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 affect 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

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 Leaky Gut

I’ve mentioned Leaky Gut several times now. It’s also called intestinal permeability. What causes it? Put simply, the things we put in our mouth. Our gut lining is supposed to be a protective layer against such things as undigested food particles, toxic waste products and bacteria inside the digestive tract. When that lining is damaged it allows these things to pass through the intestinal wall, into our bloodstream and throughout our bodies, wreaking havoc along the way.

Some common signs: food intolerance, irritable bowel disorder, migraines, auto-immune disorders, joint and muscle pain, mood disorders, even skin disorders. And once again, I have suffered from all of these and more.

When I first began my research project, I was basically bed-ridden. My husband and daughters became my full-time caregivers.

My life felt like I was on a non-stop roller coaster. Most times I could do somethings for myself, but needed help with others. And there were times I was at the top of the track, when I was asymptomatic, completely independent. But then there were also the times had to have help bathing, getting dressed, moving from room to room, even eating.

Going out, whether to the store, a restaurant, worship, or just visiting family was always touchy. I was already in a wheelchair and that drew attention, but my tics and tremors really got me noticed. And when my seizures would kick in… Let’s just say I didn’t get out much. I was very self-conscious.

And from the best I can figure, this can all be traced back to my leaky gut. Eating and taking all the wrong things throughout my life, caused body-wide damage. Is it irreparable? I don’t know. But I do the best I can to not repeat any of my previous mistakes. And then eat in such a way that helps to heal all that can be healed.

What about the MTHFR? Well the two conditions are connected. The MTHFR is like being predisposed to a condition and the leaky gut is what set the wheels in motion.

As far as the straw that broke the camels back, what actually started me on this disabling roller coaster? I have no idea. I asked myself that many times. Was it a particularly bad flu or other virus I had? Could be. But looking back doesn’t fix anything. Its being proactive, doing the research, and changing our approach to life that makes a difference.

I hope that reading about my journey gives you readers the courage to start your own recovery, even if its only a partial recovery. Our life is in our hands, and its the only one we’re going to get. So do the best you can, and enjoy what you do with it.



My Pain Reliever…

Another important non-food source to consider carefully is pain medication. I, like most women, have taken Ibuprofen, Aleve, or some other NSAID for just about every pain for most of my life; from my monthly cycle to my East Texas sinus headaches to my aching back; along with a host of other over the counter products that are supposed to relieve my pain.

The problem? Well as my study of “Leaky Gut” continued I found that these too are toxic to the human body. These many “helpful” products affect and/or interfere with the methylation cycle. So while NSAIDs may relieve pain temporarily, they worsen the underlying problems and cause more in the process. And then for those like me that don’t detox properly, they store up in the body adding to the toxic levels we’re already sick from. And thus they actually add to the pain.

Now I have read that Tylenol is an acceptable pain reliever, but it must be taken sparingly if your body is going to be healthy. But just as each of us has different mutations and different battles, each must make their own decision of what to take and if they are willing to take it.

For me, if it’s a mild to moderate pain, I just endure it. For my sinus headache, Tylenol taken with an herbal product called HAS will usually kick it. But when its the migraine that comes with one of my attacks, nothing helps; so I just go to bed and try to sleep through it.

Due to my research and the seriousness of my illness, I don’t take any prescription medication. I have decided to never intentionally toxify my body again due to pain. It’s not easy, but its doable, most of the time.

(The HAS mentioned above is a Natures Sunshine product for hay fever, allergy, and sinus.)

My Food, My Vitamins

So as you can see from my Lifestyle Diet post, the foods we eat are of great importance. However, it’s just as important to think about the other things we put in our mouth. For example, off and on for many years I took a multi-vitamin with essential minerals. Healthy right? Could be.

For me the multi-vitamin mentioned above, or the extra B vitamins,  just build in my system. At one point my B12 levels were over approx 1500 and that was after I stopped taking it. So while for many these regular over the counter vitamins are beneficial, for MTHFR patients, they are quite problematic. (I have recently found that many prenatal vitamins now include methylated B12 and folate.) The point is, while there may be many vitamins, minerals, and other nutrients on the shelf, they are not all beneficial or safe for us. So do your research and choose carefully.

Now of course the best place to get your vitamins and minerals is your whole foods diet. Eating plenty of colorful fruits and vegetables is a wonderful place to start. But don’t stop there. Your healthy fats such as nuts, seeds, and oils should be a big part of your daily regimen. And should you choose to eat meat as I do, be choosy. I eat mainly naturally raised chicken and turkey and wild caught salmon. (By natural I mean they’re not pumped full of hormones and antibiotics to grow super sized birds.) I occasionally enjoy lean pork and beef.  As for grains, I buy brown basmati rice, as it is easier to digest, brown rice pasta, gluten-free oatmeal, real non-gmo cornmeal and cornflour, and other non-wheat flours. (We do eat many of the same comfort foods we grew up with. They’re just prepared in a healthier manner.) And as far as milk goes, there are now so many non-dairy milks to choose from. Experiment and find your favorites. We enjoy cashew, almond, and coconut. And soy is great to cook with, but each must choose their own.

The list could go on and on. The point is don’t limit yourself to just a few items. And don’t feel like you have to go without. Making the right choices provides the right nutrition for your body. Each color provides a wonderful array of vitamins and mineral. And when prepared properly with a wide range of spices, they burst with flavor as well.

There is no better way to heal yourself than with a tasty dish of healthy food. And today is a good day to start.


My Lifestyle Diet

So as I mentioned before, the early days of my illness were quite strange and confusing. For years I had suffered from the occasional attacks of fatigue. I figured it was something I inherited from my mother, because she had suffered from it for many years. Then one day, my sandwiches began to irritate my stomach. I thought it was a bug or something. But it didn’t go away. It got worse. It was most breads and then milk. But as my mother pointed out, I always drank milk and it had never effected me before, so I ignored it. Or I should say I tried to ignore it.

About the same time, my aunt was introduced to Tasca Reno’s Whole Foods Diet. It sounded good. And it wasn’t truly “dieting”, it was a healthy eating lifestyle. That sounded like the diet for me. Well for a while, it helped. I cut out most junk food, was eating mostly whole foods, and was losing weight. But I was still including whole wheat bread and skim milk because they are considered healthy foods.

When I finally had enough of the stomach pain, I gave up my beloved bread and milk, but the hardest to give up… the cheese. I love cheese. But the enzymes in all dairy products is what had been causing so many of my issues; not the lactose, but the casein. Now things were beginning to get better.

I was still in the early days of my new lifestyle diet, so as most of us do, I tried different suggestions.

Eat fermented foods: sauerkraut, yogurt, kefir, kombucha, pickles. Well believe it or not, I was born with a sugar intolerance. (Yes that means all sugars, natural and artificial. I’ve heard every suggestion. But I’ve been this way my whole life, so I’m fine.) Well I tried the unsweetened yogurt and kefir, but that’s just buttermilk. Yuck. The kombucha produces a sugar during process, so that was out. I was left with saurkraut and pickles. I tried to make a good go of it, but a person can only take so much of sour foods. So I gave that up.

I tried an Indian herbal treatment that included teas, curry, and detox remedies. I really don’t know how much I benefited physically, but it put me on to thinking about what detoxing really does. It is supposed to remove toxins from all parts of the body, starting with the gut. But more importantly, thanks to this Indian doctor and her story of disabling migraines, I learned that almost all illness and disease starts in the gut. Now I was onto something.

So as I studied this “Leaky Gut” I found that sure enough, everything we put in our mouth will affect us in one way or another, positive or negative. And almost all Americans are effected by Leaky Gut due to the Standard American Diet or SAD diet. (I know it’s a little redundant.) The majority of foods we eat have been processed and changed to make them more tasty. Read the ingredients label. How many of the ingredients do you recognize? How many of those ingredients are actually “food” and how many are actually chemicals? Something to think about, huh?

On top of that, I learned about GMO’s (genetically modified organisms). They change the DNA of certain foods in the seed, grow it, and feed it to us. There is a lot of study on how GMO foods are making people sick.

I also learned more about preservatives. These are supposed to lengthen the shelf life of our foods. The problem? Well when I walked into a certain shop and saw a hamburger and fries that had been sitting there for over a year, I got the point. When we eat these preservatives, we are eating toxins that were never meant to be food. But as I said earlier, science learned how to make foods tasty. So now the question for me is: how hungry am I? Enough to eat all those toxins? I’ll wait.

So how do you fix Leaky Gut? You literally transform the way you eat, for the rest of your life. Thus it becomes a lifestyle diet. It is a green, clean, and whole foods diet, free of all processed food and not food items such as the preservatives mentioned above. It can be difficult and costly to make your kitchen over to suit this new lifestyle change, but not as costly as the medical treatments that turned up empty.

So its worth all the effort put in to lengthen your life, but in a natural and safe way. And once the adjustment is made, new recipes are learned, it too can be quite tasty. I wish I had learned it many years ago.

Make the choice for yourself. It’s a choice you’ll never regret.


My Latest Relapse

What do you do when despite everything in you screaming “NO!”, your body slides back into a relapse?

It started the beginning of this month, January 2018. I had been doing wonderful (well wonderful for me) for several months. I have basically been wheelchair/walker/cane-free since late July last year. Oh I still had to cope with the fatigue and I still had to pace myself; although its hard to figure out what my exact pace is.

Most times I can walk short distances, I can usually handle going shopping, and I can drive independently. I pitch in on doing dishes, laundry, sweeping the floor, and do a lot of the cooking. These days I take pleasure in being able to do any or all of these things.

But back in January, I had a busy first week. Tuesday through Saturday I had something to do every morning. And it took its toll on me. The entire second week, Monday through Saturday, I was back on my walker and spent a lot of time in bed, totally spent. I didn’t go anywhere that week. I overdid it again.

The following week, I felt a bit better. I had more energy. I wasn’t exhausted like before, but I was still real tired. I remember one particular day I went to town with my husband to do some shopping. I made it through the first store fine, the second was pretty difficult, and at the third store (Best Buy) we had to get a wheelchair. I just had no energy left. When we got home, I went straight to bed.

Although I can manage to get out here and there, I stay tired. You know when the muscles in your neck and back are tired, to tired to stand or sit up straight. To make matters worse, my arm and leg muscles are aching, my “dry eye” has is constant in my right eye, and I’m having trouble spelling again. (Thank goodness for Auto Spellcheck.) Then today I started having some mild tics/tremors. I hope they don’t last long.

The thing to realize, I guess, is that whatever causes this is never gone. It just goes into a type of remission for a while, and then its back. I hate it. Its frustrating, depressing, and …  I lost the word, but that happens too. Is it memory loss? Or an inability to put feelings into words? Or to capture and process what my brain is trying to say?

Days like this. I can hardly function on a day-to-day basis. I’ll be doing fine. And then its gone, and I’m struggling again just to get through the day. I sit in the recliner and watch my family prepare dinner without me.  I feel helpless.

I’m just venting, but I know some of you out there know how I feel.  Remember, no matter how bad we may feel, we are not alone.

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.) It’s the other side that evades the local doctors. It can cause anxiety, depression, neurological disorders, food intolerance, 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 by 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***