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My infection went undiagnosed for twenty years. I became pregnant five years after infection. After twenty years of seeing a zillion DRs, I finally figured out what was wrong by attending the Morgellons Disease conference in April of this year. I have Bb, Babesia, Mycoplasm pneumo, HSV , candida, toxic levels of mercury and lead mutliple food allergies, leaky gut. Once I got tested, I took my daughter. This past week, her lab tests started coming back. So far she has Babesia WA1, HSV6, Mycoplasm pneumo, celiac disease, multiple food allergies, We are still waiting for IGenex test results for Bb. So far we have spend close to 13,000 and have barely begun treatment. I want to stop this disease from spreading and find a cure so my daughter has a future.
Hi my name is Noelle! I have had Lyme disease for over 6 years but wasn\'t diagnosed till a year ago. I have been in treatment since then. I had a picc line for 2 months, orals for 9, and natural for 1. I am interested in becoming an ILADS social ambassador to raise awareness to chronic Lyme disease.
It has taken me more than ten years of countless doctors visits and misdiagnoses to finally discover the root of my chronic illness: Lyme Disease along with co-infections Babesia and Bartonella. In the beginning, I was told to believe my constant joint pain due to growing pains. Later, I was told my fatigue was due to working too hard. Within the past few years, I was told it was Epstein-Barr Virus, Migraines, Fibromyalgia, Chronic Fatigue, you name it. I was also told it was all in my head. My symptoms no longer came in waves, but they were now consistently occurring every day. From the moment I woke up to the moment I go to bed. I knew in my heart something was not right. After having a relatively positive Lyme lab result back in 2010, the thought of being treated improperly by my previous doctors was always in the back of my head. I was exhausted from traveling back and forth to doctors offices, trying to sell them on how Lyme was playing a larger role in my chronic illness. My small piece of evidence was perceived as irrelevant until one infectious disease doctor bought into it. He ordered an MRI of my brain, which ultimately showed classic signs of Lyme. This was my ah-ha moment! Soon enough, I began reading as much as I could about Lyme and how Lyme is neglected in the US. Within several weeks of extensive research, I became a patient of an amazing doctor that has finally given me hope for the first time in so many years. I have now started appropriate treatment and I am very thankful to be headed on the right path with a LLMD I am comfortable with. As many Lymees know, this is not an easy path and it's risky, but remaining positive and hopeful is essential. This disease can make people feel extremely lonely at times and it breaks my heart to know so people are suffering in silence. Without my close-knit family and friends, I do not know how I would make it through each day without them. It is truly mind-blowing how little attention the Lyme community receives and I became a LymePowerOfUs Social Ambassador to change that. I want to make a difference and do not want other individuals and their families and friends suffer. I want to raise awareness of Lyme disease and help put an end to this growing worldwide epidemic.
Growing up in the suburbs of New York, I have witnessed first hand the devastation of a Lyme misdiagnosis and the limited treatment options available. I currently work at an oncology center as a research study assistant. While we do have our own limitations, I am proud to work here and witness the revolutionary advances in medicine. We now present even the most hopeless patients with options. Seeing how far cancer research has come (thankfully), I cannot help but be mystified that Lyme research is so far behind. Its prevalence is high, and its symptoms are debilitating. It also amazes me how little people know about it and how it can be responsible for a whole host of anomalies characteristic other primary diseases. I feel very passionately about finding better tools to prevent, properly diagnosis and ultimately cure Lyme Disease.
I have battled chronic illness for a few years now. I have CFS, CAEBV, and possible chronic Lyme. I have not been able to get a positive lyme test it is on our radar anyway. None of that is why I am here. I am here because I know how hard it is to find a doctor that will help. I am here because I know how hard it is to not be able to afford to go to that doctor. I am here because on my health journey I have met beautiful people battling chronic lyme every day. I am here because I believe I can do more to help them. I am working on a fundraiser that will involve hiking 1 mile for ever $10 raised. I want people to know how healing hiking is for me and how it might help them too. Follow me on Instagram: Hiking4Change
At the age of fourteen, I contracted Lyme disease. It took seven years to diagnose, and by that time I had forgotten how to read, write, walk, and talk, and was having ten to twenty seizures a day. After a year of aggressive antibiotic treatment, I started studying to be an herbalist and opted to quit conventional treatment and treat myself naturally, specifically using the Buhner protocol. In doing so, I reached complete remission after a little over a year of herbal treatment. Since, I have either relapsed or been reinfected -after having zero Lyme symptoms, I suddenly had over thirty within one week, so it is hard to tell which. My goal in life is to bring even the smallest amount of light to another\\\'s darkness. That is the primary reason why I wish to be an ILADS Social Ambassador.
In winter of 2013, I began training for my first half marathon at Disney World, a dream of mine for years. By the time summer had hit, I was making such great progress, watching my time and distance steadily get better. Then, at the end of July 2013, I noticed a painful wound on my leg that wouldn't heal. I continued to push myself, even running a 10k, but by the next day, the wound on my leg had turned black and my whole thigh was inflamed, bright red, and hot to the touch. The pain was unbearable. I went to the ER where I was told the cause was an ingrown hair that had become infected. Suspecting something else was up, my father pushed the doctor for a second opinion and finally a second doctor said my wound was an infected tick bite. Despite starting medical care immediately, several weeks later my Lyme tests came back positive. Over the next months, I went from an active lifestyle to incapacitated by constant pain, nerve issues, memory loss, even speech problems. I've continued to fight (with the strong support of my family, my husband, and my sons) running my first half marathon 11/2013, and several more since then. My recovery has been slow and difficult, but and in 2/2015 I was diagnosed with an IBD-related co-infection most likely caused by my initial Lyme infection. My most recent test results show that I am still Lyme positive. This illness left me feeling defeated, alone, and the lack of information made it hard for me to get the help I needed. I felt like I was the only one who was having the problems I was having and there was no hope of ever getting better. I hope that by sharing my story, others out there will see they're not alone and there is somebody who understands exactly what you're going through. Feel free to contact/follow me via Twitter, I'm always available for support and discussion, or visit my website www.citrusswirl.com for more information about my treatment, progress, and support for those who are or have loved ones who are trying to navigate this horrible illness.
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. That happiness was misplaced. Chronic Lyme disease steals life. Lyme disease has taught me acceptance and gratefulness. And for those lessons I am deeply thankful...but honestly I would give up all I've learned in a second to run out, grab a kayak and take to the sea. I have become a LymePowerOfUs Social Ambassador because I care deeply about changing the lack of awareness of Lyme disease and what it can do to a person's life. I feel strongly that if doctor's were trained properly, this would put an end to chronic Lyme disease. And not one more person would have to spend their life struggling with this crippling illness.
My brother suffers from Central Nervous System Lyme and Encephalitis which was misdiagnosed for over 10 years. If his Lyme disease had been properly diagnosed from the start, the disease would not have been as serious and life threatening as it had gotten. I was crowned Miss New Hampshire Earth 2016 and have made it my mission to spread awareness about the seriousness of Lyme and its potential misdiagnosis.
I discovered I had Lyme during the summer of 2009 and had a three-week stay at New York Presbyterian Hospital. After the initial treatment, the doctors decided to treat each of my symptoms as a separate problem, rather than a combined issue. Because my illness was never fully addressed I continue to suffer from major debilitating issues such as migraines, fatigue, joint issues, and vision problems, specifically, convergence insufficiency. It has affected my schoolwork, extra curricular activities, and most aspects of my life. I have seen countless doctors,and right now I am in California receiving antibiotic infusions. Because of my frustration I am focusing my career on the study of Lyme disease in hopes to find a cure and a method of prevention.