Chronic Lyme Associated With Loss of Contrast Sensitivity

In a recent article published in Translational Vision Science and Technology, researchers found that contrast sensitivity impairment was associated with patients suffering from chronic lyme.

According to theOnline Medical Dictionary, contrast sensitivity is defined as “The ability to detect sharp boundaries (stimuli) and to detect slight changes in luminance at regions without distinct contours.”

Investigators describe that contrast sensitivity has been found to be impaired in a variety of ocular conditions including cataract and retinal degeneration, as well as in neurologic diseases, such as multiple sclerosis; and loss of contrast sensitivity may also indicate specific or nonspecific deficits in neurologic and/or cognitive function. In this article, it was also found that contrast sensitivity impairment was marginally associated with patients exhibiting neurologic abnormalities and cognitive impairment, but with no other ocular complaints. Investigators further state that these links may be a marker of illness severity, but that it is unclear if CS testing would be a useful gauge of improvement over time, suggesting a need for further studies.

Read full article here

Read more LDA articles on chronic lyme symptoms here.

Review of Evidence Supporting IDSA Guidelines EM Treatment in US

Elizabeth Maloney, MD

The IDSA guidelines for Lyme disease contain 2 recommendations for antibiotic therapy for patients with erythema migrans (EM) rashes. The first recommendation identified which antibiotics were preferred and the second specified therapy duration.

In “Evidence-Based, Patient-Centered Treatment of Erythema Migrans in the United States,”Antibiotics 2021, author Elizabeth L. Maloney, MD, reviews the US trial evidence on EM rashes, problems of the IDSA recommendations considering that evidence, and provides evidence-based patient-centered strategies for managing patients with EM. “The EM rash is the hallmark finding of early disease,” along with other symptoms. “In light of the physical and financial costs, identifying and promoting highly effective therapeutic interventions for US patients with erythema migrans (EM) rashes that return them to their pre-infection health status should be a priority.”

The paper states “when promptly diagnosed and appropriately treated with antibiotics, early Lyme disease is curable.” Untreated and inadequately treated infections can progress to long-term sequalae. Patient-centered care–defined by the National Academy of Medicine—“…is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions. Patient-centered outcomes are outcomes that matter to patients, such as reductions in symptoms or improvements in quality of life.” In recent times, patient-centered outcomes are becoming part of trial designs.

Dr. Maloney uses a Medline search with specified criteria to identify the trials conducted in the US for the named antibiotics recommended by IDSA Lyme guidelines. There were 25 results of which 8 met the search criteria, other 17 were EM trials in Europe, disseminated disease in Europe, European antibiotic retreatment, culture difficulty, and tick bite prophylaxis. The US trials were old, were small, and 2 had high non completion rates of 40%+ and two others had single arm with 20%+ non—completion, thus Dr. Maloney indicates these should not be included to determine treatment efficacy.

The paper goes on to examine the remaining US trials, several of which used disease centered endpoints, not patient centered endpoints, and all those trials used what is currently considered outdated statistical methodology, pointing out the weaknesses of the evidence used by IDSA. In the conclusion, Dr. Maloney highlights the need for more research.

Click here to read the entire study

Click here to read Johns Hopkins Lyme Research Center Challenges IDSA Guidelines & Addresses Lyme-COVID

Click here to see video of Bransfield & Smith Discuss IDSA Guidelines IDSA Retracts Publication that Contains Inaccurate Statement

According to a June 22 press release from the Patient-Centered Care Advocacy Group (PCCAG), in response to a complaint filed by PCCAG President Bruce Fries, the Infectious Diseases Society of America (IDSA) has removed the publication, “Ten Facts You Should Know About Lyme Disease,” from its website.

The release indicates that the IDSA leadership removed this publication after they were informed that the document contained an inaccurate statement that “Lyme disease is caused by bacteria called Borrelia burgdorferi that is only transmitted to humans when they are bitten by an infected tick….It is well documented that Lyme disease can be transmitted from mother to fetus and lead to adverse birth outcomes. Transmission of B. burgdorferi from mother to fetus in humans has been documented withBorrelia spirochetes identified in fetal tissues/and or placenta by various methods including culture, immunohistochemistry with use of specific monoclonal antibodies, indirect immunofluorescence, PCR and microscopy.” Both CDC and NIH acknowledge this mode of transmission.

Bruce Fries also serves as an advisor for research and public policy for Mothers Against Lyme, a recently formed advocacy group, and PCCAG is an LDAnet partner organization. Read full press release here.

Lyme disease is a currently a trending clinical topic on Medscape, click here to read.

Current Lyme Reporting in Non-Endemic States Needs Tick-Bite Reporting

Data from a survey of respondents with self-reported tick bite encounters who concurrently reported a clinical or serological Lyme disease (LD) diagnosis from non-endemic states for Lyme disease was published in the journal Healthcare, June 21, 2021. Focusing on Texas, which due to large size, diverse climate, and ecological conditions, reflects environments that promote ticks, the scientists compared data from the self-reported LD patients with county-level confirmed cases of LD from the Centers for Disease Control & Prevention (CDC), and from serological canine reports. CDC has characterized states as low-incidence or non-endemic for Lyme, including Texas.

The findings indicated that “tick bite reports accurately overlapped with the geographic patterns of those patients previously known to be CDC-positive for serological LD and with canine-positive tests forBorrelia burgdorferi, anaplasmosis, and ehrlichiosis, as well as within neighboring counties and ecological regions. LD patient-reported tick bite encounters, corrected for population density, also accurately aligned with official CDC county hot-spots.”

Human LD cases that meet CDC surveillance criteria are compiled and reported. However, no agency or organization tracks LD cases from patients who do not meet CDC criteria. The CDC publishes LD cases by county, but the data is not always captured by county of exposure. Some cases may have been acquired during travel and not locally acquired in the county of diagnosis.

Some patients diagnosed with LD will have co-infections from other tick-borne diseases (TBDs) — “…the CDC and many states do not provide human TBD data at the county level for use in research or analysis.” The lack of this data available, coupled with a difficult-to-diagnose disease such as LD underscore the importance of using patient self-reported disease and official counts of disease as “epidemiological tools when disease can be linked to an event, such as a tick bite,” even though these methods are not widely used methods of surveillance.

“Tick-Borne Surveillance Patterns in Perceived Non-Endemic Geographic Areas: Human Tick Encounters and Disease Outcomes” by Sarah P. Maxwell, Connie L. McNeely, Kevin Thomas, and Chris Brooks indicates the following, “A finding of self- reported LD cases (via clinical or serological diagnosis), supported by known tick bites in CDC-positive ecological regions (eco-regions), provides an indicator that patient- reported LD and CDC-confirmed cases are strongly tied. This study uses county level, human, canine, and ecological data, providing an investigative snapshot of geographic overlap in Texas.”

Read full article here

More information on Diagnosis by Geography here (LDA website)

Read CDC Lyme Surveillance Criteria here

IPM Pest Alert – Asian Longhorned Tick

North Central Integrated Pest Management Center (IPM) has issued a new pest alert focusing on the Asian longhorned tick (ALT), which includes details about the tick’s life cycle, identification, and management options. Females can reproduce without mating with a male, causing a threat to livestock due to large-scale infestations on one animal leading to stress, blood loss and death. According to studies, ALT may spread disease such as Rocky Mountain spotted fever and other tick- borne illnesses, as they feed on multiple hosts throughout their lives. In it’s native East Asia, ALT can transmit Rickettsia japonica, which causes Japanese spotted fever, and severe fever with thrombocytopenia syndrome (SFTS) virus, among others.

ALT is invasive in Australia, New Zealand and the United States. ALT was found in New Jersey in 2017, and as of February 2021, it is found in 15 states in the U.S.

The Public Tick IPM Working Group produced this pest alert with support from the IPM Institute and the USDA National Institute of Food and Agriculture, Crop Protection and Pest Management Program through the North Central IPM Center

Click here for IPM Pest Alert – Asian Longhorned Tick

Click here for North Central IPM Newsletter Article

Click here for LDA website information on the Asian Longhorned tick

Delayed CDC Lyme Final Lyme Case Numbers for 2019 Finally Released

Lyme Disease Association (LDA) Announces CDC’s 2019 Final Lyme Disease Reported Case Numbers: The Centers for Disease Control & Prevention (CDC) has just released the 2019 final Lyme disease reported U.S. case numbers–34,945. CDC reported that cases were ~4% more than in 2018, and the geographic distribution of areas with a high incidence of Lyme appears to be expanding based on data reported toNational Notifiable Disease Surveillance System (NNDSS). The number of counties with an incidence of ≥10 confirmed cases per 100,000 persons increased from 324 in 2008 to 432 in 2019. Reporting Delay Explained Final Lyme disease case numbers are usually reported in the fall of the next year (for 2019, should have been reported in 2020). The CDC has responded to LDA inquiries over time that reporting was delayed due to the pandemic and thus to shortages of resources/personnel at many government levels, which was no surprise to anyone following the numbers’ delay. CDC also had a note on the reporting page that “Due to the coronavirus disease 2019 (COVID-19) pandemic, data from some jurisdictions may be incomplete.”

Past Estimates of Underreporting In the past, CDC has reported that only 10% of cases are actually reported─ that translates into 349,450 actual new Lyme cases in the US in 2019. However, in 2021, the CDC announced that “A recently released estimate based on insurance records suggests that each year ~ 476,000 Americans are diagnosed & treated for Lyme disease(1,2). ” Prior Lyme estimates based on claims data had indicated “~300,000 people get Lyme disease each year.” It appears clear from the number of patients culled from insurance data as being diagnosed and treated annually for Lyme disease in the U.S. that cases are vastly under- reported.

1. Schwartz AM, Kugeler KJ, Nelson CA, et al.Use of Commercial Claims Data for Evaluating Trends in Lyme Disease Diagnoses, United States, 2010-2018. Emerg Infect Dis. 2021;27(2). 2. Kugeler KJ, Schwartz AM, Delorey M, et al. Estimating the frequency of Lyme disease diagnoses —United States, 2010-2018. Emerg Infect Dis. 2021;27(2).

LDA NOTE: The State of Hawaii does not require reporting of Lyme disease. The State of New York estimates the Lyme numbers in many counties and those numbers are not permitted to be entered into CDC reported case numbers. Massachusetts changed their reporting system and their numbers on paper have dramatically dropped in the past few years, moving them out of the top 15 states. To see more states that have changed reporting of Lyme disease over time see LDA Lyme Cases Map Page

Top 15 States The LDA has ranked the top 15 states based on the CDC total reported Lyme case numbers for 2019 below. This ranking should not be construed to mean that other states do not have reported Lyme cases. They do have reported cases, Click here for all states, but often patients cannot get diagnosed and/or treated in states that CDC considers “low incidence” states, because doctors in low incidence states are often either afraid to diagnose Lyme or do not understand that surveillance criteria are not meant as diagnostic criteria. Read about Diagnosis by Geography

LDA State Ranking by Reported CDC Lyme Cases

Actual Cases (10x = actual State Ranking Reported Cases cases) 1 Pennsylvania 8998 89980 2 New York 4243 42430 3 New Jersey 3619 36190 4 Wisconsin 2178 21780 5 Maine 2167 21670 6 New Hampshire 1710 17100 7 Minnesota 1528 15280 8 Maryland 1417 14170 9 Connecticut 1233 12330 10 Virginia 1199 11990 11 Vermont 1064 10640 12 Rhode Island 971 9710 13 West Virginia 885 8850 Actual Cases (10x = actual State Ranking Reported Cases cases) 14 Delaware 641 6410 15 Ohio 467 4670

Prevention Video for Kids!

Watch Tick Video for Kids

Acting under the auspices of an Environmental Protection Agency grant, UMDNJ compiled an expert team to develop the video, TickLES (Tick Learning and Education for Schools), developed especially for younger elementary school children. LDA was a project collaborator and is responsible for hosting the TickLES video on its website for use by the public, for free.

TickLES Video

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.

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

May Awareness LDA Guest Blogger Sue 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-i n-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-t able-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-p atient-is-disrupting-medicine/

[xiii]https://myrnao.ca/sites/default/files/attached_files/Res olution%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_ly me_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 ofBorrelia 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-lym e-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-ly me-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/Pregnanc y-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=MN9CCXD TW9

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-dr iven-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-ly me/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-partnership s/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

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 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 Cardiac/Pulmonary

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

Lyme Rash Click for Info 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

Click for Symptoms 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

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

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

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

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

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

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 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.