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Infected at age 18 in 1974. Undiagnosed for 30 years. Am 57 now and suffering greatly. How can I help ? The cure is beyond me now, but can my voice help the future? Have been through every \\\"cure\\\" money can buy but to no avail. Am bedridden now and losing,sight in my right eye. Insurance has paid for nothing in this journey.
My husband, Gary, was misdiagnosed for nearly two years. He suffered from incredible anxiety/depression, slurred speach, tremors from head to toe, severe migraines and arthritis in his legs, back and arms. The whole time his doctors stuck with the original diagnosis of Conversion Disorder (a psychological disorder) and they insisted that with weekly therapy he would recover. 9 months of therapy later he was not improving, in fact he was quickly declining. Even after re-visiting Duke Hospital in Charlotte, NC the doctors at Duke reassured us (even with a positive Lyme test) that Gary did have conversion disorder because Lyme disease is highly unlikely in the state of North Carolina. My family has suffered so much because of the arrogance and ignorance of the doctors that we relied on to take the best care of my husband. We\\\'ve lost our home in the process and now live with my in-laws because Gary is incapable of caring for our 2 small children while he\\\'s at home and can\\\'t be left alone for fear he may fall or be injured in some way. I am determined to prevent other families from going through what we\\\'ve gone through. If it hadn\\\'t been for a distant family member encouraging Gary to be tested for Lyme I don\\\'t know where we\\\'d be.
I have been battling with Lyme since February 2013. My primary care doctor diagnosed me with an acute case of Lyme, however after my systems did not improve after my antibiotic treatment, I sought a second opinion from a LLD. Turns out my condition was not acute and now I suffer long term nerve and joint damage. I have also developed Fibromyalgia as a result of the Lyme infection.
For years I have lived with Chronic Lyme Disease , the fatigue and myriad of symptoms from recurrent fever, neuralgia , GI disturbances, emotional upheaval, and malaise. I feel one of our greatest resources in helping those who suffer with this devastating disease is through social awareness. I wish to be an ILADS Social Ambassador so I can devote myself to raising awareness, hope, and support for those who face Lyme Disease. Knowledge is power and I wish to be part of the revolution needed in our healthcare to reach as many people as possible!
I have had Lyme twice in my life and immediate my family members have also been in treatment for the disease. I am hoping to help others by educating them about the disease and about prevention, treatment, and care.
I am interested in being a part of this ambassador program!
I was diagnosed with Lyme disease in August of 2013,after having multiple misdiagnosis for over a year. My lyme is late stage/chronic and I was treated throughout the entire month of August with IV antibiotics through an at home PICC line. My Lyme disease also contributed to me getting pseudo tumor cerebri. I am not symptom free and after the countless doctors visits and failed remedies for Lyme I have tried I think that it is so important other people are made aware of what this disease is and what it can do and I love to spread the word!
I was young and healthy until 1985. My first symptom was an horribly swollen knee. I\'d been in Arkansas. My doctor initially said \"Lyme\" and then proceeded to treat for Ankylosing Spondylitis for 14 years with prednisone, gold, and anti-inflammatories. Anti-inflammatories became my drug of choice for many years. Pain was unremitting. I had various endocrine failures, treated but without resolve. My quest for the remaining 17 hours to get my PhD were no longer in my dreams. I turned seriously worse in 2005 and began my trek from one major medical center, including Mayo Clinic, to another, never with any resolve nor even a diagnosis. At one place, I was downright abused. With blood pressure raging in the 200\'s/100\'s, my endocrinologist sent me to a shrink. I never had a normal day after 1985 until I met Dr. H in California in 2008. He is a saint. Working through IgeneX labs and others, I finally got a diagnosis and have been in treatment since. While I can\'t say I\'m normal, I am eternally grateful that I can now do parts of what I did before. I can enjoy my family, something I hadn\'t been able to do for many years. I host a monthly Lyme group in the Denver metro area.