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Lyme Disease Stories

"Initially, I was drawn to the triangle and weight of this piece after graduating from Springfield College, where the inverted triangle is a map for the spirit, mind and body. Learning more about A.W.A.R.E Causes bringing hidden / invisible diagnoses into the light, where something like a beautiful necklace to spark a conversation to help educate the public on the rate of misdiagnosed Lyme cases and severity of illness that Lyme can escalate to. I have spent 27 years fighting for a correct diagnosis, and within the last year, I’ve been fighting for my life as a result of this diagnosis. My significant other, high school sweetheart and full-time caregiver Eddie, and I have been traveling across the country and even outside of the country to receive life-saving treatment, and fighting misconceptions about my illness along the way. We have connected with countless other invisible illness warriors along the way, joining hands in the fight much bigger than ourselves. A.W.A.R.E Causes is great for us as we are also so focused on bringing awareness to other Lyme Disease patients that are suffering in the silence. Causes like A.W.A.R.E help bring people like us out of the darkness and into the light in hopes for better treatment and care. We have to educate our friends, families, communities, our doctors and other medical providers in hopes for better diagnostic testing in desperation for early identification of the correct various bacterial infections. Thank you to A.W.A.R.E Causes for your strength, passion and bravery in creating a safe space to share stories like mine." @lymekhaleesi


“This is my son, Case Ragon. He is an amazing, loving, funny four year old. Case was diagnosed with Lyme disease seven months ago. Pediatric Lyme can look a lot different than adult or chronic Lyme. It presents itself with speech delays, development delays, behavorial outbursts, anxiety, OCD, and impulsivity. After the tests showed a positive result for Borrelia (Lyme), Babesia, and Bartonella (co infections) we immediately sought treatment from an LLMD (Lyme literate doctor) in Denver. Case is currently on month five of treatment. A few months later, after further testing and research I discovered that I also had Lyme and co infections and had passed it to Case in my womb during pregnancy; congenially. My hope in sharing our story is that other families and children will know that they are not alone and that the road is tough but there are resources to help begin recovery. Case is my warrior and my strength. Lyme does not define him it simply makes him stronger.” @canarysheart


“I had chronic Lyme disease undiagnosed for over 20 years. It wreaked havoc on my body and caused unimaginable pain. Eventually I got so sick that my liver became very diseased and we finally found the root cause, Lyme. If you get bit by a tick get treated immediately. If they don't want to treat you, find someone who will. You have to be persistent and know the symptoms: joint pain, fever, headaches, digestive problems, bells palsy, chronic fatigue and infections, autoimmune disease and more. I've fought so hard for my life for the past 10 years and am finally coming closer to a place of healing. Having an online community of support has been so helpful. I can only hope to be there for others the way they have been for me. My A.W.A.R.E. necklace represents hope for healing from Lyme and my support for fellow sufferers.” @dresswellbewell


“Until April 2017 the word “Lyme” only meant a “green citrus fruit” to me. I’d heard of Lyme disease, though my knowledge of what it entailed was minimal. After a lifetime of misdiagnosis and a handful of seemingly unrelated issues I was struggling to accept my ACTUAL diagnosis - late stage Lyme. Sure, all my symptoms fit perfectly. But how did I have an illness I knew nothing about? How can I finally accept what I’ve known in my gut all along, that the problem was not in fact “in my head” That’s the problem with Lyme disease, it’s known as the great imitator. It creates chaos in your body and can effect all body systems. Symptoms change. Numerous medications, treatments, specialists - nothing found, nothing fixed. This makes diagnosis very challenging and patients are treated as though they are crazy. My healing journey has looked different over the past year and a half. I’m so grateful that I have been able to treat myself, because the cost of this disease is crushing many families. So many people cannot afford the expenses of Lyme. As a young family we couldn’t either - but we have been blessed with help from others. I wear my Aware necklace proudly. I don’t want to be known for having Lyme disease, but people need to know the severity of it. If I had awareness earlier, I may have been able to start my healing journey sooner.” @caymanferg



“I was diagnosed with Lyme disease two years ago. It wasn’t until this year when I found out I also have two co-infections, babesia and bartonella. In the months before I was diagnosed, no doctor took me seriously. They all believed I was crazy and prescribed me anxiety pill after anxiety pill, misdiagnosing my seizures as panic attacks. My neuro symptoms were so bad that at times I couldn’t walk, stand, or even move my head... I was constantly on the verge of blacking out. When I suspected Lyme, I had to force my doctor to test me for it. He was shocked when the results came back positive; he told me this personally. Soon after, he ended up diagnosing several of his other patients with Lyme, too. Since my diagnosis, I’ve been out of school, had to quit my job, completely changed my diet, and am currently waiting to heal with my treatment. It’s such a long, painful process to endure. This is why spreading awareness is so important! I wish I had someone two years ago to tell me what I know now. If I had a doctor or friend aware of Lyme disease symptoms in the beginning of all of this, I would have been cured. Now, I don’t know how long it will take to be back to my normal self again.” @augustlyme


“I was diagnosed with chronic Lyme disease almost 2.5 years ago and since then, my whole life has changed. I went from traveling the world, scuba diving, always being on the go, to being homebound, rarely leaving the house for anything other than doctor’s appointments and treatments. It has been a rollercoaster - not only because of Lyme, but also the cascade of other problems it caused, the latest being autoimmune encephalitis. I rarely see my friends and family. I cannot work. Every day, I live in a haze of brain fog, with chronic pain and severe, debilitating fatigue. One of the reasons I started my blog is to raise awareness. Unfortunately, chronic Lyme disease is not recognized. As a result, funding is lacking, patients are often misdiagnosed, mistreated, and left to fend for themselves, with huge out of pocket expenses. This is why I think awareness is so important. I was so excited to receive my green @awarecauses necklace for Lyme disease. By wearing this, I can spark conversations and raise more awareness for a cause that is close to my heart and needs more recognition.” @linnealifeandlyme 


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