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In October 2010 I became very sick with unpredictable episodes of weakness where I could not walk without assistance, had difficulty speaking, and generally could not move without great effort. ER visits, multiple doctors and specialists including some at Mayo Clinic could not explain these episodes. Over nine months I was told there was nothing really wrong with me despite many additional troubling symptoms and I was just depressed. I could no longer work and all I was left with was a diagnosis of fibromyalgia. Over the next three years I saw more doctors and I accumulated additional diagnoses. In early 2015 I saw a physical therapist who had another patient with similar weakness episodes who was found to have Lyme. I tested through IGeneX and then found an LLMD who did additional tests which confirmed I have Lyme, Ehrlichiosis, Anaplasmosis and also the criteria for Chronic Inflammatory Response Syndrome (CIRS). I am currently going through treatment. I am very disappointed in the inadequacies of Lyme tests, lack of knowledgeable physicians, and the difficulties of accessing and paying for treatment, specifically for those with late-stage or chronic Lyme. I feel compelled to help educate and raise awareness about Lyme Disease.
Diagnosed with Lyme in March 2016. Not really sure when I got possibly 3 years ago. Going to start treatment with an LLMD and a neuropath in coming months. I am interested because I want to be a leader in research and be a voice for someone who can\'t or doesn\'t have one. I\'m so passionate about Lyme and helping to spread awareness.
I was diagnosed with lyme disease when I was 9 years old. I went to the doctor a few times before I was diagnosed correctly (Doctor said just a bug bite because I did NOT have a bulls eye rash and sent me home twice). By the time i was put on anti-biotics i couldn't bend any joint at all and had to be rushed to the hospital. Since then I have had many issues (severe pain and inflammation in all joints). I finally got into a Lyme specialist June 2015. My blood culture came back positive showing active lyme disease (it never left because I wasn't on anti-biotics long enough). FINALLY I am being treated for "chronic" Lyme disease. Praying and hoping my life gets less revolved around PAIN. I want people to realize how many others are affected. I hope with spreading the word and training more Lyme literate doctor's correct treatment/timely diagnosis will prevent others from suffering.
My younger brother was diagnosed with Lyme around 7 years ago and I was driving to our home town often to see him because he was very ill. i moved back home to be closer and became an RN. I was bit by a tick that year and treated immediately when my dr saw a bullseye type rash on my leg. I met my husband who turns out had been sick for year with no diagnosis and my brother told him to get tested for Lyme. He tested positive and has had no relief with his treatment. As a nurse, I have seen people dying from an ALS diagnosis only to find they are also positive for Lyme. I feel like I need to be a part of the Lyme awareness movement and I hope to be a nurse specializing in it to help those in need.
In 1994, I became severely ill with what I thought was the flu. Four years later, after being in a lot of pain, my Western Blot came back positive for Lyme. I was one of the lucky ones and started on antibiotics. To this day, I still have pain and fatigue, but I\\\\\\\'ve been able to work. Today, my husband has a Lyme rash after a tick bite and the local doctor thinks it\\\\\\\'s cellulitis. Hello! Tick bite! I\\\\\\\'m outraged at the ignorance of the medical community and their fear to prescribe anything more than 2 weeks of antibiotics. As I write this, I am searching for a Lyme-literate doctor to help my husband. I\\\\\\\'ll do whatever I can to help spread the word and raise awareness and get physicians educated. I helped start the Texas Lyme Disease Association years ago and then I backed away to rest. Now, I\\\\\\\'m up in arms again willing to do whatever it takes!
I am highly interested in learning about Lyme disease as I was diagnosed with B.burgdorferi infection last summer. While playing with my friends in a little wooded area along a lake side, I did not realize that a simple rash will make me suffer and will put me in bed for two months. The experience was terrible. High fever, chills and body ache paralyzed my life for two complete months and my whole summer vacation was spent in bed. I am glad that my infection was detected early enough to be treated with Doxycycline and I am back to my studies and my normal life. But, as a student of Biology and having a dream to be physician some day, I have decided to study this disease and find a cure for it so that no teenager has to be afraid of going out in the woods and suffer from Lyme. I approached a Microbiology Professor at a local college in Worcester where I used zebrafish model to study the effect of B. burgdorferi lysates on the growth of Central Nervous System of Zebrafish embryos. I got interesting results where I learned that the bacterial remains or lysates have the potential to prevent myelin formation and prevent neuronal growth in zebrafish model. I also found that Taurine can reduce this toxic effects
Everyday the impact of chronic Lyme touches me. People contact me from all over the world with the same \\\\\\\"unique\\\\\\\" story of their Lyme journey. I am in awe of their persistence and strength under terrible adversity. I salute you, Lyme patients, whereever you are.
I was bit in 2006, and pulled the tick off my groin. I never got a rash, so my Dr told me I was fine...and so my saga began. I am in the healthcare field, and my husband is on staff at a local hospital, so the doctors we saw treated us courteously..but I suspect many thought my symptoms were due to stress, etc. It has been a long road. I have tried to educate many of the physicians I have seen with scientific articles, as well as watching my progression to wellness with the use of high dose antibiotics. I have \\\\\\\"converted\\\\\\\" a few. I want to become an ILADS Social Ambassador as I feel much more education is needed, as well as research. I\\\\\\\'m outgoing and vocal, and comfortable speaking to those in the medical field.
I have Chronic Lyme, undiagnosed for approx 10 years. I have struggled with fatigue, joint pain, muscle pain, brain fog, memory loss and just a feeling of lack luster. I am still struggling to find a treatment path. Through the years I have been to see many Doctors. There are no Lyme literate Doctors in my area. I am hoping to make some good connections of this site and find a path to getting my health and life back.
About five years ago I experienced the scariest month of my life. All in a matter of weeks, I couldn't move my neck, couldn't hold my one year old son, and couldn't remember what toothbrush was mine. For the next two years, I was hospitalized for five days, had three lumber punctures and two PICC lines. Lyme disease stole a part of my life that I cannot get back. Even though my symptoms are mild these days, I live in constant fear...fear of relapse, fear of my children getting bit, fear of grass... My only recourse is to spread the word about this horrific disease and pray that someone will listen.