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Babesia odocoilei: First Report of Human Pathogen

In a new study, Scott et al. report the first detection of Babesia odocoilei in humans with Babesiois symptoms. This adds to the list of several Babesia species worldwide that are pathogenic to humans. In this study, it was also found that B. duncani cross-reacts with B. odocoilei, therefore patients in North America who test serologically positive for B. duncani, may actually be infected with B. odocoilei or another Babesia spp.

Read full article here:
Detection of Babesia odocoilei in Humans with Babesiosis Symptoms

Read more LDA articles on Babesiosis here.

 

 




HELP NEEDED IMMEDIATELY! NEW BILL FOR CHILDREN WITH LYME DISABILITIES TO BE INTRODUCED




HELP NEEDED IMMEDIATELY! NEW BILL FOR CHILDREN WITH LYME DISABILITIES TO BE INTRODUCED

Finished

LYME DISEASE CAUCUS & CHILD ACT 2021: The Congressional Lyme Disease Caucus is a bi-partisan group working together in the U.S. House of Representatives to take action on Lyme & tick-borne disease issues. They have been staunch friends to the Lyme community. There is a new bill about to be introduced into the House of Representatives by long-time Lyme Caucus Chair Congressman Christopher Smith (NJ-04-R), and to date, there are several co-sponsors: new Lyme Caucus Co-Chair, Rep. Henry Cuellar (TX-28-D), Lyme Caucus Member Rep. Bill Posey (FL-8-R), and Rep. Josh Gottheimer (NJ-5-D),  and Rep. Brian Fitzpatrick (PA-1-R).

Lyme and Kids in School

Congressman Smith is seeking co-sponsors for the bill from the members of the Congressional Lyme Disease Caucus. A letter has been sent to them from the office of Congressman Smith asking for Caucus Member co-sponsorship for the bill. The title of the legislation is “Children Inflicted by Lyme Disabilities Act 2021,” or “CHILD Act 2021.” The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA) to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.”

WHAT YOU CAN DO IMMEDIATELY (May 26 & 27): The Lyme Disease Association urges you to contact the Caucus members (listed below) by fax or phone and tell them it is important to sign on as a co-sponsor to this bill. Tell them they have received a letter from the Smith office. If they did not receive it, or they have questions, they can contact Kelsey Griswold at the Smith office.

You can also contact your own Congress Member if they are not one of the co-sponsors listed above. Tell them to contact the Office of Congressman Christopher Smith for details and to sign on to the bill. Must be done by Thursday night. 

Provide them with examples you may know about of children with Lyme disease with persistent symptoms (chronic Lyme) who have been unable to attend school for months and even years, or if they did attend, were unable to function without significant modifications to their educational programs. Often schools did not recognize the need or did not understand what needed to be provided. Thank them for listening and understanding the plight of our children who are at some of the highest risk of acquiring Lyme disease. Children 0-19 years represented 29% of reported Lyme cases from 2001-2017 (link for more info.). Remind them the CDC now estimates that 476,000 people in the US each year are diagnosed and treated for Lyme disease (link for more info.).

WHAT LDA HAS DONE: For decades, the Lyme Disease Association Inc. has been working with parents of children who have severe Lyme manifestations which interfere with cognitive and physical abilities to receive an appropriate education since schools have not generally understood the magnitude of the problem. The LDA has provided programs for teachers, students, school nurses, and psychologists. LDA has a Professional Advisory Board member who retired as a special services director in NJ. LDA President, Pat Smith, a former Board of Education Member, acted as a child advocate in the schools for students with Lyme disease. She met with teachers, special service teams, and administrators, and has worked with attorneys, and appeared in court with parents to try to resolve these issues. She has also in-serviced school staff and provided educational in-school programs for students on Lyme and TBDs as well as developed the LDA’s ABC’s of Lyme Disease pamphlet written especially for parents and educators. The pamphlet contains information from experts on the impact of Lyme disease on children’s education, and hundreds of thousands have been distributed. The LDA also has a Lyme Kids and Schools website section (link for more info.).

INSTRUCTIONS

  • On May 26, May 27
  • Call or fax Members of the Congressional Lyme caucus from the table below

o   DO NOT CALL Chris Smith, Henry Cuellar, or, Bill Posey

o   They already are on the bill

  • Follow instructions in the WHAT CAN YOU DO IMMEDIATELY SECTION above as to what to say and use your own experience when you can for why they need to sign on as co-sponsor to help pass this bill.
  • Also, you can look up your own Congress Member online and call or email and ask them to sign on.  Tell them to contact Kelsey Griswold, Office of Congressman Smith, for details of the bill.

o   If your group covers several congressional districts, contact those Congress Members.

NOTE: If your mouse hovers over the bottom of the chart, you will be able to zoom in and make the chart bigger or download it.

Caucus Contacts May 2021_4

 

 




Sue Faber, RN, BScN Guest Blog – Lyme & Pregnancy

May Awareness LDA Guest Blogger

SueFaberbyStef&EthanSue Faber is a Registered Nurse (BScN) and Co-founder and President of LymeHope, a not-for-profit organization in Canada.  Sue’s specific area of expertise and research is in the compilation and analysis of the literature that exists on maternal-fetal transmission of Lyme and congenital Lyme borreliosis; amplifying, supporting and powering urgent research initiatives to investigate this alternate mode of transmission with the ultimate goal of opening new doors to ensure that children and families affected are able to access appropriate care, treatment, and support.

In 2018, Sue co-authored a nursing resolution for the Registered Nurses Association of Ontario – based on the needs and voiced concerns of Canadians  with Lyme disease coast to coast.  ‘Patient First Treatment for Ontarians with Lyme Disease’– which was passed at the annual 2018 AGM in Toronto.    Sue was awarded the RNAO HUB Fellowship award in 2019.  Sue is honored to be an advisor to the newly formed advocacy group Mothers Against Lyme and has spoken at various conferences on maternal-fetal transmission of Lyme including ILADS (2019), LymeMIND (2019, 2020), NE Ohio Lyme Symposium,  Lyme WNY Symposium and Target Lyme (Ontario).   Sue is honored to collaborate with colleagues from McMaster Midwifery Research Centre in new ground-breaking research on Lyme and Pregnancy.

Sue is firmly committed to transparent and collaborative partnerships with governments, academia, research institutions, healthcare colleagues, and industry stakeholders, to collectively identify challenges, knowledge gaps, and fresh opportunities, to examine and develop transformative health policy, best practice guidelines, and research priorities, which are anchored in patient voice, values, and priorities.

Lyme and Pregnancy:  A Hopeful and Tangible Path Forward

My History  I’ll never forget the day at the end of January 2017 that I received an official letter from my local public health department.  The letter was in response to my requests for a meeting with senior management, to alert them to positive test results for Lyme disease for both myself and one of my daughters and to discuss my concerns that I may have transmitted this infection to her in-utero.   A year earlier I had tested two-tier positive for a European strain of Lyme in Canada – after years of complex multi-system medical symptoms which were fully investigated by multiple medical specialists, without any definitive answers.   I had no recall of a tick bite or an erythema migrans rash and thus tickborne disease had never been considered as a differential diagnosis by my medical team.  As a trained ER nurse, I knew nothing about Lyme disease. 

It was a stroke of luck that my primary doctor decided to test me for Lyme after every other possible diagnosis had been ruled out.  The test was positive. My eventual diagnosis of late-stage disseminated Lyme disease by a Canadian infectious disease physician was initially a relief as I now had a name to my illness and what I thought would be a defined path to recovery and healing.  Little did I know that this diagnosis would be the start of a journey into advocacy – one which I have likened to climbing up a steep mountain – without a map or guide – trusting and hoping that one day, I’d make it to the top.

As a Registered Nurse I am extensively trained in evidence-based practice and problem-based learning which has put me in good stead after receiving my Lyme disease diagnosis. I started delving into the published literature on Lyme disease and soon discovered the multi-system complexities of Lyme disease with some researchers identifying striking similarities to syphilis. [i] [ii]  Soon thereafter, I discovered the first published case report that Lyme disease could be transmitted from a mother to her baby in-utero in a paper titled ‘Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi’.[iii]  My heart started to race, I was nauseated and tears started to fall down my cheeks – could this mean that my precious daughters were also impacted?   Like most other aspects of Lyme, I would soon learn that the issue of maternal-fetal transmission was very controversial.

The onset of my symptoms was gradual and predated all of my pregnancies including one first trimester pregnancy loss.  All my daughters had struggled with varying complex medical issues from birth which included jaundice, severe colic, high fevers, myocarditis, atypical seizures, severe OCD, night terrors, anxiety, joint pain, learning difficulties, abdominal pain, strange rashes, speech delay, severe headaches, frequent pneumonia and double vision.  Each child had different clinical manifestations with one common theme – there were no definitive answers as to why.  Could tickborne infection transmitted in-utero be contributing to their illnesses?

My infectious disease physician who was treating me at the time never mentioned that Lyme could be transmitted in pregnancy. Later after I asked, they acknowledged that yes, there were case reports.  One of my daughters also tested two-tier positive in Canada for a European strain of Lyme disease – except unlike me who had lived in Asia and travelled throughout Europe where European strains of Lyme are predominant, she hadn’t.  We both had positive tests for a European strain of Lyme disease and this was why I had asked for a meeting with my local public health unit.  I was hoping they would be interested in investigating the possibility of maternal-fetal transmission. 

Instead, the letter I received back was disheartening and disconcerting.  I was advised that despite having tested positive in Canada, using two-tier criteria, both our cases would not be counted in Canadian surveillance statistics because our symptoms were ‘non-specific’ and we didn’t have a ‘clear onset’ or ‘reliable travel history.’  Furthermore I was informed that they had completed ‘a significant amount of research and no scientific evidence to support congenital Lyme in the scientific literature was found.’ 

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Starting a Non-Profit: LymeHope  By this time, I had read more primary research papers reporting transmission of Lyme from mother to baby in-utero [iv] [v] including a report issued by the World Health Organization[vi] and Health and Welfare Canada[vii] clearly documenting the risk of this alternate mode of transmission and possible adverse pregnancy outcomes.  Shortly thereafter, myself and colleague Jennifer Kravis co-founded the Canadian not-for-profit organization LymeHope.[viii] 

In February 2017, we started a ‘Ticking Lyme Bomb’ petition[ix] which now has over 86,600 signatures and over 17,000 personal comments from across Canada.  We also arranged meetings with Federal politicians from all parties, organized a bi-partisan round-table in Ottawa on Lyme disease,[x] testified at a Parliamentary Health Committee hearing[xi] and met with senior executives, scientists and officials from the Public Health Agency of Canada and Health Canada.  We were invited to meet with then Federal Minister of Health[xii] and then leader of the Conservative Party of Canada – each time drawing attention to the many complex, serious issues faced by Lyme sufferers across Canada including the documented risk of maternal-fetal transmission.  Each meeting represented another step ‘up the mountain’ with goals of identifying and initiating meaningful, collaborative solutions including innovative research – anchored in meaningful patient engagement and triaged by patient priorities.

In 2018 I co-authored a resolution on Lyme disease which was passed by the Registered Nurses Association of Ontario (RNAO) membership titled: ‘Patient First Treatment for Ontarians with Lyme Disease.’ [xiii]  This resolution highlights the multi-faceted issues faced by Canadian Lyme sufferers and the RNAO would later feature our resolution in an article[xiv] in their Registered Nurse Journal. I am so grateful for the ongoing support of the RNAO and especially the brilliant leadership of Dr. Doris Grinspun who leads the organization.  I’ll never forget her addressing the RNAO membership at the 2018 Annual General Meeting in Toronto – this was the meeting in which our resolution was later being presented for vote.  She shared in general terms that ‘disruption’  may be necessary when confronting obstacles which stand in the way of Canadians accessing appropriate health care.   As she spoke, tears flowed down my cheeks as I recalled the numerous letters, petition comments, personal testimonies and cries for help from my fellow Canadians – adults[xv] and children[xvi] alike – struggling to access appropriate care[xvii] and treatment for Lyme disease within Canada.[xviii]  

I personally didn’t want to be labeled as a ‘disruptor’ but rather a bridge-builder and peace-maker.  I so badly wanted meaningful, sustainable change for Canadians with Lyme disease.  However, I have since learned that ‘disruption’ is sometimes necessary if it leads to re-calibration, innovation and opens new opportunities for critical thinking, trust-building, identifying strategic research initiatives and initiates forward momentum.  Many issues around Lyme disease urgently need re-investigation including adequate testing, treatment and alternate modes of transmission.  New research continues to emerge which challenges the status quo, such as the persistence of the Lyme spirochete despite antibiotic treatment.[xix]  [xx]  This is an issue which advocates, clinicians and scientists have identified for decades and is anchored in findings from hundreds of peer-reviewed papers.[xxi]  What is most important is that new research on Lyme disease must be patient relevant.  In a 2016 CMAJ editorial article by Kristen Patrick[xxii], she states, ‘For patient-relevant research to be meaningful, patient and public engagement in research cannot comprise a token lay person on a research ethics review board.  Patients and their caregivers must be involved in decision-making at all steps in the research process, from design, to choice of primary and secondary outcomes, through dissemination and implementation.’

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National Media Coverage  In 2019, CTV National News[xxiii] highlighted our advocacy work regarding maternal-fetal transmission of Lyme disease and the importance of initiating new research collaborations on this important, under-studied issue.  This national media coverage also highlighted a systematic review on gestational Lyme[xxiv] which had been authored by scientists from both the Public Health Agency of Canada and CDC.  This review included a meta-analysis which identified a significant difference in the frequency of adverse outcomes between treated and untreated pregnancies affected by Lyme disease.  

In 2020, an advocate shared with me a discovery that three Federal Canadian agencies including: Health Canada[xxv], Public Health Agency of Canada[xxvi] and Occupational Health and Safety Canada,[xxvii] had historically acknowledged the risk of adverse outcomes associated with Lyme and pregnancy and/or maternal fetal transmission of Lyme on their respective websites.  In all three cases, over a period of several years, this precautionary guidance was subsequently removed.   For years,  we had been advocating for acknowledgement of these issues which had already been publicly communicated!

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20 Years of Research Has Not Overtuned Publish Risks Adverse Outcomes  As there has been no new research in over 20 years which has negated, questioned or overturned the published findings of earlier investigators, these precautionary statements should be clearly communicated.  This is highlighted by the tenants of the Precautionary Principle and clearly communicated in a Health Canada Framework on Managing Health Risks which states: [xxviii] ‘A key feature of managing health risks is that decisions are often made in the presence of considerable scientific uncertainty. A precautionary approach to decision making emphasizes the need to take timely and appropriately preventative action, even in the absence of a full scientific demonstration of cause and effect.’ Both the public and healthcare practitioners should be made aware of these documented risks of adverse pregnancy outcomes and of in-utero transmission of Lyme itself, even if considered rare.  I have asked Canadian Public Health Agency officials for rationale as to why this guidance was removed and continue to await an evidence-based response. 

I trust that the Public Health Agency of Canada and Health Canada will follow the CDC[xxix] and NIH[xxx] in updating their public guidance on Lyme and pregnancy to acknowledge that YES, Lyme can be transmitted in utero.  With this simple, evidence-based acknowledgement as a starting point – new doors WILL open for urgent, multi-disciplinary research to better understand this alternate mode of transmission and open new avenues for families and children impacted to receive the medical care and support they need and deserve.

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So where do we go from here?  There is action, HOPE and meaningful forward momentum!  In Canada, a brand new research project on Lyme and Pregnancy was initiated in the fall of 2020 by McMaster University Midwifery Research Centre[xxxi] and remains open for participants from the US, Canada and globally, I am thankful to part of this research team.  The Canadian Association of Schools of Nursing (CASN) has just released free, open access, online resources including online learning modules for nurses and other professionals working with clients, communities and populations facing climate-driven infectious diseases.[xxxii]  This innovative resource acknowledges both the risk of maternal-fetal transmission of Lyme disease and potential for adverse pregnancy outcomes and also includes a section titled: ‘Living with Climate-Driven Vector-Borne Disease’ which highlights patient advocacy efforts, patient stories and patient centered resources.[xxxiii]  I am so proud that nurses are listening, engaging and paving an inclusive way forward which respects, empowers and includes patients.

In the US, the Cohen Foundation[xxxiv] continues to lead with generous philanthropy for Lyme disease research, innovation and collaboration.  For the last two years I have been honored to represent LymeHope as a panelist in the  LymeMind Conference[xxxv], speaking directly to the issue of maternal-fetal transmission of Lyme[xxxvi] and alongside other experts, bringing this important, understudied alternate mode of transmission back into the forefront of academia and government.  I recently spoke at a webinar hosted by Project Lyme and Mothers Against Lyme Disease [xxxvii] where I shared an overview of the literature on Lyme and Pregnancy[xxxviii]  and also shared several research recommendations for a path forward. 

The recent US HHS announcement of LymeX, in partnership with the Steven and Alexandra Cohen Foundation[xxxix] is an extraordinary step forward in bringing together diverse stakeholders including government, non-profits, academia, advocates, patients and industry to ‘accelerate Lyme innovation.’  A recent Notice of Special Interest by the NIH for improving outcomes for maternal health[xl] included ‘development and validation of diagnostics for gestational Lyme disease, which can adversely impact maternal health and pregnancy outcomes.’  All of these things are indicators of positive forward momentum and provide me with renewed Hope that new science, innovation and collaboration will lead the way and open new doors.

Four years after starting Lyme advocacy I believe that we are collectively reaching a Lyme tipping point and patients and advocates are being respected, welcomed and heard.  I admit, there have been times I have been discouraged, exhausted, frustrated and even wanted to step away from leadership.  I’m so thankful for many who encourage me to keep going.  Advocacy in a field as contentious as Lyme disease can be a lonely, misunderstood place.  Pushing for change can be met with skepticism and silence.   If we continue to take one step and another, anchored in evidence, leaning on scientific inquiry and partnered with respectful dialogue and meaningful collaboration – we will make it up to the top of the mountain. 

I really look forward to the view from the top of the mountain and one day reaching the pinnacle and planting a flag which represents the hard work and dedication of advocates, patients, scientists, researchers, not-for-profits, clinicians and government officials – all determined to make a lasting difference on behalf of Lyme sufferers . For all the families impacted by Lyme disease and those concerned that in-utero transmission may be a factor in their child’s illness – don’t give up!  I wish I could give you a big Mama-bear hug – we must keep speaking out and sharing our stories, concerns and ideas for solutions.  Our collective voice is being heard and acknowledged and I truly believe that help is on the way.


Footnotes

[i] Hercogova J, Vanousova D. Syphilis and borreliosis during pregnancy. Dermatol Ther. 2008 May-Jun;21(3):205-9. doi: 10.1111/j.1529-8019.2008.00192.x. PMID: 18564251.

[ii] Miklossy, J. (2008). Biology and Neuropathology of Dementia in Syphilis and Lyme Disease. Handbook of Clinical Neurology, 825–844. doi:10.1016/s0072-9752(07)01272-9 

[iii] Schlesinger PA, Duray PH, Burke BA, Steere AC, Stillman MT. Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi. Ann Intern Med. 1985 Jul;103(1):67-8. doi: 10.7326/0003-4819-103-1-67. PMID: 4003991.

[iv] Weber K, Bratzke HJ, Neubert U, Wilske B, Duray PH. Borrelia burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy. Pediatr Infect Dis J. 1988 Apr;7(4):286-9. doi: 10.1097/00006454-198804000-00010. PMID: 3130607.

[v] MacDonald AB. Gestational Lyme borreliosis. Implications for the fetus. Rheum Dis Clin North Am. 1989 Nov;15(4):657-77. PMID: 2685924.

[vi] World Health Organization, Geneva. Weekly Epidemiological Record. No. 39. 26 September 1986. Page 297-304.

[vii] Health and Welfare Canada. Lyme Disease in Canada. Canada Dis Wkly Report, June 4, 1988.

[viii] LymeHope:  https://www.lymehope.ca/

[ix] Ticking Lyme Bomb Petition: https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

[x] MP Round Table and MP engagement.  https://www.lymehope.ca/advocacy-updates/update-on-mp-round-table-and-mp-engagement-regarding-lyme-disease-in-canada

[xi] Standing Committee on Health, Tuesday, June 6th, 2017.  Evidence. https://www.ourcommons.ca/DocumentViewer/en/42-1/HESA/meeting-59/evidence

[xii] Kingston, Anne.  How the Impatient Patient is Disrupting Medicine.  Macleans Magazine,  Oct, 2017. https://www.macleans.ca/society/health/how-the-new-impatient-patient-is-disrupting-medicine/

[xiii]https://myrnao.ca/sites/default/files/attached_files/Resolution%202018%20Final%20from%20AGM%20with%20amendments%20for%20website.pdf

[xiv]Registered Nurses Association of Ontario. ‘Ticking Lyme Bomb, May/June 2018. https://rnao.ca/sites/rnao-ca/files/RNJ-MayJune2018_ticking_lyme_bomb.pdf

[xv]Patient Testimonies at 2016 Federal Framework on Lyme Disease. https://www.canada.ca/en/public-health/services/diseases/lyme-disease/federal-framework-lyme-disease-conference/audio-recordings/public-forum-1.html

[xvi] Stimers, Daniel. Lyme Disease MP Roundtable Address, May 2018.  https://www.youtube.com/watch?v=Td-Vw-V7kGU&feature=youtu.be

[xvii] Gaudet EM, Gould ON, Lloyd V.  Parenting When Children Have Lyme Disease:  Fear, Frustration, Advocacy.  Healthcare 2019, 7(3), 95: https://doi.org/10.3390/healthcare7030095

[xviii] Boudreau CR, Lloyd VK, Gould ON. Motivations and Experiences of Canadians Seeking Treatment for Lyme Disease Outside of the Conventional Canadian Health-Care System. J Patient Exp. 2018;5(2):120-126. doi:10.1177/2374373517736385

[xix] Sapi E, Kasliwala RS, Ismail H, Torres JP, Oldakowski M, Markland S, Gaur G, Melillo A, Eisendle K, Liegner KB, Libien J, Goldman JE. The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease. Antibiotics (Basel). 2019 Oct 11;8(4):183. doi: 10.3390/antibiotics8040183. PMID: 31614557; PMCID: PMC6963883.

[xx] https://news.tulane.edu/pr/study-finds-evidence-persistent-lyme-infection-brain-despite-aggressive-antibiotic-therapy; https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full

[xxi]Peer-Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

[xxii] Patrick, K. Realizing the Vision of Patient Relevant Research. CMAJ, Vol 188, Issue 15, Oct 2016. https://www.cmaj.ca/content/188/15/1063.full

[xxiii] CTV National News.  Mothers on a mission to prove Lyme disease can be passed to an unborn child. https://www.ctvnews.ca/health/mothers-on-a-mission-to-prove-lyme-disease-can-be-passed-to-unborn-child-1.4261403

[xxiv] Waddell LA, Greig J, Lindsay LR, Hinckley AF, Ogden NH (2018) A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn. PLoS ONE 13(11): e0207067. https://doi.org/10.1371/journal.pone.0207067

[xxv] Health Canada. (October 2006) https://web.archive.org/web/20061018070947/http:/www.hc-sc.gc.ca/iyh-vsv/diseases-maladies/lyme_e.html

[xxvi] Public Health Agency of Canada (March 2009)

https://web.archive.org/web/20090307034620/http:/www.phac-aspc.gc.ca/id-mi/lyme-fs-eng.php

[xxvii]Canadian Centre for Occupational Health and Safety (May 1999)

https://web.archive.org/web/19990508215316/http:/www.ccohs.ca/oshanswers/diseases/lyme.html

[xxviii] Health Canada Decision making framework identifying, assessing and managing health risks, August 1, 2000: https://www.canada.ca/en/health-canada/corporate/about-health-canada/reports-publications/health-products-food-branch/health-canada-decision-making-framework-identifying-assessing-managing-health-risks.html#a13

[xxix] CDC. Pregnancy and Lyme Disease: https://www.cdc.gov/lyme/resources/toolkit/factsheets/Pregnancy-and-Lyme-Disease-508.pdf

[xxx] Lyme Disease, the Facts, the Challenge. NIH Publication No. 08-7045.  2008.

https://permanent.fdlp.gov/lps81243/LymeDisease.pdf

[xxxi] McMaster University Midwifery Research Centre.  ‘Health Outcomes of people with Lyme disease during pregnancy.’

English Version:  https://obsgynresearch.mcmaster.ca/surveys/index.php?s=MN9CCXDTW9

French Version: https://obsgynresearch.mcmaster.ca/surveys/?s=KWJT9K9TR9

[xxxii] Canadian Association of Schools of Nursing. Nursing and Climate Driven Vector Borne Disease.  https://vbd.casn.ca/

[xxxiii] Canadian Association of Schools of Nursing. Living with Climate Driven Vector Borne Disease. https://vbd.casn.ca/index.php/resources/living-with-climate-driven-vector-borne-disease/

[xxxiv] Cohen Lyme and Tickborne Disease Initiative:  https://www.steveandalex.org/ticks-suck/

[xxxv] LymeMIND: https://lymemind.org/

[xxxvi] 5th Annual LymeMIND Virtual Conference 2020: Mothers and Children Panel. https://www.youtube.com/watch?v=gevtoKkzS2Y&t=8s

[xxxvii] https://lymediseaseassociation.org/about-lyme/pregnancy-and-lyme/lyme-disease-pregnancy-research-opportunities-webinar/

[xxxviii] https://lymediseaseassociation.org/wp-content/uploads/2021/05/SueFaber_Maternal-Fetal-Transmission-of-Lyme-Research-Gaps-and-Next-Steps_April-29-2021_Webinar.pdf

[xxxix] LymeX initiative: https://www.hhs.gov/cto/initiatives/innovation-and-partnerships/lyme-innovation/lymex/index.html

[xl] Notice of Special Interest (NOSI): Small Business Initiatives for Innovative Diagnostic Technology for Improving Outcomes for Maternal Health

https://grants.nih.gov/grants/guide/notice-files/NOT-EB-21-001.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Judge Orders Hospital to Give Ivermectin to COVID Patient

Judge James Orel of DuPage County in Illinois ordered Edward-Elmhurst Hospital to give the drug, ivermectin, to a 68-year-old COVID-19 patient who had failed other treatments.

The patient, in intensive care for over a month, in a coma, and on a ventilator was not improving. Her daughter read the news story about a Buffalo, New York woman who recovered from COVID-19 after receiving ivermectin. Ivermectin is not endorsed by federal health agencies for treatment of COVID-19, but her daughter felt there was nothing to lose by trying it. However, the hospital and doctors refused to administer the drug, so she sued the hospital to force them, with the help of a New York law firm that has taken on other ivermectin cases.

The hospital finally agreed to let an outside doctor administer the drug.

The physician-led group called the Front Line COVID-19 Critical Care Alliance (FLCCC) has a review of ivermectin and its efficacy in the prophylaxis and treatment of COVID-19. FLCCC believes that ivermectin has anti-viral and anti-inflammatory properties.

See Medpagetoday.com (May 5, 2021) – “Judge Orders Hospital to Give COVID Patient Ivermectin”




About Lyme Disease Symptoms

Lyme Disease Symptoms & Signs

Lyme disease symptoms can affect any system in the body and can mimic symptoms of many different diseases.

Lyme disease symptoms

Lyme Disease Symptoms Compiled by the LDA

As listed in the LDA LymeR Primer Available for online ordering

As listed in the LDA Spanish LymeR Primer Available for Downloading

Click dropdown arrows for symptoms

Lyme Disease Symptoms Compiled by the LDA

As listed in the LDA LymeR Primer Available for online ordering

As listed in the LDA Spanish LymeR Primer Available for Downloading

Click dropdown arrows for symptoms

Lyme disease symptoms
Lyme disease symptoms

Cardiac/Pulmonary

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    chest pain or rib soreness, shortness of breath, heart palpitations, pulse skips, heart block, heart murmur

Lyme disease symptoms

Lyme Rash

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    Only about 9% get the classic bull’s eye rash. Others may get another type of Erythema Migrans (EM) rash or may get no rash at all. Rash at other than bite site may be disseminated disease. Symptoms may occur days or months after a tick bite.
    According to the Centers for Disease Control & Prevention (CDC) surveillance criteria, an erythema migrans (EM) rash in an endemic area, means Lyme disease. In a non-endemic area, a rash requires a positive test. The CDC criteria are for surveillance purposes, not diagnosis.

Gastrointestinal

Gastrointestinal

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    nausea or vomiting, GERD, change in bowel function (constipation, diarrhea), gastritis, abdominal cramping, cystitis, irritable bladder or bladder dysfunction, newly diagnosed irritable bowel syndrome (IBS) 

Musculoskeletal

Musculoskeletal

  • Click for Symptoms

    joint/muscle pain in feet, ankle pain, shin splints, joint pain or swelling, stiffness of the joints, neck or back, muscle pain or cramps that migrate, Temporomandibular joint dysfunction (TMJ/TMJD jaw pain), neck creaks & cracks, neck stiffness.

Neurological lyme disease

Neurological

  • Click for Symptoms

    muscle twitching, headache, tingling, numbness, burning or stabbing sensations, facial paralysis (Bell’s palsy), dizziness, poor balance, increased motion sickness, light-headedness, wooziness, difficulty walking, tremor, confusion, difficulty thinking/concentrating/ reading, forgetfulness, poor short-term memory, disorientation (getting lost, going to wrong place), difficulty with speech, double or blurry vision, eye pain, blindness, increased floaters, increased sensitivity to light or sound, buzzing or ringing in ears, ear pain, decreased hearing, seizure activity, white matter lesions, low blood pressure.

Neuropsychiatric

Neuropsychiatric

  • Click for Symptoms

    mood swings, violent outbursts, irritability, depression, disturbed sleep (too much, too little, early awakening), personality changes, obsessive – compulsive disorder (OCD), paranoia, panic/anxiety attacks, hallucinations.

Reproductive

Reproductive

  • Click for Symptoms

    testicular pain/pelvic pain, menstrual irregularity, milk production (lactation), sexual dysfunction or loss of libido.

Lyme disease symptoms

Other Symptoms

  • Click for Symptoms

    fever, sweats, or chills, weight change (loss or gain), fatigue, tiredness, hair loss, swollen glands, sore throat, difficulty swallowing, swelling around the eyes, burning in feet, swelling

Lyme Transmission

Lyme Transmission

  • Click for Info

    Not all patients recall a tick bite. Studies vary as to how long the tick must be attached in order to transmit Lyme disease. The longer an infected tick is attached, the greater the chance of contracting Lyme disease. Lyme can be transmitted through the placenta.

Lyme disease symptoms

Lyme from Borrelia mayonii
Another strain of Borrelia that causes Lyme

Early symptoms: fever, headaches, rash, neck pain Later: arthritis. Difference from Borrelia burgdorferi may include nausea & vomiting, diffuse rashes, higher concentration of bacteria in blood

Symptoms reviewed by Elizabeth Maloney, MD; President, Partnership for Tick-Borne Diseases Education


Other Tick-Borne Diseases & Conditions:

Patients may also contract other tick-borne diseases (co-infections) from a tick bite along with Lyme disease.

Visit LDA website Other Tick-Borne Diseases page


Other Resources for Lyme Disease Symptoms:

Columbia Lyme Rash Poster

Dr. Joseph Burrascano’s 2005 Lyme Disease Symptom List Chart

En Espanol Enfermedad De Lyme”  Spanish Patient Intake, Printable PDF

LDA Cardiac (Heart) Poster

LDA Lyme Disease Medical Photos  Including Rashes

LDA LymeLiteracy  LDA President’s Blog

LDA “LymeR Primer™” Detailed LDA Printable Brochure

En Española – “LymeR Primer™”  Folleto de Sensibilización

ILADS Treatment Guidelines International Lyme & Associated Diseases Society

Columbia Lyme & Tick-Borne Diseases Research Center – Treatment Page Columbia University, Irving Medical Center

© LDA. 2015, 2016, 2020. This website provides practical and useful information on the subject matters covered. It is distributed with the understanding that LDA is not engaged in rendering medical or other professional services. Seek professional services if necessary.

 

 

 

 

 

 

 

 




Kenneth Liegner, MD – Lyme & TBD: Where Are We, 2021?

May Awareness LDA Guest Blogger

Dr. Kenneth Liegner, MD

Dr. Kenneth Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. He has published articles on Lyme disease in peer-reviewed scientific journals and has presented poster abstracts and talks at national and international conferences on Lyme disease and other tick borne diseases. He has cared for many persons seriously ill with chronic and neurologic Lyme disease. His work has focused on the serious morbidity and (occasional) mortality that can eventuate from this aspect of the illness. He has emphasized the urgent need for widespread clinical availability of improved methods of diagnostic testing and for development of improved methods of treatment for Lyme disease in all its stages. He holds the first United States patent issued proposing application of acaricide to deer for area-wide control of deer-tick populations as a means of reducing the incidence of Lyme disease. He has authored In the Crucible of Chronic Lyme Disease – Collected Writings & Associated Materials, a documentational history of the struggle to characterize the nature of Lyme disease in the late 20th and early 21st centuries, published November 2015 (www.inthecrucibleofchroniclymedisease.com).

He served two terms on the Board of Directors of The International Lyme and Associated Diseases Society (www.ilads.org), is on the Scientific Advisory Board of the Lyme Disease Association (www.lymediseaseassociation.org), and is a member of the American Medical Association (www.ama-assn.org), the Westchester County Medical Society (www,wcms.org), the Medical Society of the State of New York (www.mssny.org) and The American Association of Physicians and Surgeons (www.aapsonline.org). He is on the staff of Northern Westchester Hospital Center in Mount Kisco, New York (Northwell Health System) and the Sharon Hospital in Sharon, Connecticut (Nuvance Health System).

He was the first physician to apply disulfiram in the treatment of Lyme disease and published his experience with his first three patients in the peer-reviewed journal Antibiotics, May 2019 (https://www.mdpi.com/2079-6382/8/2/72) and reported his first 3 years’ experience with the drug in December 2020 (Antibiotics 2020, 9(12), 868; https://doi.org/10.3390/antibiotics9120868) He was co-author on a landmark pathologic study of tissues from a person with chronic Lyme disease (https://www.mdpi.com/2079-6382/8/4/183) and co-author of the ILADS evidence-based definition of chronic Lyme disease (https://www.mdpi.com/2079-6382/8/4/269).

Lyme & Tick- & Vector-Borne Disease: Where Are We, May 2021?

The COVID-19 Pandemic has overwhelmed the U.S. of A. and the world and has temporarily overshadowed another ‘shadow on the Land’* – the global pandemic of Lyme disease.

As city denizens flee for more rural areas in efforts to minimize the risks of acquiring COVID-19, they may be less mindful of the risks ticks pose. Deer tick bites often go unnoticed, yet they can transmit the agent of Lyme disease and a range of other infectious diseases:  non-Lyme borrelioses (e.g. tick-borne relapsing fever due to the spirochete Borrelia miyamotoi), Powassan virus, anaplasmosis (a Rocky Mountain Spotted Fever-like illness) and babesiosis. Bartonellosis may also occur in persons with Lyme disease (whether tick- or flea-transmitted or due to a cat scratch), complicating the clinical picture.  Onset of Lyme disease can be insidious and tests not always reliable so there can be delays in diagnosis which allow borrelial infections to become deeply entrenched and more difficult to treat.

The HHS Tick-borne Diseases Working Group with very significant input by patients, advocates and some treating clinicians has developed important perspectives to the problems posed by tick-borne infections and is serving to ‘move things forward’. 

Although there has been some increased Federal funding for Lyme and other tick-borne diseases recently, as well as influx of funds from charitable foundations and private donors, the total commitment to solving these complex problems had been inadequate: consistent funding for H.I.V./A.I.D.S. greater than $1 billon/year for decades has enabled real progress in diagnosis and therapy.  An infection that was basically a death sentence is now eminently manageable with oral anti-viral agents. Affected individuals can enjoy a good quality of life with a life-span approximating those not infected.  Annual funding for Lyme disease by comparison, has been paltry.

Sadly, despite decades of advocacy we still lack a clinically available, well-validated and reproducible direct detection test for Lyme disease that can measure ‘borrelial load’ (analogous to measures of ‘viral load’ so very useful in the management of H.I.V./A.I.D.S.).

Likewise, attention to the development of improved therapeutics has been grossly inadequate at the Federal level, progress stymied by the damaging dogma: chronic Lyme disease does not exist.

In the past decade and largely due to funding from private foundations and patient advocacy groups, innovative forays in to repurposing of FDA-approved agents already in the United States Pharmacopeia and novel combinations of pharmaceutical as well has herbal-derived principles in vitro have identified promising new approaches which are beginning to be explored clinically, mostly by individual practitioners.

This ought to be vastly expanded and undertaken as systematic and formal clinical trials against ‘comparator’ agents such as ‘standard’ recommended antibiotherapies.  Such trials are costly, however, would lead to more ‘robust’ data that are more than merely ‘anecdotal’.   This merits funding with Federal dollars.  Academic medical centers are well-equipped and well-accustomed to running such randomized controlled trials.  However, such trials could also be undertaken ‘in the community’ through clinicians actually caring for patients with chronic tick-borne illnesses. 

I have likened practitioners caring for patients with the ‘big 3’ B’s  of tick- and vector-borne diseases (Borreliosis, Babesiosis and Bartonellosis) to playing 3 simultaneous games of chess in 3 dimensions against 3 opposing Grandmasters.  It is a great challenge for practitioners.  It is not boring!  But when one successfully enables patients to improve their quality of life and sometimes (with shared decision-making, luck, skill and patient & practitioner perseverance) to make a full or substantial recovery, well, it is very gratifying.

Lots of work remains to be done!  Let us all resolve to do that work!  Let’s cooperate!  Let’s get busy!

*the title of United States Public Health Service Surgeon General (1936-1948) Thomas Parran’s influential book concerning syphilis

Kenneth B. Liegner, M.D.
Pawling, New York
April 29, 2021

 




Contact Us

LDA’s mission does NOT include providing medical advice or researching your questions.  We do not answer medical questions or identify ticks or rashes.  Many questions can be answered by you researching the LDA site and its links to other sites. Please use the search box feature to find information on the website.  We are an all volunteer organization and do our best to respond to your questions and concerns. 

DO NOT use the “Contact Us” Forms for Items Below: (We WILL NOT respond due to email volume)

  • To ask any medical questions (we do not provide any medical advice)
  • To ask for information on whether chronic Lyme patients should take COVID 19 vaccine (do not know anyone who has that data)
  • To ask for Doctor Referrals – use our automated system (Click here)

Available “Contact Us” Forms:

  • Dr. Referral technical questions please Click here

 

Other Contact Information

Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax

www.LymeDiseaseAssociation.org
 

 

 




COCA/CDC Lyme Disease Conference Call – May 20th, 2020

The Clinician Outreach and Communication Activity (COCA)/Center for Disease Control is offering a conference call on May 20th, 2020: Lyme Disease Updates and New Educational Tools for Clinicians from 2:00–3:00 P.M. ET.  See right side of page for instructions on how to join the call via zoom or phone. Advanced registration is not required.

During this COCA Call, presenters will review updates in Lyme disease epidemiology, diagnosis, treatment, and prevention and share new educational tools for both healthcare providers and their patients.

Presenters include Grace Marx, MD, MPH –LCDR, U.S. Public Health Service
Medical Epidemiologist, Bacterial Diseases Branch, Division of Vector-Borne Diseases, CDC

Free Continuing Education (CE) credits can be earned for this call, even if you cannot participate live. Click here for info on CE for COCA calls/webinars

Click here for information on the call: Lyme Disease Updates and New Educational Tools for Clinicians

Click here to view prior COCA calls/webinars

Click here for Post-Webinar Analysis by LDA


COCA provides clinicians with the most up to date information and guidance from the Center for Disease Control (CDC) regarding emergency preparedness and response and emerging public health threats.




Tick-Eating Robots Going to International Competition with VMI Team

Tick-eating robot
Photo thanks: J. Occi, (PhD cand) LDA Scientific & Prof. Advisory Board

The tick rover, a robot designed to remove and kill ticks from people’s yards, and a longtime project for Col. Jim Squire, Professor of Electrical and Computer Engineering, Virginia Military Institute, has won an award. The tick-eating robot traps ticks hiding on bushes and has been field-tested by biologists.

A team of four cadets made improvements to the rover over the winter and then entered it into a contest sponsored by the Institute of Electrical and Electronics Engineers (IEEE). Their tick-eating robot defeated several teams from the nation’s top research universities and will represent the United States and Canada in the international IEEE competition in Seville, Spain.

Next, the team hopes to license the robot and collaborate with a Dartmouth neuroscientist who wants to start a company based on it.

Read more on Virginia Military Institute’s website.

Read more about ticks, Lyme disease and the military on LDA’s website.