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When I was 3 years old, I went to the Hamptons to visit friends. When I got back home, I developed a rash and went to the doctor, who diagnosed me with lyme and gave me 2 weeks of antibiotics. Shortly after, I started experiencing joint pain, headaches, fatigue, etc. My doctor brushed off the joint pain, saying I was growing and it was natural, the headaches and fatigue were brushed off as well. It got bad at the age of 12, when I couldn't breathe properly going up hills, and had to use crutches to walk around because of my joints. I also couldn't sleep and had random fevers that would come and go. The next year, I would sleep for 20-24 hours at a time. School was out of the question, my mom was beyond frustrated, and I was starting to give up on finding an answer. about one year later, in the fall of 2012, I entered 9th grade in Brooklyn Tech and I started getting worse, luckily, I was tested for lyme disease and the test came back positive. My doctor gave me 3 weeks of oral antibiotics which wasn't enough. My mom and I did some research and found out how serious lyme actually is, and found an LLMD. I spent 4 months on oral antibiotics with no results. I am now on iv antibiotics and hope to get better soon.
I was bitten 30 years ago and since then have been through a lot. I have been disabled and housebound for 4 years. Lyme has now caused many new illnesses and issues such as lupus, CFS, spinal issues...etc. I have been treating with oral and IV abx, injections, protocols and rife for years and so far no progress. I want to spread awareness so nobody else has to suffer the way us with lyme suffer and protect people from ticks and spread the truth about lyme.
Diagnosed with MS only to find I have Chronic Lyme Disease.
Diagnosed with incurable Chronic Venous Insufficiency (Nov 2012) and Erythromelalgia (Feb 14). Then, after numerous tests by rheumatologists, neurologists, haemotologists and cardiologists, was diagnosed with Lyme in Feb 14. IgeneX tests showed borrelia garinii and impacts to central nervous system and arthritis. I know I was bitten by a tick in Adelaide South Australia (3 erythema migrans rashes in late 2012), but do not know where the tick originated. I now am severely disabled, medically retired (CVI and EM alone was enough). Am following Burrascano Guideleines and lcky enough to have a supportive LLMD in Adelaide. All my body is impacted and likely to have pacemaker installed in next few months. I would like rto become an ambassador to raise awareness and ensure proper treatment and support for patients and doctors is available worldwide.
At the age of nine I began having symptoms of severe headaches and neck pain, along with swollen painful knees. Doctors told my mother I had psychological problems or was faking it. I quickly learned not to complain about physical symptoms. At the age of 17 I woke up one morning covered in a full body, lacy rash. I had severe joint pain and flu like symptoms. Doctors said it was fifths disease. The symptoms kept reoccurring. The next summer I had to leave my job at a summer camp due to illness and severe fatigue. I began the search to what was wrong. After years of tests and doctor visits, it was determined I had depression and fybromyalgia. I stopped seeking help and learned to live with my symptoms. Healthy life style, exercise, and cutting gluten out of my diet helped me feel better. I earned my 3rd degree black belt, opened a martial arts school and had a family. Last summer, my symptoms became worse. I would lose the ability to use my fingers, and then my arms. My joint pain worsened, I had optic neurosis, I had seizures, and finally I lost the ability to walk. After months of doctors visits I was finally diagnosed with lyme and have started treatment.
After a year of misdiagnoses, accusations, disbelief, and court battles, I was finally diagnosed with Lyme, Babesiosis, and Bartonella by Dr. Charles Ray Jones. I was unable to attend school for an entire year, and my diagnosis did not change the accusations that I was an avoidant, defiant teenager. I saw countless specialists and mental health counselors, one of whom accused my mother of abuse for keeping me out of school. I have since been recovering steadily, completed the missed school with straight A's, and attend a wonderful independent high school about to enter my senior year. I am stunned by the lack of education and information my family and I faced with this illness. I am determined to educate medical and educational professionals about my experience- which did not present itself with the usual Lyme symptoms- and the devastating effects of not listening to students and patients when they try to explain their symptoms. My mother is a teacher who has since recognized students who presented their symptoms like me, and was able to help other families get help for their children who were being mislabeled, as well. It is important to speak out, share our story, and change the stigma, increase awareness, and open minds.
I started having my first symptom in 2004, age 21. I was right out of collge and just beginning my first year asst teaching. First symptoms were massive head pain and jaw pain. 10 years of dozens of specialists, every yr would be another symptom another "diagnosis", another prescription med that I would have to take which of course never helped. This year I went to the ER twice so finally I decided to see a good friend who ran every test she possibly could. She saw that my ELISA test came back positive, but western blot came back negative. She then prompted me to go to a LLMD, Waiting for my appt I went to my PCP, who at this point stopped looking me in the eye when I came to her with symptoms and would just hand me referrals to psychiatrists. I told her that I think I have lyme, she immediately said that I "probably don't have it, and treatment for Lyme is so severe I wouldn't want to bother". (I stopped going to her THAT day). I took a culture test through my LLMD and it came back positive in a week and a half. I am now on IV treatment and have been for a month now. I am now dedicated in spreading awareness and wanting to educate everyone around me of this increasing epidemic.
After years of dealing with chronic Lyme disease I am finally well. I was unable to treat with antibiotics (allergic to them), so went the natural route. It was difficult and lengthy, and there were times I felt sure I would die, and certainly times I wanted to die. It became a journey of healing on the spiritual and physical levels, and now I dedicate my time to supporting others in the Lyme community. I have closed my web development business to accommodate my commitment. I am in full support of seeing the medical community better educated, not only in diagnosing the tick-borne diseases, but also in learning to treat the whole person, not just the body (by putting more and more pharmaceuticals in it). I am also in full support of seeing accurate testing being developed and more comprehensive treatment programs that actually support whole healing.
I live in a great, smaller community of about 25,000 in a severe risk area for Lyme. When I first got sick, I couldn't believe it was Lyme -- or how easily all the other doctors missed it. My daughter had it as well (she was 16 at the time). She also has a Bartonella co-infection. After getting a bit better, I checked for a Lyme support group in the area. I liked the ones online, but I also wanted something a bit closer. Since there wasn't one yet, I talked to the Minnesota Lyme Association to see if I could set up a chapter in my city. Then I saw this great opportunity! My first goal has always been getting the local interest up via information. With these awesome tools, and more down time with my new job, I can help ILADS as well as spread the word locally. Thank you, ILADS--and all of YOU out there supporting the Lyme cause, for all you do.
Hello! I'm Ashley, from Texas. My hope is to face Lyme, fund Lyme, fight Lyme and find the cure. My fight with Lyme began with lab orders May 22nd, four days before my 33rd birthday. After seeing doctors and having procedures done, treating symptoms for 5 years has driven me to find the source and treat the source. I am a single Mom of an adorable and adventurous nearly 6 year old little fella. His labs came back positive at the end of September, further fueling my drive. I've met so many others with Lyme and so many heartbreaking tales from people from Florida, Illinois, Texas, California, Arizona, Australia, Denmark and more. My hope is for the face of this disease to be shown. For someone to give definitive, evidence based answers for the patients. As patients, we have a responsibility to fight, for future generations. This disease is devastating in more ways than most people understand and we have our voices to share our experiences. I'll go where we need to go. I'll search and search until I find the cure. The only thing I hope for is to wake up tomorrow and continue to press on. Please help raise funds for research efforts. It's time we step up and stop this beast.