Archive for the ‘Lyme’ Category

Avril Lavigne’s Comeback From Lyme

https://www.the-sun.com/entertainment/3133702/avril-lavigne-age-lyme-disease-2/

How old is Avril Lavigne and when was she diagnosed with Lyme disease?

Joe Brophy

Jun 22 2021

AVRIL Lavigne is about to drop her huge comeback album Head Above Water after years spent battling Lyme disease.

The iconic noughties star opened up about her experience with the life-threatening disease that kept her out of the limelight for several years. Here’s all you need to know… (See link for article)

Avril Lavigne has opened up about her battle with Lyme disease
Avril Lavigne has opened up about her battle with Lyme disease  Credit: AP:Associated Press

Important excerpts:

  • The pop-rock star left the spotlight after being diagnosed with the life-threatening illness in 2015.
  • The process is far longer and more difficult than most realize.
  • She wrote: “Five years have gone by since I released my last album. I spent the last few years at home sick fighting Lyme disease.”

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For more:

Category:

Activism, Lyme, Uncategorized

Can A Tick Be Tested For Lyme Disease? And How I Overcame My Fear of Ticks

https://danielcameronmd.com/cant-count-testing-engorged-ticks/

CAN A TICK BE TESTED FOR LYME DISEASE?

Researchers examined the prevalence of ticks in the Quebec region, along with the frequency of engorged ticks carrying Borrelia burgdorferi (Bb), the causative agent of Lyme disease. Their findings suggest that tick testing may not always be an effective tool in determining the risk of infection.

By 
Ticks can be tested for the Lyme disease bacteria and other tick-borne pathogens. But the accuracy of test results may depend on a ticks lifecycle stage.

A study by Gasmi et al. found that results may not be accurate when testing ticks which are engorged. [1] The authors examined 4,596 I. scapularis (blacklegged) ticks removed from individuals living in Quebec.

They found that 24.9% of the non-engorged blacklegged ticks were infected with Borrelia burgdorferi (Bb), the causative agent of Lyme disease.

Engorged ticks were expected to have an even higher rate of infection with the Lyme disease bacteria. But the prevalence was much lower with only 8.9% of engorged ticks testing positive for the Lyme disease agent. These findings are consistent with those from another Canadian study. [2]

Engorged ticks were expected to have an even higher rate of infection with the Lyme disease bacteria. But the prevalence was much lower.

It is still unclear why testing of engorged ticks is not accurately revealing the higher prevalence of Bb infection. The authors suggest that it could be due to the presence of inhibitors in the blood meal [3] or problems with the collection and transportation of engorged ticks.

Perhaps these findings were “due to simpler reasons such as the greater likelihood that un-engorged ticks remained alive up to DNA extraction, while engorged ticks may well have died days or weeks before testing,” noted Gasmi.

In other words, a tick can be tested for Lyme disease but it isn’t always a reliable tool in determining your risk of infection. If an engorged tick is removed and tested, it is likely to be negative for the Borrelia burgdorferi bacteria.

References:
  1. Gasmi S, Ogden NH, Leighton PA, Lindsay LR, Thivierge K. Analysis of the human population bitten by Ixodes scapularis ticks in Quebec, Canada: Increasing risk of Lyme disease. Ticks Tick Borne Dis. 2016.
  2. Dibernardo A, Cote T, Ogden NH, Lindsay LR. The prevalence of Borrelia miyamotoi infection, and co-infections with other Borrelia spp. in Ixodes scapularis ticks collected in Canada. Parasit Vectors. 2014;7:183.
  3. Wilson IG. Inhibition and facilitation of nucleic acid amplification. Appl Environ Microbiol. 1997;63(10):3741-3751.

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**Comment**

Great reminder that yet again, testing is an imperfect tool for all things Lyme/MSIDS related. This inability to positively identify the presence of infections has plagued doctors and patients alike, but must be accepted and contended with, which is why experienced doctors understand the importance of diagnosing patients clinically based upon symptoms.

Further, I often remind frustrated patients that even IF their test or tick test were to come back positive, it’s highly unlikely they will be treated appropriately as there is often coinfection involvement which requires different medications as well as the fact 28 days or less of the doxycycline monotherapy has failed repeatedly – yet is still used despite evidence to the contrary.  

If you suspect you are infected, get to a Lyme literate doctor asap.  It will save you money, time, and heartache in the end.

For more:

https://rawlsmd.com/health-articles/overcome-your-fear-of-ticks-and-get-outside?

by Dr. Bill Rawls
Updated 6/25/21

Considering that my life was totally disrupted by chronic Lyme disease for more than ten years, you might find it alarming to learn that I walk in the woods with bare legs. And although this might sound risky, I haven’t had any tick bites since my recovery. I’ve had ticks on me, but I haven’t been bitten.

Like many people who contract Lyme, my aversion to ticks kept me removed from nature. So what finally changed my fear?

I became tick aware — doubling down on prevention and keeping tabs on where I go, how I go, when I go, and what I do before and after I go to minimize risk factors. And in the end, my love of the outdoors prevailed. Being in nature is where I’ve always gained strength, and I had to find my way back to heal fully.

Finding My Way Back Nature

My first foray back into nature began at the beach at a state park near my home. Long walks were perfect for generating endorphins, and the sea air did me good. However, as my strength improved, I needed more of a challenge, so I began venturing onto the trails that wove through the tall grasses of the sand dunes and maritime forests of the park.  (See link for article)

Category:

Lyme, research, Testing, Ticks

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

SueFaberbyStef&Ethan

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 Publish Risks Adverse Outcomes  As there has been no new research in over 20 years which has negated, questioned or overturned the published findings of earlier investigators, these precautionary statements should be clearly communicated.  This is highlighted by the tenants of the Precautionary Principle and clearly communicated in a Health Canada Framework on Managing Health Risks which states: [xxviii] ‘A key feature of managing health risks is that decisions are often made in the presence of considerable scientific uncertainty. A precautionary approach to decision making emphasizes the need to take timely and appropriately preventative action, even in the absence of a full scientific demonstration of cause and effect.’ Both the public and healthcare practitioners should be made aware of these documented risks of adverse pregnancy outcomes and of in-utero transmission of Lyme itself, even if considered rare.  I have asked Canadian Public Health Agency officials for rationale as to why this guidance was removed and continue to await an evidence-based response.

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

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

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

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

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

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

Footnotes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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For more:

Category:

Lyme, Pregnancy

Stomach Pain Can Be a Symptom of Lyme Disease

https://danielcameronmd.com/neurologic-lyme-disease-presenting-as-abdominal-pain-in-71-year-old-patient/

STOMACH PAIN CAN BE A SYMPTOM OF LYME DISEASE

woman with stomach pain from lyme disease

“Although abdominal pain is generally not considered a sign of LD [Lyme disease], in this case report we describe a patient with unexplained severe abdominal pain that eventually turned out to be LD due to radiculopathy,” explains Stolk from the Haga Teaching Hospital in the Netherlands. [1]

By 

The 71-year-old woman underwent an exhaustive evaluation to determine the cause of her abdominal pain. Tests included: CT scan of the chest and abdomen; whole body emission tomography-CT scan (PET-CT); colonoscopy; gastroscopy, and an MRI of the small intestines. Initially, doctors did not consider testing for Lyme disease as a cause of the patient’s stomach pain.

The woman was admitted to the hospital for pain management and other diagnostic workups.

READ MORE: Lyme disease manifests as abdominal pain in a young child

Approximately 8 weeks prior to her hospitalization, she experienced temporary lower back pain, myalgia, fever, burning sensations and tenderness on her head and upper legs and moderate stomach pain. Several weeks later, her abdominal pain worsened.

“Going over the history again, she emphasized that she had stayed in a high endemic area for ticks and had suffered a possible tick bite without any sign of erythema migrans,” writes Stolk and colleagues.

Lyme disease associated with stomach pain

Serologic testing and a spinal tap were consistent with Neurologic Lyme disease. The spinal tap revealed an elevated IgM antibody to Borrelia burgdorferi (Bb), a lymphocytic pleocytosis, markedly elevated IgM antibody index to Bb, and markedly elevated IgG antibody to Bb.

The authors point out that “Since the incidence of LD is rising it is important to realize that severe abdominal pain could be the first clinical manifestation of early neuroborreliosis.”

After a 2-week course of intravenous ceftriaxone to treat Lyme disease, the woman’s symptoms, including stomach pain, resolved completely.

This case demonstrates the importance of re-examining a patient’s history when symptoms cannot be explained, the authors point out.

“Instead of doing extensive diagnostic tests, it is important to scrutinize the patient’s medical history in the presence of unexplained clinical signs.”

The authors note: Abdominal pain in the presence of facial paralysis has been described in Europe as Bannwarth Syndrome.

Editor’s note: I often see Lyme disease patients in my practice who present with stomach pain severe enough to warrant extensive diagnostic testing before Lyme disease is suspected.

UPDATED: May 28, 2021

References:
  1. Stolk JM, van Nieuwkoop C, van der Voorn M, van Erp S, van Burgel ND. Ticking off diagnoses of abdominal pain: early neuroborreliosis with radiculopathy. Neth J Med. 2018;76(7):336-338.

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Lyme, Pain Management, research, Treatment

Pediatric Bipolar Disorders & Tick-borne Illnesses

https://www.lymedisease.org/pediatric-bipolar-disorders/

Pediatric bipolar disorders and tick-borne illnesses

July 23, 2021

By Rosalie Greenberg, MD

Pediatric Bipolar Disorder (PBD) refers to a child or adolescent experiencing a distinct period of time in which he or she has changes in mood, energy, thought and behavior that can have a significant effect on the youngster’s ability to function.

This diagnosis, like most, is on a spectrum. A young person can have manic episodes with or without depressive episodes. This is called Bipolar I. Or, the child can have episodes of depression with only mild hypomanic episodes (not as severe as mania and which don’t require psychiatric hospitalization.) This is called Bipolar II.

Other Specified or Unspecified Bipolar and Related Disorder are two other categories that are used when the full criteria for the diagnosis are not met. In the past, this was called Bipolar Disorder Not Otherwise Specified (NOS).

Making a diagnosis

The symptoms required to make the diagnosis of a manic episode are the following: a clear period of abnormally elevated or irritable mood and heightened energy or activity lasting at least a week (or less if hospitalized) accompanied by three or more of the symptoms below (four if only irritable):

  • Decreased need for sleep
  • increased self-esteem or grandiosity
  • More talkative or pressured speech
  • Flight of ideas (loosely connected thoughts) or feeling like one has racing thoughts
  • Distractability
  • Increase in goal-directed activity or overall heightened psychomotor agitation
  • Increased impulsivity that can cause excessive involvement in activities that have a high potential for painful consequences

In the majority of cases, the cause of bipolar disorder is uncertain. But it is probably a mixture of genetics, the environment (including exposure to certain infections) and immune system dysfunction.

A few infectious agents have been accepted as being directly associated with bipolar disorder symptoms. Two of these are:

  1. the parasite Toxoplasmosis Gondii which causes toxoplasmosis
  2. the spirochetal (corkscrew shaped) bacteria, Treponema Pallidum which causes syphilis

Of note, both syphilis and Lyme disease (caused by Borrelia burgdorferi), are caused by a spirochete-shaped bacteria and they share a variety of other commonalities.

The Borrelia bacteria has more DNA and is much more complex in composition and function. Individuals who experience late stage, or tertiary, syphilis can exhibit manic-like behavior, which also can be seen at times in those with neurologic Lyme disease.

PANDAS/PANS

For a while, I was looking at new patients for any evidence of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) or Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

The former refers to a group of psychiatric symptoms precipitated by a Group A Beta Hemolytic Streptococcal infection. In the latter, the cause remains unspecified and might include factors such as infections, trauma and environmental toxins.

Because of the similarities I observed between PANDAS/PANS  and PBD, I started to check some of my PBD patients for evidence of infection.

One such patient was P, an 11-year-old, who came to see me following four psychiatric hospitalizations over the course of one year, because of difficulty with mood shifts, oppositional behavior and verbal and physical aggressive outbursts.

He was diagnosed as having PBD, attention-deficit hyperactivity disorder (ADHD) – combined type and oppositional defiant disorder. His difficulties had only mildly improved despite multiple psychiatric medication trials.

I first saw him after his last hospitalization.  At that point, he was no longer acutely dangerous to himself or others but had limited self-control and awareness.

I learned that his family history was strongly positive for bipolar disorder in at least three generations. Alcoholism was present in both maternal and paternal relatives. Furthermore, there were a variety of autoimmune disorders in relatives on both sides of the family tree.

After eight months of medication treatment under my care as an outpatient, he suddenly once again became highly agitated, argumentative and threatening. It was clear that he could not continue to live at home unless his behavior drastically changed

High strep titers

Despite the fact he had been healthy, with no known medical history of a Streptococcal infection (the bacteria responsible for causing strep throat), I decided to check him for evidence of infection causing PANDAS or PANS. To my surprise, his strep titers were quite high and he was subsequently diagnosed with PANDAS.

A few months of treatment with antibiotics eventually resulted in a dramatic change. His mood was happier and more even, he was much less oppositional, more affectionate and he even became a more diligent student.

He was on a low dose antibiotic prophylactically to protect against recurrent streptococcal infection. This protective approach is similar to what occurs in those with rheumatic heart disease.

Over time, P’s negative behavior would return and escalate on occasion if he was exposed to someone who was sick. But his symptoms usually responded quickly with anti-inflammatory treatment or, if needed, a change in antibiotic.

Bartonella

When P was in the 8th grade, he had a severe angry depressive episode. By this time, I had become familiar with tick-borne disorders and their potential neuropsychiatric effects. On testing, he was positive for the bacteria Bartonella henselae.

Once again, proper antibiotic treatment resulted in a significant lessening of his psychiatric symptoms. It is important to note that he also needed an antipsychotic and anticonvulsant for mood maintenance whether or not he was taking antibiotics.

Given the observation that P’s mood and behavior dramatically changed once his infections were identified and properly treated, I decided to screen many of my new patients for evidence of infection.

To my surprise, I found evidence of infections in the majority of those newer patients who underwent blood testing during psychiatric evaluation.

I am known as being an expert in pediatric bipolar disorder, having written Bipolar Kids: Helping Your Child Find Calm in the Mood Storm, as well as having lectured to the public and professionals and written a variety of articles for both groups.

It’s important to keep in mind that my practice is somewhat atypical in that it experiences what is called “a referral bias,” with many parents coming to see me to determine whether or not their child really has bipolar disorder.

Once I kept finding evidence of infections, and often positive mood or behavioral changes when the newly discovered illnesses were addressed, I decided that it was important that I go back and check for infections in my bipolar patients with whom I had worked for years.

Again, I was surprised to find that many of these kids also tested positive for evidence of infection, especially tick-borne illnesses (TBIs).

Tick-borne illnesses

Ten years ago, I learned that New Jersey, where my practice is located, is a Lyme-endemic state. But how was it possible that so many of my patients tested positive? Maybe the testing was wrong? I even submitted samples of my own blood to two of the specialty laboratories (Igenex and Galaxy Diagnostics) to check the accuracy of the testing and found the results quite credible for a variety of reasons.

I also noted that as I kept learning more and more about Lyme and the other TBIs at different specialized meetings, I often heard presentations of adult patients who were diagnosed with bipolar disorder and later found to be suffering from some form of tick-borne illness. This sounded just like “my kids.”

With this experience as my background, I decided to do a retrospective chart review to determine the rate of evidence of tick-borne infection exposure in 27 consecutively seen bipolar youth whom I treated between February 2013 and July 2015.

Of the 27, 81% (22/27) were males and 19% (5/27) were females with an average age of 7.3 years. Fifteen of the kids were diagnosed as having Bipolar I (had manic episodes) and 12 had Bipolar II (episodes of depression with periods of hypomania).

Using a variety of different laboratories, blood testing was done to check for evidence of exposure to Group A Beta Hemolytic Streptococcal bacteria, and other infectious agents including Mycoplasma pneumoniae (which can cause walking pneumonia), Borrelia burgdorferi (Lyme disease), Babesia, Bartonella, Anaplasma and Ehrlichia.

24 out of 27 bipolar children had TBIs

In the end, 89% (24/27) showed evidence of exposure to one or more of these pathogens (infectious agents). The frequency of the positive testing results in the 27 bipolar child patients were as follows:

  • Babesia =16
  • Mycoplasma pneumoniae = 11
  • Bartonella = 8
  • Lyme = 6
  • Anaplasma + Ehrlichia = 1

All individuals who had a positive test were recommended to see a doctor familiar with TBIs to determine if the patient should receive the clinical diagnosis and get appropriate treatment.

Twenty-two of the 24 agreed to this assessment. All of those children who followed the recommendation and sought consultation were found by the evaluating physician to meet the clinical criteria for the diagnosis of having TBIs.

In the end, 20/27 or 74% of those with PBD were positive for TBIs by both laboratory testing and clinician assessment. Four of the 27 (23.5%) patients tested were positive for PANDAS. Another important observation is that only three of the 27 with PBD had a known tick bite.

The results are clearly quite provocative. It’s important to keep in mind that the association found between TBIs and PBD does not mean there is a causal relationship. Interestingly, for some children, treatment of their TBIs resulted in variable degrees of improvement of their psychiatric symptoms.

The case of P, presented earlier, is a clear example of how treating the infection improved the child’s mental health. Studies are needed before making a definitive statement regarding the neuropsychological effects of treating underlying infections. It would be wrong to generalize the results from a small, specialized psychiatric practice without more evidential support from other pediatric populations.

“Bipolar-like” symptoms

I also noted that some of the kids in my practice exhibited what I call “bipolar-like” symptoms. They clearly do not fit the full criteria for a bipolar mood disorder. Yet, they exhibit definite elements consistent with a significant amount of mood unsteadiness, especially depression, as well as exhibit similar co-morbidity to youth with PBD.

The potentially accompanying psychiatric illnesses include anxiety disorders (e.g. obsessive-compulsive disorder [OCD] and separation anxiety), ADHD and behavioral disturbances with intense temper outbursts.

I can’t help but wonder how many of these children have been given the diagnosis of Disruptive Mood Dysregulation Disorder (DMDD) by other psychiatrists.

This particular diagnosis was created as a way to help identify children who did not show clear mania or hypomania but who struggle with long standing temper dysregulation, sadness and irritability. Could many of them be in this “bipolar-like “ group? Again, the answer requires more study.

The natural question from these findings for both parents and professionals is: Does treating the TBIs make any difference in how these kids actually end up functioning in real life?

Observations

Without more research, I can only comment about what I have observed in my practice with these children. There appears to be three groups:

  1. Kids who are treated for their bipolar symptoms as well as TBIs who at some point are able to do well once the infections are resolved or at least controlled. Their psychiatric symptoms appear to have been eliminated or significantly lessened enough that over time they can stop all psychiatric medication. This group is fairly small but definitely exists.
  2. Kids who are treated for BPD and TBIs but require less psychiatric medication (yet still need some) when their infections are under better control. One clue that the psychiatric medication can be lowered is the occurrence of side effects from the psychiatric medication (e.g. new onset of lethargy and sleepiness) that were previously not present while the child appeared to benefit from that dose of medication in the past.
  3. Kids who are treated for BPD and TBIs but still require significant doses of psychiatric medications as their infections come under better control.

Therefore treating the underlying psychiatric illness has the potential to change the long-term outcome in some youngsters who manifest bipolar disorder symptoms and were exposed to tick-borne illnesses.

The true prevalence of TBIs in youth who reside in the geographical area where my practice is located is unknown. This data is crucial to be able to interpret properly what I’ve found in my patients.

To what extent do infectious agents and autoimmune processes contribute to the present escalation in child and adolescent mental disorders? The mounting evidence supporting the connections of infections, autoimmune processes and mental disorders appears significant and demand more scientific investigation.

Dr. Rosalie Greenberg is a Board-Certified Adult, Child and Adolescent Psychiatrist, known for her expertise in the diagnosis and management of complex psychiatric problems in children, and pediatric psychopharmacology. For the past few years, she has focused on the psychiatric manifestations of infectious diseases, especially, tick-borne illnesses in children and adolescents. Her website is rosaliegreenbergmd.com.

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Babesia, Bartonella, Lyme, Psychological Aspects, research, Treatment