The Conflict and Resources
The Confusion, Conflict & Resources
"I CANNOT STRESS ENOUGH Please remember... Your medical provider can only apply what they are aware of. They can only diagnose and treat by the guidelines they are sworn to follow. They are individuals that were following a calling and chose their career. I will always respect this. I am NOT a doctor or medical professional. I am just a person that took all of the resources I could find and applied what I felt was needed for my own well being with consultation of a licensed-medical professional. I am only providing resources that I researched on the internet. I have compiled them with the hope to give others a place to start. Thank You! -Sharon
There is a conflict between the top primary entities concerning the diagnosis, treatment, and terminology used etc. concerning Lyme Disease, Co-infections or Tick-borne Diseases. Dr. Willy Burgdorfer, Ph.D.,acknowledged it existed and described it as "Tainted". I have to agree! This conflict creates confusion to this day. People are stuck taking sides and I for one am sick of it! I am going to break this down and simplify the sources of information and what I have learned with the best of my non-medical ABILITY! This was where I started. Then I chose my path to feeling better and SO FAR it has worked. It included the resources I have listed below and the stories and research of others. SOME involved with the following resources and OTHERS that were like me... Just a person who was SICK... I am working on a page to share those resources. Hope I help someone, I hope it is YOU- Sharon
You can drive yourself crazy looking through all of these databases, websites, doctors journals, etc. Do yourself a favor and limit your research. SLEEP when you need too. WALK AWAY FOR A WHILE. Refresh a hobby. Draw, Paint, go fishing, meditate, knit a sock, try a new recipe. DO ANYTHING that gives you a break from research! FOCUS ON YOU! Start to apply what you learn. People are healing, and maintaining life with Lyme and other illnesses and You can too! -Sharon
******IMPORTANT TO NOTE**The IDSA panel recommendations differ from those of the ILADS.*****
THE INFECTIOUS DISEASES SOCIETY OF AMERICA
ABOUT The IDSA represents physicians, scientists and other health care professionals who specialize in infectious diseases. IDSA’s purpose is to improve the health of individuals, communities, and society by promoting excellence in patient care, education, research, public health, and prevention relating to infectious diseases. The Infectious Diseases Society of America was founded in 1963. It currently has more than 11,000 members. Source: IDSA
The IDSA information about Lyme Disease
IDSA'S TEN Facts about Lyme Disease Last Updated: 5/10/2011
As of 4/24/2018 When you search "Lyme" on the IDSA website You find 1,318 additional pages of information
International Lyme and Associated Diseases Society
ABOUT ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases. The mission of the ILADS' conferences is to bring together respected international researchers and clinicians to share cutting-edge research and diagnostic and treatment modalities that will enhance the lives of those suffering from these diseases. Source: About ILADS
The ILADS information about Lyme Disease
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses: by Joseph J. Burrascano Jr., MD
The above PDF download has been updated from the original I found 4 years ago. The original was written in 1984. This was one of the first pieces of paper I collected in my massive pile books and downloads, it made me question and think! It includes a list of symptoms.
US Department of Health and Human Services
HHS has 11 operating divisions, including eight agencies in the U.S. Public Health Service and three human services agencies.
US Department of Health and Human Services. It is the mission of the U.S. Department of Health & Human Services (HHS) to enhance and protect the health and well-being of all Americans. We fulfill that mission by providing for effective health and human services and fostering advances in medicine, public health, and social services. Source: About HHS.gov
The US Department of Health & Human Services is comprised of the HHS Family of Agencies: The Office of the Secretary, Operating Divisions, and Regional Offices administer HHS programs. Many HHS-funded services are provided at the local level by state or county agencies, or through private sector grantees. SOURCE: HHS.gov-about
HHS has 11 operating divisions, including eight agencies in the U.S. Public Health Service and three human services agencies.
Administration for Children and Families (ACF)
Administration for Community Living (ACL)
Centers for Disease Control and Prevention (CDC) (More Lyme related info below)
Centers for Medicare & Medicaid Services (CMS)
Food and Drug Administration (FDA)
National Institutes of Health (NIH) (More lyme related info below)
Substance Abuse and Mental Health Services Administration (SAMHSA)
SEE THE FULL LIST OF US DEPARTMENT OF HEALTH AGENCIES
These divisions administer a wide variety of health and human services and conduct life-saving research for the nation, protecting and serving all Americans. The Office of the Secretary (OS), HHS’s chief policy officer and general manager, administers and oversees the organization, its programs, and its activities. The Deputy Secretary and a number of Assistant Secretaries and Offices support OS. please continue reading at the Source: HHS.gov
The Center for Disease and Prevention and Control-CDC
CDC is ONE of the major operating components of the US Department of Health and Human Service
T
Center for Disease and Prevention Control- CDC View CDC’s Official Mission Statements/Organizational Charts to learn more about CDC′s organizational structure.
Source: cdc.gov
The CDC's information about Lyme Disease.
AS of 4/25/2018 there were 3,614 results returned for lyme search ...just on the CDC website
The National Institutes of Health-NIH
NIH is ONE of the divisions of the US Department of Health and Human services
- The National Institutes of Health
- NIH is made up of 27 Institutes and Centers, (This page last reviewed on July 6, 2017)
- each with a specific research agenda, often focusing on particular diseases or body systems.
- I did a search of the word "lyme" on NIH.gov website. I believe I found pretty much everything related to LYME that has been written about lyme by all 27 Institutes and Centers (SEE BELOW)
TWO of the 27 Institutes and Centers include
- CDC listed above
National Institute of Allergy and Infectious Diseases (NIAID) — Est. 1948
NIAID research strives to understand, treat, and ultimately prevent the myriad infectious, immunologic, and allergic diseases that threaten millions of human lives.
The mission of NCCIH is to define, through rigorous scientific investigation, the usefulness and safety of complementary and integrative health interventions and their roles in improving health and health care.
NIH leadership plays an active role in shaping the agency’s activities and outlook.
The National Institutes of health NIH organizes and shares their information on various databases the primary list can be found on The U.S National Library of Medicine-
National Library of Medicine (NLM) — Est. 1956
NLM collects, organizes, and makes available biomedical science information to scientists, health professionals, and the public. The Library’s Web-based databases, including PubMed/Medline and MedlinePlus, are used extensively around the world. NLM conducts and supports research in biomedical communications; creates information resources for molecular biology, biotechnology, toxicology, and environmental health; and provides grant and contract support for training, medical library resources, and biomedical informatics and communications research.04/24/2018 A search of the word Lyme produced 552 results
Source: National Library of Medicine
I have provided two for links to databases that offer Lyme related information found on the US National Library of Medicine website THERE ARE MORE!
The first is
Medline Plus Medline Plus has an Advisory Group The NIH MedlinePlus Advisory Group fosters collaboration between Institutes to guide the general public to NIH consumer-level content.
Information about Lyme Disease from the NIH on Medline Plus
The second is
SOURCES: ALL INFORMATION CREDITED TO THE LINKS PROVIDED
Let's sum this page up... The confusion and conflict between all of the entities listed above in more detail....
The leadership & membership of the IDSA whom can be connected by "dots" to the 11 operating divisions(some listed above) of our governments US Dept. of Health & Human Services and/or the 27 Institutes and Centers (some listed above) under the National Institutes of Health (another division of the HHS) which collects and distributes information through the National Library of Medicine. So.. the information provided on ALL associated websites and such are pretty much consistent to one unified direction concerning Lyme & TBD diagnoses, treatment, etc.
The leadership and membership of ILADS includes some past & existing members IDSA and/or none members of IDSA. Basically, those who do not entirely agree with the recommendations presented by the IDSA concerning diagnosis, treatment etc.
There are those physicians that choose to include alternative or complimentary treatments.
There are those that have no "medical designation" or qualifications that have become master herbalists in the field of plants and the medicinal qualities.
Do you know the origins of Aspirin a trademark of Bayer? .
There are Botanists that study plants and other disciplines that study specifics about various plants
There are those who specialize in Entomology the study of insects and still other specialties such as anthropology the list is endless.
ALL SEEM to be contributing time to this epidemic. They share their knowledge in journals and papers as well.
This isn't all about the medical research. It all needs to be reviewed.
Who do we believe? Who do you believe? That is the million dollar question! I guess it boils down to putting together all the pieces, connecting the dots and organizing a lot of other information from various sources readily accessible on the internet.
Consider the information presented and learn about leadership and membership of both entities. Attending conferences and presentations.
Digging through mountains of lab studies, publicly available research papers and studies published by medical professionals from every specialty in medical journals. Sorting through research conducted in Colleges and Universities inside and outside the US
Consider the research provided by those who may receive compensation for their work
and finally the stories from individuals such as myself.
Where do you begin? I began with a goal in mind.. If their was not one person on this planet that could assist me. I would assist myself.
I am working on creating a page dedicated to the various other individuals that provided resources and stories about their walk with illness and others who were misdiagnosed that eventually could trace back to Lyme bacteria or another Tick-Borne bacteria . I feel it necessary to share only those that assisted me to make choices for my own personal decisions during my journey. It is under construction I also felt it necessary to ask their permission before I shared them.
