“It’s all in your head.”
It’s unclear exactly when my story with Lyme disease actually began. Up until 2010, I had never even heard of Lyme Disease. It wasn’t until my family and I attended a fund raiser for one of my yoga instructors, who’s entire family had Lyme, when I started to understand a little more about this disease. It was the same yoga instructor who later encouraged me to get tested for Lyme when I began having bizarre symptoms.
I was born in North Carolina and spent time living in both Virginia and Pennsylvania before eventually moving to Florida at the age of six. Growing up, I camped, played in the woods with friends, investigating, building forts or just spending time out in nature. I was a rough and tumble kid. Never afraid to get my hands dirty, climb a tree or pass up an opportunity to explore a new patch of woods. I started to enjoy hiking my first year of college in New England and continued that activity while living in the Rocky Mountains. I have also spent a lot of time outdoors with my photography, never aware of the hidden dangers. I only recall one tick incident when I was very young and to this day am not certain if it was on me or a friend. I never developed a bullseye rash and if I felt flu symptoms, my mother and I most likely thought that it was the flu and nothing more. In high school and in my 20’s, I began suffering symptoms of fatigue, depression, chronic headaches, migraines, IBS, ADD, nightmares and insomnia. I remember thinking that it was just simply who I was and at times chalked it up to hormones, poor eating habits or just being different than others.
Fast forward to 10 years ago. It was after the birth of my daughter when I began to question some of my new physical symptoms. I’d had a troublesome pregnancy, gestational diabetes and developed a massive infection during labor after being induced. I ended up having an emergency C-section after 24 hours of treacherous labor. My daughter was born a healthy baby other than a broken toe and a short bout of jaundice. She was a large little girl weighing at 8.8 lbs and almost 22 inches long. A few weeks after being released from the hospital, I began feeling a fatigue that I simply could not shake, a crushing amount of anxiety, depression, insomnia, and strange hair follicle inflammations. It wasn’t the new parent, lack of sleep fatigue monster that most parents can relate to. Thinking that it could be thyroid related, hormones or something to do with my previous bout of gestational diabetes, I called my doctor. All my thyroid, blood sugar and other tests checked out fine and I was sent on my way with a script for antidepressants for postpartum depression and later prescribed something to help me sleep.
When my daughter was approaching two years of age, I reached out to another primary care doctor. I started having a sharp, stabbing pain that would shoot down my leg upon standing. Sitting too long became deeply uncomfortable and painful. Sleep became an event that I dreaded, even after purchasing a new mattress. My doctor at the time seeing that I had depression in my chart handed me a card for a therapist instead of finding the source of my pain. Needless to say, I changed doctors again. While under a new doctor’s care, I began experiencing migrating body aches, chest pain in my rib area and occasional swelling of my fingers. I recall waking one morning and I was unable to bend my pinky finger due to the severe swelling. My doctor referred me to a rheumatologist who diagnosed me with Fibromyalgia. I was sent home with a script to manage the nerve pain. A couple of months later, I sought out additional pain management because soon after I began the medication, I had to discontinue it due to visual disturbances. The new pain management doctor seemed positive we could get to the root of the problem and ordered an MRI of my lower back. When we finally discovered the culprit for the extreme pain in my lower back and leg, which was a herniated/ bulging lumbar disc and sciatica pain, he then proceeded by giving me oral steroids, pain medications and scheduled me for cortisone injections. At that time, he also ruled out fibromyalgia which was perplexing as I still suffered widespread pain. I began having allergic reactions to the oral steroids and thus had to discontinue them. The lumbar injections only gave me pain relief for a maximum of two weeks and the swelling from all the steroids had made my overall body aches worsen. I was basically left with pain medications and physical therapy exercises that I was to do at home.
In 2009, my family and I moved back to our home state after living out in the Rockies for over 7 years. My daughter had suffered terrible asthma and repeated illnesses. It was after her second bout of pneumonia in 18 months that we decided to try a more humid climate and so we moved back south near family. A few months after moving back, I had developed a bizarre case of dizzy spells. It had gotten to the point where I was falling into the walls while walking as my balance was severely affected. My doctor thought it was an inner ear disturbance or infection of some kind and gave me medication to help the dizziness. One afternoon, my heart rate and palpitations became very concerning and I went into a walk in clinic. I was sent to the Emergency room by the doctor at the clinic because he was concerned about my EKG along with the dizziness. I was admitted to the hospital and was kept there for 4 days. While at the hospital, the doctors ordered what seemed like every test known to man. I was released without a diagnosis or any real answers for my symptoms. Due to not having health insurance in the state yet, I had to brush off the follow up appointments with the neurologist and cardiologist.
In 2010, I began having high levels of anxiety again only this time I realized I was experiencing panic attacks. My doctor ran some tests and found that I was severely Vitamin D and B12 deficient. I started taking supplements and also began a nutritional regimen with a dietician who also gave me some stress management exercises. I was feeling better on the diet and the supplements but still suffered with panic and anxiety from time to time. I was prescribed Xanax but the effects were too short lived. I was later put on a different anxiety medication when I was diagnosed with anxiety disorder after seeing a psychiatrist. At the end of that year, my family and I moved into our new home. We had settled into the city where my husband found work. After the loss of our two beloved pets and the typical new homeowner stressors, the fatigue spells returned. Thinking it was depression, as nothing physical checked out, I started working with a therapist. Slowly but surely, it seemed I was recovering my health and well being over that year. I was taking yoga classes 2-3 times a week, and emotionally and physically felt the best I had in years.
In early 2011, I had what I thought was a possible miscarriage. My menses thereafter became unpredictable. I continued yoga classes and even started taking a photography class. However, by early May of that year, I had started to feel episodes of pain and weakness. I couldn’t stand or walk for more than five to ten minutes on some days without deep throbbing pain behind my knees. I was in a state of constant malaise by the end of the following month and almost couldn’t complete my last big school assignment. I was suffering terrible body aches, severe insomnia, body weakness and felt as if my mind was detached from everything around me. My primary doctor said it was most likely depression even though my therapist agreed I appeared pale and sickly. My health continued to deteriorate over the remaining week. I was taken to the hospital one evening and was admitted for severe anemia. I was two units low and required a blood transfusion. The days and weeks following my release from the hospital, I began having extreme light & sound sensitivity, panic and anxiety attacks, nightmares, worsened insomnia, restlessness, diminished appetite, headaches, body pain, and weakness. I was tested for many things that could have caused the anemia and the symptoms but left once again without any real answers. I started receiving weekly B12 injections through my doctor’s office and slowly I began to feel a little more like my old self. However, every couple of months, like clockwork, I would be bed or couch ridden for a week with debilitating fatigue and body aches. That’s when a friend/ yoga instructor with Lyme encouraged me to get the Western Blot test. My primary doctor denied I needed the test and brushed off my symptoms with the classic “It’s all in your head.”
After yet another year of mystery symptoms and doctors who seemed to think I was somehow causing my ailments, I had finally reached my breaking point. It was Halloween night of 2013 when I began noticing strange fluid retention and swelling while trick or treating with my daughter. I became more and more uncomfortable with every step. The next day, I was screaming in excruciating pain from head to toe. I couldn’t walk or barely get up the first week. The pain went on for three weeks and then slowly began to dissipate. It was after that episode, that I finally took the advice from some friends and called a local naturopathic doctor who was known for diagnosing hard to find illnesses. I was discouraged and fed up with regular physicians telling me it was depression.
Upon starting my journey with this new naturopathic doctor, I felt as if for the first time since my symptoms began, someone was actually listening. When my Western Blot test results came back negative, showing only one band as positive, my doctor diagnosed me clinically with Lyme Disease based on my history of symptoms. It was clear when I had my first Herxheimer die-off reaction during treatment that his diagnosis was correct. It was confirmed a few months later with an IgeneX test, that I did in fact have Lyme Disease and an infection with Anaplasmosis. I also tested positive for two MTHFR gene mutations which make methylation, medication and detoxing very difficult for patients.
During the course of this past year while being treated for Lyme & Co’s, I have been treated with both oral antibiotics and with natural/ holistic products. So far, I have been most successful with more natural methods, like sticking to a Paleo diet, avoiding Lyme trigger foods such as dairy, gluten, sugar, yeast and GMO’s, eating organic, taking a good probiotic, detoxing methods and doing the Cowden protocol. I have found that for myself, natural methods are far less harsh on my body, thus much less harsh on my family and also allow me a little more time on my feet and less time being bed ridden.
The journey to healing from Lyme Disease can be a very bumpy and unpredictable road. It’s very easy to get discouraged while treating and trying to heal as there isn’t any set path for anyone. Many times I feel more like a test subject than a human. There are definitely times I’ve thought that I could be stuck living with this disease forever. I’ve found that being a part of a close knit Lyme community on social networks to be very helpful and very supportive, especially since what we’re going through can be so misunderstood by our family, caretakers and remaining friends. This disease has taught me more about myself and life than anything else I’ve ever experienced. It’s taught me that I am stronger than I ever thought I was, that I’m resilient and that I’m a fighter. It’s showed me the people who truly care and the ones that never will. It’s taught me to appreciate the good days and to savor every special moment. And even though there is still rough terrain ahead, hard days/ weeks and moments filled with fear, I will keep on trudging up this rugged mountain until one day, I may reach the top again, only this time, with a whole new view.