Tea ~ Organic Peppermint Tea
To Whom It May Concern,
I am writing to appeal the following claims:
- MTHFR mouth swab test for Charles
- MTHFR mouth swab test for Wesley
- Boston Heart Diagnostics test for myself that includes MTHFR as well as “exclusive advanced risk and genotyping tests which aid in the selection of appropriate therapeutic options, and a comprehensive offering of lipid, lipoprotein, apolipoprotein, cardiometabolic, liver, kidney and muscle tests.”
These appear to be considered either out of network or that “there is insufficient evidence establishing that the service is generally accepted in the Medical Community and/or proven to be effective according to peer reviewed clinical literature and are not covered.” The most recent tests for Charles and Wesley were to confirm that they indeed have the same MTHFR C677T gene mutation that I learned in December that I have through a completely out of pocked broad spectrum genetic test through Genomix Nutrition. I have 1 copy of this mutation and I believe that as a result of the compromised function of what is called the methylation cycle had become very ill due to a reduced ability to detox and reduce inflammation by 30-40%, resulting in Hashimoto’s Thyroiditis and Irritable Bowel Syndrome. And Charles also has 1 copy of this SNP like I do plus 1 copy of MTHFR A1298C, reducing his ability to detox and reduce inflammation by 50-60%, but what I feared and suspected based on Wesley (currently 10 months old) and his frequent ear infections, reflux and sinus issues even though he was born vaginally at a healthy 10 lbs. and 10 oz. and is exclusively breastfed (sounds like a picture of health, right?) is that he has 2 copies of this gene mutation, reducing his ability to detox and reduce inflammation by 70-80%! He should not be picking up every single little virus and bug that floats around. At 10 months old, he already has a compromised immune system. He was born 4 days after his due date, no complications. He also gets extremely constipated or vomits whenever he eats an enriched food product containing folic acid. See more on folic acid below.
If you look back in my file at June and July of 2014, I got really sick starting 3 months postpartum with Charles in about April of that year with stomach cramps after eating eggs, then it was butter. I chalked it up to new food allergies, but eventually, it didn’t matter what I ate. Eating anything gave me stomach cramps. I ended up in the ER in June after throwing up my breakfast on the CTA in Chicago and nearly fainting, all while carrying my 5 month old in a baby carrier on my front by myself. Conventional medicine said there was nothing they could do for me, until I insisted on an ultrasound, which determined it was that my gallbladder needed to be removed even though I had NONE of the classic symptoms of gallbladder disease other than stomach cramps for 4 hours after eating. Nevertheless, my gallbladder was removed in July and things improved. Fast forward to having Wesley in June 2016 and by September, I was having the exact same pain, in the same spot, with the same foods, for the same 4 hour duration after eating eggs, then butter, then it didn’t matter what I ate, it made me very sick. By October, I was lying on the floor after eating asking my 2.5 year old to bring me my phone to call someone for help. So the thing that was fixed by the removal of my gallbladder was not the fix for the problem after all, only a bandaid. I don’t have a gallbladder anymore, so now what do I do? I’m a 6’0” tall former division 1 volleyball player and coach and I still play sand doubles all summer long. I’m in great shape, but now, I’m 15 lbs UNDERWEIGHT and look extremely unhealthy. Why is that?
The genetic testing that you currently do not cover has given me more light into how my body functions and the folate (B9) deficiency that I have that is required to give my body energy to run all of it’s systems and I believe has caused my autoimmune diseases as a result. Did you know that those with MTHFR gene mutations should NOT take birth control pills because it blocks B vitamin absorption and clogs up the methylation cycle? That would have been fantastic information 10 years ago when I saw more and more issues pop up and the beginning of my health decline. If an estimated 40-50% of the US population has at least 1 of these mutations, don’t you think it would be a good idea and in the interest of BCBS to test these women before writing a prescription for hormonal birth control of any kind in order to save you money on ER visits that appear to be from food poisoning or flu (this happened to me in 2008), new allergies like silicon contact lenses and food sensitivities (started in 2010 and more and more piled up each year) and even infertility (lack of a period for 10 months between September 2011 and July 2012, lack of ovulation for another 9 months after that). I was prescribed birth control to “fix” the fact that I was not having a menstruation cycle in the first place. I asked “why?” back then and I’m so thankful that I did and I did not start taking birth control again in 2012 after I had stopped taking it in 2010 due to the side effects I was having. Birth control is a bandaid just covering up the problem. I had a full allergy panel in 2015 and actually have very few true allergies. These are not allergies, I’ve learned, these are inflammatory responses and sensitivities because I cannot reduce inflammation or detox efficiently and effectively. Stomach cramps? Inflammatory response to food. And guess what else? In the ER in December of 2015 from uncontrollable vomiting, the doctor diagnosed it as morning sickness. I know the difference between morning sickness nausea (which I had been taking Diclegis for and it had been very helpful; oh hello, B vitamins!). This is all a result of toxin buildup and inability to detox. I believe that those with MTHFR are extremely sensitive to toxins, metals and chemicals – on our food, in our water, and even the ethyl mercury and aluminum containing vaccines which are injected into pregnant women without ever having been tested on pregnant women. Women who are supposed to have a DTaP and flu shot every single pregnancy. Why are we giving newborns the Hep B vaccine if we are already testing mom for Hep B during pregnancy? If mom is negative, then there is no reason to give a baby this vaccine until they might be sexually active. I am not against vaccines, I am opposed to injecting toxins into my body or the bodies of my children when we cannot process or remove the ingredients without harm or injury. These need more testing and need some major changes for me to feel comfortable with that. As I ended up in the ER in October after having only WATER that morning (“enriched” with fluoride and chlorine) and the ER doctor absolutely unable to do anything to help me, I am more convinced than ever that genetic testing is necessary. Most of the typical CBC labs will be normal for me and people like me. No one is listening when we say something is wrong with us and most conventional medicine hands you a pill, which doesn’t solve the problem. Medication does not fix vitamin and nutrient deficiencies. Medication does not fix malabsorption and malnutrition. When my IBS symptoms got overwhelming in October, I saw a GI surgeon and specialist. He was elderly and very overweight and said there was nothing I could do except take medication for the rest of my life. When I asked about diet, he said that would not help. How can that be? That with proper diet and nutrition I would not improve? Turns out that without enough thyroid hormone (Hashimoto’s) you cannot make enough stomach acid (IBS) and it requires a lot of your body’s energy to digest food, and where does that energy come from? B vitamins. So let’s stop treating symptoms in the ER and at the infertility clinic and start looking at root causes and asking “Why?” a lot more.
So why appeal this claim? Because it is preventative care. It should have been preventative care 10 years ago for me. And this is now preventative care for my children who should not have to go through what I just went through. And it is now preventative care for my husband, because if Wesley has 2 copies for MTHFR c677t, that means that 1 came from mom and 1 from dad. What do I do to prevent this for them? Contrary to the lab results for my sons that say they should receive folic acid supplementation, that is outdated information. Those with MTHFR need to AVOID folic acid. Folic acid and folate are not the same thing. Folic acid is synthetic and cannot be used, absorbed and converted properly by those who already have a reduced ability to absorb and convert folate, again, just clogging up the methylation cycle and then resulting in many seemingly unrelated health issues. That is a big deal for women in pregnancy because we are recommended folic acid to prevent neural tube defects. While this has improved the instance of neural tube defects and other birth defects, for those with MTHFR (again, 40-50% of Americans), their babies are still at risk for those defects because of the lack of ability to absorb and convert folic acid into useable form. Methylfolate is what pregnant women should be taking as that covers all of the bases whether a woman has MTHFR folate deficiencies or not. I have seen great strides in children with autism or sensory processing spectrum disorders with simple methylfolate and methylcobalamin (B12) supplementation! I also supplement with methyl B12 injections weekly and they have helped tremendously. These are not covered by insurance as they are compounded. My thyroid medication for Hashimoto’s is also a compounded thyroid hormone (t3 & t4), not covered by insurance. I pay out of pocket for these, monthly, and they are very expensive. But worth it so I can be there for my children and not so fatigued I can barely get out of bed everyday, even if I’ve had 8, 10, or 12 hours of sleep and 1-3 naps per day. There’s a difference between being tired and being fatigued.
Thank you for your time and consideration,
Sarah Amidon
Typing with My Tea 