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My husband just got diagnosed with Lyme, 3 weeks after being bitten. We had gone on vacation to the Hamptons, Long Island on the 4th of July 2013. After the trip he started having severe neck pain and fever. After about a week of fever we saw the \"bullseye\" rash on his leg. Since neither one of knew anything about Lyme disease we did not associate this with the fever or neck pain and thought it was just a strange bruise. We went to 3 doctors in Brooklyn, NONE of which knew anything about LYME!!! THanks to Google images we realized what it was and saw an infectious disease specialist who diagnosed him... Basically I\'d like to help raise awareness about this disease any way I can because it\'s CRAZY that there is such a level of ignorance about it in our country and ESPECIALLY on the East cost!!!! Thanks, Irma
When I was 25, I spent time painting landscapes in the Santa Barbara mountains. One day, I noticed a strange rash and thought little of it. About a month later I came down with a terrible \"flu\". Imagine if you can, the worst flu you\'ve ever had and then imagine having it day after day, year after year, interspersed with times of health when you think, \"finally, it\'s over\", only to get sick again over and over for 32 years. This began a journey that I never imagined my life would take. I finally was tested and diagnosed with Lyme disease and multiple co-infections 8 years ago. I remember the day I found out. I was so happy to finally know what had been wrong with me for 24 years. It was like a miracle and I allowed myself to hope again. Hope that finally this would be over.
I'm interested in becoming an ILADS Social Ambassador because I want to educate and bring awareness in my community about Lyme Disease. As a social worker, it is in my heart to help others and keep people safe. Back in May 2015, I was bit by a tick. I began to have some symptoms that were odd. I went to the local hospital where I was told I didn't show to have any signs, but yet they couldn't explain why my muscles felt sore and hurt. I felt tired most of the time and my skin appeared different. I had blood work done and was only told I had a high white blood cell count. The doctor said it didn't sound like Lyme disease since I did not have the bulls eye rash. The doctor still prescribed me doxycycline and my symptoms have began to disappear. But I will never really know if I in fact got Lyme disease from that tick. The ER physician did not appear to be educated in Lyme disease. I want to bring awareness to the Latino Community as well since many of us are not aware of what Lyme disease really is. I want to be a part of this organization to raise awareness and assist in educating people.
I have been diagnosed with Chronic Lyme for over 12 years. For some, every day is a struggle to live with Lyme Disease. But I don\'t believe that, for me, every day is a chance to fight hard to have a life where Lyme doesn\'t win. I currently have a following of readers on my blog - Dancing with Fireflies that come to read about Lyme disease and find out more information about how they can fight this terrible epidemic. I have over 2,000 regular readers, a few hundred twitter followers, and a community of friends and family who all support my fight against Lyme disease. Last year my daughter\'s Bat Mitzvah project was to raise awareness and money to donate for Lyme research. We would love the chance to work with you and become Social Ambassadors. We did try to submit a request last week. But for some reason we aren\'t getting anything back. If we missed something, please let us know. Thanks!! Crysta Icore
I don't really know when it all began. I think in 1998. I went to numerous doctors with my "weird" symptoms but no one could ever tell me what was wrong. Eventually I was prescribed antidepressants and was told I was crazy. Headaches, brain fog, joint pain, digestive problems, you name it. My cousin told me to go to an integrative doctor. On November 11, 2011, the VERY FIRST DAY I met my doctor, she said she thought I had Lyme Disease. I started treatment in January 2012 and am still battling co-infections. In addition, my daughter, age 8, and son, age 5, were both diagnosed with Lyme and co-infections. My family and friends have been a tremendous support group for us. I want to help others understand the complexity of Lyme and to seek help from the right places when needed. I want insurance companies to begin to grasp the magnitude of this disease, and how it takes control of your life. I want better testing so no one will ever have to suffer like so many of us have.
I have been deathly ill for over three years. I have just now been diagnosed with lymes after testing positive twice in the last two years. I don\'t want anyone to suffer for as long as I have (and I\'m one of the lucky ones) I want people to know that even tho we have this disease that life is still wonderful and worth living! I want to show other (esp women) that we are strong and we can heal each other!
I am a chronic Lyme and tick borne illness patient who was untreated for 9 years due to the lack of accurate detection of Lyme disease. It began in 2004, when I started experiencing strange flu like symptoms, off and on fevers, and myriad joint, body, nerve pains. I began to express my concerns to my doctor who dismissed my symptoms until 2006 when I experienced a flare up so profound that I was unable to work for over a year. At this point many tests were ordered including the Western Blot and ELISA test. With no \"positive\" laboratory findings I was finally told my problems were psychological and eventually that I had Fibromyalgia. I got somewhat better but never fully recovered and as the fall of 2011 came about I started to feel a marked increase in severity of my symptoms and flares. By the summer of 2012 I was in full flare and by the end of July I was hospitalized after I had become paralyzed with a fever of 102.5. A spinal tap revealed Lyme in my spinal fluid and l received an IV course for 28 days but continued to suffer. I finally found an ILADS doc and am undergoing long term therapy. I want to be a social ambassador so I can help educate the public and push for more research and tools.
I was infected with Lyme disease at the age of 11 while at sleepaway camp in West Milford, NJ. This was in 1991. I suffered for 18 years on and off with fevers, brain fog, extreme fatigue, horrible joint pain and neuropathy. It wasn\'t until 2009, when I was reinfected that I got a diagnosis from a LLMD after speaking with ILADS. I had received a positive ELISA and negative Western Blot for that infection, but started with the \"flu\" about 3 weeks later since my PCP ignored the test saying it was a false positive. I was able to stop the Doxycycline in February of 2010 after 8 1/2 months. I felt so much better. To this day, I still have brain fog and some cognitive issues, horrible joint pain that comes and goes and neuropathy. I\'ve also been diagnosed with Fibromyalgia. There needs to be more awareness of Lyme disease in this country and the world. People need to stop brushing it off as though it is in our heads.
I became ill in 1996 and slowly degenerated. Virtually bed-bound, I began researching and in 2010, fourteen years later, I finally came up with my own hypothesis: Lyme Disease. I found a LLMD to test me, and got the definitive diagnosis. Along the way, I met many amazing people and heard countless stories about others\' struggles with Lyme. I began moderating an online forum and networking with other patients, providing help and informal counsel. I also, bit by bit, from my bed or the bathroom floor, began working on a Social Work degree. I saw the need for trained therapists, to work with both patients, and to educate and work with physicians. I got my license to practice social work in the State of New York and now work with individuals with chronic Illness. I hope to work with physicians providing counseling and support to patients, and to be part of education efforts for physicians and the general public. A critical piece of this battle is making sure patients emotional needs are met, families know how to support their loved ones, and physicians know hot to treat the whole person. I hope ILADS Ambassadorship will be another piece of those efforts.
As so many before and still beside me I started out misdiagnosed Multiple Sclerosis which can show the exact symptoms as Lyme disease to which (fake or not) there was never a shred of doubt. Remaining in doubt personally and closing in to the point of no return healthwise, learning more on Lyme disease and improving non-stop by following ilads guidelines I am growing stronger every day!