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Deer Keds, Flying Ticks?

https://www.iamexpat.de/expat-info/german-expat-news/tick-season-germany-look-out-flying-ticks

Tick season in Germany: Look out for “flying ticks”

27 July 2021, by William Nehra

Excerpts:

Ticks can cause similar problems amongst humans, spreading diseases like tick-borne encephalitis (TBE) and Lyme disease, as well as some other, lesser-known diseases like babesiosis and boutonneuse fever. In 2019, a Hyalomma tick even infected a man in North Rhine-Westphalia with typhus.

Beware of “flying ticks”

Between July and October, the deer louse fly is also active in Germany. Sometimes known as a “flying tick”, these critters make a beeline for their target and then shed their wings when they land, burrowing down, biting and sucking blood from their victims. The ticks usually target animals, but attacks on humans have been recorded. They prefer to bite humans on the scalp or neck and can cause allergic reactions and even heart infections.

Deer louse flies are usually found in forests in the summer and autumn. It is recommended to thoroughly check any pets after walks in case they have been bitten by ticks. Ticks can be located using a flea comb and removed with adhesive tape or washed away. Any animal that has been infested with ticks should be bathed and washed.

(See link for article)

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The deer ked (Lipoptena cervi) mainly parasitize elk and deer but also bite humans. It is unknown whether it serves as a vector for transmission but the following have been detected:

Anaplasma
Lyme disease
Bartonella

Remains of L. cervi have been found on Otzi, the Stone Age mummy.

Read the following on the deer fly (200 species in the Chrysops genus):

While male deer flies collect pollen, female deer flies feed on blood, which they require to produce eggs.^[4] Females feed primarily on mammals. They are attracted to prey by sight, smell, or the detection of carbon dioxide. Other attractants are body heat, movement, dark colours, and lights in the night. They are active under direct sunshine and hours when the temperature is above 22 °C (71.6°).^[4] When feeding, the females use scissor-like mandibles and maxillae to make a cross-shaped incision and then lap up the blood. Their bite can be painful. Anti-coagulants in the saliva of the fly prevents blood from clotting and may cause severe allergic reactions. Parasites and diseases transmitted by the deer fly include tularemia, anthrax, anaplasmosis, equine infectious anemia, hog cholera, and filiariasis. DEET is not an effective repellent.^[2]

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https://www.sciencedaily.com/releases/2019/05/190531135826.htm

New records show spread of parasitic deer flies across the United States

Date:: May 31, 2019
Source:: Penn State
Summary:: With flattened bodies, grabbing forelegs and deciduous wings, deer keds do not look like your typical fly. These parasites of deer — which occasionally bite humans — are more widely distributed across the US than previously thought, according to entomologists, who caution that deer keds may transmit disease-causing bacteria.

With flattened bodies, grabbing forelegs and deciduous wings, deer keds do not look like your typical fly. These parasites of deer — which occasionally bite humans — are more widely distributed across the U.S. than previously thought, according to Penn State entomologists, who caution that deer keds may transmit disease-causing bacteria.

“It was more or less known where deer keds are found, but very broadly,” said Michael Skvarla, extension educator and director of the Insect Identification Lab in the Department of Entomology at Penn State. “We don’t know if deer keds transmit pathogens (disease-causing microorganisms), but if they do, then knowing where they are at more precisely could be important in terms of telling people to watch out for them.”

The researchers collated records of the four North American deer ked species and produced the most detailed locality map of these flies to date, documenting ten new state and 122 new county records. The researchers published their results in a recent issue of the Journal of Medical Entomology. They also provided an illustrated species-identification key.

The team harnessed citizen science — collection of data by the public — to gather deer ked records from the U.S. and Canada. In addition to scouring museum databases and community websites like BugGuide and iNaturalist, the team distributed deer ked collection kits to hunters as part of the Pennsylvania Parasite Hunters community project. The researchers also collected flies directly from carcasses at Pennsylvanian deer butcheries.

“I really like using citizen science information,” said Skvarla. “It often fills in a lot of gaps because people are taking photographs in places that entomologists may not be going. Deer keds are the perfect candidate for citizen science. They’re easy to identify because there’s only four species in the country and because they’re mostly geographically separated. And as flat, parasitic flies, they’re really distinctive. You couldn’t do this with a lot of insect groups because they’d be too difficult to identify from photographs.”

The European deer ked, Lipoptena cervi, thought to have been introduced from Europe, previously was reported to occur throughout the Northeast region. The researchers newly report this species from Connecticut, Rhode Island, Vermont, and as far south as Virginia. In Pennsylvania, it occurs throughout the state, with 26 new county records.

The researchers also describe new records of the neotropical deer ked, L. mazamae, from North Carolina, Tennessee and Missouri — increasing its range further north and east than had previously been reported.

In western North America, two deer ked species, L. depressa and Neolipoptena ferrisi, are found from British Columbia through the U.S. and into Mexico — and as far east as South Dakota. The researchers newly report these species from Nevada and Idaho.

Deer keds are usually found on deer, elk and moose, but occasionally bite humans and domestic mammals. Although several tick-borne pathogens — including bacteria that cause Lyme disease, cat scratch fever and anaplasmosis — have been detected in deer keds, it is unknown whether they can be transmitted through bites.

“In Pennsylvania you have a lot of hunters,” said Skvarla.

“Deer keds can run up your arm while you’re field dressing a deer and bite you. If these insects are picking up pathogens from deer, they could transmit them to hunters. With two million hunters in the state, that’s not an insignificant portion of the population. We don’t want to scare people, but people should be aware there is the potential for deer keds to transmit pathogens that can cause disease.”

The researchers will next screen hundreds of deer keds for pathogens. They will also dissect some insects to screen the salivary glands and guts separately. According to Skvarla, this approach will give a good indication of whether deer keds could transmit pathogens through bites, or whether the bacteria are merely passed through the gut after a blood meal.

In Pennsylvania, after deer keds emerge from the soil each fall, they fly to a host and immediately shed their wings, usually remaining on the same host for life. Females produce just one egg at a time — it hatches inside her, and she feeds the growing larva with a milk-like substance. When the larva is almost fully developed, it drops to the soil and forms a pupa, eventually emerging as a winged adult. If disease-causing bacteria are transmitted from mother to offspring, newly emerged flies could pass on pathogens to hosts. Pathogens could also be spread when bacteria-harboring flies jump between animals in close contact.

The other researcher working on this project was Erika Machtinger, assistant professor of entomology at Penn State.

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https://www.mdedge.com/dermatology/article/171732/infectious-diseases/deer-ked-lyme-carrying-ectoparasite-move

Deer Ked: A Lyme-Carrying Ectoparasite on the Move

Cutis. 2018 August;102(2):121-122

By Andrew Kelsey, MD Justin Finch, MD

Lipoptena cervi, known as the deer ked, is an ectoparasite of cervids traditionally found in northern European countries such as Norway, Sweden, and Finland. Although rarely reported in the United States, this vector recently has been shown to carry Borrelia burgdorferi and Anaplasma phagocytophylum from specimens collected domestically. Importantly, it has been suggested that deer keds are one of the many disease-carrying vectors that are now found in more expansive regions of the world due to climate change. We report a rare sighting of L cervi in Connecticut. Additionally, we captured a high-resolution photograph of a deer ked that can be used by dermatologists to help identify this disease-carrying ectoparasite.

Practice Points

There are many more disease-carrying arthropods than are routinely studied by scientists and physicians.
Even if the insect cannot be identified, it is important to monitor patients who have experienced arthropod assault for signs of clinical diseases.

Case Report

A 31-year-old man presented to the dermatology clinic 1 day after mountain biking in the woods in Hartford County, Connecticut. He stated that he found a tick attached to his shirt after riding (Figure). Careful examination of the patient showed no signs of a bite reaction. The insect was identified via microscopy as the deer ked Lipoptena cervi.

Comment

Lipoptena cervi, known as the deer ked, is an ectoparasite of cervids traditionally found in Norway, Sweden, and Finland.¹ The deer ked was first reported in American deer in 2 independent sightings in Pennsylvania and New Hampshire in 1907.² More recently deer keds have been reported in Massachusetts, New York, Pennsylvania, and New Hampshire.³ In the United States, L cervi is thought to be an invasive species transported from Europe in the 1800s.^4,5 The main host is thought to be the white-tailed deer (Odocoileus viginianus). Once a suitable host is found, the deer ked sheds its wings and crawls into the fur. After engorging on a blood meal, it deposits prepupae that fall from the host and mature into winged adults during the late summer into the autumn. Adults may exhibit swarming behavior, and it is during this host-seeking activity that they land on humans.³

Following the bite of a deer ked, there are reports of long-lasting dermatitis in both humans and dogs.^1,4,6 One case series involving 19 patients following deer ked bites reported pruritic bite papules.⁴ The reaction appeared to be treatment resistant and lasted from 2 weeks to 12 months. Histologic examination was typical for arthropod assault. Of 11 papules that were biopsied, most (7/11) showed C3 deposition in dermal vessel walls under direct immunofluorescence. Of 19 patients, 57% had elevated serum IgE levels.⁴

In addition to the associated dermatologic findings, the deer ked is a vector of various infectious agents. Bartonella schoenbuchensis has been isolated from deer ked in Massachusettes.⁷ A recent study found a 75% prevalence of Bartonella species in 217 deer keds collected from red deer in Poland.⁵ The first incidence of Borrelia burgdorferi and Anaplasma phagocytophylum in deer keds was reported in the United States in 2016. Of 48 adult deer keds collected from an unknown number of deer, 19 (40%), 14 (29%), and 3 (6%) were positive for B burgdorferi, A phagocytophylum, and both on polymerase chain reaction, respectively.³

A recent study from Europe showed deer keds are now more frequently found in regions where they had not previously been observed.⁸ It stands to reason that with climate change, L cervi and other disease-carrying vectors are likely to migrate to and inhabit new regions of the country. Even in the current climate, there are more disease-carrying arthropods than are routinely studied in medicine, and all patients who experience an arthropod assault should be monitored for signs of systemic disease.

Category:

Anaplasmosis, Babesia, Bartonella, Lyme, research, Ticks, Transmission, Tularemia

We Should Not Have to Fight So Hard For Lyme Care

https://www.lymedisease.org/monica-white-wg-comments/

To TBDWG: We should not have to fight so hard for Lyme care

Monica White delivered the following public comments to the Tick-Borne Disease Working Group on July 19.

My name is Monica White. I’m president/co-founder of Colorado Tick-Borne Disease Awareness Association. I’ve lived with chronic Lyme, co-infections and conditions for nearly 16 years, due to lack of an early diagnosis and treatment.

Formerly a fully functional wildlife biologist and wildland firefighter for the US Forest Service, I am functional now only with repeated courses of combined antibiotics, antimicrobial, and immune therapies.

I recently relapsed with tick-borne illness after a period of no treatment. And again, even with current positive lab results in hand, I was met with dismissal from mainstream medicine.

When I had an enlarged liver and spleen during another extended hospital stay, the infectious disease doctor wrote in my report–and I quote–“I highly doubt this is in anyway related to either Lyme disease or babesiosis.”

I again left hospital care without a diagnosis. And I’ve again made improvements in my health only with re-treatment for tick-borne diseases. This dismissal of TBDs in the differential diagnosis is commonplace for TBD patients, especially those with chronic or persistent disease.

Though persistence of pathogens is shown in multiple studies conducted by respected researchers in the community, some on this panel–and is found in both animals and humans–findings have thus far been ignored or disputed by many members of this panel each year. It is past time to settle the science on this issue for:

patients that don’t get early accurate diagnosis and treatment.
patients that fail short course single antibiotic/antimicrobial therapies;
patients that are overlooked for have co-infections or tick-borne conditions,
and patients that do not respond to currently available therapies.

Maternal-fetal transmission

Maternal-fetal transmission of many TBDs is a fact, but research is lacking in diagnostics and treatment before irreparable damage has occurred. My own children acquired Lyme and co-infections congenitally, and both suffered from delayed diagnosis and treatment, as well as from multiple relapses of disease.

The resources available to patients have been… and continue to be…. INADEQUATE. Our medical system is failing these patients. This has ramifications that go so far beyond my individual story.

We should not have to fight as hard as we have… for as long as we have…to get government funded reliable direct diagnostics and curative treatments for acute and persistent disease!

Individuals…families…OUR children have been losing EVERYTHING for DECADES due to the lack of attention to the seriousness and the debilitation that Lyme, other TBDs and conditions have on those infected or exposed.

There is no excuse for patients having to spend months, years, or decades seeking accurate diagnosis and treatment, with crippling physical health, mental health, financial burdens, loss of careers, and relationship stresses beyond what many families can endure.

No one should suffer the way I have suffered…the way my children have suffered… and the way that the patients I share a voice for…have suffered.

Patient’s needs MUST be the priority of the Working Group for this final phase of the panel!

Thank you.

In addition to co-founding the Colorado Tick-Borne Disease Awareness Association, Monica White has served on a subcommittee of the federal Tick-Borne Disease Working Group, and on other governmental panels.

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**Comment**

Fighting “hard” isn’t nearly as important as fighting “smart,” and the Lyme/MSIDS community continues to work with the very people and organizations behind the corruption, denial, and fraud.

Time to support independent scientists who are not being gagged and who are not biased and part of the machine.

Category:

Activism, Lyme

COVID Risks May Be Heightened by History of Lyme Disease

https://www.news-medical.net/news/20220717/COVID-19-risks-may-be-heightened-by-history-of-Lyme-disease

COVID-19 risks may be heightened by history of Lyme disease

By Dr. Sanchari Sinha Dutta, Ph.D.

Jul 17 2022

Reviewed by Benedette Cuffari, M.Sc.

In a recent study published on the preprint server Research Square*, researchers report that individuals with a history of Borrelia infection, otherwise known as Lyme disease, caused by tick bites are at a higher risk of severe coronavirus disease 2019 (COVID-19).

Study: Correlation between COVID-19 severity and previous exposure of patients to Borrelia spp. Image Credit: Kateryna Kon / Shutterstock.com

(See link for article)

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SUMMARY:

Serological testing is not sufficient to differentiate between recent and past infections because antibodies persist in the blood – even after treatment. What the article doesn’t say is that THIS, RIGHT HERE, is why current CDC 2-tiered testing should never be used solely to diagnose patients and why doctors need to be educated to make correct clinical judgments.
What started the whole ball of wax is a case report of a patient infected with Lyme who was unsuccessfully treated with one round of antibiotics and who then got COVID. The patient’s Lyme was suppressed (lower IgG test) due to the anti-COVID meds (umifenovir, hydroxychloroquine, azithromycin, and ceftriaxone).
The study included:
- 31 severely ill & hospitalized patients who were either required non-invasive or invasive ventilation.
- 28 COVID positive patients who had either mild or asymptomatic cases who were either treated at home or unaware of infection.
- 28 seronegative controls
Serum samples were collected for COVID and Borrelia infections
- A multi-antigen microblot-array utilizing 19 antigens revealed Lyme in all hospitalized COVID patients.
- Of the 28 mild or asymptomatic patients, 19 had Lyme, whereas in the control group of 28, 8 had Lyme.
- Severe COVID patients also had significantly higher levels of antibodies targeting Anaplasma.
Regarding seropositivity for IgM antibodies (1st antibodies to show up after infection that stay for a short period of time):
- 24 of the 31 hospitalized patients had Lyme antibodies
- 13 of the 28 mild/asymptomatic patients had Lyme antibodies
- 15 of the 28 in the control group had Lyme antibodies
Risk of COVID-related hospitalizations increased with each positive IgG (antibodies produced later on in infection and can remain after infection resolves. Having high IgG can be indicative of chronic Lyme), but was not observed for IgM.
Post-hoc analysis of selected antigens (Osp proteins, p41, and VlsE) was also
included; multivariate analysis showed that odds of hospitalization increased with increasing levels of:
- IgG antibodies targeting OspB, OspC B. burgdorferi sensu stricto, and OspC
  B. spielmanii
- For IgM antibodies, the same association was observed for antibodies targeting OspC B. spielmanii and OspE
Interestingly, the authors state that they observed in many patients antibodies targeting different species (e.g. B. burgdorferi sensu stricto, and at the same time
B. afzelii, and/or B. garinii) which may reflect cross-reactivity but also may result from coinfections with more than one species.
Previous exposure to Lyme and other tick-borne diseases can increase risk of severe COVID and this is the first observation that suggests links between Lyme disease and COVID-19 prognostics.
The authors state that screening of anti-Borrelia antibodies in COVID patients could identify high-risk patients and improve their management.

Journal reference:

Szewczyk-Dabrowska, A., Budziar, W., Harhala, M., et al. (2022). Correlation between COVID-19 severity and previous exposure of patients to Borrelia spp. Research Square. doi:10.21203/rs.3.rs-1799732/v1.

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**Comment**

This is a very interesting study but I come up with slightly different take-aways. The first of which is – don’t let this article frighten you. 1) there are cheap, effective, safe treatments for COVID. Far safer & cheaper than Lyme/MSIDS treatment! 2) it only makes logical sense that those with Lyme/MSIDS are sitting ducks for pretty much everything including highly contagious viruses (if that’s what this even is). Lyme/MSIDS patients already struggle with EBV, Herpes, cytomegalovirus, and much, much more. You are not a hopeless, helpless victim. There are answers and actions you can take to protect yourself and treat yourself should you contract COVID.:

The case study states that the person’s Lyme was suppressed due to anti-COVID meds, yet list antibiotics (ceftriaxone & azithromycin) that are used often for Lyme – which would explain the suppression. Suppression doesn’t mean the Lyme goes away, it just means it isn’t being picked up on the test – a common, well-known problem patients deal with on a daily basis.
HCQ was used, which is also used for Babesia, a coinfection they didn’t look for but is known to cause much more severe Lyme for a greater duration IF the patient has both infection concurrently.
And Umifenovir is a broad‐spectrum antiviral, which while it doesn’t treat Lyme directly, could assist by beating back other viruses like herpes, EBV, and others – all of which are big players in Lyme. Treating Lyme/MSIDS is a balancing act. Giving appropriate treatment to beat back infections and supporting your immune system to handle what’s there without freaking out is more in line than a “cure” of erradicating everything within you. We are covered in germs/viruses and most are held in check by our immune system. A tick/insect bite changes that balance (or other modes of transmission such as congenital or sexual, etc)
They looked for 19 antigens which is unheard of for average folk!
They found Lyme (antibodies) in nearly everyone – even the controls! This, to me, is the real finding.
Their suggestion to “screen for anti-Borrelia antibodies in COVID patients” to identify potential “high risk” patients only has one flaw: testing sucks and is not to be trusted!

Category:

Activism, Lyme, research, Testing, Treatment, Viruses

Tick-Related Disease Can Trigger Chemical Sensitivities

https://www.lymedisease.org/wallace-tbdwg-mcs/

To TBDWG: Tick-related disease can trigger chemical sensitivities

Kathleen Wallace gave the following public comments to the Tick-Borne Disease Working Group on July 19.

I have been an active listener and participant in public comment since inception of the Tick Borne Disease Working Group. I thank each of you for your hard work and dedication. It is much appreciated.

Objectives as defined in the 21st Century Cures Act include gaps in the tick-borne disease research. I speak again about one of those gaps–MCS or Multiple Chemical Sensitivities.

MCS is a medical condition characterized by adverse health effects from exposure to common chemicals and pollutants from products such as pesticides, new carpet, paint, renovation materials, diesel exhaust, cleaning supplies, perfume, scented laundry products and air fresheners. (1)

The symptoms of MCS are diverse and unique to each person. Symptoms range from mild to life threatening and include headache, trouble concentrating, nausea, diarrhea, fatigue, muscle and joint pain, dizziness, difficulty breathing, irregular heartbeat and seizures. (2)

With MCS we lose the ability to use public transportation, public housing, or hotels. We are unable to participate in many community activities. The social impact is gruesome. Our quality of life is significantly degraded, Access to healthcare can be difficult as we have to tolerate hospital and office air.

Our needs regarding MCS are vast. We need a medical code. We need research. We need education for physicians. We need better air quality control.

My passion to make a difference has grown through my journey. I was a successful business owner and manager for a national company. I lost my home, my business, and my family life because of MCS. Resilience has become my middle name.

Many “don’t believe in” MCS

One of the most challenging issues to navigate through has arisen from physicians, family and friends not believing in my MCS. Many chose to ignore pleas to use MCS friendly products on themselves and their clothing. Imagine spending all your holidays in complete solitude: it is not fun.

You speak of equality in tick-borne disease and conditions, however, the syndrome of MCS remains to be investigated.

This 2022 clinical presentation and pathogenesis subcommittee report’s priority #3 focuses on alpha-gal syndrome. I couldn’t agree more. However, there’s no mention of other difficult syndromes associated with tick-borne disease.

Also shared by this TBDWG–results of clinician-encountered barriers including scientific knowledge gaps that identify alpha-gal syndrome–but again, no mention of other syndromes.

Please note that MCS is the pure definition of invisible illness.

Part of your core values is collaboration. To actively listen to the patient experiences shared with you, respect the lived experiences of patients and their advocates and to learn from these experiences in your pursuit of objective truth.

I live the experience, while science can provide research.

I suffer daily. Please include MCS in your areas for discussion. Thank you for your time.

Kathleen Wallace lives in New York state.

References

1. Dr. Anne Steinemann, Journal of Occupational and Environmental Medicine, March 2018 volume 60 Issue 3 pg.152-156

2.Anne McCampbell, M.D. Co-chair of the MCS task force of New Mexico. New Mexico MCS brochure by the MCS task force of New Mexico 11/00

Category:

Activism, Lyme

Lyme & Pregnancy

https://lymediseaseassociation.org/blogs/lda-guest-blogs/sue-faber-rn-bscn-guest-blog-lyme-pregnancy/

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

May 22, 2021

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 Overturned Published 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 6^th, 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