My Lyme Story
A lot of Lyme patients don’t know when they contracted Lyme Disease. This infection, and its co-infections, are contracted mostly from a tick bite. The tell-tale target rash only happens in about 10% of patients, and not everyone is aware of a tick bite. Those nymphs (baby ticks) can be the size of a poppy seed. I never had a target-rash and my own symptoms added up over the years, instead of being a sudden onset fever and illness. This has made me look back over my life several times to try to find when I contracted this series of infections. I still don’t know after all these years.
When I was five my family and I were hiking in the Saskatchewan prairies. It was the early 80’s and Lyme Disease was “new” to the world. My dad had the foresight to recommend that we all take precautions against ticks, even though the infection was “only in New York”. We thought the word “Lyme” was funny, and I remember laughing with my brother as he joked about a “lime green” infection, like it would turn you into The Hulk and give you superpowers. After this hike we did tick checks, and my dad lost one in my hair. We were standing in the bathroom, and he saw it on my hair line, it crawled upwards and was camouflaged by my brown hair. We didn’t find it until the next day when I was in bed and it was crawling across my pillow. My dad had left the hall light on for me in case there was any monsters under the bed, and I screamed when saw that tick lifting its little legs, wiggling across MY pillow, the backlight of the hall light making it seem so much bigger than it was. I was a tom boy as a child, and fascinated with bugs. I used to collect them in jars and watch them move around. Even years before “A Bugs Life” came out, I thought they were cute. I have never been afraid of spiders, and actually have respect for the mosquito eating arachnid cousins of my nemesis the tick. But this pillow crawling creature left me absolutely terrified of ticks even though I didn’t yet understand the implications of a tick bite, nor what these small creatures would do to my life.
My other known tick bite was when I was hired by a family friend to do some work on their cabin at a lake in Saskatchewan. I lasted an hour in the tall grass. I had been warned it was tick season, but I was 16 and invincible, so didn’t pay attention. We never counted the amount of ticks I had on my body after this hour, but I suspect over 50. When I realized they were all over me, having crawled up my pant leg to my upper body, I was hysterical. My friend helped me brush and pull them off as I stripped to my underwear in the cabin. One had its head burrowed in my stomach, and I grabbed it and yanked. For those with Lyme Disease, having over 50 ticks crawling on you is the stuff of nightmares. Fourteen years later, when I was in the office of the doctor who was about to diagnose me with Lyme Disease, he asked if I had ever been bitten by a tick. I was absolutely exhausted, and I couldn’t think straight even on a good day. This left me pretty emotional, and I suddenly burst into tears as I remembered my dad’s warning about Lyme Disease when I was five. And the creepy crawling ticks, who, even now, make me itchy and squirmy to think about.
It was 14 years after this last incident that I was finally diagnosed with Lyme disease. When I was 21 I realized something was wrong after a three-week trip to Vietnam. I can’t say I was well before that, but there is a certain amount of unwellness I was able to cope with, and a certain line when I just knew something was wrong. I already had insomnia, anxiety, depression, tendonitis, back pain, and headaches. There are so many theories as to why this trip became my turning point into a downward spiral into chronic illness. I suddenly had an overwhelming fatigue, and digestion problems for the first time in my life. Some said candida, some said a parasite, some said the vaccinations I received, some now say because I was taking an antimalarial on this trip, unknowingly treating one of the Lyme co-infections called babesia. I gained some health after treating a parasite. I gained some health on a strict diet. I gained some health after quitting alcohol. But I still wasn’t “normal.”
It would be another nine years before I was in that doctor’s office, crying over my past traumatic tick bites. Even though I live in Canada with socialized health care, I had spent thirty thousand dollars on tests, and visiting different practitioners. I was called an “anomaly”, “crazy” and told “you just need a boyfriend.” I was also fired by doctors a few times, and this was before I said the word “Lyme” to anyone. When I was finally handed my iGenex test, that was positive for the borellia infection, or Lyme Disease, I actually felt relief. I didn’t know anything about what the years to come would hold, but now, after 14 years of illness, and nine years of searching, I had an answer and a direction to put my energy towards. I knew what was wrong. I wasn’t crazy, or an anomaly. I had a series of infections that could be treated.
At the time of diagnosis my symptoms were: Fibromyalgia, persistent swollen glands, sore throat, sinus congestion, chills and fevers, sore soles of feet esp. in the AM, plantar fasciitis, tendonitis, Morton’s neuroma, joint pain and swelling, carpal tunnel syndrome, TMJ, neck creaks and cracks, neck stiffness, neck pain, unexplained back pain, muscle pain and cramping, obvious muscle weakness, twitching of all muscles, shin splints, seizure-like symptoms (no control of body or muscles), burning swollen lips, swollen tongue, edema, confusion, difficulty thinking, difficulty with concentration (reading, problem absorbing new information, word search, name block, typing) forgetfulness, poor short term memory, poor attention (ADHD), disorientation (getting lost, going to wrong places), speech errors (wrong word, misspeaking), “messy syndrome” (ability to function at work, but not at home), mood swings, irritability, depression, anxiety, social anxiety, panic attacks, tremors, headaches, head congestion, light sensitivity, sound sensitivity, sensitivity to heat, vision (double, blurry, floaters), dry eyes, ear pain, hearing (buzzing, ringing, decreased hearing), increased motion sickness, vertigo, spinning, off balance, “tippy” feeling, light-headedness, blue “spots” in vision, unavoidable need to sit or lie, tingling, numbness, aching, burning or stabbing sensations, shooting pains, skin hypersensitivity, acne, psoriasis, eczema, rashes, dental pain, periodontal disease, poor recovery from surgery and injury, fatigue, poor stamina, extreme fatigue with too much activity, vertigo and heaviness with too little activity, insomnia, fractioned sleep, napping during the day, unexplained weight gain (20lbs in one month), unexplained hair loss, pain in genital area, unexplained menstrual irregularity, breast pain, fibrocystic breasts, loss of libido, PMS, irritable bladder, oily urine, nausea, vomiting, dry retching, heartburn, stomach pain, bloating, constipation, diarrhea, abdominal pain, abdominal cramps, lack of appetite, skin tags, stretch marks, red papules, heart palpitations and skipped beats, chest wall pain, sore ribs, breathlessness, “air hunger”, unexplained chronic cough, ”burning” breath, night sweats, day sweats, exaggerated symptoms or worse hangover from alcohol, addictions, multiple food allergies, multiple chemical sensitivies, symptoms flare at full moon, all conventional testing indication that I was “healthy”.
My Lyme story doesn’t end with the diagnosis. I believe it actually starts there. There is a common misconception, as we are shrouded by politics and myths, that a diagnosis ends our searching. It doesn’t. Most of us are still searching for the elusive “cure”. And, what breaks my heart the most, is that years later some are still searching for a way to get out of bed. The complexities of this illness stem deeper than an infection in a human body, and represent an illness in our health care system. We are missed, ignored, yelled at, shoved aside and treated like second class citizens.
It is very common when you are chronically fatigued and ill to be told “that’s just the way you are.” Although I never stopped looking for the answer, I also had to continue with my life. I studied Chinese Medicine and Acupuncture in 2003. A friend of mine from school contracted Lyme the year after I was diagnosed. She turned to me one day and asked, “how did you get through school if you felt like this?” Good question. Those who have been there can attest that we just don’t always know how we do it, we just get through by some cosmic guide and will power.
After my diagnosis I was handed three different antibiotics and sent home. I had read that Lyme Disease was “cured” after three weeks of antibiotics, so I started them right away. It actually went against my core beliefs as a Chinese Medicine Doctor to take pharmaceutical medications, but I wanted to finally feel better and thought this would be a quick answer. There was a buzz inside me as I took them for a few weeks. I can’t say if that was the excitement or the major herx reactions I was having. When treating Lyme, we go through detoxing, which can increase our pain and fatigue and other symptoms. I was in so much pain I would lay on my bed crying. I could barely move my legs as they felt so heavy, and my spine was on fire from the neck down. Even as I’m writing this, I realize I can’t give as much detail about this part as I could about the tick bites. I don’t remember a lot of it, and I’m not sure if that’s from some mechanism in my amygdala protecting me, or just the amount of brain fog I had.
In the middle of all that I did a lot of research, and I discovered I wasn’t going to be better after a month of antibiotics. There was the devastating news that it was going to take years. I was lying in bed with one of my new Lyme books on my lap, and it suddenly felt heavy to hold. I had a journey ahead of me, and I had to grin and bear it. I decided the antibiotics weren’t the right choice for me, an intuition that was later proven right after I learned my liver doesn’t process pharmaceuticals properly. I started an herbal protocol and slowly found my way out of the fog. It took me three years before I could exercise again, and I slowly transitioned back into working full time. I started to be able to do the dishes, and help around the house. I was even known to make dinner sometimes, a huge feat when years before I was barely able to walk across the room to get a glass of water. There wasn’t a moment in time where I said, “oh yes, I’m better now.” But there was a slow transition as I peeled off layers of illness and toxicity and finally discovered myself again.
One of the biggest things that gets a health care worker involved in Lyme Disease is personal experience. At the time of my own diagnosis I realized that I was already treating people, who, like me, didn’t know they were infected. I had to get through it all because I had a stronger calling in the world to help these people. I have always been a shy and private person about my illness, but when I got asked to talk about it, I knew I couldn’t say no. Putting my own fears aside, this has lead me to now having my own radio show, with the intent to educate my listeners to empower themselves in their own health journey. My own illness has enabled me to help others out of the depths of their chronic illness, and this is my “lyme green” superpower.
Dr Rebecca Risk, TCMD, R.Ac., S.C. is a Doctor of Traditional Chinese Medicine, and acupuncturist and supplement consultant working out of Calgary, Alberta, Canada since 2006. Her passion lies in helping those with chronic Lyme Disease and chronic illnesses. She has founded Ananta Health, Ananta meaning “infinite” in Sanskrit, and her goal is to give her patients infinite health.