Archive for the ‘Lyme’ Category

Tick-Related Disease Can Trigger Chemical Sensitivities

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

To TBDWG: Tick-related disease can trigger chemical sensitivities

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

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

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

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

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

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

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

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

Many “don’t believe in” MCS

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

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

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

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

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

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

I live the experience, while science can provide research.

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

Kathleen Wallace lives in New York state.

References

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

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

Category:

Activism, Lyme

Lyme & Pregnancy

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

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

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

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

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

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

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

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

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

Footnotes

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

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

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

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

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

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

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

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

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

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

[xi] Standing Committee on Health, Tuesday, June 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

Category:

Lyme, Pregnancy, research, Uncategorized

To TBDWG: Pay Attention to Gestational Lyme & New ICD-11 Codes

https://www.lymedisease.org/bauer-gestational-icd11-tbdwg/?

To TBDWG: Pay attention to gestational Lyme and new ICD-11 codes

kristina bauer, disulfiram for Lyme disease

Kristina Bauer gave the following public comments at the July 19 meeting of the federal Tick-Borne Disease Working Group.

July 21. 2022

I’m Kristina Bauer, Executive Director of Texas Lyme Alliance,  mom of four gestational Lyme kids. This is my fourth opportunity to address Congress and provide public comments to the TBDWG, thank you for giving patients and advocates a voice!

I have been advocating for gestational and pediatric Lyme over five years, yet still don’t see treatment guidelines updated to avoid this health risk. I went 32 years misdiagnosed as autoimmune diseases and hearing, “I don’t know how to help you.”

My family is finally in remission after 10 years of treating by using immune therapies and integrative medicine, spending too much money. I also serve on the board of Mothers Against Lyme, and am the Texas state captain for Center for Lyme Action.

* The Affordable Care Act established that 90 days of antibiotic treatments, repeated as necessary, are essential health benefits for cases of persistent and recurring Lyme infection.

* Dr Bruce Patterson’s work from Incelldx on chronic inflammation has inferred Lyme persists, but others may need treatment for high inflammation. Separating these two can help patients identify what is going on and reduce symptoms to improve quality of life.

* I invite the listeners to view my YouTube channel at Kristina Bauer that contains interviews regarding how PTLDS is being expressly used to deny treatment for ongoing infection.

* Human rights violations have been documented to include denying the right to the highest attainable standard of health, personal security, right to life and the protections against torture and cruel, inhuman and degrading treatment.

* Doctors who take an oath but don’t understand Lyme, do nothing for patients, therefore in fact do harm. Improving education to all medical providers would help improve a patient’s quality of life.

ICD-11 Diagnostic Codes

The World Health Organization’s ICD-11 now recognizes a significant number of Lyme complications which can become chronic, cause severe disability, and in some cases, result in death.

The new codes now include: 1C1G.10 Lyme Neuroborreliosis. 1C1G.11 Lyme Carditis. 1C1G.12 Ophthalmic Lyme borreliosis. 1C1G.1Y Other specified disseminated Lyme borreliosis. 1C1GY Other specified Lyme borreliosis. 6D85.Y Dementia due to Lyme Disease. 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis and WHO recommended that “KA6Y Other specified infections of the fetus or newborn” be coordinated with “XN13C Borrelia Burgdorferi” to represent congenital Lyme.

Thank you to all TBDWG members. To all the patients, things ARE getting better, keep your chin up and never give up!

View a recording of Kristina’s comments here:

Kristina Bauer can be contacted via her website, TXLymeAlliance.org.

________________

**Comment**

Moms like Kristina are true, unrecognized heroes.  Having a bevvy full of infected kids, while being infected yourself is a underappreciated challenge.  Rock on!

That said, here’s a few points for consideration:

  1. The TBDWG does NOT give patients a voice – unless you consider ONE patient advocate enough of a voice.  As knowledgeable as LDA’s Pat Smith is, one voice hardly registers against a literal Cabal biased against the severity and persistence of Lyme/MSIDS.
  2. Being misdiagnosed for 32 years is unacceptable but nothing is changing in Lyme-land and the exact same thing is happening to thousands of others daily.
  3. This brave mom discusses having FOUR children with gestational Lyme, yet the CDC still says this is rare.  As Tuttle asks, how can they know when they aren’t counting?
  4. Doctors saying “I don’t know how to help you” is also unacceptable.  They are either too afraid to treat due to the politicization of the disease OR are completely ignorant due to public health ‘authorities’ who are  propagating a false narrative that has been regurgitated by mainstream medicine, including medical professional organizations (they come after doctors for thinking for themselves) and medical schools (which are in bed with Big Pharma) – all of which are slowly turning into a monopolized business that is completely destroying health care.
  5. Working with the corrupt WHO is unfruitful at best and harmful at worst.  70% of its funding comes from Big Pharma and the rest comes from the Gates Foundation and China.  Hello?  A WHO whistleblower has stated the WHO is the “tip of the spear for world tyranny.”  Why do we continue to craw in bed with the enemy?  If we haven’t learned from 40 years of stagnation and lies, we never will.
  6. The Affordable Care Act (aka: ACA, Obamacare, PPACA) is not affordable.  Further, this monopoly has caused untold damage.  Again, why would you continue to trust the very people and agencies behind all the corruption?  It defies all sound logic and reason.  Untold thousands have died and continue to die, due to ACA interference with COVID treatment. I can only imagine the suffering due to the standard Lyme guidelines in place for over 40 years.
  7. Things are NOT getting better.  There is a delusion in the land and people have stopped thinking critically.  We need to quit aligning ourselves with corrupt bureaucrats who care more about their position, power, and money than patients. Any forward progress has been solely due to independent researchers/doctors who conduct their own research with their own funds and/or share with the world what they have learned in their clinical experience.  That’s it.  If we were smart, we would fund these individuals and organizations.  The government is beyond help.  Time to move on and get real answers for patients. “Insanity is doing the same thing over and over and expecting different results.”  Truer words were never spoken and never more applicable than in Lyme-land.
  8. Always keep your chin up and never give up.  But we also must get wiser and realize what is working and what is not, and stop enabling corrupt organizations to continue to do what they’ve gotten away with for decades.

Category:

Activism, Lyme

The Physical & Financial Devastation of Unrecognized Lyme Disease

https://www.lymedisease.org/ciocca-tbdwg-devastation-lyme/

03 MAY 2022

The physical and financial devastation of unrecognized Lyme disease

Caroline Ciocca delivered the following public comment to the federal Tick-Borne Disease Working Group on April 27.

My name is Caroline and I am 25 years old. I grew up in Pennsylvania and moved to North Carolina after graduating from Temple University with a degree in Risk Management and Insurance in 2019.

I first became ill when I was 9 years old. I presented with mostly gastrointestinal and neuropsychiatric symptoms, which my pediatricians dismissed as mental illness despite the recommendation from my child psychiatrist that I be tested for Lyme.

Despite years of unexplainable symptoms that frequently debilitated me, I went undiagnosed for 15 years until the age of 23. At this time my symptoms progressed to the point that I could barely stand up without passing out and I would get to the end of the day and have no recollection of what happened, and still I was told I was just anxious.

The results of my Western Blot still left me in a gray area. The hospital called me weeks later to tell me my test was “not positive, but not exactly negative,” with no guidance on what to do about that.

Alongside Lyme disease, I have also been diagnosed with associated infections of Babesia, Bartonella, and mycoplasma. It is extremely common for patients to be infected with multiple pathogens, yet the co-infections are rarely recognized for how common and also how damaging they are.

I struggle every day with regional pain in my ankles, knees, and hips that leaves me unable to walk. Nausea to the point I lost 35 pounds in a year and dropped to 95 lbs, so underweight I stopped getting my period. I had to have my gallbladder removed. Headaches, jaw pain, eye problems, mood instability, panic attacks, and PTSD from my traumatic experiences trying to navigate the medical system for so many years.

The disease has impacted my neurological system, causing severe memory loss, brain fog, failure to recall words, confusion, executive functioning issues, and disorientation.

Financial devastation, too

Like so many other patients, I not only suffer from the physiological devastation, but also the financial devastation of this illness. I have spent hundreds of thousands of dollars on medical costs throughout the years.

I am now unable to work and had to leave my first full time job out of college. I have had more than $15,000 in out of pocket medical costs in the last MONTH alone, which is a continuation of ongoing treatment that is expected to cost $60-80k out of pocket.

There are a number of things that could have been done differently to impact my journey with this disease. The Working Group should consider the following action items:

  • Investigating what role co-infections and other commonly associated vector-borne diseases such as Bartonella play in the clinical presentation and pathogenesis
  • Funding to update education and guidelines on government-funded sites for healthcare professionals on all aspects of this illness- especially neuropsychiatric manifestations
  • Outreach to communities to stress the importance of prevention, early intervention and treatment, and potential long term health impacts – especially for at-risk demographics such as children

I am confident that had measures like this been put into place, I would not be here speaking on this topic right now. I would not have had my childhood robbed from me or had to put the last two years of my life on hold while accumulating tens of thousands of dollars in medical debt.

There is a unique opportunity here to change the lives of the hundreds of thousands of people being diagnosed every year. Thank you for your time.

Caroline can be contacted via ciocca.caroline@gmail.com.

__________________

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Seriously, how many more stories must be shared before this becomes recognized for the global plague it truly is?

 

Category:

Activism, Lyme, Psychological Aspects

Dr. Steven Harris – IgeneX Testing Explained

http://  Approx. 34 Min

Dr. Steve Harris – IgeneX Testing Explained

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Category:

Lyme, Testing