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4 years ago while on vacation I got bit by a bug. Shortly after the trip I got severely sick, but the doctors could not figure out what was wrong with me. The symptoms didn't go away completely but the doctors did not know what was wrong with me. As each year went by I started to get more and more symptoms. This year I finally had a doctor tell me I had symptoms of lyme disease. I quickly arranged to get it tested, and through ILADS found a lyme disease specialist. After going through a bunch of tests it is obvious now I do have lyme diseases, as well as 3 co-diseases. I have chronic lyme disease, and have just recently started treatment. After 4 years of misdiagnosis I finally have an answer. I really hope they find a cure soon. I am interested in becoming an ILADS social ambassador because I want to help raise awareness, by sending links to friends, on fb, twitter, etc. I think awareness and getting support to find a cure for lyme disease is so important.
I am interested in becoming an ILADS Social Ambassador because I believe so many of us already are. We work together through the social medias to raise awareness. We may be just passing the same information back and forth to each other but it's all worth it when it's intercepted by just one new patient who may have been struggling for weeks or even years, not knowing what was wrong with them until one of our posts crosses their path.I had been busy myself taking care of my very sick 18 year old son. He had been struggling for some time to get treatment when I knew it was Lyme but I couldn't get a doctor in KY to listen to me. After finally finding an excellent LLMD, I was so busy in caring for him that I neglected myself and was bit in 2012. It is what brought me down. It turns out that I actually had it most of my life and had no idea. I had odd illnesses and surgeries, never connecting them to Lyme until I became educated about Lyme and talked to our LLMD. We are pretty sure I gave it to my kids as well. I cannot sit idly by and watch what was happening around us. I am now the founder of the Kentucky Lyme Disease Association. Find us on Facebook and on our website.
Fighting for awareness for late stage Lyme disease in the Belgian government together with senator Nele Lijnen, since my youngest son has been diagnosed with borrelia and bartonella. He had to find a doctor on the internet who could diagnose him correctly, after visiting so many specialists' en doctors and being misdiagnosed for 3 years. Patients shouldn't have to learn the "hard way". As a medical assistant, and having contact with other members of Ilads, I keep on spreading the word on Facebook, but I'm also helping to convince the doctors to learn about the guidelines from Ilads for the treatment of Lyme disease. Member of meetings from “Chronimed Belgium”, Informal group of medical professionals, Improving diagnostic and treatment for: Member of the Association www.timeforlyme.eu Lyme borreliosis Tick-borne diseases Chronic diseases Cold infections
Time For Lyme BE-NL is an new association in Belgium that wants to bring awareness about late stage Lyme by organising different projects, and by spreading the word in the media with correct information, refering to the guidlines of Ilads.
I am currently facing my third battle with Lyme disease (LD) along with two co-infections. My first diagnosis was in college, second was Lyme Meningitis in August of 2012 and third was a new onset of LD with associated Bannwarth's Syndrome in July of 2013. In both recent cases, I've had to fight, along with Lyme-Literate Physicians to get the appropriate, individualized care that I've needed, which has included a PICC line with ceftriaxone after failed attempts with oral doxycycline. After poor experiences with two hospitals and their Infectious Disease staff, I am left with a passion to serve the community as an educator and an advocate. There is a huge need for the truth to be made known about this dangerous epidemic. The CDC & IDSA are attempting to limit individualized, patient care, preventing those battling Lyme Disease from receiving treatment based on their symptoms, as with any other infectious diease or illness. Experience has shown me that if I had been left in the hands of Infectious Disease alone, I could now be dead. My children are ages 11, 9 & 6. All three have LD and our physician highly suspects it was passed through the placenta and/or breastfeeding. My 9 year old is also battling three co-infections from a tick bite in May of 2013. I am honored to be serving for ILADS as a Social Ambassador and hope to do what I can to help educate and advocate in my community and beyond.
Thank you for visiting! I have been ill since 2003 when the night sweats started and then reoccurred in March 2010 the night of my Lithotripsy Surgery. I found out it was because they gave me an IV antibiotic and I reacted. I was so sick that I made a list of many things to be tested for and Lyme disease was one of them. My CDC positive results came back in June 2010 and I immediately went to a Lyme Support Group meeting that same weekend and I learned about Lyme Literate Medical Doctors (LLMD) and I went to see one ASAP and started the correct treatment. My LLMD did more testing and I found out there were many coinfections too. I have continued to fight the medical health system and I have had a few victories. I also have 6 support groups on Facebook (please join me there) where I serve the Armed Forces/Military community, the Lyme Induced Autism community, various other communities and I am always willing to learn more. Please friend request me on Facebook and ask about my groups. I want to continue to help others in any way I can. YOU ARE NOT ALONE. We are all in this together. My facebook name is Robin Virginia - please friend request me. Also join my Lyme Disease - Important Information facebook Page for lots of info on lyme disease. The link: https://www.facebook.com/Lyme-Disease-Important-Information-380550648779176/
Years of misdiagnosis left me paralyzed and unable to speak in June of 2006. Thanks to Lyme specialists and my family who helped me regain quality of life I've gone from patient to advocate and now legislative advocate. Actively working in MA to bring the change we need and am a Governor appointed member of the MA Lyme Commission. I am founder of S.L.A.M. (Sturbridge Lyme Awareness of MA) and the "Ribbons Across America" campaign you may have heard about. It's time we talk about Lyme and it's time we insist on the care we deserve. Education and awareness are key. When I know my children have access to their meds without having to self pay I will rest. Until then there's work to be done. Together we can make a difference!
I was diagnosed with Lyme in October 2013. I have been through numerous antibiotic treatments, IV treatments, HBOT, etc. I am currently trying bee venom therapy. I am very passionate about bringing awareness to Lyme and Co-infections so other people don\'t end up with this horrible disease. I also would like to see laws changed where Lyme patients can get coverage for more treatment options. I also would like to see more money go for research for better testing and treatments. I have participated in many online Lyme campaigns but I want to do more. I am starting a website called Brenda\'s Weekly Buzz and I will blog about other things besides Lyme but Lyme will be my focus. I want to create a toolkit for Lyme patients especially newly diagnosed and give them a list of books, websites, information on Lyme, tools to track medicines and supplements, and basic skills for talking with their LLMD and anything else I can think of to help. I listed my current Facebook page but I will also have one for Brenda\'s Weekly Buzz. You can read my letter that was handed out at the protest in Atlanta it is on my website. http://www.brendasweeklybuzz.com/topics/home-2/lyme-disease/ Thanks for your consideration.
Almost three years ago I was bitten by an infected deer tick. Approximately three months later I began sleeping excessively. At times I would sleep for well over 36 hours. I did see a doctor but was told that I had Chronic Fatigue Syndrome. Occasionally I would have symptoms of the flu but would never actually have it altogether. I didn't know what to make of this but it would all fall in line within a matter of time. I noticed a small circular mark above my left knee. It was tiny, it wasn't as big as 1/4 the size of a dime. I had no knowledge of the 'bullseye' prior to this... I ignored it. Within weeks I felt as if I had been skinned alive. The intense, all-over body pain was incredulous and landed me back at the doctors door. This time, I was diagnosed with Fybromyalgia. Shortly after that I began having intense joint pain and the inability to use my fingers. I set up an appointment with a rheumatologist. Once my blood work came back, the rheumatologist explained that I did NOT have arthritis... it was Lyme disease and had spread to my joints. Welcome to my world. I am 42 years old and have long-suffered with back and hip pain related to a botched spinal tap in 1999 and now arthritis in my spine. Just a few years ago I was on the mend as I began having facet rhizotomy procedures that gave me long-term pain relief. I was able to immediately find an LLMD however, the Lyme has burrowed down deep into my joints and traditional long-term oral antibiotic treatment only keeps it at bay for a few months at a time.
I was diagnosed with chronic neurologic lyme disease seven year ago, after being misdiagnosed for two years. I suffered from a frozen neck, a frozen shoulder, terrible neurologic pain, psychosis, anxiety, a hyper sense of smell linked to an uncontrollable fear response, memory loss, confusion, fatigue, joint pain . . . One of the cruelest symptoms -- as a writer, I was unable to write. As a reader, I was unable to read. I could barely make a sentence, and forgot what I had done three minutes before. It's terrifying to have a doctor tell you nothing is wrong, to be told the long list of painful and bizarre symptoms are all in your head. It's been a long and often despairing journey for both me and my husband. The great news is that under the care of a compassionate ILADS physician I am healing. I'm so heartened by the increase in awareness campaigns, by the push for adequate funding for research in Congress, by the work ILADS and other organizations are doing to train physicians, conduct research, spread the word about this devastating disease, by an article published in the New Yorker magazine. The word is getting out! I live in a rural area of Idaho, where more and more people are being diagnosed with LD. I want to do what I can to prevent another person from falling ill from a tick-borne disease. Please help me be part of the cure. Thank you.