Literature Review
In my personal experience being treated for Lyme disease, I noticed a glaring disconnect between each of the doctors that treated me. They all seemed to have different opinions, different routes of treatment, and different ways of talking about the disease. As I began research, I noticed it wasn't just the doctors, but a fundamdental misunderstanding dividing the entire medical community. The literature used to produce this website is drawn from the pillars of the medical community in order to bring attention to conflicting information and help sufferers and sympathizers understand what's really going on.
The Infectious Disease Society of American leads the fight to delegitimize Post-Treatment Lyme Disease Syndrome. They maintain that Lyme is usually curable with a short course of antibiotics. However, this refers to the infection itself, and not the symptoms that continue to diminish quality of life after the infection is cured. IDSA recognizes that many patients continue to experience symptoms years after treatment, but they argue the names "Chronic Lyme Disease" and "Post-Treatment Lyme Disease Syndrome" suggest active infection and are therefore categorically incorrect. They argue their reasoning is in the best interest of patients, as they believe it encourages doctors to prescribe prolonged courses of antibiotics that can be harmful and ineffective. However, they could just make it clear that PTLDS does not denote active infection and focus on clearing up the discrepancy instead of referring to this real and difficult condition as "so-called PTLDS."
The Mayo Clinic heavily emphasizes that the antibiotics are more effective the earlier you are diagnosed. While the IDSA's website puts forth the idea that Lyme is easily curable, the Mayo Clinic highlights the complexity of the disease and describes in detail what can happen if the infection is not caught right away. The language on their website is significantly less delegitimizing, and instead of calling it "so called PTLDS," they plainly state that people experience it, and more research is needed before we know what the best course of action is.
The Centers for Disease Control and Prevention have an especially helpful page of their website dedicated to PTLDS. The first sentence of their description says it is not uncommon to experience lingering symptoms, putting them at odds with both the IDSA and the Mayo Clinic's claims. In fact, they estimate that 10-20% of Lyme Disease patients experience some degree of PTLDS. They provide tips and advice for managing the syndrome, finding Lyme literate doctors, and sorting through misinformation. In addition, they make an important distinction between "chronic Lyme" and PTLDS. The term “chronic Lyme” should be discarded as misleading, but the term “post—Lyme disease syndrome” better reflects the postinfectious nature of this condition.
Among these players in the Lyme Disease controversy, the Columbia University Lyme and Tick Born Disease Research Center provided the most helpful and constructive advice and information about Lyme disease and PTLDS. Not only does it unequivocally recognize PTLDS as a real problem, the main mission of the Center is to identify better diagnostics, treatments, and an understanding of symptom persistence. It was the first academic research center in the country that focuses on long term effects of Lyme disease. They keep current information regarding new research, possible treatments, and medical trials. Organizations such s this one are an understanding place for a sufferer of PTLDS to go and find nonjudgemental support and guidance.
The Infectious Disease Society of American leads the fight to delegitimize Post-Treatment Lyme Disease Syndrome. They maintain that Lyme is usually curable with a short course of antibiotics. However, this refers to the infection itself, and not the symptoms that continue to diminish quality of life after the infection is cured. IDSA recognizes that many patients continue to experience symptoms years after treatment, but they argue the names "Chronic Lyme Disease" and "Post-Treatment Lyme Disease Syndrome" suggest active infection and are therefore categorically incorrect. They argue their reasoning is in the best interest of patients, as they believe it encourages doctors to prescribe prolonged courses of antibiotics that can be harmful and ineffective. However, they could just make it clear that PTLDS does not denote active infection and focus on clearing up the discrepancy instead of referring to this real and difficult condition as "so-called PTLDS."
The Mayo Clinic heavily emphasizes that the antibiotics are more effective the earlier you are diagnosed. While the IDSA's website puts forth the idea that Lyme is easily curable, the Mayo Clinic highlights the complexity of the disease and describes in detail what can happen if the infection is not caught right away. The language on their website is significantly less delegitimizing, and instead of calling it "so called PTLDS," they plainly state that people experience it, and more research is needed before we know what the best course of action is.
The Centers for Disease Control and Prevention have an especially helpful page of their website dedicated to PTLDS. The first sentence of their description says it is not uncommon to experience lingering symptoms, putting them at odds with both the IDSA and the Mayo Clinic's claims. In fact, they estimate that 10-20% of Lyme Disease patients experience some degree of PTLDS. They provide tips and advice for managing the syndrome, finding Lyme literate doctors, and sorting through misinformation. In addition, they make an important distinction between "chronic Lyme" and PTLDS. The term “chronic Lyme” should be discarded as misleading, but the term “post—Lyme disease syndrome” better reflects the postinfectious nature of this condition.
Among these players in the Lyme Disease controversy, the Columbia University Lyme and Tick Born Disease Research Center provided the most helpful and constructive advice and information about Lyme disease and PTLDS. Not only does it unequivocally recognize PTLDS as a real problem, the main mission of the Center is to identify better diagnostics, treatments, and an understanding of symptom persistence. It was the first academic research center in the country that focuses on long term effects of Lyme disease. They keep current information regarding new research, possible treatments, and medical trials. Organizations such s this one are an understanding place for a sufferer of PTLDS to go and find nonjudgemental support and guidance.