Lymescape Survey – a Call to Action

[CanLyme Note: This survey was funded in part by the Canadian Lyme Disease Foundation through Mount Alison University in New Brunswick who also provided in-kind IT support, and the New Brunswick government’s SEED program. LymeNB’s volunteers put an enormous amount of effort into this project while collaborating with the university.]

The impacts of the COVID-19 pandemic are chilling:  the patients infected; the lives lost; the pressures on our healthcare services; social costs of disrupted lives; and costs to our economy.  Our families, communities, provinces, and countries are united in hope and in collective actions to protect and care.

In the midst of COVID-19, we must not forget another disease that has devastated the lives of New Brunswickers – for which there is no united front. The impacts are similar, but Lyme disease is a silent epidemic in our province that our government and healthcare system have yet to acknowledge.

Unlike COVID-19, Lyme disease has been around for decades.  And, contrary to government statistics, it is well established. An October 2018 peer-reviewed research study in Healthcare used three scientific methods applied to active infection rates in dogs and ticks in New Brunswick to show that official case counts in humans are likely only 3 to 4 % of actual Lyme disease cases.

This means, New Brunswick, that we have a problem.  This means that instead of the 35 laboratory confirmed cases reported in 2019, over 1000 New Brunswickers were likely infected last year alone – and our healthcare system isn’t recognizing them. It means our physicians are not aware of the faulty nature of Lyme disease testing and are not trained adequately on how to diagnose the disease.  It means many physicians are still telling patients “there is no Lyme disease here.” It means that untreated, infected patients face a long, lonely, heartbreaking battle.

LymeNB has met and spoken with hundreds of New Brunswickers whose lives were side swiped by Lyme disease.   Most have their own horror story of getting to the right diagnosis and the right treatment. The stories are hard to hear.  In early 2019, LymeNB published over forty such stories in Faces of Lyme in New Brunswick.   We hoped that the scientific evidence and the stories would result in action.

In May 2019, LymeNB co-hosted a roundtable and presented the science and stories to government officials and healthcare providers.   They applauded appropriately.  They nodded their heads at the gravity. They offered platitudes to those stricken. But nothing changed.  Right there in the session, “official” voices brushed off the evidence with clever jargon that misrepresented and buried the science. The experience of patients was written off as anecdotal.   Problem solved.   For the officials, there is no problem –the 35 real cases were cared for and they are sorry about other New Brunswickers who feel they are ill.  There has been a vacuum of official silence and inaction ever since.

But we live in hope and have taken further action.  In the spring of 2019, LymeNB and Mount Allison University issued a 2019 Lymescape Survey to gather data from New Brunswickers with Lyme and associated diseases. The survey represents a masterclass in successful community collaborative research.

The data provides further evidence that Lyme disease is, indeed, a serious problem in New Brunswick. The data comes from the patients themselves, and speaks of their experience in this province.

Patients resided across the province. Most came from coastal areas (Fundy and Acadian coasts) and from the mid-to-southern border with Maine through to our provincial capital, and along the Saint John River.  Lyme disease did not discriminate; it hit all genders (64% female) and ages (from 12-74), and a range of ethnicities, educational backgrounds, income levels, and living arrangements.

Some patients (17%) had outdoor occupations with a high risk of infection, such as landscaping, farming, conservation, land surveying, and logging.  Most patients (93%) enjoyed one or more at-risk outdoor leisure activities, such as camping, gardening, or hiking.  Almost half of patients (47%) had family members with Lyme disease.

A minority of patients (30%) recalled a tick bite; most of these (62%) were not treated based on the bite.  Either as a result of inadequate dosage levels or treatment length, all patients who received treatment for a bite developed more complex symptoms over months or years.

Many patients (43%) had a rash, although 67% of these were not the classic, bullseye rash often indicated (inaccurately) as the only type of rash associated with Lyme disease. Current provincial guidelines describe the bullseye rash as a definitive diagnosis of Lyme disease and direct that treatment can proceed without testing.  Yet, few patients with the bullseye rash (12%) were treated based on it.

Half of patients (51%) developed symptoms within four weeks of infection, while others (33%) had their symptoms emerge only after a later -mmunosuppressive event or trauma (e.g., a cold, flu, bronchitis/pneumonia).  Most patients (69%) experienced 10 or more symptoms at onset.

Almost all patients (98%) saw four or more doctors before getting a diagnosis; 30% saw more than 10 doctors. Patients experienced silos of assessment; on average, patients were referred to multiple specialists and had six diagnostic tests (beyond bloodwork) or medical procedures before getting their Lyme diagnosis elsewhere. Patients received X-rays (86%), MRIs (72%), cardiac testing (such as, EKGs, echocardiograms, stress tests), and CAT scans (61%).  Our healthcare system worked on overdrive with referrals and testing, when careful and trained evaluation of symptoms and health history was the key.

Only 6 % of patients were diagnosed within three months of symptom onset; beyond this, the disease is considered late stage.  Most (84%) were misdiagnosed; on average, patients received 4 different diagnoses before their final diagnosis.  On average, patients were diagnosed 9 years after onset of symptoms.  The delay in diagnosis had a tremendous cost to patient health and lives.

Most patients had to leave the province for diagnosis and care, at an average annual healthcare cost of $13,000.   Yet, these patients are the ‘lucky ones’, in that, despite the many barriers, they were able to find their way to the right diagnosis and care.  Most of the ‘lucky ones’ (68%) reported improved health status. The ‘unlucky ones’ are still chasing a diagnosis in New Brunswick or cannot afford to seek care outside New Brunswick.

The upcoming New Brunswick 2019 Lymescape Survey Report contains data that shows New Brunswickers need much better Lyme disease protection and care.  The report makes over two dozen recommendations, the first of which is to establish a consumer-directed stakeholder committee (patients, healthcare professionals, government representatives and researchers) to guide implementation of the other recommendations. The report is a call to action.  We must do better.

We are mindful of our province’s motto Spem reduxit or “hope restored.”  We ask those with the power to join us in restoring hope for quality care for all New Brunswickers – through action.

Janet Higgins, Founding President
LymeNB

3 Comments

  • THis is impressive and most valuable information. Thanks.

  • Janet Higgins says:

    Thank you CanLyme for posting this. We are very proud of this work and the very significant role we played from the design of the survey to the data cleansing and analysis to the writing of the final report. It has been a HUGE effort and we are grateful to those who responded to the survey and to our partner , Mount Allison University, and to CanLyme without whom we would not have been able to carry out such an ambitious project. We hope that it will shine a light on the much neglected needs of Lyme disease patients.

  • Rob Murray says:

    Well done Janet! You are making a difference and not just in New Brunswick. This is a political problem but our elected representatives hide behind their medical experts and refuse to lead. It has left Lyme patients, their advocates and treating physicians on one team and PHAC, public health officials, infectious disease doctors politicians and the insurance industry and politicians on the other. The patient voice is not being heard. Patients aren’t being harassed and threatened as often by infectious disease doctors. These self-appointed experts have been able to express just enough empathy for the suffering patients that it has been enough to convince politicians that they really do care. Too bad they won’t believe their patient’s and the scientists rather than relying on their own concepts of the disease.