themighty logo

How Learning I Had an MTHFR Mutation Changed How I Treat My Lyme Disease

It’s been a long nine years with various health issues but Lyme has been the most difficult and longest journey of them all for me. Over the years I’ve done everything in my power to reach remission and saw multiple LLMDs, have spent years researching Lyme disease and treatments, taken various meds, supplements, antibiotics and herbs and made diet changes, lifestyle changes, etc… After I did extensive research to figure out why my body was not healing, I suspected I had a genetic mutation. In fact, scientists and geneticists are estimating 39-50 percent of the population has at least one form of the MTHFR gene mutation.

I requested the MTHFR gene mutation test from my primary doctor and behold, it actually came back positive! My doctor was quite impressed that I called that one! The fact that I’ve had various health issues over the past nine years, have seen over 50 doctors in the past six years, repeatedly complained about medications not working and not a single doctor mentioned or suggested testing me for this common and possibly life-altering mutation seriously baffles me.

Although this makes my Lyme disease more difficult to treat, I now know what I’m dealing with and how to manage it. I now have the answer. The answer to why my medications haven’t been working, why my body has been so inflamed and weakened by this horrendous illness. The answer to why I have 25 migraines a month. The answer to why my Lyme disease treatment has been unsuccessful over the past year despite my and my various doctors’ efforts.

I have started my Lyme treatment all over again since I have been taking a few weeks of Methyl B and Methyl Folate. This will help me better absorb all of my medications. Those this gene mutation are known to only absorb a small percent of the vital minerals and nutrients they should. This is no cake walk or easy fix, and there is no cure for the MTHFR gene mutation, only management to support the body and immune system so it better absorbs and heals.

This mutation also comes with a long list of side effects, risk factors and associated illnesses. The supplements for the MTHFR gene mutation must be adjusted accordingly and can come with nasty side effects while the body adjusts. However, these supplements will help my body better absorb vital nutrients, minerals and my prescription medications which is imperative during my Lyme disease treatment. Even though I was diagnosed with the more serious mutation form (homozygous C677T), I have high hopes that finally I can work on healing and getting into remission. If any of you are struggling to get better, have done everything “to the T” and have not seen any – if much – improvement, then I strongly urge you to get this test. This enzyme and its genetic factors are complex, so make sure you find a knowledgeable doctor to test and manage it if so. Please do not do a saliva/online genetic test which may give you skewed results and leave you to your own devices.

A simplified explanation:

Methylenetetrahydrofolate reductase (MTHFR) is an enzyme that is controlled by our MTHFR genes which regulates our entire bodies, signaling when to turn on and off certain systems, how we absorb foods and medications, how we react to our environment and ultimately how we heal and detox. If there is a mutation then that means the body and most systems (cardiac, neurological, GI, endocrine) are not functioning properly and this factor can be detrimental to healing from serious illness like Lyme disease or autoimmunity since it affects how our bodies function, react and ultimately heal.

MTHFR word cloud

I hope this can help a few people and maybe give someone an answer they’ve been searching for as to why they are still ill. Lyme disease is so widely misunderstood as it is and this mutation complicates it even further. A knowledgeable and experienced doctor to address and manage both conditions is crucial to gaining one’s health back. I hope one day most or even all doctors are more aware of this mutation and its signs/symptoms and associated issues. This will not be the answer or issue for everyone but at least it’s food for thought. Find a knowledgeable doctor and do your research. Knowledge is power.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via SilverV.