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Welcome to the Texas Lyme Alliance interactive support website. Texas Lyme Alliance is a science based non profit funding research for a treatment for congenital and pediatric patients. |
Lyme disease is a bacterial infection caused by members of the Borrelia burgdorferi sensu lato complex. Although the disease was initially identified in Europe, it was named after the town where the first group of US cases was described. While historically most cases clustered into certain geographic regions, the infection is increasingly widespread across the globe. Lyme disease is the most common vector-borne disease in the United States, with the Centers for Disease Control (CDC) estimating that more than 422,000 cases of Lyme disease are diagnosed each year.1 Lyme disease is also the most common vector-borne illness in Europe. Lyme/tick-borne illnesses IDSA recommendations are inappropriately outdated and were just published in 2020 but was no update for Lyme. It still promotes guidelines that ensure "treatment failure" in a large population. This is also known as Post Treatment Lyme Disease/PTLDS which has no scientific merit to earn a diagnosis. Patients' push for change has succeeded nationally where in 2020, we increased funding to $91 MILLION in government appropriations!
Lyme disease can be very serious. The infection is often multisystem – involving joints, heart, and the nervous system. Although early recognition and treatment lead to resolution of illness for many patients, there are many who live with persistent, debilitating symptoms, and persistent infection – which ILADS terms chronic Lyme disease. The IDSA still does not admit persistence or congenital Lyme exist. Our government should make certain all societies uphold the no conflict of interests rule and adhere to updated science. ILADS finds that guidelines that address the illness in surveillance case terms, including those historically promoted by the Centers for Disease Control, do not serve patients well. This document attempts to explain the many challenges faced by patients with tick-borne illnesses, including controversies over terminology and treatment. It seeks to describe ILADS’ position in these controversies and challenges. ILADS Treatment Guidelines, a comprehensive review of the best science on effective treatment for particular aspects of Lyme disease, touch on many of these controversial issues within the context of our evidence-based treatment recommendations.
https://www.ilads.org/research-literature/controversies-challenges/
Congenital Transmission
Untreated Lyme disease during pregnancy can lead to infection of the placenta, states the CDC. Spread from mother to fetus is possible but rare. https://www.cdc.gov/lyme/transmission/index.html Note that not all fetus's infected gestationally with borrelia parish.
First, let's establish persistence of Lyme bacteria after the standard treatment.
Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group †.
Lyme disease, resulting from an active infection with any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl), often affects multiple systems. It is the most common vector-borne illness in the United States [1] and Europe [2]. The Centers for Disease Control and Antibiotics 2019, 8, 269; doi:10.3390/antibiotics8040269 www.mdpi.com/journal/antibiotics Antibiotics 2019, 8, 269 2 of 20 Prevention (CDC) estimates that the annual incidence of Lyme disease in the United States exceeds 329,000 [3]. It is well-documented that many patients present with manifestations of late disease prior to receiving antibiotic therapy and investigators in the field have long known that the illness can be chronic [1,4–6]. While a history of a known blacklegged tick bite or erythema migrans (EM) rash allows for a timely diagnosis, few patients were aware of a tick bite prior to infection [7,8] and the incidence of EM rashes varies by geographic location and Borrelial species such that some patients never develop an EM [1,8,9]. Thus, chronic manifestations of Lyme disease may result from diagnostic delays. Chronic manifestations of Lyme disease may also result from failed antibiotic therapy as commonly prescribed regimens can be non-curative [4,10–15]. Researchers have documented that patients with acute and/or long-standing Lyme disease frequently remain ill for prolonged periods of time following treatment and that some experience disease progression despite treatment [4,15–18]. Chronic manifestations of Lyme disease are associated with significant and long-standing quality-of-life (QoL) impairments in some patients [16–20]. QoL scores of participants in the four National Institutes of Health (NIH)-sponsored Lyme disease retreatment trials were consistently worse than those of healthy populations [16–18].
-Read the full version here:
Lyme disease can be very serious. The infection is often multisystem – involving joints, heart, and the nervous system. Although early recognition and treatment lead to resolution of illness for many patients, there are many who live with persistent, debilitating symptoms, and persistent infection – which ILADS terms chronic Lyme disease. The IDSA still does not admit persistence or congenital Lyme exist. Our government should make certain all societies uphold the no conflict of interests rule and adhere to updated science. ILADS finds that guidelines that address the illness in surveillance case terms, including those historically promoted by the Centers for Disease Control, do not serve patients well. This document attempts to explain the many challenges faced by patients with tick-borne illnesses, including controversies over terminology and treatment. It seeks to describe ILADS’ position in these controversies and challenges. ILADS Treatment Guidelines, a comprehensive review of the best science on effective treatment for particular aspects of Lyme disease, touch on many of these controversial issues within the context of our evidence-based treatment recommendations.
https://www.ilads.org/research-literature/controversies-challenges/
Congenital Transmission
Untreated Lyme disease during pregnancy can lead to infection of the placenta, states the CDC. Spread from mother to fetus is possible but rare. https://www.cdc.gov/lyme/transmission/index.html Note that not all fetus's infected gestationally with borrelia parish.
First, let's establish persistence of Lyme bacteria after the standard treatment.
Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group †.
Lyme disease, resulting from an active infection with any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl), often affects multiple systems. It is the most common vector-borne illness in the United States [1] and Europe [2]. The Centers for Disease Control and Antibiotics 2019, 8, 269; doi:10.3390/antibiotics8040269 www.mdpi.com/journal/antibiotics Antibiotics 2019, 8, 269 2 of 20 Prevention (CDC) estimates that the annual incidence of Lyme disease in the United States exceeds 329,000 [3]. It is well-documented that many patients present with manifestations of late disease prior to receiving antibiotic therapy and investigators in the field have long known that the illness can be chronic [1,4–6]. While a history of a known blacklegged tick bite or erythema migrans (EM) rash allows for a timely diagnosis, few patients were aware of a tick bite prior to infection [7,8] and the incidence of EM rashes varies by geographic location and Borrelial species such that some patients never develop an EM [1,8,9]. Thus, chronic manifestations of Lyme disease may result from diagnostic delays. Chronic manifestations of Lyme disease may also result from failed antibiotic therapy as commonly prescribed regimens can be non-curative [4,10–15]. Researchers have documented that patients with acute and/or long-standing Lyme disease frequently remain ill for prolonged periods of time following treatment and that some experience disease progression despite treatment [4,15–18]. Chronic manifestations of Lyme disease are associated with significant and long-standing quality-of-life (QoL) impairments in some patients [16–20]. QoL scores of participants in the four National Institutes of Health (NIH)-sponsored Lyme disease retreatment trials were consistently worse than those of healthy populations [16–18].
-Read the full version here:
| ilads_evidence-based_definition_cld_w_appendix_final_final_antibiotics-08-00269-v2.pdf |
Lyme in Texas:
Implications of climate change on the distribution of the tick vector Ixodes scapularis and risk for Lyme disease in the Texas-Mexico transboundary region
Of the 1235 tick samples collected, 109 were identified as I. scapularis. Infection with B. burgdorferi was detected in 45% of the I. scapularis ticks collected. The model presented here indicates a wide distribution for I. scapularis, with higher probability of occurrence along the Gulf of Mexico coast. Results of the modeling approach applied predict that habitat suitable for the distribution of I. scapularis in the Texas-Mexico transboundary region will remain relatively stable until 2050.
https://parasitesandvectors.biomedcentral.com/articles/10.1186/1756-3305-7-199
Implications of climate change on the distribution of the tick vector Ixodes scapularis and risk for Lyme disease in the Texas-Mexico transboundary region
Of the 1235 tick samples collected, 109 were identified as I. scapularis. Infection with B. burgdorferi was detected in 45% of the I. scapularis ticks collected. The model presented here indicates a wide distribution for I. scapularis, with higher probability of occurrence along the Gulf of Mexico coast. Results of the modeling approach applied predict that habitat suitable for the distribution of I. scapularis in the Texas-Mexico transboundary region will remain relatively stable until 2050.
https://parasitesandvectors.biomedcentral.com/articles/10.1186/1756-3305-7-199
| lymecases_in_tx_per_county.pdf |
| tick-borne-diseases-texas.pptx |
| facts_for_physicians_12.1.15[1].pdf |
The Elusive Understanding of Lyme Disease in Non-Endemic Geographic Areas: An Exploratory Survey of Patients With Chronic Symptoms in Texas by Dr. Sarah Maxwell
| sarah_maxwell_lyme_quality_of_life_symptoms_article.pdf |
Families with Tick-borne illness have gone without adequate medical care in Texas and beyond due to the denial that the borrelia spirochetes persist. In spite of multiple studies proving Lyme persists, the old dogma that Lyme is hard to catch and easy to treat still exists today. Doctors have not been protected when they try to help their patients with Lyme due to inadequate guidelines necessary to treat persistent infection, and patients suffer from a lack of care. "Doing nothing, IS doing harm to patients." This goes against the oath every Dr. takes. Dr.'s could dig deeper for the root of illness to help their patients heal. Our hope is to continue the fight Senator Chris Harris brought to the Texas legislators and push for change. Texans are desperate for adequate medical care and deserve insurance coverage for treatment that meets international guidelines (IOM).
The controversy that's existed is scientific but has been made political, leaving desperately sick patients largely ignored to suffer for decades and left to die. There is a need for political pressure for better diagnostics, treatment, insurance coverage and education. We are working to help Texans get what they need to to get back to work in the home and in their communities. We don't need more sick parents taking care of sick kids. Congenital Lyme is acknowledged by the CDC, and can run for generations escaping diagnosis. Not all fetus's that get infected by their mother's during pregnancy die. Some live and suffer unnecessarily painful and traumatizing outcomes that leave some homes bankrupt and alone in a desperate plea for medical attention.
Do you have any of these lingering symptoms?
The controversy that's existed is scientific but has been made political, leaving desperately sick patients largely ignored to suffer for decades and left to die. There is a need for political pressure for better diagnostics, treatment, insurance coverage and education. We are working to help Texans get what they need to to get back to work in the home and in their communities. We don't need more sick parents taking care of sick kids. Congenital Lyme is acknowledged by the CDC, and can run for generations escaping diagnosis. Not all fetus's that get infected by their mother's during pregnancy die. Some live and suffer unnecessarily painful and traumatizing outcomes that leave some homes bankrupt and alone in a desperate plea for medical attention.
Do you have any of these lingering symptoms?
Physician Training Program
ILADEF and ILADS are committed to supporting medical professionals as they take on the challenges in evaluating and treating patients with tick-borne diseases. Lyme disease and other tick-borne infections are complex illnesses which can be difficult to diagnose and challenging to treat effectively. This is especially true for patients with chronic Lyme disease or multiple infections.
ILADEF’s training program provides a foundation in the evidence-based treatment of Lyme and associated diseases, and directly addresses commonly encountered diagnostic and therapeutic challenges. This intensive, one-to-two week program places trainee-physicians in the clinical offices of experts, where they learn how to evaluate and treat patients for Lyme and other tick-borne diseases in a real world setting that allows physicians to appreciate diverse and often subtle presentations of tick-borne disease. Participants will return to practice with enhanced clinical skills and an integrated, nuanced approach to directing treatment. The program is appropriate for, and tailored to meet, the educational needs of its participants, no matter their general experience level or familiarity with tick-borne disease. https://iladef.org/physician-training-program/
Lessons From Lyme Disease: Six Reasons The CDC’s COVID-19 Failure Was predictable:
https://www.forbes.com/sites/marybethpfeiffer/2020/03/13/lessons-from-lyme-disease-six-reasons-the-cdcs-covid-19-failure-was-predictable/?fbclid=IwAR2CllCGNsutxPB8NcsB6YAsSPV72KbtDKPhGABbGHBU4gmDJ-E4LaHu3DI#6cb284af8e6b
Lyme evades treatment and persists:
“It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition, tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart,” said lead author Monica Embers, PhD, assistant professor of microbiology and immunology at Tulane University School of Medicine. https://www.lymedisease.org/lyme-study-embers/
An excellent review of the literature on Bb persisters, that led to disulfiram being studied to kill persisters:
https://www.ncbi.nlm.nih.gov/pubmed/31097026
Spatial and Temporal Comparison of Perceived Risks and Confirmed Cases of Lyme Disease:
An Exploratory Study of Google Trends, Dr. Sarah Maxwell
https://www.frontiersin.org/articles/10.3389/fpubh.2020.00395/full
This presentation was created using references from the CDC and ILADS medical information to inform pediatric medical offices and families about Lyme and coinfections. It was done in 2018 and some information may not current. You may want to pause it to read as it will move pretty fast through the information. Not medical advice.
Visit this channel for dedicated Lyme disease information:
This website is maintained by the Texas Lyme Alliance. Visit our sister site for treatment information www.DisulfiramForLyme.org. All donations made on either website are fully tax deductible per the IRS (FEIN# 85-0916055). Last updated 12/5/2020 with all of the newest information regarding disulfiram. Click the "contact" link to send us any inquiries or feedback. We are patient-centered and look forward to hearing from you. Join our newsletter for wellness information and calls to action to help better the lives of Lyme patients. We advocate for all ages around the globe to have a treatment that works! Thank you for visiting and God bless you all on your healing journey!
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FB: @mkbauer6, @TexasLymeAlliance, @DisulfiramforLyme, @YogaSynergySpa
Twitter: @mkbauer6, @TexasLyme, @DisulfiramLyme,
Instagram: @mkbauer6
LinkedIn: www.linkedin.com/in/mkbauer6
https://youtube.com/c/KristinaBauer
