The Struggle is Part of the Story.
“Every time you eat or drink, you are either feeding disease, or fighting it.” -Heather Morgan, MS, NLC
The story behind the blog and my mystery illness…
Food has become my medicine. I have learned that a mostly plant based, gluten free diet has been key to my healing. I suffered for months, ultimately finding a Lyme disease diagnosis about a decade and a half after my Graves’ disease diagnosis as a teen. I was told I was autoimmune. Determined to listen to my body when antibiotics weren’t working for me, I went on to treat Lyme naturally, however I ultimately fell into many food traps trying to heal. I tried a paleo diet, food sensitivity testing, elimination diets including cutting out the nightshade family, and I even eliminated fruit at one point for 90 days- big mistake! as part of the sugar fear fad diet (sugar fueling and feeding my illness). Luckily, I learned a lot about my body along the way and finally found an answer to my illness as well as how to eat to heal. This blog is intended to share recipes for any and all individuals, regardless of what autoimmune condition one may or may not have (as ultimately the healing path is very similar, as much as I fought to believe that couldn’t be true) and regardless of what diet label works for one as an individual. It is meant to be a place to share recipes and inspire a clean diet for anyone. I’ve learned that just because one isn’t sick, doesn’t necessarily mean they are healthy. I do also hope that my story can save someone some time from the many food traps we fall into along the way when trying to heal with food. Eat your fruit and veggies people!! 🙂 For a more detailed story on my healing journey….continue reading below.
When I was 15, I became ill. It didn’t take long for family and the family doctor to conclude it was my thyroid. After all, thyroid disease ran in our family, so it must be, right? It was a long 3 years of playing around with doses of thyroid medication, a fainting episode, a trip to a cardiologist with heart pills for a racing heart, etc. before an endocrinologist finally diagnosed me with Graves autoimmune disease. I felt awful. I grew a goiter on my thyroid and my eyes were bugging out, my hair was falling out. I looked terrible. I was asked to drink radioactive iodine with the explanation that it would cease the function of my thyroid altogether and I would then just need to take a pill for the rest of my life to substitute the thyroid hormone. Sounded like an easy fix. It worked. For a while.
College, marriage, a career and family all happened. Life was pretty good. I was getting by with yearly lab work to check my thyroid levels and I continued to take my medication for the next 15+ years as I was prescribed. After pregnancy however, I’d now have episodes where I just didn’t quite feel the same as before pregnancy. Most people agreed, you never do. I experienced heart palpitations for a while and even an episode with a scary vision change, almost seizure-like along with flu-like symptoms at the same time, just a couple years after “P’s” birth. A trip to my MD with an EKG, and I was assured nothing was wrong. I was asked if I was under a lot of stress. No, not really. The next couple years, random small things happened, but nothing too out of the ordinary that couldn’t be confused as a cold, allergies, or even a “bug”. I often felt that something just wasn’t right. I felt run down and tired.
In 2013 however, my health really spiraled backwards. There were now days I was flu-like monthly it seemed, days I felt I might faint, days I had a fever that would come and go, days I was just extremely tired, and most of all, days I struggled with seasonal allergies that worsened over time. Headaches persisted and I lived with them 3-4 days of the week until these grew to be pretty much daily, some days, migraine-like. Next, came joint pain and muscle stiffness and occasional chest pain. I developed brain fog. Chalking it up to stress, I just tried to tell myself to relax, not take on so much. My seasonal allergies turned into full fledged year-round allergies. I began to seek chiropractic care for some relief. Little did I know, this was just the beginning of the fight for my life.
It was when on vacation that fall that I suffered from tremendous, unexplained jaw pain. A trip to the dentist with extensive x-rays when I returned home showed nothing and I was told to buy an over the counter bite plate for relief to wear at night sleeping and take some Motrin. 2 more months passed and heart palpitations and chest pain struck again. The pain woke me at night and it wasn’t uncommon to wake up from night terrors and night sweats and my body jolting. At least the jaw pain subsided. Why was I having so many dreams? Slowly over time I experienced slight numbness and tingling in random extremities that would come and go. Lab work showed my thyroid levels were fluctuating between overactive and under-active now without any rhyme or reason. Convinced it was my thyroid, I went back to my endocrinologist. Perplexed and adamant that it was not my thyroid, he referred me on to a cardiologist with the explanation that my resting heart rate was again beating way too fast. EKG’s, heart monitor, stress test, ultra-sound, the works, and I had the cardiologist now perplexed too. It was not my heart. No relief of symptoms, no doctor recommendations, I had no choice but to carry on doing the same thing I’d always done. Take my thyroid medication that clearly wasn’t working.
I was frustrated and the doctor bills were adding up by now. In many ways, I felt as I was becoming a hypochondriac and I just needed to settle down and be patient. This would pass, right? Anxiety?
Months later, things didn’t improve and I now had my first allergic reaction to food. My lip swelled up and it didn’t take long for me to notice that every time I put food into my mouth, my nose would run. I immediately booked an appointment with a new food allergist only to find that I was not allergic to anything, except almonds. Confused, I carried on. She explained that my story and symptoms sounded “auto-immune” and wanted to see me back in 6 weeks. She looked concerned. I had puzzled an allergist now too. With nothing else to try, I took it upon myself to experiment with food. After all, I am labeled “autoimmune” and the one gland that controls all other organs in our bodies, wasn’t responding to the medication I was told would work. I tried to cut gluten out of my diet and found I felt a little better, regardless of what the allergy results showed. It was a “fad diet”, right? But just maybe it was worth a shot. It got to the point where everything I put in my mouth, I became allergic to. I would even do a simple task as clean the kitchen sink with comet and my hands would turn red and swell up. My body started having a chemical reaction to food and everything around me for that matter. My lower body went numb and I walked around not feeling my legs. Eventually, it took effort to march down my stairs and I had to literally focus on each step I took with all effort for fear I might miss a step and fall. My coordination and balance were suffering. I’d nearly fall over just tying my shoe. In my 30’s, fairly active and fit, I didn’t understand. I had random hive-like rashes daily and my hands became weak and I could barely open the lid of the jelly jar. My brain fog and fatigue worsened. I just wanted to sleep. I developed shooting pains in my body and experienced head pain. My then 3 year old looked at me and said, “I wish you weren’t so sick all the time mama.” Even he could see it. Was I that much of a mystery that no doctor could figure out what was happening to me? I was told by another doctor to go to the hospital and “start over”.
Discouraged with conventional medicine, I sought help from a functional med doctor that ran more extensive testing. This doctor listened to me, my story, and spent over 2 hours with me on my first visit. I went on an elimination diet where I basically ate only very specific limited alkaline produce, nothing from the nightshade family, (goodbye tomatoes, a mistake-actually help fight off the virus I had ) and all the meat (another mistake-feeds the virus I had) for a couple weeks. I felt a little better yet. When my results would come back, she promised any food that I was not sensitive to, I could re-introduce. It was then that I realized the ingredients in our American diet. I was shocked, disgusted and discouraged as anything that I could buy out of the box, or can, or even on a store shelf for that matter contained something I was not allowed to have and had words in it I couldn’t even pronounce. The elimination diet was difficult and our food was full of chemicals! I could eat very little and the grocery store became a place I hated. I had to seek health food stores, Whole Foods and only the “organic” sections in grocery stores. I restricted myself to organic, as by now I had actually become sensitive to chemicals in even lettuce and celery. I was losing weight fast and felt so weak, but when I ate organic produce, I fared a little better.
As it was, lab results came back and I was told I was sensitive to over 20+ foods, including all grains except millet. What was millet? Looks like I wouldn’t be re-introducing anything anytime soon! Meat and produce forever. Still working with my new functional medicine doctor, I went back to my family MD with the results and he ran some further tests, suggested an MRI and said people like me “find their niche and I would find mine”. He agreed “something” was wrong, but couldn’t pinpoint it. I felt like I was my own doctor, bouncing from one conventional med doctor to the next, explaining my symptoms, my story, over and over only to find I was rundown and still had no answers. The family doctor’s new test results came back and guess what?, showed nothing abnormal. He even ran a western blot for Lyme disease per my request and negative. By now I was exhausted. 6 months had passed since my quest for an answer began and I literally felt like my organs inside were shutting down and in many ways, I felt like I was dying and not a doctor in the world could help me. My spleen hurt inside and other organs felt like they were shutting down. I was again, “fine”. My endocrinologist told me in a follow-up phone consultation that it shouldn’t matter what I eat, he admitted he didn’t know what gmos were, organic food was, etc. yet was sure that changing my food habits was not going to help. My body told me otherwise. I hung up the phone and cried. He had only temporarily “fixed” me and now I was sick again, because we hadn’t truly gotten rid of the viral invader.
It was at this time that Debbie Gibson shared her news with her Lyme disease diagnosis. She explained she had a chemical and food sensitivity and right then and there, with our stories so similar after my mom had watched her story on television, we self-diagnosed myself with Lyme disease regardless of my negative Western Blot. I didn’t recall a tick bite though, how could this be? The functional med doc who was helping me ordered a specific test for Lyme, and it came back that I not only had chronic Lyme disease, but multiple co-infections. Turns out, I had had this for a while and it was pretty bad. I was relieved to have a diagnosis, heart-broken to know it was Lyme and my outlook on what was next for me was hopeless. I had researched Lyme and knew there was little people could do if it wasn’t caught right away, there was no cure and many people lived with their symptoms, sometimes dying from the disease. Strangely, my son now started having similar symptoms like I experienced (not to the same degree fortunately) and I immediately worried that they too, were Lyme related. I read that of all diseases, Lyme had the least funding, had more reported cases in the last few years than cancer or HIV, was often misdiagnosed, had inaccurate testing and yet somehow, I actually had this. Yet, according to the CDC, I didn’t, and now possibly my son did too? It was like a movie. Insurance wouldn’t even cover any of my costs for my “clinical diagnosis”.
A Lyme literate MD and my functional med doctor eventually got me on a better track with supplements and diet for this clinical diagnosis. I actually got worse before I got better- supposedly a good sign that the bacteria was dying off. It was the Lyme literate MD that confirmed my son did in fact have a specific Lyme co-infection and I did in fact have Lyme plus many more co-infections including bacterial, parasitic and heavy metal toxicity. In treatment, it was later uncovered that I also suffered from Epstein Barr and strep, which to this day, is now believed to be the actual culprit of all of my symptoms and misdiagnosis from Day 1. These alone are known to cause thyroid dysfunction and mimic lyme symptoms. Either way, to top it off, I was told Lyme disease was in fact congenital, I learned that it could not only be transmitted from ticks, but was also believed to be transmitted from mosquitoes, flies, sand fleas, and lice, and it could even be sexually transmitted. Not only did my son and I have it, but my husband now too? (Fortunately, not being auto-immune, the boys were able to kick it naturally. Yay.) For me it was a different battle with lots of medications prescribed, both holistic and conventional and just recalling it still conjures up many emotions. I was scared. I literally lived my days around getting better, hoping I could get better and figuring out what supplement or medication I was to take next. I had a basket of tricks just to keep me functioning. I tried things HIV and cancer patients are referred to do in order to detox my body. From here I read more books on Lyme and nutrition and taught myself how to heal. I spent many days in bed and many more just going through day to day motions, barely functioning.
For a while, I couldn’t even go out to eat, how would I order off a menu? My diet was so restricted and I was only able to tolerate organic unprocessed food. Social functions with food became less and less appealing to me. I would in fact, avoid them altogether. It was just easier. People looked at me like I was crazy when I wouldn’t eat something because it wasn’t organic or it had gluten in it. I ate an extremely limited diet with lots of organic produce and grass fed meat for the next 6 months. Prayer pulled me through this darkest time in my life. My son taught me that any day I woke up, was a good day, and I had to get better for him, for my husband, for our little family. Bloggers like Danielle Walker, Against All Grain and Amie Valpone, The Healthy Apple, gave me recipe ideas, a spark of hope and strength and taught me that I wasn’t in this alone as much as I felt I was. Many people worried and thought I was being ridiculous for not seeking more conventional med methods. They challenged my opinions and my diet, but I could do this. I was told I was auto-immune but deep down I knew different. Something was wrong with me to make my body react like this and I would do this. I would heal. Regardless of what people thought.
Fast forward to present… I finally have answers to my health struggle thanks to 2 life changing books, The Medical Medium, and Life-Changing Foods by Anthony William. I’ve learned to LOVE fruit again, avoid diet fads and I have even had the opportunity to re-introduce many foods, many that doctors thought I’d never gain back. I am still gluten-free (not a fad), I’m looking to re-introduce almonds again soon and I try to eliminate grains and meat when I can. My son follows an entirely gluten-free and dairy free diet as well. We stick to strict organic at home for the most part. We are leaning towards a more plant based diet with limited animal protein each and every day. Are we vegan? No. Although we do enjoy eating vegan a lot!
The hardest struggle after getting my diagnosis and fighting off the disease, was just eating different than the average American person. This is where my real fight comes in. Although impossible at first, it really did become easier and easier. It was a diet change and now in many ways, I feel the best I’ve ever felt in years. People become excited for me that I can again, “eat” with my Lyme battle being over, yet they still don’t understand my choice to continue to eat clean. I can see them thinking, if you’re better, why do you still have to eat that way? I am getting better because I do eat this way.
I now understand more than ever that when Edison said, “The doctor of the future will no longer treat the human frame with drugs, but will rather cure and prevent disease with nutrition” that he was spot on. If our bodies can’t handle the chemicals in processed food we eat when we have compromised immune systems, why on earth would we choose to fuel our bodies with it at all?
I hope that my story can not only inspire Lyme patients, auto-immune patients, and others with health issues, anxiety or depression, but inspire anyone out there to just eat clean and check out the books I referenced. They are a total game changer for anyone diagnosed with mystery illness. “The food you eat can be the safest and most powerful form of medicine, or the slowest form of poison.” -Ann Wigmore
Food truly was and is my family’s medicine in our story. We had to stop eating those food-like products and start eating real, whole food to help us heal. It’s definitely worth a try. As our grocery bill has tripled, I’ll admit, there are things we sacrifice, “wants”, we give up to eat this way, but now you know why our “pod” is gluten free in this gluten filled world and our grocery list looks a lot different than it used to. There is nothing more important than our health and although I may have a long way yet to go on my recovery journey, I am so grateful for how far I’ve come and the second chance I’ve been given.
A special thanks to my husband and functional medicine doctor, for not giving up on me and just listening to me. Thank you for praying with me, crying with me and being there for me through my 3 year recovery. Lastly, a special thanks to Anthony William for finally delivering me the truth this year so I am able to dial in my diet that much further to enable continued healing. You all have literally saved and changed my life.