27 Lyme warriors battle the IDSA, 7 panelist doctors, and a handful of insurance companies
MEGAN'S LYME JOURNEY
Hear my story
Welcome to the blog dedicated to telling my Lyme story. I’m thrilled you’re here—because I have so much I want to share with you. So many people are stunned when we tell them the political injustices that come along with Lyme; I am here to spread word as well as keep family members and friends updated on how things are going. I appreciate each and every one of you here - thank you.
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About Lyme
Hear It From Me
Lyme is the fastest growing Vector-Borne Infectious Disease in the United States. Within two weeks, it's everywhere in the body: bones, joints, nervous systems, muscles, and every organ system. Infected through the bite of a tick or the placenta of an infected mother, most Lyme patients present with the chronic manifestation of the disease. It is believed that this is decided by certain DNA sequences of the patient. Even though there is no existing study to back this decision up, the CDC issued a protocol long ago that states Lyme patients should only be treated for 28 days. Because of this, patients are forced to see Private-Practice Medical Lyme doctors or Naturopathic Doctors; a hospital-practicing doctor will receive medical suspension or lose their job if they treat us. PP Doctors who treat us long-term are never covered by insurance; we constantly fight insurance companies on this, but they follow what the CDC says. The process of getting PICC lines or ports for patients is often extremely difficult since you have to find a doctor that is willing to put their job on the line to give you the treatment you need. Lyme is extremely underfunded, under-acknowledged, and misunderstood.
Resources
ILADS
The team of doctors working to find a cure and advocate for patients
The International Lyme and Associated Diseases Society is a group of practitioners that are working to build awareness, increase funding for research and treatment, educate other practitioners and the public, and join forces to find effective treatments. Most of these doctors are putting their jobs on the line, risking their medical licenses to treat late-stage patients like me. They keep at it in hope of changing the CDC protocols, further making it legal for us to be helped and treated in hospitals.
Symptoms
Help me spread word of common red flags for Lyme
Check if you have Lyme by answering some simple questions from an educated resource. Some identifiers/related diseases are: Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome/M.E., Postural Orthostatic Tachycardia Syndrome, Arthritis, Rheumatoid Arthritis, unexplained Anemia or Osteoporosis, Multiple Sclerosis, Autism, ALS, Dementia, and persistent bone, joint, or nerve pain and swollen joints.
Support
Support kiddos with Lyme by donation
LymeLight is a foundation dedicated to giving out grants to those being treated with Lyme under the age of 25 who demonstrate a financial need. Personal grants can be up to $10,000, while families with more than one member diagnosed can receive triple that. Lyme treatment is so expensive no matter what route you take, and there are not many other organizations who seem to understand this the way LymeLight does. Started by parents with two children sick with Lyme, they know the financial crises that are bound to occur.
Listen
Physicians and patients talking about their experience with the pandemic
Here is a resource that is very neat; both physicians and patients are recorded on their experience with Lyme, specifically the injustices that tend to occur. A fast way to raise awareness and get the word out there is to listen to others affected; oftentimes their stories are very similar to mine.