It's taken me a while to write a second blog since finding out my daughter and I are Homozygous MTHFR. I went through the normal cycle of depression and defeated attitude while researching and not getting a whole lot of good answers.
Fast forward through quite a few setbacks and some steps forward and now I feel I have a much better understanding for what our bodies and minds are dealing with and how to help us cope. Our setbacks reveal more answers and give us confirmation we are on the right track. They usually come from changing a supplement, stress, or eating the wrong foods.
For my asthmatic daughter it is much more complicated. Being a preteen who can't eat what everyone else does and has to take quite a few supplements at a sleepover has proven quite embarrassing. It is also hard to keep up with school and social life on a very limited amount of energy.
When someone is diagnosed with MTHFR it's complicated to explain to others. We look normal. We can be quite happy and functional on the outside. Unfortunately, what's happening on our insides can lead to quite devastating results if we don't stay on top of our health.
So, how do you do that? Start with blood tests from a functional or Naturopathic Dr. who understands how to guide you through the blood work results. Understand that this is not a sprint but a lifelong race. That is not to sound daunting or depressing but more to warn you there is no quick fix. You may feel great for a few weeks and have a set back and feel confused and exhausted. Learn to embrace them because that's when you learn the most. This is true in all life situations!
Next, well actually NOW, start cleaning up your diet. That means give up processed foods. Eat only grass-fed, antibiotic-free meats. Certified Organic fruits and vegetables. Go grain-free and dairy-free. Go plastic-free and reduce your toxic overload as much as financially possible. Due to my daughter's asthma we had already removed most carpet from our home, placed a good air filter (Oransi) in her room as well as replaced our 17 year old A/C by the time we confirmed she was homozygous MTHFR. Reduce and eliminate Flouride and chlorine from your toothpaste and shower/bath water. We use Young Living Thieves toothpaste which made my daughters gums go from bright red and inflamed to pink after one use!
Eliminate over the counter medicines and turn to more holistic health aids such as herbals and botanicals. We use Young Livings Essential Oils and have been quite pleased with our results. Your doctor will guide you on what other meds and supplements you will need to start based on your blood work results.
What should you expect to take? Most doctors will put you on a methyl folate and methyl B as well as a good probiotic. Other health related issues that may be affected by your MTHFR mutation(s) is vast and will be determined by your blood work as well as symptoms. Common issues will be cholesterol (particle size is crucial!) SAMe, glucose tolerance levels, thyroid health (broken down to T3 & T4 not just TSH), as well as a host of amino acids, liver, cortisol, and bladder functions.
So by now you may be freaking out and getting overwhelmed, sorry! You didn't even know why you were feeling so horrible for years and now you have the answer. Embrace the knowledge and get educated for knowledge is power!
You can make a difference for yourself and your children and anyone suffering without answers as to why.
My best source of information comes from Dr. Ben Lynch. He too is dealing with his children and himself having MTHFR mutations but he has an epigenetics background to make sense of all of this for us. Here is a very informative article from him that I found very helpful in understanding our "set backs."
I am very fortunate I can do Biofeedback scans when things feel off. Biofeedback gives me the info I need to supplement correctly. The physicians are not as readily available or have the knowledge to handle such complexities that come with MTHFR mutations. Share Dr. Ben Lynch's research with your doctor and help educate them to better serve you and your children. As always, I am available for Biofeedback appointments to help decipher the path you need to take for better health.
My best advice is be happy and grateful and know that this information is empowering you to live a more conscious lifestyle. For a complimentary clarity call to determine a routine to best support your lifestyle of well-being please contact me.
Yes, you were supposed to get the curse word reference from the title because that's basically how I'm feeling right about now. Maybe the scientists that discovered this genetic mutation felt the same way.
However, MTHFR is a gene mutation we all need to be made aware of for ourselves and our loved ones. The purpose of my blog is to educate others based on my own life lessons. Well, get ready for an education! If you read my first blog, PFAPA, you learned about the rocky road we have had with my daughter's health. This MTHFR mutation was the answer to a lot of unanswered questions I didn't even know to ask.
A few weeks ago, after a 4 day vacation where we didn't make the best food choices, my daughter got sick. She had a low grade fever, pale face, sometimes with a jaundice tint of yellow and she started having random rashes and trouble breathing as well as complete exhaustion. After a few days of this unexplained illness, a trip to urgent care, and conversations with her Asthma Dr., I did an ER Biofeedback scan. It showed her liver was a mess among other things. The Dr. I conduct Biofeedback with, Tonya, suggested I get a genetic test called MTHFR. She suspected that my daughter had two mutations, the C677T & A1298C. Tonya said to educate myself and my husband on the MTHFR gene mutation because she was 99% sure my daughter had it based on her two previous Biofeedback scans. She also said we needed to be prepared to educate our physicians. Boy was she ever right!
The last 3 weeks have been a whirlwind of emotions and education for me and my family. My first action was to call my Dad. His knowledge of the MTHFR mutation was limited to his OBGYN practice of testing for it only after women had multiple miscarriages. My pediatrician who ran the test at my request had no knowledge of the MTHFR gene mutation nor did he know where we should go with this new information. A Geneticist? Hematologist? It was up to me to turn into Momma bear and figure out what, if anything I could do to improve my child's quality of life NOW and not after a heart issue or several miscarriages in her future. I also was made aware that one of my best friends' miscarriages and heart attack (100% blockage of the widow maker) at age 34 were both due to this same MTHFR mutation.
So what is it and what does it mean to you? Apparently, it is a very common gene mutation which occurs in 30% of us. From what I have researched it seems Scientists only began testing for this mutation in 2003. Basically, half of us are walking around with one or more of these mutations. Heterozygous with either C677T or A1298C. My daughter and I have both.
Many people are not symptomatic until these genes are turned on such as in my daughters case with the Guardasil injection. Too many toxins flooding a body unable to detox creates illness. Many of us are finding relief from elimination diets, detoxing, and exercising because our bodies need a break from trying to do something they simply can't do, methylate. When you have one or more of these mutations, your body cannot get rid of toxins easily and doesn't convert vitamins properly. For instance when you take Folic Acid it is converted in the body to its usable form of Methyl Folate. If you have MTHFR your body doesn't convert and the folic acid becomes a toxin. There is a much more scientific way of explaining this, but for fear of plagerizing I'll just give you this link to check it out for yourself. It's fascinating. PLEASE READ!!!
This is HUGE!!! For all my Mommies wondering why their child is always sick, or why they have had so many miscarriages, for all my friends fighting or have fought cancer, for the huge population presenting with thyroid symptoms and behavioral disorders, this is a scientific breakthrough you need to be aware of NOW!!! Knowledge is power. I am grateful beyond explanation for my journey no matter how rough. I am so incredibly grateful for my work in Biofeedback which lead me to a discovery I would have never discovered otherwise. If I can help just one of you who are not being heard, not getting answers or not feeling validated, it was all worth it for me. My daughter may not feel the same at the moment but she will! We are survivors! Please share this info with anyone you feel it may benefit. We need to educate ourselves so we can protect ourselves.
If you haven't clicked on the Please Read words above do it now! You will be glad you did.
I have grown my knowledge immensely since this original post. I've got you covered! Book your complimentary clarity call to learn how to support your body to wholeness.
I have often been asked if I've changed my diet. The answer is a resounding YES! Like many of us on a journey to health I've tried the latest fads and diets coupled with the 2 hour a day workouts 7 days a week. Sure, I looked better and got more respect because of how I looked. But was I as healthy as I looked? At my best shape since my late teens I was 34 years old, I was in a size 6 jeans and was sporting some nice looking abs. I was working out 7 days a week doing spin classes, weights, and yoga. I was happy with my life, my marriage, and money was for the first time in my life not stressing me out.
So why was I having "episodes" of losing my eye sight and feeling like my heart was beating outside of my chest??? I was also having numbness in my fingers and down my right arm. A rheumatologist diagnosed me with peripheral neuropathy. My father, an OB/GYN, said that diagnosis made no sense. People with peripheral neuropathy usually have uncontrolled diabetes. He sent me to an internal medicine doctor. This was the first time I felt confident enough to tell a doctor every symptom I was having. I knew I looked healthy and was living a healthy lifestyle so he couldn't dismiss me as depressed or needing to lose weight. I was right! The doctor took notes and seemed very baffled by my situation. He referred me to a cardiologist and a neurologist. After many tests including an EKG, wearing a halter monitor for a month, being muscle tested and MRI'd including using a dye through my heart, we still had no real answer for what was happening and why. We even captured the "episodes" where my heart rate went from 65 to 180 bpm in 3 seconds while relaxing in a chair. My eyes went black and my heart came pumping out of my chest. My cardiologist ordered a tilt table test to try and reproduce my symptoms under an EKG so he could figure out why this was occurring. Still no answers! I was quite scared and confused, not to mention worrying my family. I had stopped working out for fear of dying AND because a heart monitor wasn't the latest gym fashion accessory.
Out of the blue, my mom sent me an article about ASPARTAME POISONING!!!! Every symptom I had was in this article. I wasn't drinking the very popular diet soft drinks which lead to the "Gulf War Syndrome" so where was it coming from? My favorite zero calorie sugar fix was to mix one pink and one blue packets of artificial sweetener in my hot coffee which I drank a couple of times a day as well as in my occasional glass of iced tea. I stopped immediately! Within two weeks I was symptom free and had baffled my doctors. So yes, over the years, my diet has changed and will keep changing as I evolve and become aware of what negatively and positively impacts my body.
Biofeedback has helped me take the guesswork out of what those things are. I don't have to succumb to the latest and greatest info. on what to eat anymore. I lost 25lbs in the first few months of doing Biofeedback. I feel better and healthier than I did at age 34 in a size 6! When your body is in balance it can heal itself. Bringing your body into balance does not have to be overwhelming and confusing and full of bad diet decisions. Let me help you take your healthcare back with Biofeedback! Let your body tell you what needs to change.
So many people have asked me about Biofeedback that I decided I should post my personal experience. Please read my journey page on this site for an overview of what brought me to even try this path to healing. As I stated in that posting, I had just come through a bout of acute diverticulitis. I had been put on several strong antibiotics and underwent a colonoscopy. These measures were taken after I received a stone scan which is basically a cat scan of your abdominal area showing acute diverticulitis. The Gastroenterologist was surprised that a 40 year old would have this condition as it normally affects people in their mid to late 60's and older. I had heard "You are too young" statement before and didn't give it much attention. However, I did decide a few months later to take my healthcare in a more proactive direction. I had already noticed success with acupuncture and energy work like healing touch but I still felt I needed more knowledge of why my body was "too old for my age."
My first session with Biofeedback was met with an openness to healing change. I had no idea what I was getting into but I figured it couldn't hurt. After 30 minutes of resting my hand on the Zyto scan the phone rang. It was Tonya who had been on the other end of a computer miles away with only knowledge of my first name. She made statements about my medical history as if she had several of my Dr.'s charts open in front of her. She said things like..."I see you have no uterus but two ovaries and a cyst on the right one," as well as "You had left ear trauma," and "you have trouble with your right ankle and hip." I was blown away. What really surprised me and grossed me out was when she then told me..."You have parasites and they have been reeking havoc on your body for about 2 and 1/2 years. I immediately asked, "Could that be why I had acute diverticulitis?" She said absolutely! She put me on a protocol to get my gut healthy and make it a hostile home for these parasites to survive. The protocol included probiotics and digestive enzymes. I may not have fully believed that I actually had parasites until I passed one and managed to take a photo which I showed to 2 Gynecologist and my Gastroenterologist. They all agreed it was a parasite named ascaris! Wow! These little creatures had invaded my body without a trace. They didn't even show up on a cat scan or colonoscopy yet they had done so much damage. I was a believer in Biofeedback! I knew that my journey to healing was finally on the right track.
To start your journey to healing and find out whats at the root of your problems please use my contact page to schedule your Biofeedback session.
For my first post I wanted to speak about an illness that caused my family many concerns for many years before being diagnosed.
After being laid off at seven months pregnant I was able to stay home for my second child. When she was twelve weeks old I started back at the gym trying to lose the baby weight.
My daughter got sick. She got sick a lot! I stopped bringing her to the gym daycare assuming it was the culprit. She still got sick! My doctor said my ten year old was bringing germs home from school. I made him change his clothes and wash up before interacting with his sister. She still got sick! I breastfed her until she was fourteen months old. She still got sick!
We were constantly on medicines and breathing treatments. I told my Pediatrician I felt like there was a pattern much like a menstrual cycle. Once a month she was sick! The sickness always started with a pale face, dark circles, allergy eyes and nose, loss of appetite, fatigue, and a temperature of 99°. By the third day the fever would get up to 103°, which dried up her runny nose and eyes but still left her no appetite and no stamina.
As she got older the fevers got higher, peaking at 106°. The whole process lasted seven days. Seven days of pushing fluids and alternating Tylenol and Motrin every 3 hours coupled with an antibiotic for the unknown infection. By the time her temp was over 101° I was in the doctor's office. He would check for the normal signs of infection that would bring on fever such as ears, throat, and bladder. When those were clear he would check her blood with a prick of the finger. Her white count was always elevated, meaning she had an infection. The doctor would prescribe antibiotics and sometimes breathing treatments were needed as well.
By the age of four my pediatrician decided I needed to see an infectious disease doctor. There clearly was a pattern but now the white count was 25,000, which could mean leukemia or some other systemic disease.
FEAR set in stronger than the hope of an answer! Going down this road was something I saw coming. I wanted the answers but at the same time I was terrified of them! We were missing out on life. One week per month we were home bound. I knew something had to change. I knew there had to be an answer. If I knew what I was dealing with things would get better.
The answers did not come easy. After three months of traveling an hour to see the infectious disease doctor, numerous interns asking me the same questions over and over, and an enormous amount of blood work, we got an answer.
PFAPA - periodic fever adenitis pharyngitis aphthous ulcer syndrome. A non life threatening disease to which there is no cure but with any luck the child will grow out of by her teens.
Well, I got my answer and I was quite relieved she was going to live! But I didn't like how she was living. I couldn't accept the no cure part of the diagnosis.
I asked my chiropractor to take a look at her neck and feel for swollen lymph nodes. He checked for oddities in a four year old neck. I figured since getting my neck adjusted helped me with lymphatic drainage maybe it would help alleviate the PFAPA symptoms.
Bingo!!! My chiropractor felt my four year olds neck while she was having the beginning symptoms of PFAPA and his eyes got big! He said with amazement, her neck is out, and it's out bad! I held my breath and said adjust her. He did. That night she coughed the most productive wet cough. The fever never got higher than 103° and it only lasted four days. I was excited and optimistic that I had found a control, not a cure, but a way of dealing. The next fever didn't come in it's typical pattern of 28 days. It was a full five weeks. In between illnesses I had the chiropractor check her neck and it was fine. No adjustments needed. When the symptoms came back we headed to get adjusted. I started preemptive strikes which lessened the duration and lengthened the in between time of the fevers. Within four months we were not on a pattern anymore. By the age of 5 we were not sick all the time. In fact, she didn't miss school, that I can remember, her whole year of kindergarten!
Unfortunately, the years of Tylenol, Motrin, Zofran, and a multitude of antibiotics have done a number on her gut. Not to mention the eating patterns that were formed of starving every three weeks and then gorging to replenish what was lost. I didn't make the best choices for her because I didn't know any better.
The purpose of this blog is to help educate others on a disease that comes from a place of inflammation. It goes undiagnosed and mistreated which causes other issues. If you suspect your child has PFAPA, tell your doctor to look for ulcers during the fever. Do not treat your child with antibiotics and over the counter drugs to control PFAPA. There are alternatives. Message me for more info on holistic options that will not have adverse long term side effects. You can control fever and symptoms of PFAPA and in my case control the symptoms of the disease! I learned from my dad, a medical doctor, not to abuse antibiotics. I learned from my child what happens when you do. Alternative medicine is helping me reverse those decisions I made out of fear and ignorance. My pediatrician has educated himself and others on PFAPA and has diagnosed many children because of my girl. I hope this blog can do the same.