Here is the doctor letter for easy copying and pasting. So copy this and past somewhere and print for your doctors. I am willing to email some but can't handle many.
Dear Doctor,
I ask that you read this information with an open mind, as what is presented here is no longer controversial. My hope is that the content herein will supplement your own knowledge and aid you in treating me.
DIAGNOSING LYME DISEASE
This is a statement from ILADS - the International Lyme and Associated Diseases Society:
THE ILADS POSITION ON DIAGNOSIS AND TESTING
Lyme disease is a clinical diagnosis based on the history and physical findings, and supported by appropriate laboratory tests when they are indicated. These elements must be considered in the context of the individual patient’s full story and with consideration of other diagnoses that may explain or confound the patient’s diagnosis. No single element of the diagnostic process outweighs the full and complete evaluation. The strengths and limitations of laboratory testing must be understood by the clinician in order to use testing modalities effectively and avoid some of the pitfalls of diagnosis that can result from over-reliance on laboratory testing to rule in or rule out an illness.
PLEASE BE AWARE: IDSA guidelines are outdated and have been removed from the National Guidelines Clearinghouse:
As of February 2018, ILADS’ treatment guidelines are the only Lyme disease guidelines available at the National Guideline Clearinghouse, an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the US Department of Health and Human Services. These guidelines were developed with careful attention to the peer-reviewed scientific evidence presented in the Lyme research using a rigorous GRADE41 assessment of the pertinent trial evidence.
As a medical professional you understand that the NGC is THE authority on disease treatment.
A visual you can refer to:
----‐
Lyme is an incredibly complex disease which has unfortunately become politicized.
The peer-reviewed scientific and medical literature points to several causes for ongoing symptoms in Lyme patients: autoimmune reactions; inflammatory responses, and persistent infection. I’d like to recommend several sources to you where you can learn more about Lyme, and briefly recap each.
“How Can I Get Better,” by Dr. Richard Horowitz, an internist who has spent decades treating tick-borne diseases, summarizes hundreds of peer-reviewed scientific and medical studies on tick-borne disease. One of the greatest takeaways from this book is how Lyme can cause long-term symptoms due to persistent infection. Dr. Horowitz summarizes several ways that the Lyme bacterium, Borrelia burgdorferi, can persist by evading the immune system and resisting antibiotic treatment:
• Lyme kills immune cells- B. burgdorferi can Lyse B cells and use membrane fragments to mask it from the immune system. As a result, the body sees the immune cells as foreign invaders and attacks those. B. burgdorferi has also been correlated with low natural killer cell counts. I found this paper highly informative: https://www.sciencedirect.com/science/article/abs/pii/S0165247800003163
I am aware that another paper attempted to refute this one. However, the rebuttal paper used only a tenth of the sample size, failed to control for age among the patient population, and used test methods notorious for returning false negatives.
• Lyme forms biofilms that protect it from antibiotics. I highly recommend reading the research by Dr. Alan McDonald and Professor Eva Sapi on this matter. This is a persistence mechanism that B. burgdorferi shares in common with Mycobacterium tuberculosis, the etiological agent of tuberculosis, a notoriously drug-resistant infection that often requires months of antibiotic treatment.
• B. burgdorferi forms dormant cysts that reactivate upon cessation of antibiotic therapy.
• B. burgdorferi is an intracellular infection. This means that it hides from the immune system inside our own cells.
• Antigenic variation: B. burgdorferi frequently varies its antigens to evade immune response.
Assorted peer-reviewed studies have demonstrated persistent infection in both animals and humans. Please see, for example, these recent papers:
Lyme patients have been horrendously marginalized in recent years as government agencies insisted that Lyme was always cured by a two-week short-course antibiotic protocol and that Lyme never has serious consequences. Newer research and evidence show Lyme linked to/correlated with carditis, Alzheimer’s, and ALS and even death from seizures.
Dr. Neil Spector, a Duke University oncologist and researcher has himself undergone heart transplant due to damage his heart sustained from an undiagnosed infection of Lyme Disease. You can read an account of his story in his book "Gone In A Heartbeat".
Neurospirochetosis and Alzheimer’s: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171359/
"Compared to other common infections, Lyme disease is particularly difficult to diagnose. Part of this is because the bacteria that causes Lyme disease (Borrelia burgdorferi) doesn’t stay in the blood for very long—a few days at the most."
Lyme and dementia: https://www.ncbi.nlm.nih.gov/pubmed/24762944
Lyme and ALS:
Commentary from a cardiologist on the challenges of treating Lyme carditis in a culture of disease denialism: https://www.forbes.com/sites/judystone/2015/09/04/lyme-deaths-from-heart-inflammation-likely-worse-than-we-thought
15 Government agencies now recognize Chronic Lyme as a legitimate diagnosis:
The UN Human Rights Committee met a few years back to discuss the US government’s handling of Lyme disease and declared their denialism of chronic Lyme a human rights violation:
World-renowned Hiv/AIDS activist Fred Verdult recently drew parallels between the disease denialism and stigma HIV/AIDS faced in the 80s and the current climate of Lyme denialism around the world today. He compares his personal struggles with receiving effective treatment for his HIV and Lyme infections.
I also wanted to share info about Washington DC Tick Borne working group that was established with the 21st Century Cures Act to address this very serious disease. There is Federal Agency looking at the huge issue
This validates a Senator died from this and the president signed the tick act due to the seriousness of the disease.
A lot of the denialism at the govt level stems from a racketeering case at the IDSA. In a nutshell, CT AG Blumenthal found in his antitrust investigation that the IDSA's Lyme panel that the panelists had received payments from insurance companies to deny that borrelia infections can be persistent, requiring expensive IV antibiotics, and to deny that Lyme can have extensive neurological complications. This is summarized in these perspectives:
Kaiser recently settled in a class-action lawsuit under RICO regarding collusion to deny treatment to policy holders:
Also, as a result of the CDC suppressing research on PCR DNA testing for borrelia offering higher sensitivity, which enables previously impossible early and late diagnosis, a $57 million class action lawsuit has been filed against the CDC under RICO.
July 14, 2021
Doctor, I am fighting an up-hill battle. I am worthy of kindness and support . I am not asking you to cure me or know all the answers, I simply ask that you be open to learning more about Lyme disease and how it has impacted me so that we can work together to restore my health. Thank you.
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
Comments