the active natural forms, then a lot of the blood work will show that. Unfortunately instead of using elevated MCV etc as a clue to a problem, becasue so many now have it, the labs have changed from > 94 to > 96 and not finally to 101 as the signal for deficiency. I called one of the biggest labs in the country after my doc said, hey, you are doing much better, you mcv is no longer alerted. We looked at the numbers and my MCV hadn’t moved, the “high” mark had moved from > 96 to > 100 and at 99.8 I was suddenly “fixed”. They told me, “If we alert more than half the people the doctors ignore the results”. So thr high mark is all startistics, not nmeaningful. > 94 is meaningful warning mark. > 101 says “you are in trouble already”. Curing recent onset CFS/FMS is nearly a slamdunk. Repairing the neurological damage from longeterm CFS/FMS before it characterizes as some neurological disease from the damage is more difficult and trying. Neurological healing can be tyerribly painful in multiple ways (experience). I’m healed of 100% of the CFS/FMS of decades standing, but the neurological damage has lots that has never healed but has improved considerably. Good luck. There is a sucessful treatment BUT it won’t be gotten to through the tests. Instead the symptoms that result from different problems have to be recognized. For instance, working with the folate utilization problems from the polymorphisms being talked about here I have found at least 4 types of paradoxical folate deficiency in which folic acid, folinic acid and vegetable food folate can all be both inactove and in the most extreme cases, actually block the methylfolate from being active. If the practical aspects are not handled the tests mislead. Further the therapies generally suggested by the tests don’t work. People doing intelligently directed trials give the answers for that purpose since there appear to be a lot of other unspecified polymorphisms affecting the process. Good luck.

      • evy June 23, 2012 at 1:41 am # Reply

        thanks, Fred, for your reply. WOW, these health things are challenging, aren’t they! We’ll keep researching and learning what we can about this very complicated stuff!

        :)

        evy

  12. Bonnie June 3, 2012 at 11:27 pm # Reply

    Have a 7 yrs. old son with PDD-NOS, ADHD & MTHFR C677T. He was diagnosed when he was 4 yrs. old. He has difficulty with eye contact, social skills and can easily get frustrated with tantrums at times, (although they’ve become far and few between). We have a DAN doctor, but he doesn’t seem too aggressive. We added a holistic nurse practioner the beginnig of this year and already have seen improvements on some of the changes she has made so far.Currently he is taking:

    Pro Omega 1280 mg(high concentrated natural triglyceride for of pharmaceutical grade molecularly distelled omega 3 fish oil)
    Cod Liver Oil (Norwegian) VitA 1350IU, Vit D 180IU
    Ther-biotic Complete (25+ billion CFU’s multi-speciesprobiotic)
    Vital-zymes (chews 2 with each meal)
    Phenol assist, (2- 3 times a day)
    Sonic cholesterol (started about 1 wk ago)
    Multiple vitamin
    Iron 9 mg (choline citrate)
    Zinc 20 mg (zinc alpha ketoglutarate)
    Leucovorin calcium 5 mg
    B6 100 mg
    L-Methylfolate 1000 mcg
    Cal-Mag (Vit C 150 mg Vit D-3 75 IU, Calcium citrate 750 mg) mag 375 mg Boron 3 mg
    D3 takes 3 dropps ( 1 tsp =1000 IU)
    Mag sulfate cream 1 gram
    methylcobalamin shots daily 25 mg/ml

    Currently on Feingold diet and dairy free since about 5 yrs ol. Had him on gluten free diet for 6 months and didn’t see any difference.

    We are going to add Co-Q 10 soon and L-Carnatine 100 mg.

    What test would you suggest we have him get and any supplements we should add or delete? Any thoughts or ideas?
    We are spending a fortune on trying toget him out of this!!
    Thank you so much for any information!!
    (p.s. I passed your website on to our nurse practioner and she is very excited and is sharing your website as well!!)

    Bonnie

  13. Melissa June 10, 2012 at 6:27 am # Reply

    Hello! I followed a link from Facebook to your site and for the life of me can’t find what MTHFR stands for. Could you please spell it out on your homepage and/or post its definition/description in the FAQs? Thanks so much! —Melissa

  14. Yolanda June 22, 2012 at 3:46 am # Reply

    Hi Dr. Ben,
    I have 4 girls, 3 have been tested for MTHFR and results vary. The oldest has homozygous c677T (2 copies), middle one has heterozygous 1298C, and the third has heterozygous c677T. The oldest is on b12 injections, and the other 2 use topical b12 cream that has p5p and vit d included. We were using methylfolate, and are now considering b6. The youngest has severe eczema on her feet, and the b6 (very small doses) we have tried this week, seem to have affected that for the better.

    My question is, is there anything else we should be doing, or does this protocol sound correct? Our dr.s have not really addressed this issue.

    In addition, all have been diagnosed with IBD, EoE, and after years of supplements and special diets, they are only tolerating about 7 foods each. We are considering genetic testing to find causes.

    Any feedback would be appreciated!

    • Fred Davis June 22, 2012 at 3:41 pm # Reply

      Hi Yolanda,

      Methylfolate (Metafolin) is often required for many of us to have our skin heal and to tolerate more foods. Low folate can cause unceasing or intermittant IBS. I have paradoxical folate deficiency induced by folic acid and folinic acid which includes vegetable food source folate. The more folate containing veggies I eat the worse my folate deficiencies get. Between methylb12 of the two correct brands, adb12, and Metafolin, making sure that they don’t get low potassium symptoms ot get potassium when they do, often starting when the suddenly feel sick on the third day or so after starting any of these vitamins

    • Lynn_M June 22, 2012 at 6:27 pm # Reply

      Yolanda,
      What kind of B12 is used in the injections? Unfortunately cyanocobalamin is what’s used most commonly, and that form does you no good. Anyone with a MTHFR mutation needs methylcobalamin. Sublingual methylcobalamin of the two brands Fred Davis recommends is maybe the best way to get methylcobalamin, because methylcobalamin injections need to be compounded and are very susceptible to light damage.

      • Yolanda June 22, 2012 at 8:09 pm # Reply

        Hi Lynn,
        thanks for responding – our dr.s have us on hypoallergenic METHYLb12 injections. We have tried topical for her but the injections seem to help her stay more calm and less agitated. Our dr. mentioned that injections are more effective than sublingual for her because of her dysbiosis/leaky gut and Inflammatory Bowel Disease. Do you see this as being accurate? I would rather not use the injections!
        Yolanda

        • Fred Davis June 22, 2012 at 8:44 pm # Reply

          Hi Yolanda,

          As a sublingual held in the mouth against the tissue absorbs 15-25% in 45-120 minutes, anything having to do with the gut is totally irrelevant. Also methylfolate will likely make a huge difference. Also I have found that the two named brands of mb12 are far more relaiable than injections since those can vary by batch of crystal and how well it is mixed (too much light destroys i, a couple of minutes of room light is too much.) I take 30mg daily in injections as I need to for CVNS penetration. However I also take the two branded sublinguals every day for quality.

    • Doreen January 3, 2013 at 11:50 pm # Reply

      My son has Crohns and he is taking LDN or low dose naltrexone. It is not widely known or understood by most traditional doctors but many IBD and MS patients take it with great results. It is not an immune suppressor like most of the recommended drugs and has no harmful side effects…in fact a better functioning immune system is likely. Do some research online. I highly recommend it. Also it’s cheap. Look at the Penn State study on LDN for pediatric Crohns, and Stanford study on LDN for fibromyalgia.
      Also please check out camel milk for your girls. It is great for those with many food allergies or intolerances. Healingwithcamelmilk is a Facebook group with lots of support and info.
      Good luck healing your girls!

      • Dr Ben January 4, 2013 at 12:29 am # Reply

        Doreen –

        Thank you for your comment.

        I also recommend LDN for those who need immediate help – such as Crohns. Of course, I always want to work without meds but at times, they may be needed.

  15. Emma June 29, 2012 at 5:50 am # Reply

    Hi Dr Ben,

    thanks for all the replies and all your time spent trying to help people. I live in Spain. Due to miscarriages had tests and resulted ‘homozygous for mutation of MTHFR gene in position 677′. Not sure if this is 677TT or 677CT. Not sure if I have 1298, presuming not. Briefly symptoms:
    - major hypoglycemia untested but very obvious; I never eat sugar or junk food
    - constant hunger, always having to eat
    - muscular and joint fatigue and inflammation, jaw often clenched
    - Chronic Fatigue not diagnosed as ME
    - hipoproteinemia
    - low BP
    - diarrhea plus frequent urination
    - recurrent miscarriages 8
    Thinking of embarking on treatment alone, without a doctor. Live in fairly remote place. Would like an on-line doctor’s support but I can´t afford high consult fees. Can order all supplements on line I guess. Can I do this alone? anyone you can think of that could help me here in Spain at a reasonable cost?

    Its not all doom and gloom – I got good enough results from chakra and aura meditation I was able to start exercising after many years without.

    Thanks again in anticipation of a reply,
    best wishes from Emma

  16. Tanja July 24, 2012 at 4:44 pm # Reply

    Dear Dr Ben,
    I was looking for information on MTHFR and found your website. I just got results of test for mutations in Factor II Prothrombin and Factor V Leiden – both wilde-type and I’m heterozygote for MTHFR C677T. My gynecologist sent me to consult hematologist to see if I need any specific therapy because of that condition since I’m trying to be pregnant again. But I will have to wait for that appointment and answers for few months. That’s very frustrating for me, so I hope that you could give some advice. I should give you a little background. I’m 38 years old and in September 2011 I found out that I’m pregnant, that was my first time ever after trying for at least 3 years (doctors said that physiologically everything is ok,that I just need to “practice” more). In October 2011 I had missed abortion, I had curettage and 2 weeks later I got strong pain in my left ovary and massive bleeding from uterus, so I had to go to hospital where it was found that my left ovary and fallopian tube are filled with blood. I had a surgery and my left ovarian tube was removed. After that my gynecologist told me to do different tests, all of them were good and only MTHFR showed that heterozygote status. Is there anything I should do because of that? Do I have to have any medications, anticoagulant therapy, any additional test? Informations that I found differ, some doctors said that this condition is not relevant for my pregnancy cause I have one good copy of MTHFR gene.
    Thanks in advance
    Tanja

    • Dr Ben July 25, 2012 at 5:48 am # Reply

      Hi Tanja –

      It depends on which doctor you talk with – and how they practice.

      I am all about precaution and take the MTHFR mutation seriously.

      Your MTHFR mutation is mild but still exists. I do recommend you take a prenatal that has methylfolate and folinic acid – and not folic acid.

      I also encourage you to avoid taking supplements with folic acid and instead take ones with methylfolate and folinic acid – during pregnancy. After pregnancy, simply use the methylfolate form.

      Please read this article on prenatal supplementation and MTHFR.

      You may not need anticoagulant therapy while pregnant – but a baby aspirin may be useful – do talk with your OB or midwife.

  17. LuAnn K July 30, 2012 at 8:12 pm # Reply

    Hi Dr. Ben,

    I just found out last Friday July 20th that I have 2 copies of the MTHFR C677T mutation. I appeciate so much all of your studies, and finding on the MTHFR mutation. I appreciate how kind and prompt you are with helping others.

    My Dr. told me to start Deplin 7.5 and then left the country on vacation so I am trying to figure out on my own what is going on with my body as far as the methylation. I am deinitely feeling something different going on. I am feeling very overwhelmed the more I read about MTHFR.

    I have been very ill for such a long time. I have CFS,Fibro, coronary artery disease, chronic pancreatitis. I have terrible digestive problems.

    I was so excited that the finding of the gene mutation was my answer. Since starting the Deplin and sublingual cobalomin I am having horrific headaches and my legs feel weak.

    I have also had thyroid cancer and Hashimotos and am on synthroid. I thin I am beginning to feel hyper and somewhat shaky. My last thyroid panel was all on the normal range. I normally feel I have hypo symptoms requardless of my test results.

    Can you please help me since I do not have my Dr. to question. I am afraid to take the Niacin though I may need it. My husband bought time released so I don’t know if that will work. Do you think I sound like I am overmethylated or should I just hang in here?

    I can’t seem to think straight and my mind is racing. I’d like to know what you think and if what I am taking is allright. I have not started NAC or any other Glutamine enhancer.

    One major thing I did forget to tell you is that I had the heavy metal test at Genova Labs and I have 2 1/2 the normal amount of mercury along with several other metals. I am so afraid of that coming out too qucikly once the methylyzation process is started.

    I am taking my Life Extension MultiVitamin, Co Q 10 200 a day. 5,000 Vit D, 3,000 Vitamin C, Krill Oil, Curcumin and the 7.5 Deplin along with the 1000 mg sublinqual methocobalomin.
    .
    Thank you so much for all of your hard work and all of the help you are sharing with others. Hoping to hear back from you soon!

    LuAnn

    P.S. I am so sorry if I sound frantic. My thoughts seem to be racing and disjointed.

    • Fred Davis August 1, 2012 at 3:09 am # Reply

      Hi LuAnn,

      Taking Metafolin, Deplin, with methylb12 as you are doing, will start methgylation and cell formation at a high rate of speed plunging your potassium levels. Most people find 2000-3000mg per day of supplemntal potasium gluconate (more gentle on the stomach than chloride). Take no more than about 5 tablets at a time with a pint of water or more with food. Most get substantial relief in hours following the first dose. Good luck

  18. Leslie August 4, 2012 at 7:29 am # Reply

    Hi Ben:

    I am a 49 year old female patient of Dr. Briggs and she diagnosed me with a double mutation(A1298C/A1298C) after one visit to her office! I am already feeling better after only a few months of therapy! Keep up the good work!

    • Dr Ben August 5, 2012 at 6:57 am # Reply

      Leslie –

      That’s great! Tell Dr Briggs ‘Thank you!’ from me for testing you!

      How is she treating you? What supplements/meds are you taking currently? What symptoms were/are you experiencing?

      I understand these are personal questions so disclose only what you are comfortable with – ;)

      • Dan September 7, 2012 at 9:40 pm # Reply

        Hello Dr. Ben,

        I have a question which I’ve never seen answered re methylation genetics: If one has a single mutation for C677T is it okay to take a vitamin K2 supplement? I’ve always had a problem with bleeding gums and have found some benefit by taking vitamin D, but only if I take it with K2.

        It’s my understanding that vitamin k ‘regulates’ clotting…it doesn’t increase it, but would appreciate your opinion / clarification on the matter, especially regarding those of us with C677T issues.

        Thank you!

  19. Britney September 7, 2012 at 3:34 pm # Reply

    Hi Dr. Ben,
    I am currently a Senior at Hartford High School in Wisconsin. I am enrolled in the class Bacteria, Biotechnology, and Genetics (BBG). I was assigned to write a paper on a topic of genetics and I chose genetic mutations. I was wondering if you had time, could you email me/chat with me whenever you have time? It would be much appreciated.
    Thanks,
    Britney

  20. Lydia September 13, 2012 at 10:55 pm # Reply

    Dr. Ben,
    I found out a month ago that i have mthfr. (C677T, heterozygous) I am 8 months pregnant and hav been on lovenox 125mg due to a blood clot in my left arm. I previously had five miscarriages in a row. The doc told me that the blood clot is very rare and the mutation i have wouldn’t have caused the miscarriages and cloting. I find it hard to believe that it is anything else that could have caused it. They also told me they could do no further testing. What is your take on this? Are there any tests I could request to get more insight on this?

    • Lydia September 15, 2012 at 11:17 pm # Reply

      *Sorry I am on 120mgs of Lovenox*
      Thankyou.

    • Lynn_M September 16, 2012 at 2:48 am # Reply

      There’s a lot of genetic clotting disorders to be tested for. Factor V Leiden is a big one, and pregnant women have mentioned others on the forum. Have you had genetic testing for clotting disorders other than MTHFR? You could always run a 23andme genome saliva test to investigate other genome disorders. It’s doesn’t require a doctor’s order, but you will have to pay out of pocket for it.

  21. Sherri October 4, 2012 at 11:52 am # Reply

    Dr Ben,

    I was just informed at my first prenatal visit that I had MTHFR. I have had three previous recurrent miscarriages in the last two years prior to this pregnancy and a completely healthy, seven year old that was the easiest pregnancy ever without any problems.

    Not that I fear being diagnosed with this mutation, I have done some research and I really don’t believe this is me. I don’t have any prior health problems of any kind and have always been in the best of health and work out all the time. I’m a type A personality and always ready to go. My family history is my sisters have all had miscarriages. I’m wondering if this is at all possibly a misdiagnosis or my blood test was the result of miscarriages and not the cause? I am now 41 and have always prior to this news contributed my miscarriages to my age.

  22. Lucy Yang October 16, 2012 at 6:07 am # Reply

    Hi Dr. Ben!

    Recently, I discontinued my pregnancy after finding out my baby had moderate to severe spina bifida. My ob had me do the mthfr test to see if my body will digest folic acid well. My lab result was I am compound heterozygous for the C677T and A1298C mutation in the MTHFR gene. He is sending me to a specialist and having me do bloodwork for homocysteine level. He also wants me to take baby aspirin for the rest of my life. I am 28 and feel a little uncomfortable taking baby aspirin for the rest of my life and want a 2nd opinion from my PCP. Also, my ob says I’m very lucky to have not had any miscarriages with that kind of mutation (cross my fingers). I have 3 healthy children.

    Because of my recent pregnancy situation, I want to try for another but with all of this new information I am stressed. I am taking 4 mg of folic acid daily, along with prenatal vitamins, and iron in hopes of a healthy pregnancy.

    On top of worrying about trying and having a successful pregnancy, should I be on baby aspirin for the rest of my life (I try to live a healthy lifestyle by walking daily and watching what I eat)? Is that not enough?

    Any advice?

    Thank you so much! It means a lot.

    With much appreciation,

    Lucy

    • Dan October 20, 2012 at 1:04 am # Reply

      I’m not sure Dr. Ben is checking this page anymore, as the last time he replied was over 2 months ago. I hope he’ll come back and help us with these questions.

      • Lucy Yang October 20, 2012 at 6:11 am # Reply

        I hope so too. I feel there are not a lot of professional who knows a lot about mthfr and I want to get the right information so I can make the right choices.

  23. Liza Sauls October 20, 2012 at 11:52 pm # Reply

    Our family already has Celiac (among other food issues) and Ehlers-Danlos Syndrome. Our MD is planning to test us for MTHFR also. I mentioned your site to several EDS and celiac support groups I moderate….and over only a few months, a VERY large percentage of patients with either/both are coming back with MTHFR issues also! Have you discovered other patients with this combo?

  24. Melissa October 23, 2012 at 12:44 am # Reply

    Dr. Ben,
    I have recently received results that I am heterozygous for 677 and 1298. H
    I had a postpartum massive hemorrhage with my first pregnancy
    five years ago. Three months ago I delivered my second son
    Via ceserean hysterectomy due to having placenta accreta.
    Six days later I was diagnosed with pulmonary embolism.
    I am on Lovenox injections for 6 months. Now I got the news
    Of these mutations. Will I need to be on blood thinners life long?
    What is the best vitamin regime for the future or advice for
    Future well being and health?

  25. crista February 1, 2013 at 4:57 am # Reply

    Dr Ben, my son is only 6 and suffers since birth with anxiety and sensitivity to noise and crowds. He has increasingly gotten more and more aggravated and violent. His father has been diagnosed as bi polar and abused drugs and alcohol since age 8 and even though he was clean and sober when we conceived, we are scared for our son. He goes through weeks sometimes of little sleep and night terrors at times. He becomes very anxious and easily agitated during those times. Could any of this be caused by a mutated MTHFR? Possibly be my husbands battle all his life? We are seeing a child psychiatrist next week and I was just informed by a friend about this gene today. I have been researching it and found your site. If this is possible, how likely is it his doctor will agree to the simple test? How likely is it he will even have heard of this? Can I insist he be tested?? Thank you for your input. If I get no cooperation from the doc, would it hurt to just start him on a folic acid supplement, what brand or kind can you recommend?

    • crista February 1, 2013 at 5:01 am # Reply

      We live in TX, by the way…near Amarillo…are there any doctors you know of that would be more knowledgeable? Again, thank you.

      • Kay April 5, 2013 at 5:49 am # Reply

        In Amarillo, you could check with Dr. Roby Mitchell (drfitt.com). If he can’t treat you, he might be able to refer you.

    • Bonnie February 2, 2013 at 7:23 am # Reply

      We too haVe a soon to be 8yr. Old son who has similar symptoms your son has. MTHFR could have a lot to do with it and shouldn’t be an issue for your doctor to order. The doctor most likely won’t know what to do with the results! Look up P.A.N.D.A.S. as well. Stands for pediatric autoimmune neurological disorder. My son also has this and currently being treated for both! Try to find doctor who understands both near you! I see Dr Ben isn’t taking on new patients, so I can give you the name of doctor in NJ who can most likely recommend someone to you in your area. Dr Montouris at Cenergie in Basking Ridge, NJ. Please feel free to email me if you would like to write back and forth. I know the helpless feeling!
      Bonnie

  26. Jennifer February 5, 2013 at 11:45 pm # Reply

    I am a 43 year old female suffering from depression anxiety and ocd since the age of 21. I have tried all the antidepressants out there and combinations of, and I seem to do better on anticholinergic AD’s. Presently on Paxil. I am not having a satisfactory reflief of my symptoms so my doctor suggested I add Deplin. I am three weeks into my trial with Deplin and I am not better, actually, I’m worse. My question to you is: Does methlyfolate cause an increase in acetylcholine? Reason I’m asking is that the Deplin is causing itching, very similar to the itch i get when I jog, which is called ”jogger’s urticaria” and the fact that anticholinergic medications work best for my anxiety. Is there a link with methylfolate excess and an increase in acetylcholine? Is it possible that methylfolate can worse depression in some individuals?

    Thank you so much!!

    • Freddd February 18, 2013 at 7:07 pm # Reply

      Hi Jennifer,
      Adding Deplin can cause, in the course of actually starting healing, induced deficiencies of MeCbl and potassium. It’s a very complicated set codependent nutrients. I have put together some mapping of the induced deficiencies. Look up Deadlock Quartet and AdoCbl, Mecbl, L-methylfolate (Deplin, Metafolin). You will find the indformation in detail.

  27. Becky February 18, 2013 at 1:35 am # Reply

    I have read most of the comments on this page and I am quite intrigued. My son, age 12, has been sick for 2 years. But in backtracking who knows. When I was pregnant there were some concerns with an ultrasound that there was a blockage of the ecopattern of his bowels. At the time this indicated either downs, cystic fibrosis or cytomegalovirus. He was born all seemed ok. He had chronic constipation for his first 2 years with a severe milk allergy. Also at that time had a red dye allergy. Years passed and he seemed ok, with the occasional constipation. Two years ago, he became really sick. He started with lethargy, headaches, and vomiting. The vomiting continued to get worse 5-9x per day. He then was getting chronic strep infections. Had a staph infection. Constipation continued to get worse. Finally after several strep infections the doctors took out his adenoids and tonsils, kept him in the hospital for IVantibiotics. A few months later started biofeedback therapy for the anal sphincter not working to help the constipation issues. Had the food sensitivity panel run, and there are so many foods he should avoid. His vomiting started up again a few months ago, so badly that he could no longer keep down solid foods. He lost 14 pounds. He is having constipation issues again, positive for one copy of the A1298C mutation, vit D deficiency, low zinc, extremely low IgA, low globulin, high folate, low creatine, high lymphs, high phosporus, , just had a CT scan of his abdomen findings : prominent bt non-pathologically enlarged mesenteric nd right lower quadrant lymph nodes. This is a nonspecific fnding which ma be postinflammatory or infectious. He is currently taking miralax for the constipation and domperidone for the vomiting. The vomiting has finally subsided on the domperidone. Thank you so much for any thoughts you might have regarding my son. We feel like all the symptoms are getting treated but not the problem.

    • Freddd February 18, 2013 at 7:14 pm # Reply

      Hi Becky,

      I was there for decades. I suspect, no guarantees, that the Deadlock Quartet might be just the thing for your son. Again it is complicated. But the lackl of these things and their replacement in food by fake vitamins like folic acid, CyCbl and HyCbl can casue a multitude of problems that certainly looks abourt the same. I used to vomit every day and endless nausea, and lousy digenstion and constipation and diarhea. The real vitamins, AdoCbl, MeCbl, l-methylfolate and l-carnitine fumarate and others as needed, may be at the root casue for what appears to be combined deficiency diseases.
      http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-10#post-335067 in that whole thread, you may find some hints.

      • Becky February 23, 2013 at 12:27 am # Reply

        Thank you Freddd, I will read this info.

    • evy February 18, 2013 at 9:11 pm # Reply

      Becky,

      You sure have your hands full with those health issues. I am sorry to hear all that, and hope you will find some answers quickly and will find hope to help you. With his sensitivities and all, does he eat only non processed and natural type of foods that you make?

      evy

      • Becky February 18, 2013 at 9:37 pm # Reply

        Evy,
        Thank you. He does only eat what I make. He is not eating any processed foods and we have many foods. I actually don’t even mind the cooking part, I feel we will all be healthier for it. It is just frustrating that the doctors have not been able to put all the pieces of the puzzle together. I just wonder if we are not yet seeing the right doctor. Maybe the ones we are dealing with are just for symptoms and not “the problem”. Fortunately, our son has a great spirit and keeps proding along without much complaint. We go to the hospitals in Boston, MA.
        Becky

        • evy February 18, 2013 at 10:33 pm # Reply

          Has he been vaccinated?

          • Becky February 18, 2013 at 10:56 pm #

            Yes, he had his regular scheduled vaccinations, all except the chickenpox as he ended up gettingthe chicken pox.

  28. Carol February 19, 2013 at 1:10 am # Reply

    Having so much trouble finding a doctor to treat me with this along with IBS- doc sent me home with injections with a mix to do 2x’s a week that is it- This can’t be right- I am in San Diego CA I need help to find a good doctor

  29. Anna Bradley February 19, 2013 at 7:47 pm # Reply

    Lights are clicking on left and right. I have fibromyalgia. Developed preeclampsia while pregnant. My 3.5 year old son is on the spectrum. I took SAMe years ago and it made me so sick I thought I was dying. I started my son on methylcobalamin and fish oils a year ago and we’ve seen huge changes.
    We haven’t been tested yet, but my family has a history of risk. I guess I’m adding 5 MTHF next, although I was headed in the direction of carnitine and ribose. This is all so overwhelming! Thank you for this site. I’m trying to soak up as much as I can.

  30. Kathy Myers March 21, 2013 at 5:52 am # Reply

    I have a question for you. My husband keeps developing arterial blood clots in his right leg. He is very close to losing it at the hip, which means there would be no prosthetic for him. We are doctoring at Lutheran Hospital in Fort Wayne, and the doctors seem to be at a loss. I want another opinion, but they put me off. If they don’t have the answers, then please let someone help them!
    Could you please give me some ideas before we have to the most drastic thing?
    We are both getting depressed over this. The hematologist also said he can’t figure out why the blood is clotting. He had 3 brothers with the same problem, but again, the hematologist said it is not genetic. It just doesn’t sound right.
    Drs. Danby, and Hook are working on him.
    They are going in this morning to change the sponges on the grafts, and they are having a plastic surgeon look at it to see if it would be something where they could take the sartorious muscle and pull over the graft. But again, it won’t stop the clotting. To me that is the most important problem.
    I would appreciate a response on this, please? Thank you so much for taking the time to read this.
    Kathy Myers
    my cell phone #is 260-417-4673. Thanks again.

    • Dr Ben March 21, 2013 at 7:18 pm # Reply

      Kathy –

      Please contact Sterling Hill at http://www.MTHFRSupport.com – she is very knowledgeable in clotting issues.

      Testing for genetic issues, environmental issues (mold), vitamin and or drug causes – many possible reasons.

      Best
      Dr Lynch

  31. Malenda April 6, 2013 at 1:03 am # Reply

    Hey Dr. Ben my daughter had a stroke while still in my womb 6 years ago. The old thing that could kind of explain it was that she tested homozygous for the MTHFR C677t gene mutation. She was started on Folic Acid since birth and now taked 1 mg daily. I was tested about 7 months ago and found out I am compound heterozygous for the MTHFR C677t and A1298c and was started on 1 mg of Folic Acid too. I was also diagnosed with hypothyroidism in 2009 and take 50 mcg of Synthroid daily. My health has slowly declined since starting the Folic Acid and I am starting to wonder if that is the reason. My hair is falling out and thinning. What hair does grow back falls out when it is only a couple of inches long. My acne has increased, I have night sweats, horible PMS, symptoms of hypoglycemia, dizziness, trouble staying asleep, and I cannot tolerate caffeine at all anymore. I used to drink 2 cups a day but now I can’t. Before I began the folic acid I was running and heavy weightlifting but now I can’t do it without getting really dizzy and cold. I have since quit doing it all and can only walk. And when I say cold I mean my temp drops to 96 and my hands and feet get freezing. I was diagnosed with Raynauds disease at this time too. My recent labwork included cbc, comp, 3 hour glucose, TSH, and T4 all came normal. I am at a loss as to what to do and while researching things I came across your website and saw that you say not to take the folic acid. Is this bad to take? Could this be the reason for my symptoms? Should we stop taking it?

  32. Jennifer April 6, 2013 at 4:02 am # Reply

    Greetings.
    I have recently gone to my ObGyn and mentioned bad mood swings. She immediately said that I was low in vitamin B and suggested that I test for something. Just to be safe. I went back 1 month later and discovered I had C677T single mutation. She put me on methylfolate which immediately threw me for a loop. Did not react well to the dosage and luckily found your site that let me know that different people react differently. Good to know.
    Alzheimers runs in my family. I have 3 blood related aunts with it. Should I test my kids for this mutation, as well? Would diet help? One of the children has eczema, ear infections, and food allergies (she’s 3). Since I’ve seen my doc (who has also put me on a grain free diet) I feel much better, still a little tired, but much better.

    Great work on getting the word out there!

    • savvy April 7, 2013 at 11:24 pm # Reply

      Response to Jennifer. MY son is starting the MTHF remedy and has had extreme anxiety. WOuld like to know what you mean by “threw me for a loop”, as I am trying to figure out if the remedy causes emotional/mental anxiety.

      • Jennifer April 8, 2013 at 10:19 pm # Reply

        Savvy,
        The very first day that I starting taking the Methylfolate I was extremely tired and had a bad headache the whole day. Nothing could get me moving. When I got home from work, my husband picked me up and took me to bed at 7pm. I slept for 13 hours. The next day I felt like I had a hangover. I started googleing for “side effects of Methylfolate” and found http://mthfr.net/methylfolate-side-effects/2012/03/01/ .

        I immediately cut down on the amount of pills from 3 to 1. Each pill has 20.4mg of vitamin B6, 1.2mg of Folate, 1.2 mg of B12, and 1.8g of Betaine Anhydrous. I was, also, still taking the vitamin B suppliment that my doc had given, initially. I’m not off of the stand alone vitamin B and only on the Methylfolate pills. I was able to work up to 3 after cutting out the stand alone vitamin B was finished off.

        I agree that different people react differently to everything, including vitamins and medicines. Check the dosage. I’ve only been on this for a little more than a month now, but emotionally I’m feeling great.

  33. Joyce April 17, 2013 at 10:24 pm # Reply

    Hello ,
    I am wanting to know more about the MTHfR and pancreatitis and if MTHFR may be related to Sphincter of Oddi dysfunction. I have suspected SOD that has gone untreated for over a year due to having no insurance and having to travel out of state for testing and treatment.. I now have medicare and have an appt. with a specialist in Dallas for ERCP w manometry in a few weeks. I have documented pancreatitis on the one occasion that I went to the ER. I have several attacks a month that were the same as when I went to the ER so I fear I may have chronic pancreatitis. My primary doc checked me for the MTHFR defect several years back due to chronic fatigue. I read about in a little then and recalled it was associated with pancreatitis. thanks in advance for any information you can give me.

  34. April May 11, 2013 at 8:57 pm # Reply

    Hi Ben,
    Please help! I have MThfr -c677t and a1298c. I did not know that I had this diease until I had a miscarriage with my first child. My miscarriage was @ 17 weeks. I can not seem to get pregnant again. Do I need to see a genetist? Should I be daily a daily aspirin? And Heparin if I ever get pregnant again? I really want to be a mom. I am 34 years old . Please Help!

    • Dr Ben May 13, 2013 at 6:09 pm # Reply

      Hi April –

      Please visit the Find a Doctor page.

      You may also find this useful about prenatal supplementation.

      Your doctors will have to decide if you need to be on additional meds. Typically, Lovenox, baby aspirin and perhaps progesterone are common additions made by OB/GYNs in those having previous miscarriages due to MTHFR.

      • April May 13, 2013 at 10:58 pm # Reply

        Thank you so much for making my day better by answering my question.

        • Connie May 31, 2013 at 7:29 am # Reply

          I am 677 and 1298 and since starting the MTHF I am constantly dizzy. I am also detoxing from a yeast over growth. I did great on just the B12 injection, compounded but I am frustrated by the confusion and dizziness that has set in. I discontinued the yeast over growth med and am just working on the MTHFR stuff. What are your suggestions? I am also a bariatric surgery lap band patient so that complicates it further.

      • Ashley May 15, 2013 at 10:30 pm # Reply

        Dr. Ben,
        I just found out I am homozygous for the 1298 mutation after having a missed miscarriage at 10.5 weeks. I am in the process of finding a doctor that can help me with this and have also started on your supplements from seeking health. My b12 with metafolin came today. I was ecstatic! I will also start your pre natal supplementation recommendation as soon as I feel like I get my methylfolate issue under control.

        My question for you is how do I help ease my morning sickness. It was awful with my son (only child) as well as with the miscarriage. I saw you posted on one discussion thread that you knew how to solve morning sickness and I would literally pay you thousands of dollars to find out because I have tried what I thought was everything. nothing seemed to help. I am wanting to get pregnant again once my methylfolate stores are up. Thank you so much for doing all you do and I anxiously await your response!

  35. Traci June 10, 2013 at 9:26 pm # Reply

    Hello Dr. Ben,
    Have you ever had a patient with extreme insomnia due to MTHFR? If so, were they ever able to come off of prescription drugs for insomnia after starting treatment? Is it possible for your body to start producing serotonin on its own, to allow you to sleep without drugs after starting treatment?
    Thank you,
    Traci

  36. leya June 19, 2013 at 11:11 pm # Reply

    I just ended a twenty year illness with lyme (I was misdiagnosed). I turned 40 three months ago and was just diagnosed with having this. (I’m a double mutation). I was hoping to find someone as a penpal that wants to share stories and offer support etc. Thanks everyone for reading this and God bless! Hope there is a cure for this and lyme soon! :)

    • Y June 20, 2013 at 12:43 am # Reply

      Hi Leya,
      Are you saying you were misdiagnosed with Lyme and it’s MTHFR, or the other way around? We have both. I have 4 girls, 3 tested, and 2 were clearly +, 1 was undetermined for Lyme. My husband was +, I was undetermined. My girls have had something going on since birth, dr.s think it’s due to the Lyme.
      Love to talk to you!

    • evy June 20, 2013 at 12:44 am # Reply

      Leya,

      Glad you have found a right direction to go with your illness. My 20 year old daughter has been diagnosed with the double mutation, as we have sought answers for her increasing fatigue/exhaustion/illness issues. I would love to compare stories, since it sounds like you have been having health issues since you were about the age of my daughter. Feel free to contact me at sun flower lane dela nos at ya hoo dot com.

      :)

      evy

  37. Catherine Valenzuela June 28, 2013 at 2:05 am # Reply

    Hi Dr. Lynch
    I was wondering what steps I go about inviting you to my home town of Fresno to speak for women who are dealing with MTHFR. I have noticed there is a lot of miss information being giving out to people, and I feel its because many of the doctors arn’t familiar with the condition, thus allowing people to be on the wrong treatment plan, or even worse no treatment plan at all. I feel that everyones story is power and if each person that attends your speaking engagement can go back and inform their dr about what they have learned and hopefully start a chain reaction of getting people to better understand this mutation and the health problems associated with it. I have a place to host the event, your travel expenses would be payed for and what ever you charge. My email is ggbrucie79@gmail.com. Thank you
    Catherine Valenzuela

    • Dr Ben June 29, 2013 at 9:47 pm # Reply

      Hi Catherine –

      Please contact Jatone at 800-547-9812. She organizes all the speaking inquiries.

      Thank you for helping increase the awareness and need for appropriate care.

      Dr Lynch

  38. Wendy Donaldson June 29, 2013 at 2:00 pm # Reply

    Dr. Ben,
    I have C677 mutation (1 copy). I also have Lyme disease and myasthenia gravis. I’ve never been treated for the mthfr, other than b12 injections while under treatment for the Lyme disease for the general weakness and specifically leg weakness I was having. Seemed to helpsome. None of the dr.’s I’ve been to since tested for mthfr put me on any regimen to treat this! 3 months ago was diagnosed with myasthenia gravis also and take Mestinon now. The neurologist I see is an expert on myasthenia, and am very thankful for that. But when I brought up mthfr, he didn’t seem to think much about it. On my own, I began using methyl-b12 sublingual 5000mcg per day, in the morning. It seems to help some with the fatigue and neuro problems, but not a lot. Am I not taking enough? I have a far infrared sauna, but the heat really fatigues me so i don’t use it anymore. Other ways to help with detox? Is skin brushing beneficial and enough? Your website is very interesting…thank you! Wendy

  39. Anais July 2, 2013 at 12:41 pm # Reply

    Hello,
    I have the 677T MTHFR, the heterozygote type. I had pre-eclampsia with my first child, he was born premature, low weight and he stayed in NICU for a month.
    I would like to have another baby, but I am really scared of the complications. My gynecologist told me to get folic acid and he says he would put me on baby aspirin plus injections if I got pregnant again.
    Can you please tell me if there are any studies related to this mutation and the risk of preeclampsia?
    What other products should I take, beside folic acid?

  40. Anais July 2, 2013 at 7:01 pm # Reply

    Thank you for your answer ! Great site!

  41. Bonnie July 2, 2013 at 7:48 pm # Reply

    Last year I did phone consult with you on our now 8 year old son who has single C667.he had been diagnosed at 4 with PDD-NOS and ADHD. We switched Dan doctors and she said he doesn’t have PDD-NOS but has PANDAS. His M pneumoniae IgG Abs, IgM Abs and Anti-DNase B Strep Antibodies go very high! Recently they were so high and his ammonia level was high like in liver failure, but that was checked and is fine. When these levels are high his frustration level is low and leads to bed tantrums. He also is very sensitive to things like the tags in his shirt. Antibiotics bring the bacteria down and lactulose brings down ammonia, but I am wondering if C667 could play a part or if you had any thoughts on how to get rid of them? Or any thoughts in general!!
    Thank you,
    Bonnie

    P.s. I also found out I have double C667 but have no symptoms. What should I be taking besides MTHF, co-enzyme 10 and vitamin c?

    • Becky July 3, 2013 at 1:12 am # Reply

      Bonnie,
      My son, age 13, is positive for C1298 which really hasn’t been addressed as of yet. He was having huge issues with NONStrep A, finally we had his tonsils and adenoids removed and they kept him in the hospital and put him on antibiotics overnight. It had been 9 months of the strep. Drs. were concerned with Pandas for us too, but he did not have the Pandas. However, he also has low IgA, low IgM and low IgG, which they are saying is CVID ( common variable immune deficiency) we are going for a second opinion as the doctors are recommending Immunoglobulin infusions. Not sure how I feel about that yet. He, also, has gastroparesis.
      I am very curious to follow your case, this has been ongoing for us for 3 years now. So incredibly frustrating.
      Thank you for sharing,
      Becky

      • Freddd July 3, 2013 at 2:41 am # Reply

        Hi Becky,

        Based on my own lifetime of experience, I found dose of 4000mg (2×2000) of Vit C a day got rid of 99% of my strep infections. This sounds like a not uncommon variant MeCbl, AdoCbl, L-methylfolate and l-carnitine fumarate deficiencies (Deadlock Quartet) immune disorders. Insufficient potassium is also a common cause of gastroparesis. I also had hypersensitivity to labels and tags and seams in my clothing. Too much B2 relative to other vitamins can also cause a lot of this at times. Good luck.

      • Bonnie August 12, 2013 at 7:48 am # Reply

        Hi, sorry I haven’t written sooner. I haven’t had chance to read! Our doctor doesn’t like the immun. infusions. Thinks its too much for young ones and should be done in hospital. Going to get glutathione I’ve soon. Now she also thinks he may have intermittent explosive disorder, but first have to rule out seizures with 24 hr EEG. Will also get with biofeedback. Gets cranial sacral massage that help him a lot! Adding infra red sauna after massage this week.
        I haven’t heard of CIVD, but that seems to be opposite of us as our son’s levels shoot way high.
        I don’t min sharing! It’s constant
        Earning for all of us as we dig our way for knowledge and answers!,
        Bonnie

  42. Angie Fette July 3, 2013 at 3:43 pm # Reply

    Hi Dr. Ben,

    I have been reading your website and seeking out information to help treat my 3yr old son who has severe behavioral issues, ADHD combined type, Sensory Processing Disorder, Insomnia since birth, chronic constipation, GERD, and they think possibly a disruptive behavior disorder or even a mood disorder, but still so young to tell. In reading your posts I became intrigued, but then concerned because due to his combination of SPD, GERD, and others, Hunter has not allowed me to brush his teeth very well since growing them. I’ve tried everything and have him working with an O.T., Speech Therapist, and Feeding Team to improve. However, he needed extensive dental work this week due to the lack of being able to properly care for them. In reading your comment about link between thyroid problems and mercury in dental procedures, I became very concerned. When the dentist performed his procedure I didn’t think to ask what type of crowns she’d be using, and because the procedure was done at the hospital under anesthesia, I wasn’t present. I had originally been told he’d only need 1 or 2 crowns, but it turned out he needed all 4 large molars on the bottom placed with crowns. I was shocked when I saw him to see that he had 4 large silver crowns on the bottom of his little mouth. My kids joke, calling him “ganster” looking. But now I’m worried. He already has many issues and has been also complaining about pain in his extremities, and lower back and bottom on a regular basis. And he’s always complaining his feet hurt and are hot, and he overheats easily when playing and in heat. I wanted to find out if he could have a mutation, but now I’m worried about possible heavy metal poisoning due to the fact that these have to be in for quite a few years since he’s so young.

    Do you have any thoughts on this? Should I be worried? Do you have any other ideas or suggestions on which direction we should be taking his care? We’ve only seen Specialists for the insomnia and behavioral problems so far. We are just starting to try to find the cause for the pain and overheating. And the nurse practitioner for the Gastro Dept at Children’s Hospital has only offered Miralax for the constipation thus far, sighting constipation can be common in 3 yr olds that are potty training. So I’d greatly appreciate any insight and would love to visit you but have not checked into your location as of yet. I truly appreciate the fact that you answer your posts personally. I don’t know if I’ll have to find someone with your expertise closer to me or what, but I’m really interested in checking our whole family for the mutations you’d described. I have severe Fibromyalgia and IBS that has been debilitating, along with other weird symptoms like hot flashes, faint spells, heart palpitations, and others that have gone undiagnosed for years. My husband has similar pain and symptoms on his side . My other 2 children have complained of strange aches and pains, headaches, anxiety, depression, and such since very young ages. So I wonder what could be genetic related. Thank you for any insight. Keep up the amazing work you do. God bless!

    • Angie Fette July 3, 2013 at 4:40 pm # Reply

      Oh BTW, I also think I have candida overgrowth myself. I have the symptoms. I don’t know how much of our problems are related, but I know all of us but our 3yr old were exposed to toxic mold for almost 2 years, unknowingly. We’ve all been sick since. I wonder if we have a mutation and our severe reaction to the mold was worsened by it??? We have all been chemically sensitive and sick ever since. Im sure it is part of the problem, but I’ve met others exposed to same molds with quite less affects. I think some may be more genetically inclined to have a bad reaction and a mutation could be part of the problem, cause I am not “allergic” to molds according to allergy Dr.

  43. Jan October 9, 2013 at 12:36 am # Reply

    Dear Dr. Ben,

    I have just been diagnosed with both genes. I have had poor health but functional my whole life. As of now I am having a hard time with taking any supplements. They make my heart race. Do you have a Dr. in Ok that would know how to treat me and take my symptoms seriously? I am ultra sensitive to everything it seems! What if you can’t take the things you need?

  44. Kendra October 23, 2013 at 2:36 pm # Reply

    Dr. Ben Lynch,
    I wanted to thank you for all that you are doing. I will try to keep story as brief as I can. I was very sick as a child and was diagnosed with a learning disability. My mom was told I may never learn to read or write. By God’s grace I have a masters degree now and work as an Occupational Therapist. I work with children with developmental delays including Autism. I had 2 miscarriages before my first daughter was born and shortly after her birth past several golf ball size clots. She has been sick since she was 2 weeks old. At 18 months she started to have melt downs that would last up to an hour at a time. I then had 4 miscarriages, one in which 4 empty sacks were growing. When I was pregnant with my 2nd daughter the doctor said I had 2 copies of the C677T MFTHR mutation and increased my folate and put me on Lovenox. When she was 2 weeks old I found her in bassinet and she was turning blue. She quickly responded to me picking her up and shaking her. She developed thrush at 3 weeks. Ever since then (she is 5 now) we have been on a search for answers, I had no idea that the MTHFR was related. We have seen all sorts of doctors, taken lots of supplements, and tried many diets. We are all doing better, but it still made me sad that we were still dealing with rashes and leg cramps and some mild melt downs after all we have done. Last year I had another miscarriage after having my tubes tied after my daughter was born to prevent further miscarriages (this one was just as heartbreaking as the others) Our new pediatrician tested the girls for MTHFR this spring and they have 1 copy of the C677T. He started us on the Methyl factors and it has helped a lot. After finding your protocol I plan on adding a few more things to see if that helps with the rest of our symptoms. It is sad that I have know about MTHFR for 6 years and just finding out about this information. My doctors originally told me that they did not know much about it. I have been navigating my children’s health on my own as I had lost faith in our doctors. With a lot of my patients I notice a lot of the same symptoms that my children have, yet don’t know where to tell them to go to have it checked out as most of my clients have Medicaid. Most of the doctors we have seen have been out of pocket which has been finically draining. I would love to be apart of getting this info out there so other woman do not have to go through what I have.
    Thanks again, Kendra

  45. carrie stallman October 28, 2013 at 9:25 pm # Reply

    Hello I have one copy of the c677t and i have been working with a nutristionist for over a year and i keep trying different things to help me with it. and nothing seems to work. when i take methfolate and methelcobimn my symptons get worse right away. my homesystine levels are good though but when i take the methylfolate it raises my folic acid levels. not sure what to do. can you help me? I would like to find a doctor that specilizes in this where i live but i haven’t found one yet. can you help me?

  46. Jan Cook November 18, 2013 at 12:29 am # Reply

    Hello Dr. Lynch:
    I came upon your website trying to find out something about MTHFR. My daughter just found out she had the gene. Along with that she has been diagnosed with Fibromyalgia, cronic fatigue, yeast overgrowth, SIBO. Are all of these separate issues needing to each be treated separately, are they all related? Where do you start in treating these? Or is MTHFR a separate thing that gets treated later. She is devastated because she thinks she should not get pregnant, so becoming a mother is no longer an option. She has become severly depressed. She has been told to take Probiotics, but they are making her very sick. I would love a little guidance. we are overwhelmed. Thank you so much.

    • evy November 22, 2013 at 2:49 am # Reply

      Hi Jan,

      We have a daughter with seemingly similar issues to what your daughter is dealing with. Feel free to send me an email at

      fischfrau bin ich at y a h oo. com if you wish, and maybe we can give you some encouragement :)

      evy

  47. Christina December 15, 2013 at 9:46 am # Reply

    Dr. Lynch,
    Thank you so much…for sharing…for everything! I am 31 years old, diagnosed w/FMS, CFS, thyroid issues–well, you get it–and for the first time in my entire life, I feel as though I’ve been validated. My symptoms are not “all in my head”, as I’ve become so accustomed to hearing–I can, finally, turn to a genetic test that proves I have something wrong (homozygous MTHFR C677T), as well as an expert in the field! Admittedly, I’m as lost as a chicken with my head cut off right now (lol); but with time and study, I am beginning to understand what I can do to make myself better–thanks in large part to you.

    I would ask you this, though; do you, or another expert whom you know of, have the time to do phone or Skype/Google chat consults? I have only a traditional doctor (who refuses to even discuss the MTHFR deficiency with me), and the nearest homeopathic/natural medicine practitioner that I can find is several hundred miles away.

    Again, thank you…I truly appreciate all that you’ve done to make this information accessible and more easily understood by people like me!

    Blessings to you and yours,
    Sincerely,
    Christina

  48. Sandy O'Keefe December 16, 2013 at 3:24 am # Reply

    I have MTHFR diagnosed after an unresolved extensive blood clot following chemotherapy for breast cancer. I then researched this condition and found some interesting information from your site. I gave birth to a daughter 30 years ago after an uneventful pregnancy. She was born with only half a brain hence was not able to support life and died at 2 weeks of age. Despite an autopsy, no explanation was able to be given for her 1/2 brain. Then I read your blog and I wonder if this is the reason for my daughter’s condition as well as my mother’s and grandmother’s deaths, both from embolisms. Neither were tested for any blood disorders.

    Sandy

  49. Lawrence T. Lakey January 4, 2014 at 9:48 pm # Reply

    Dr. Ben. I just found your web site and am interested in potential treatments for MTHFR deficiency (677,677). I began tripping in 2002 and attributed it to pernicious anemia. Started heavy doses of methylcobalamin at that time. In 2006, I was diagnosed with toxic nodular goiter and achalasia. In 2008, I was diagnosed with MTHFR (677,677) deficiency and have been on daily doses of methylcobalamin (90mg), L-methyl folate (4,000mcg), and betaine (3900mcg) and Methimazole (as needed to adjust TSH level).
    I found vitamin b-6 to worsen my feet problems.

    At the age of 90, I find my mental abilities reasonably good but am very anemic and have severe neuropathy in my feet. I don’t have any elimination or skeletal problems. Any comments?

  50. Myrna Saxe-Morris January 23, 2014 at 4:46 am # Reply

    I am allergic to salicylates, benzoates and sulfonamides and sulfites. Are any of these in MFTHR?

  51. Marcie Marwood January 23, 2014 at 6:18 pm # Reply

    Dear Dr. Lynch,
    The information on your website paired with my test results will make my life SIGNIFICANTLY better. In addition, this information may very well save the lives of some of my younger family members. There have been two suicides in my family and my greatest desire is to prevent a third.
    I requested this test back in April and my then PCP consented. The results were not of concern to that provider and I was advised I did not need any special treatment. In November I had a SEVERE adverse reaction to a medication that involved significant psychosis, anxiety and other physical problems. I returned to my previous provider in Seattle, Dr. Kim Celmer. She was quick to note the significance of my genetic mutation and began me on a supplement immediately. There have been so many complications that we have not yet had time to discuss this issue in depth. She has me on other supportive supplements as well. I was severely ill and am still dealing with the fallout.
    I thank you for your dedication and passion to share this vital information. I only hope that my family is receptive to learning about this condition.
    Kind regards,
    Marcie Marwood

  52. Tammy Heenan February 5, 2014 at 10:34 pm # Reply

    Dear Dr. Ben,
    I spend time each day scouring the internet for anything that may help me with my multiple medical conditions: Errosive Osteoarthritis, Monoclonal Gammopathy (MGUS), Osteoporosis, Asthma, Emphysema, A-Fib, Paroxymal Atrial Tachycardia, Degenerative Disk Disease, Raynauds, Restless Leg Syndrome, Small Fiber Polynueropathy, numbness in part of hand, numbeness in part of hip and through part of groin, Migraines and Cluster Migraines. Had a Migraine for five weeks straight last year. Had Thyroid removed due to Cancer – 20 yrs ago. Partial Nephrectomy 2011 – had a mass which turned out to be benign. Many Sinus Infecs over the years & two sinus surgeries. Have Sinus Infec now tha that recurred from one in January and on 2000 mg Augmentin 2 x day. Scary taking that high dose. I have constant ringing in ears which gets louder with migraine. Many adverse reactions to foods, perfumed items, cleaning products, laundry soaps, facial products, and reactions cause burning in mouth, eyes, ears, and then spreads throughout body. Reaction to shellfish and contrast dye and bee stings last for several days. Severe reaction fro spray on hair detangler applied by hair salon but the reaction didnt hit until next morning. Ended up in ER. Been tested for Systemic Mastocytosis by bone marrow test and told negative but when samples sent to pathologist, staff noted reason for test Monoclonal Gammopathy. The words Mast Cell were noted anyplace at all in pathologists report. So i wonder if Mast Cells were even looked at. Punch biopsies done by my Family Nurse Practitioner were negative. Tryptase 10. I have some amount of burning every day. I have itching intermittently. My doctor thinks I may have MCAD but punch biopsies did not support that. Bunch biopsies done on areas where no rash present. Rash on shoulders, arms, chest, back, and face come and go. But the rashes arent big hives. In thinking back, I realize I have had symptoms that go back 20 yrs or more. I had much milder burning and itching back then. Is their any direction you can suggest? Would being tested for MFTHR help me get to a diagnosis? I am going to do test for 23andMe. My son did one 2 yrs ago. I am seeing an Allergist/Immunologist in two days and will have some skin testing on that day as well. I am being treated with Hydroxyzine, Benadryl, Singulair, and was briefly on high dose of Prednisone when had bad reaction three months ago. I am off the antihistamines until after testing on Friday. Sorry, I am so longwinded. :) Thank you for any advice you can give me. I am thankful to have found your website and to know the great things you have done and are doing. You very obviously are a wise, compassionate person who cares deeply about the well being and good health of others. Thank you for your time in reading this. :) ,

  53. Sharon Doty Wickham February 27, 2014 at 2:17 am # Reply

    My daughter has been tested pos for 2 mutations. 3 cousins have as well, all dtrs of 3 brothers. She has been stuck in a post concussion nightmare for 6 weeks. Pediatric neurologist has her on several meds. She is too sick to go to school. I need help! I’m taking her to a functional neurologist tomorrow. Any other suggestions would be great

  54. Jen February 27, 2014 at 9:02 am # Reply

    Dr Lynch

    I have just been directed to your website by a natropath I had a short consultation with today whilst looking for digestive enzymes. With a medical history of multiple food (wheat, pork, lamb, dairy, soy, fermented foods etc), drug and chemical allergies, all since birth, migraines from age 10, an inability to digest proteins+carbohydrates+fats properly (hence the digestive enzymes), a diagnosis of IBS/leaky gut in my 20s, thyroid cancer and a stroke both in my early 40′s (I am now 53), she thought immediately of MTHFR and Pyroluria. So now I am reading up on both these topics to see what should be my next step.

    My health is good regardless of my above challenges but I feel I am going to have to do another adjustment to my diet and review the supplements I am taking or should be taking. I also need to lose some weight but the body just won’t cooperate at present.

    Thank you for making your ongoing research in this particular gene readily available for everyone.

    Jen

    • Jen February 27, 2014 at 10:03 am # Reply

      Dr Lynch

      Just had another thought/query.

      What effect does having no thyroid and using thyroxine replacements have short/long term with a diagnosis of a MTHFR mutation, if any?

      This query is because all doctors tend to keep their post surgical patients in a constant state of hypothyroidism which impacts on all aspects of their health e.g. brain fog, lethargy, sensitivity to hot/cold, appetite issues, falling asleep easily in a chair but not so much when in bed, I have the metabolisim of a snail since my surgery. My energy levels do the crash and burn in the blink of an eye.

      There is so little written for us thyroidless people as everything is on how to look after your thyroid and foods to eat. My endocronologist just looked at me like I was talking martian when I asked him something similar.

      Is just taking my dosage of thyroid medication enough?

  55. Sarah J March 26, 2014 at 12:10 pm # Reply

    Hi, I have one copy of 1229 and one copy of 677. I was tested after suffering an episode of ischimic colitis 3 days after foot surgery. I also had an IUD so the ER gastro thought the MTHFR mutation, foit surgery, and iud may have made a oerfact stirm for a clot. I am better now however my MTHFR trail has ran cold. I was sent to a genetic councler hows only recomendation was to remove the iud. She said past that MTHFR is a non issue and to stop testing my family. My 4yr old son has 2 copies of 1229. My father passed at 48 from heart failure. All of his 6 brothers have heart issues. One other had passed and one is in hospice now. Im TERRIFIED I may leave my son early as my Dad left us. Im 30… 18yrs left?? I would like help finding a doctor in Baltimore MD to see myself, my Brother, and Sister (all have the mutation, same parents). Please help!

  56. Tiff April 3, 2014 at 4:14 am # Reply

    Hi I’m 22 I was diagnosed with mthfr mutation 2 factor when I was 16 I grew up always having heart pains an always tired with leg cramps when I got pregnant with my first son I started taking lovenox shots a couple days after I found out I started to do blackouts my doctor promise they would go away it was just because I was pregnant so I had my son an they went away well I still have the wart pain an leg cramps an fatigue then I got pregnant with my second son two years later an the blackouts came back different doctor told me the same thing an put me on lovenox an the las two months I was switched to heparin twice a day it was living hell because they told me I would have to inject them in my stomach so now my youngest is two an the black outs still haven’t went away an I still know nothing I the disorder I have an if the symptoms are even related to them but I take no medicine or nothing for it an I see everyone else takes stuff should I be taking anything angst the doctors I ask are surprised when I tell them I have it like they have never heard of such a thing

  57. Paula April 11, 2014 at 1:58 am # Reply

    Found out in December I have wild type MTHFR c677 T and heterozygous A1298C I have non functional alleles 2 nd 3 and ultra rapid allele 17. Have been on methylated folate nd watching my diet and my homocystein and lipids have gone sky high these past three months. I think I need to see someone in Pa who has knowledge about this. Any suggestions?

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