Archive for the ‘Pregnancy’ 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.’

—————————————–

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

Congenital Lyme & the NIH

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30349687

Congenital Lyme and the NIH

Carl Tuttle

Hudson, NH, United States

Mar 19, 2022 — 

Latest email sent to the Tick-Borne Disease Working Group…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov” <Dennis.Dixon1@nih.hhs.gov>, “SSood@nshs.edu” <SSood@nshs.edu>
Cc: “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
(all members of the TBDWG)
Date: 03/19/2022 8:34 AM
Subject: Congress Commends NIH Collaboration with Advocacy Groups to Advance Research on Maternal-Fetal Transmission of Lyme Disease


To the Tick-Borne Disease Working Group,

Please see the news release below regarding congenital Lyme and the NIH.

Congenital Lyme was first identified in 1985 (Allen Steere) per the attached lengthy list of references and yet it took 37 years for the NIH to acknowledge this evidence? Isn’t this a crystal clear indication that our Public Health Agencies are COMPLETELY BROKEN!!

Congenital Lyme References
https://www.dropbox.com/s/g5am2pamxc1a4hx/Congenital%20Transmission%20of%20Lyme.doc?dl=0

We have autopsy results and a lengthy list of references proving chronic Lyme as well and that too is going unrecognized by members Dixon and Sood on this Working Group. Isn’t this a crystal clear indication that our Public Health representatives are COMPLETELY BROKEN!!

Announcement from Bruce Fries, President, Patient Centered Care Advocacy Group:

Congress Commends NIH Collaboration with Advocacy Groups to Advance Research on Maternal-Fetal Transmission of Lyme Disease (Please read this article!!)
https://www.webwire.com/ViewPressRel.asp?aId=284113

Note from Bruce Fries:

Since NIH has a history of noncompliance with appropriations directives for Lyme, the release includes language to hold them accountable. Success will be determined by the amount of grants funded that have measurable benefits for mothers and children.

Much of the long-term follow-up will be addressing the bias in the NIH special study sections that prevents grants from being approved for research that might challenge the mainstream dogma. Rather than calling the baby ugly, I think a better approach may be to push for creation of a special study section that focuses on tick-borne diseases and make sure the nomination and selection processes are open and transparent.

Many thanks to the advocates and advocacy groups who helped make this happen.

Bruce Fries
​President, Patient Centered Care Advocacy Group
Advisor for Research and Public Policy, Mothers Against Lyme
202-617-1592

BruceFries@Gmail.com

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u

Congenital Lyme and the NIH Part 2

Carl Tuttle

Hudson, NH, United States

Mar 21, 2022 — 

Please see the message below sent to the attention of Becky Salay, Chief-of-Staff for Congresswoman Rosa DeLauro. If you agree with my assessment why not send your comments to becky.salay@mail.house.gov referencing this petition update.

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “becky.salay@mail.house.gov” <becky.salay@mail.house.gov>, “caitlin.peruccio@mail.house.gov” <caitlin.peruccio@mail.house.gov>, “info@tfah.org” <info@tfah.org>,
Cc: All members of the Tick-Borne Disease Working Group
Date: 03/20/2022 10:34 AM
Subject: Re: Congress Commends NIH Collaboration with Advocacy Groups to Advance Research on Maternal-Fetal Transmission of Lyme Disease

DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS BILL, 2022
https://docs.house.gov/meetings/AP/AP00/20210715/113908/HMKP-117-AP00-20210715-SD003.pdf

Mar 20, 2022

2413 Rayburn House Office Building
Washington, DC 20515
Attn: Congresswoman Rosa DeLauro, Congenital Lyme and the NIH

Dear Rep DeLauro,

Please take a moment to read the following email thread and attachment addressed to the Federal Tick-Borne Disease Working Group. From the announcement below, the 2022 appropriations bill for the NIH signed into law on March 15 requires the NIH to advance research on maternal-fetal transmission of Lyme disease.

Maternal-fetal transmission of Lyme disease was identified in 1985 and it has taken 27 years for our Public Health Officials to recognize and investigate only after an act of congress?

Congenital Transmission of Lyme (personal Dropbox storage area)
https://www.dropbox.com/s/g5am2pamxc1a4hx/Congenital%20Transmission%20of%20Lyme.doc?dl=0

As you will read below, congenital Lyme is only the tip of the iceberg as chronic infection after extensive antibiotic treatment has been verified through autopsy studies. What does this mean? We have been dealing with an antibiotic resistant/tolerant superbug denied by the same Public Health Officials who have suppressed evidence of congenital Lyme for twenty-seven years!

Patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. Read the Written Public Comments published with each of the Working Group’s meetings to gain an understanding of the suffering. No matter how many of these comments are documented, no matter how many studies identifying persistent infection, the Federal representatives and past co-chair of this Working Group refer to chronic Lyme as a “religious belief.”

Written Public Comments
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/index.html

Chronic Lyme as a “religious belief” [Dr. David Walker]
https://www.lymedisease.org/tuttle-comment-tbdwg-nov17/

Quote from Senator Richard Blumenthal: (2011)!!!

“Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease”  Source: http://ctmirror.org/2011/07/18/blumenthal-takes-lyme-disease-fight-senate/

It is time to put an end to this Medical Mafia suppressing scientific evidence (for the purpose of controlling the narrative) and find a cure for this antibiotic resistant/tolerant superbug. Those of us who have studied the mishandling of Lyme disease are convinced that the rush to create a vaccine (LYMErix) is the root cause because a chronic relapsing seronegative disease did not fit the vaccine model. The FDA has fast-tracked a Lyme disease vaccine while this Working Group is in session; a vaccine for a disease that the IDSA describes as “Hard to Catch and Easily Treated” with 2-4 weeks of antibiotics.

So what is the message I’m trying to convey here? You or a loved one (and everyone else reading this message) is a single tick bite away from experiencing this travesty. One more important question Rep Delauro; How much Lyme disease is in America’s blood supply??

A response to this inquiry is requested.

Respectfully submitted,

Carl Tuttle
Hudson, NH

Cc: Rebecca Salay, MSc Chief of Staff (Please forward to Rep DeLauro)

Member of Gov Chris Sununu’s Lyme Disease Study Commission
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30346445

Correspondence sent to the Tick-Borne Disease Working Group:

PETITION UPDATE
Congenital Lyme and the NIH
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30349687

PETITION UPDATE
HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30346445

PETITION UPDATE
Evidence of chronic Lyme
https://www.che through autopsy studiesange.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30304104

Public comment: Does that sound like a religious belief, Dr. Walker?

Category:

Activism, Lyme, Pregnancy

[#MeAgain] New Beginnings: How Nicole Williams Overcame Lyme and Began a Journey to Start a Family

https://rawlsmd.com/health-articles/new-beginnings-how-nicole-williams-overcame-lyme-and-began-a-journey-to-start-a-family-meagain

View Larger New Beginnings: How Nicole Williams Overcame Lyme and Began a Journey to Start a Family [#MeAgain]

Interview by Jenny Lelwica Buttaccio
Posted 1/6/22

Born and raised in Southern California, ticks weren’t on Nicole Williams’ radar while growing up. Though she was an adventurous person — traveling, exploring, and studying abroad when she could — she didn’t spend much time in wooded areas, so tick-borne diseases like Lyme disease weren’t a cause for concern.

In 2014, Nicole decided to move to Nashville, Tennessee, excited about the new possibilities and opportunities that awaited her. But eight months into her stay, she began to experience a range of unusual symptoms: brain fog, joint and nerve pain, and memory problems were just some of the issues she dealt with. As a travel writer and editor, she also noticed her ability to articulate words began to diminish, and she was having trouble getting out of bed some days.

Nicole at pumpkin harvest farm, smiling

In search of answers, Nicole saw doctor after doctor, but they didn’t know what was wrong with her. With the ongoing, supportive help of her mother and the suggestion of a family friend, she was tested for Lyme disease and received a positive result.

Over the next several years, Nicole embarked on an epic journey to regain her health and her life. Here, she shares the healing story of hope and perseverance, her road to natural and herbal therapies, and finally, to marriage, pregnancy, and beginning her family.

► I was trying to find an answer, and my mom had a friend back in California who lived in the neighborhood that she would often run into on walks. They struck up a kind of friendship and would have conversations. This woman suffered for many years with Lyme disease, and every time my mom would tell her about me, she said to my mom, “I think she should get tested for Lyme.” And so, it was my mom who was really championing this, “I think you need to get tested for Lyme disease.”

► I struggled with it because I thought, “No, I don’t have Lyme. I’ve never been bitten by a tick. I’ve never really been a woodsy person.” I like adventure, but I don’t go camping. I didn’t think that I had it. But my mom had heard this woman’s story and told me that she’d had it her whole life.

For me, that was the kiss of death — if I got diagnosed with Lyme disease, and it’s a lifelong battle. I didn’t want to hear that. I was hoping for some other diagnosis.

► I asked an orthopedic doctor I was seeing in Tennessee if I should have [a Lyme test], and he said, “You know that there’s no Lyme disease here.” But we finally did it, and that test came back negative.

Then, I was in California, and I had a doctor agree to run the test again, and that one came back positive — and this was just the standard lab test. With the positive test, we said, “Okay, now we know what we’re dealing with.” We assumed, based on that positive test result and my clinical symptoms, that I had Lyme disease. That doctor put me on the standard course of doxycycline and said, “Alright, here’s 30 days of antibiotics, and you’ll be fine.” Then, we started researching Lyme-literate doctors in my area.

zoomed out view of Nicole in woods, walking on wooden bridge

► I found an LLMD near Nashville and started going to him, and he had me on a cocktail of different antibiotics. I did intravenous UV light therapy because I also had Epstein-Barr. I was on a whole course of all these different meds, and at the time, I thought I was tolerating it all pretty well. He was a proponent of diet as well; I didn’t really believe that the diet would be the answer.

But when I was on all the antibiotics, I cut back on alcohol; I cut back on sugar because I had read that the microbes feed off sugar; I cut out dairy because dairy could counteract some of the antibiotics. So in my head, I had justified a couple of dietary changes to try to increase my chances of treatment working.

But one night, I got up in the middle of the night and had to use the bathroom, and I passed out. I had a display of all the meds I was on, and I had my little pill organizer, and I actually passed out on them. I took that as a sign to say, “I’m done. This is too much. I’m taking too much. I’m overwhelming my body.” I felt some improvement, so I decided to stop the meds.

► When I stopped treatment, I added all the stuff back into my diet that I had cut out. I thought, “Well, it doesn’t matter now — I’ll have a little bit of sugar,” and everything came back with a vengeance. My symptoms worsened, and I realized there was more to this — how I eat and what I put in my body — than I wanted to admit initially. One day, I woke up and thought, “Alright. No sugar. No dairy. No soy, corn, or gluten.” I went on a full anti-inflammatory diet, which was really hard.

Through this whole experience, my mom was my biggest advocate, but she also took the brunt of a lot of my pain because I was never ready to hear, “Okay, what’s next? What you’re doing has stopped working. You need to take it to the next level.”

It was actually my mom who stumbled on Dr. Rawls on Facebook. Something came up about one of his webinars. We watched one, and we both ended up reading his book (Unlocking Lyme), but I still waited a long time before starting the herbal protocol. I wasn’t ready to commit to that next thing financially. I just wasn’t there yet.

Then, my now husband proposed, and we were planning our wedding. I wanted to see if herbs could take me to my wedding day feeling more like myself. I was already doing well with the diet, and I was completely homeopathic at that point. I felt good about it because I was giving my body what it needed to be healthy.

Nicole and her husband outdoors, holding baby

I did a consult in January of 2018, and I jumped right in. I did one pill of each for a week and then two pills of each for the next week, and then I was on the full dose and tolerating them well. I started seeing improvements pretty quickly. My wedding was in April of 2018, and I did reach my goal of feeling good on my wedding day. For almost three years, I took full doses of the herbs and knew they were working.

► Now, we’ve been married three years. About the two-year mark, we knew things with us were good — and of course, the pandemic happened. But we were both working from home, and we were spending more time together. It felt like the right time for us as a family to talk about having kids. It was a fear of mine that I could pass [Lyme] onto my child. How would I feel if my child was sick because of me?

In November of 2020, I did a consult with Dr. Rawls, and with his history of being an OB, I was curious to hear what he had to say. He gave me a lot of confidence in where I had come in my journey. If you truly believe that chronic illness is an immune dysfunction, there’s not one thing that makes you ill. It’s multiple things: toxins in your environment, toxins in your food, stress, lack of sleep. Why not find harmony with the microbes and find a way to feel better because you’re not going to get rid of them completely?

That was sort of my thought process with procreating: I’ve learned so much about my body and about wellness, well-being, health, food, toxins in my environment and the products I use, and I thought, “If I can take that and apply that to a major life event like a pregnancy or how I raise my child, I’ll feel more equipped to handle whatever comes up in the future.”

In December of 2020, I conceived our son. I decided I was going to stop the herbs and see how my body does, and worst-case scenario, if I need to add them back in postpartum, I will. But I’ve made sure to keep a very clean diet. The pregnancy hormones were wonderful, and I was just really conscious of how I managed my health through the pregnancy.

photo of 4 week old baby boy

In September of 2021, I gave birth to our son Jacob. I wanted to be as natural as I could, so I ended up doing an unmedicated birth. That was a true test of my strength, and I had a really smooth birth. I’m still feeling good to this day — minus a flareup at 10 weeks postpartum. I haven’t added the herbs back yet since I’m breastfeeding, but I take Epsom salts baths and detox as much as possible, but I don’t want to do too much because of breastfeeding.

For me, the takeaway with all of this is that [Lyme] doesn’t go away. I struggled with that for years while I was sick, thinking that this would be my forever, but I’ve found peace with it. I have bad days, but they do pass, and I learned from them and appreciate the good days more.

► Looking back, I’m thankful for what I went through because I learned so much in the process. I learned how to be an advocate for myself. I know how to be an advocate for a child. One of my fears was, what if I feel terrible those nine months of pregnancy? How am I going to get through it? But I feel like I learned much more about my body and how to stay healthy in ways that I’m appreciative of now. As a new mom, I now have the tools to get better if a relapse were to happen to me. I know what works. I know what to do, and it’s a constant journey.

__________________

For more:

Category:

Lyme, Pregnancy, Transmission, Treatment

13 Stillborn Deaths in 24 Hours – Mothers & COVID Shots

https://thephaser.com/2021/11/exposed-13-stillborn-deaths-in-24-hours-rally-lions-gate-hospital/ Video Here (Approx. 20 Min)

EXPOSED: 13 STILLBORN DEATHS IN 24 HOURS – LIONS GATE HOSPITAL B.C.

https://articles.mercola.com/sites/articles/archive/2021/11/30/surge-in-stillbirths-and-menstrual-changes

Nov. 30, 2021

Analysis by Dr. Mercola

Story at-a-glance

  • At Lions Gate Hospital in North Vancouver, British Columbia, 13 babies were allegedly stillborn in a period of 24 hours; all of their mothers had received a COVID-19 injection
  • At a rally outside the hospital, doctors launched an official complaint with the Royal Canadian Mounted Police against executives at the College of Physicians & Surgeons of BC, alleging conflicts of interest influencing their policies, decisions and statements made to the people of British Columbia
  • Scotland has also experienced an unusual rise in infant death rates; during September 2021, at least 21 babies under 4 weeks died — a rate of 4.9 per 1,000 births, up from an average of 2 per 1,000 births
  • As of November 12, 2021, there were 2,620 cases of fetal death or stillbirth among women who received a COVID-19 injection reported to the U.S. Vaccine Adverse Event Reporting System (VAERS)
  • The CDC-sponsored study that was widely used to support the U.S. recommendation for pregnant women to get injected “presents falsely reassuring statistics”
  • When the risk of miscarriage was recalculated to include all women injected prior to 20 weeks’ gestation, the incidence was seven to eight times higher than the original study indicated, with a cumulative incidence of miscarriage ranging from 82% to 91%

Excerpts:

Calls for Immediate Withdrawal of mRNA Shots

Not only does the IPAK data show COVID-19 injections prior to 20 weeks are unsafe for pregnant women, but 12.6% women who received it in the 3rd trimester reported Grade 3 adverse events, which are severe or medically significant but not immediately life-threatening. Another 8% also reported a fever of 38 degrees C (100.4 degrees F), which can lead to miscarriage or premature labor.13

Further, the study follow-up only continued for 28 days after birth, meaning the long-term effects of prenatal exposure to babies is unknown. The many concerns of mRNA COVID-19 injections during pregnancy and breastfeeding include transmission of mRNA and spike protein across the placenta and through breast milk, as well as the inhibition of synctyin-1, a protein essential for cell fusion and placental development.

Pregnant women were excluded from the mRNA injection clinical trials, but a Pfizer-BioNTech rat study revealed the injection more than doubled the incidence of preimplantation loss and also led to a low incidence of mouth/jaw malformations, gastroschisis (a birth defect of the abdominal wall) and abnormalities in the right-sided aortic arch and cervical vertebrae in the fetuses.14

Together, IPAK believes the data are compelling enough to withdraw the shots for vulnerable populations. Noting their advice in boldface, they say:15

“Considering the evidence presented here, we suggest the immediate withdrawal of mRNA vaccine use in pregnancy (Category X) and those breastfeeding, alongside the withdrawal of mRNA vaccines to children or those of child-bearing age in the general population, until more convincing data relating to the safety and long-term impacts on fertility, pregnancy and reproduction are established in these groups.”

Category:

Activism, Pregnancy, research, vaccines, Viruses

Pfizer Scientist: COVID Antibodies Pass “Through the Umbilical Cord” to Child During Pregnancy & Pfizer’s Jab “Just Doesn’t Work” in Some People

http://

COVID Antibodies Pass Through Umbilical Cord to Fetus

Oct 15, 2021

SHOCK VIDEO: Pfizer Scientist admits Pfizer Covid vaccine “just doesn’t work” in some people

Oct 15, 2021
Project Veritas
If Youtube scrubs these videos, go to:  https://www.projectveritas.com/
______________
**Comment**
  •  whistleblowers: COVID jab kills more than it saves
  • Pfizer scientist: antibodies are probably better than the jab
  • internal emails tell Pfizer employees to avoid discussing fetal cells are used in the injections
  • J&J officials: children shouldn’t get shots but adults who don’t comply with mandates should be ‘inconvenienced’
  • FDA economist states “vaccine hesitant” African Americans should be given the injections through a blow-dart
  • Pfizer can stop countries from speaking about contracts, block vaccine donations, unilaterally change delivery schedules & demand public assets as collateral
For more:

In a July 1, 2021, commentary in The Lancet Microbe,3 Piero Olliaro, Els Torreele and Michel Vaillant also argue for the use of absolute risk reduction when discussing vaccine efficacy with the public. They too went through the calculations, coming up with the following:

Pfizer/BioNTech — Relative risk reduction: 95%. Absolute risk reduction: 0.84%
Moderna — Relative risk reduction: 94%. Absolute risk reduction: 1.2%
Gamaleya (Sputnic V) — Relative risk reduction: 91%. Absolute risk reduction: 0.93%
Johnson & Johnson — Relative risk reduction: 67%. Absolute risk reduction: 1.2%
AstraZeneca/Oxford — Relative risk reduction: 67%. Absolute risk reduction: 1.3%

Category:

Activism, Pregnancy, vaccines, Viruses