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-Over 40 years un/mis-diagnosed Ohio Lyme Disease Association
I have been undergoing treatment for Lyme & co- infections for four+ years, only after being misdiagnosed & seeing a multitude of doctors for an intense 2 years. I have been through a lot with this disease, but the blessing is that I\'ve made it! I realize that I\'m not totally \"out of the woods\", I\'m still being treated with antibiotics. However, I\'ve been feeling well enough to focus on giving back & reaching out to help others. I\'m starting a support group meeting at my local library, and I\'ve been asked to speak at Women\'s Club meetings in our state(NH) to bring awareness. I believe Ilads to be the perfect partner as I move forward towards these goals. Thank you for the support & information you provide .- Deb Beattie
I found out I had lyme in november of 2012. After a generic course of antibiotics I thought it was gone. I spent january through april not realizing I was still sick. In May of 2013 I started to see a lyme specialist and begin real treatment. It was then that I found out that I had had lyme for 2 and a half years before I was diagnosed. Now I am living day by day trying to get better. I\'m interested in becoming an ILADS social ambassador because more people need to know the real effects of this disease. Where I am from lyme affects people and they don\'t even know they have it. People are walking around thinking they have the flu or mono but they really have lyme. Also when I tell people I have lyme they don\'t even know what it is or if they do they just think it is something like the flu. People need to know what this disease is and how they can prevent it. People need to know the symptoms and know that they can get tested for it. Had I know I might be in a different situation than I am in now. Lyme is something that effects my life, but I am not going to let that bring me down.
I contracted Lyme disease here in Delaware in the early 2000\\\\\\\'s and it was only through an incidental conversation with a high school friend, that the thought of Lyme as a diagnosis occurred to me. Funny, that. I grew up in Chester, CT across the river from Lyme, CT. In retrospect, I could see several episodes of symptoms. One summer night where I was so cold and chilled that my husband used every blanket in the house to help me get warm; to no avail. Then there was an episode of Bell\\\\\\\'s Palsy - I tried to whistle up our outside cats and couldn\\\\\\\'t! Then, on a trip back to CT, unremitting neck and shoulder pain along with feeling plain lousy. Then a redness on my right arm - first the upper arm for a few days, then the forearm, then back to the upper arm. And episodes of bone-crushing fatigue where the five step walk across my tiny kitchen was insurmountable, coupled with mental confusion, memory impairment and \\\\\\\'fog\\\\\\\'. I suggested a Lyme test to my PCP and fortunately, it came back positive. I went online and read up on treatment while getting a course of Doxycylin. I found a Lyme doc who treated me with various drugs for over a year. I have been lucky in my recovery. Others have not. I want to help with that.
I've been sick with Fibromyalgia, fatigue, brain fog, depression & intractable pain since a work-related injury in 1984. I was diagnosed with Fibromyalgia in '91. Chronic pain specialist for 17 years now. I feel like my body is turning into stone, I call it 'walking rigor mortise'. I've had 39 doctors and 63 pharmaceuticals to mask my symptoms. Many made me sicker, all certainly poorer. I want to work to help other's within Oregon change the laws, the policies, the treatments and allow patients to obtain proper treatment. I never want anyone else to endure what I've been thru. Pay it forward. My new Facebook group, 'Lyme Disease Eugene Oregon. This is a positive, supportive group created to join Oregon Lyme patients, their families & friends. Together this community can alter the horrible legal & medical barriers to proper diagnosis & treatment. We will be a direct action group as well, with signature gathering, protests, writing campaigns, information booths at events and more. It's gonna take the whole Eugene village to move this mountain together. We welcome as well all citizens of Oregon, no matter what city you live in.
My entire family has lyme and co infections. My daughter was deathly ill and missed a year of high school. We have been infected in both the US and Sweden. I am advocating for patients every single day here in Florida and in Europe and trying to get physicians interested in joining ILADS. I most likely passed lyme in utero to my only child. I have been spreading awareness to our politicians, and at health fairs, and through physician organizations. I am looking to get speakers to talk at Allergy and Immunology conferences. and other physician conferences. You can google my name and see the comments I have left after newspaper articles.
My granddaughter was diagnosed with late stage Lyme Disease May 2015 upon finishing up her Freshman year of college. She had been sick on and off for the last 3 to 4 years with strange symptoms. She had worked hard thru High School, working at a coffee shop, she pulled straight A\'s. She was offered a 4-year scholarship to Boise State. She was so excited, she worked during her Freshman year at a coffee shop and also as a Nanny, she was in a sorority. She had just signed her one-year lease on an apartment in Boise when the call came from her doctor in Oregon with the diagnosis. She packed up with the help of her mom and friends and moved back home with her mom. They started on the treatment, only to be told none would be covered under insurance except maybe the first month.. The cost of antibiotics were tremendous and still are. I have helped with around $40,000 since May. She could not go back to college in September for her sophomore year as she was too sick. The deferral on the scholarship is only for 1 year. My daughter and her work hard. She had a pic line put in for the antibiotic infusions around 2 months ago. She has infusions 4 hours a day 5 days a week at home. It is scary because there is no cure.
I was diagnosed with Lyme in 2011...years after other health issues...Ive been seeing a neurologist...he has taken an academic position and will not be seeing patients....after calling to scheudle an apt with one of his coworkers....not one doctor will accept me as a patient....not to mention multiply medical record numbers and calling the complaint line, my local political house of rep and just left a.message with the department of health NOT ONE will see me and NOT ONE will give me any aswers. Lyme is an epidemic Ive been saying it for years. doing my own research...you know before I was polietly told to let the doctors do and stop looking and I need help...what better way to get help ghen giving it. If you dont have your.health what do u have..I live in an area that one hospital dominates...to the point that I had a.physician lined up but once he got my records he decided not to take me on as a patient...I deserve good health care and so do the people.of my community. Im done sittng around,Im done lettting this disease and the healthcare system bully me around. Everyone deserves to be treated....I dont care what kind of health ins you have or how much money you dont have. just want to stand up for myself &others if i can
In 2004, I was conducting a workshop in Seattle. By the end of the day, my ankle was the size of a grapefruit. My journey went from doctor to doctor in the state of WA where the CDC at the time insisted Lyme did not exist. Thanks to my holistic radio show, I found Dr. Nooshin Darvish. Now, I am the founder of Transformation Talk Radio and this is our 10th year anniversary of the show. Thanks to the show, my contracting the disease, the amazing NDs in the state of WA and our perseverance, we have brought a whole new conversation about Lyme to Washington and the Pacific NW. I have lots more to share including the current challenges but I\'m alive thanks to the courage of Dr. Darvish when there was little or no support. Today, she is one of the leading docs helping people with Lyme and a spokes person as I am. With love and gratitude, Pat
My journey isn\\\'t a very long one but its been a life changer. I discovered a tick on me a little over a month ago, it was behind my ear. I never really thought about ticks being in my backyard but they can be anywhere. In Florida, you are more worried about Mosquitoes than anything else. Upon being bit, I noticed alot of joint pain and fatigue. I still wasn\\\'t worried about the tick bite but my doctor brought up Lyme Disease. He put me on antibiotics for 3 weeks. I felt awful. I ended up in the emergency room where they took me off antibiotics. I feel worse than i did on them. So little is known about this disease. Not enough fundraising is done and people are so unaware. I wish to spread awareness and be part of that team.