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My Mystery Illness

I suddenly began having strange symptoms… I kept wondering, “What is wrong with me?”

Have you ever woke up to find the life you’ve always known is no longer your own. That happened to me about two and a half years ago.

It was actually three years ago when I suddenly began having strange symptoms:  migraines, confusion, lack of balance. In time, anxiety kicked in, and then tics and tremors. It was truly unnerving. I kept wondering, “What is wrong with me?”

Then the summer of 2015, out of the blue, a strange and frightening new symptom – ataxia. Ataxia is muscle weakness and lack of coordination. It typically sets in the legs and affects ones walking, but as I found out it can effect any muscle group in your body.

At first, I thought I was developing Parkinson’s, then maybe MS, but the symptoms didn’t quite fit. I was wrongly diagnosed with Episodic Ataxia, again the symptoms didn’t quite fit. MRI’s, CT’s, EEG’s, EKG’s, neurologist after neurologist, blood test after blood test… nothing conclusive, nothing that could explain what was wrong with me.

The young, vibrant, outgoing woman of 2014 was now older, frightened, disabled, and totally dependent on others for nearly everything. Most of the time I had to use a walker. On my good days I was on my cane. And on my bad days I was wheelchair bound. This went on for two years.

Then a new doctor, a PA, ran some blood work  and sent some off for genetic testing and Bingo! an answer. MTHFR, compound heterozygous. Great! Now what is it?

MTHFR is a genetic mutation that can lead to a host of diseases and disorders. As I understand, there are basically three versions that effect genes 677 and 1298.
*heterozygous: which means there is one mutation on one gene, typically no problem
*homozygous: which means there are two mutations on one gene, more of a problem
*compound heterozygous: which means one mutation on each gene, a much bigger problem.
***for more information see:
https://www.dietvsdisease.org/mthfr-c677t-a1298c-mutation/ and
https://draxe.com/mthfr-mutation/

Confused? So was I. And not one of the local doctors knew what I was talking about. Oh there was the one who initially found it, but she moved off to another state. So I was left to do my own research. And research I did. And you know what, so should you. No one understands your body like you do. Trust yourself to know what are and are not your symptoms. The doctors can only run tests, do research, and then do their best to make an educated guess. Well can’t you do that? Why not start now?

 

My Diet, My Life

So after one confusing appointment after another, I finally stumbled upon a diagnosis of sorts. But even that is a mystery for the doctors in my area.  Now let me clarify, there are a few that are familiar with the cardiovascular side of MTHFR. (Thankfully I caught that early.) Its the other side that evades the local doctors. It can cause anxiety, depression, neurological disorders, food intolerances, autoimmune disorders, fibromyalgia, chronic fatigue, (yes I’ve had all of these), in addition to autism (two daughters with Autism Spectrum Disorder), and a host of others. Now when no one in the medical profession can help you, its downright upsetting.

So as I said I began studying, and researching, listening to podcasts, and gathering all the information I could. It was exhausting. And you know what I found? I can’t convert folic acid/folate into its active form, which is necessary to metabolize B-12.  And just about every system in your body needs these two nutrients to operate correctly.  As a matter a fact, I also had low iron stores. And no matter how much iron I took, it didn’t raise my storage levels. Until I learned about methylated folate and methylated B-12. It took a while, but these two vitamins saved my life.

Also for me, it is vital to understand: DIET is EVERYTHING. To begin with I went on a three week elimination diet. I copied the one from the Institute of Functional Medicine. (see below)  This diet is designed to remove all allergens from your system. It helps to detox and to heal leaky gut. And yes, if you’re reading this, its possible you have leaky gut. But that’s a whole other post. The down side is for the first week or two there are some nasty symptoms from the detox. Just ride it out. Its part of the cleansing process. My worse symptom was the migraine. Ooh.

Then after going through all that, I decided to stick to a whole-foods, gluten-free, dairy-free diet; which is one of the suggested diets for children with Autism. However I was still having issues. So I cut out all corn, eggs, and peanuts. (Sound familiar? These are allergy related foods. Perhaps what we think is an allergy is actually a food intolerance.) Unfortunately, I also had to cut all refined oils which are in fried foods, such as chips; and breads, even if they were gluten-free. I had some serious healing to do.

Its been about a year since I first launched my new way of eating. I am still on a whole food, gluten-free, dairy-free diet. Now I can eat most corn products, pasture raised eggs, peanuts, and gluten-free breads with no side effects. However the refined oils in some foods continue to be an issue for me. So we do a lot of baking. And when we do use oils, we use coconut and olive oil. Also key is to look for non-gmo products. The less food is processed or refined the less problems on the digestive tract.

As you begin your self-education on your symptoms. I strongly suggest you start my looking at your diet.

I hope this was eye-opening, if not encouraging. If you are going through what I am, as are many others out there, remember you are not alone.

***for more information on the three week elimination diet see: https://experiencelife.com/article/the-institute-for-functional-medicines-elimination-diet-comprehensive-guide-and-food-plan/***

***for more information on mthfr and B12 issues see: https://mthfrgenehealth.com/mthfr-vitamin-b12/***

***for more information on proper diets for children with Autism see:  https://www.autism.com/treating_diets***

 

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