Archive for the ‘Lyme’ Category

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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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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Category:

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

Lyme & TBD: Where Are We, 2021?

https://lymediseaseassociation.org/blogs/lda-guest-blogs/kenneth-liegner-md-lyme-tbd-where-we-are-2021/

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

May Awareness LDA Guest Blogger

Dr. Kenneth Liegner, MD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Category:

Activism, Lyme

5 Reasons Why You Should Care About Lyme Disease

https://www.globallymealliance.org/blog/5-reasons-you-should-care-about-lyme-disease

5 Reasons Why You Should Care About Lyme Disease

by Jennifer Crystal on May 4, 2021

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“The fact is, everyone should care about Lyme disease. Here are five reasons why.”

May is Lyme Disease Awareness Month. Some people may think, “Oh, I already know about Lyme disease. You only have it if you see a bull’s eye rash.” Or, “I don’t need to worry about Lyme disease, because I don’t live in New England.” These are myths about Lyme disease that are all too commonly heard. The fact is, everyone should care about Lyme disease.

Here are five reasons why:

  1. If you spend time outdoors, you are at risk.

Lyme disease used to be known for its prevalence in New England, as well as the fact that it is carried by deer. Both of those things are still true, but what people don’t always realize is that infected blacklegged ticks that carry Lyme disease are found across the country and world. Some ticks carry other diseases that are endemic to certain areas of the country, such as Heartland virus and Southern Tick-Associated Rash Illness (STARI). Moreover, in addition to deer, ticks also feed on other mammalian hosts such as mice, chipmunks, and birds. They don’t just live in the woods, either. They like to hide in tall grasses, leaf piles and on brush. Anyone who spends time outdoors is at risk for Lyme and other tick-borne diseases, and should take important precautions.

  1. Your children and pets are at high-risk for Lyme disease.

Do you have kids who like to play outside? Do you have pets who run through the woods? They are both at high-risk for contracting Lyme disease—and, your pets can bring ticks into your home, which can then infect you and your family. Children ages 3-14 are at the highest risk for Lyme disease, since they love to roll in the grass, explore in the woods, etc. Complications for both children and pets can be severe if Lyme is not detected and treated immediately. Like adults, children can develop cognitive issues, mood changes, sleep disturbances, and prolonged fatigue that can significantly impact their ability to focus in, or even attend, school. Here are specific prevention measures you can take for your kids and for your pets.

  1. If not treated early, Lyme disease can become seriously debilitating.

Most cases of Lyme disease that are treated immediately can be cleared up with a course of antibiotics, but some 10-20% of patients go on to experience persistent symptoms. And that’s for patients who are lucky enough to see a bull’s eye rash or whose doctor quickly recognizes their clinical symptoms. About 50% of people never see a bull’s eye rash, or any rash at all. Others present nebulous symptoms such as fatigue, or take months to develop other symptoms such as joint and muscle aches, fevers, and neurological impairments, which are often misdiagnosed; Lyme is considered “The Great Imitator” because its symptoms can mirror those of other conditions such as Multiple Sclerosis (MS) and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).

  1. Diagnosis and treatment can be complicated.

Lyme disease testing is notoriously faulty, since it only can detect antibodies against Borrelia burgdorferi (the pathogen that causes Lyme disease), not the bacteria itself. Many patients either get misdiagnosed, as described above, or not diagnosed at all. Their Lyme disease then progresses to later, more complex and systemic stages. It then becomes more difficult to treat. Treatment can also be complicated by co-infections that require different treatment—some doctors don’t know to test for co-infections in addition to Lyme disease—as well as an individual’s immune response. Each person’s case of tick-borne illness is different, and requires an individually tailored protocol.

  1. Ticks DON’T ONLY carry Lyme disease.

As mentioned above, ticks can carry other illnesses, commonly referred to as co-infections. Some of these include babesiosis, anaplasmosis, ehrlichiosis, and possible bartonella. Some require different treatment than Lyme disease (for example, babesiosis is a parasite that is treated with anti-malarial medication). They also can be more difficult to get rid of, even when caught early. If you have Lyme disease and have not been tested for co-infections, you may only be fighting half the battle.

According to the Centers for Disease Control and Prevention (CDC), approximately 476,000 people are diagnosed and treated for Lyme disease every year. That’s more than breast cancer and HIV combined. Lyme and other tick-borne diseases are a serious health threat. The more people are aware of Lyme, the greater chance they’ll have of taking good preventative measures and/or getting accurately and efficiently diagnosed.

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

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**Comment**

Here’s some more reasons why you should care:   https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/  The information within this article is imperative to understand why patients are not believed, diagnosed, or treated within mainstream medicine unless they are lucky enough to have a bull’s eye rash and a tick dangling off their arm.  (Even then, people are sent home packing and told to “wait and see.”)

Category:

Lyme, Ticks, Treatment