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Holly Ahern, a professor, research scientist, mother of a daughter with Lyme disease, and long‑time Lyme advocate, testified before Congress this week, and she did a stellar job.

The hearing was held by the Committee on Energy and Commerce, Subcommittee on Health, where she was given five minutes to summarize why Congress should reauthorize the Kay Hagan Tick Act (HR 4348). Watch here to see what she told them.

Stay tuned to see what ultimately happens to the Kay Hagan Tick Act Reauthorization.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

For too long, parents confronting Lyme disease during pregnancy have been left to fend for themselves.

The science remains unsettled, the clinical guidance is uneven, and the burden of navigating this confusion has fallen on patients who are simply trying to protect their own health and the health of their babies.

A new study in Pathogens brings those voices forward and paints a picture that is both familiar and deeply overdue. This is a different study than the one we recently reported on from Frontiers in Medicine, which documented evidence of in-utero transmission of Lyme disease.

This one focuses on the lived experience of Lyme disease during pregnancy.

In the Pathogens study, researchers at Children’s National Hospital and George Washington University interviewed 27 parents who had acute Lyme, PTLDS, or chronic Lyme during pregnancy.

Their accounts were grounded in the daily reality of managing a complex illness while trying to make the best possible decisions for a developing child. Many described feeling misunderstood or minimized by doctors, which only added to the uncertainty they were already facing.

Despite the diversity of their backgrounds and medical histories, the themes that emerged were remarkably consistent.

What matters most

When care felt supportive, it was not because a practitioner had mastered every nuance of Lyme disease. It was because he or she listened.

Patients said the most meaningful interactions came from doctors who validated their symptoms, were honest about what is known and unknown, showed a willingness to learn, included them in decisions, offered empathy, and provided continuity instead of fragmented care.

These are the fundamentals of good medicine, yet too many families reported that they were the exception rather than the rule.

The timing of this study matters. With new scientific findings emerging and growing recognition that Lyme in pregnancy deserves far more attention, the voices of patients are an essential part of the conversation.

The Pathogens study makes one thing clear. Families want doctors who treat them with respect, while offering care that acknowledges the complexity of their situation and the legitimacy of their concerns.

Until the research community fills the gaps in scientific understanding, the medical community must close the gaps in communication and compassion. Families deserve care that rises to the seriousness of their circumstances. Anything less is not acceptable.

“Unless You Live This, You Cannot Understand It”

One of the first ways Nicole builds resilience is by recognizing her limits and the limits of others, including many people very close to her.“The main thing is that unless you live this, you truly cannot understand it,” she says.

She wants her family to fully understand what she is experiencing. She wants them to feel it, to validate it in a way that matches her reality. Eventually, she accepts that they cannot, at least not completely. That realization is painful, but it is also freeing.

Instead of trying to explain the unexplainable, she begins to seek out people who already understand. That decision leads her into the Lyme community, where shared experience replaces explanation. Through that process, she forms connections with people like Jasmin and Christa and reinforces what she has learned.

Jasmin describes Nicole in simple but powerful terms: “She truly was my lifeline.”

Resilience, Nicole discovers, is not built in isolation. It is strengthened through connection.

Redefining Progress

One of the most difficult lessons Nicole learns is that healing does not follow a predictable path. There are moments when she feels stronger, more stable and closer to herself again. Then, without warning, symptoms return.

And at first, those setbacks feel like failure, but over time, she reframes them. This shift is essential, because Lyme disease creates not only physical instability, but psychological tension. Each symptom carries the potential to trigger fear of regression, fear of losing progress.

“A setback doesn’t mean I’m going back to my worst days,” she explains.

Nicole names what many patients quietly carry: “I think most of us experience a lot of PTSD.”

Resilience, in this context, means continuing forward without requiring certainty. It means accepting fluctuation without assuming collapse.

Letting go of the search for a cure

Like many patients, Nicole initially searches for the one treatment that will resolve everything. She listens to others. She considers new protocols. She wonders if the next step will finally be the one that works, but eventually, she confronts a difficult truth that changes everything.

“There wasn’t a magic pill,” she says.

It shifts her from waiting for healing to actively participating in it.

Christa, who also supports other Lyme patients, reinforces this perspective. The illness is rarely simple. “It’s never just Lyme,” she explains, pointing to the multiple layers of co-infections, environmental exposures, and systemic stress that often shape the condition.

For Nicole, resilience becomes the ability to navigate that complexity without becoming consumed by it.

Learning to work with your body, not against it

Perhaps the most significant shift in Nicole’s journey is how she relates to her own body.

At first, she resists it. She wants to maintain her previous pace, her previous identity. She wants to push through the limitations. But her body forces her to stop. Gradually, her perspective changes.

“My body wasn’t betraying me,” she says. “It was communicating.”

This realization requires a different kind of strength. Instead of forcing progress, she begins to listen. Instead of criticizing herself, she practices compassion. For high-achieving individuals, slowing down without losing a sense of self is often one of the hardest aspects of resilience.

“I had to learn to just have compassion for myself,” she adds.

Resilience requires facing loss

As Nicole continues her journey, she is forced to confront another dimension of resilience: grief. Memories from her past resurface, including difficult experiences tied to her father. At the same time, she is grieving the loss of who she once was, and this is on-going.

Jasmin describes a similar experience, mourning both a long-term relationship and her former identity.

For Nicole, resilience is not about avoiding that grief but about allowing it. Healing requires acknowledging what has changed, what has been lost, and what may not return.

Finding gratitude without denying reality

Despite everything she has experienced, Nicole arrives at a place she once thought impossible: gratitude.

“I’m grateful for the people that I’ve met along the way,” she says. “I’m grateful that I’m here.”

This gratitude does not erase the hardship. It exists alongside it. It reflects a shift in perspective from focusing only on what has been lost to recognizing what remains. Resilience, in this sense, is not about positivity. It is about balance.

The choice to keep going

At the core of Nicole’s story is a simple but powerful idea: resilience is a choice. Not a one-time decision, but a repeated one. Each day brings uncertainty. Each symptom brings a new challenge. Each setback presents a moment where giving up might feel easier.

“If I didn’t learn to stay hopeful,” she says, “I would not be where I am today.”

Hope is an act of resilience.

Nicole titles her book Resilient Hope for a reason. Hope, as she defines it, is not dependent on outcomes. It is not tied to a specific treatment or timeline.

It is what allows her to keep moving forward even when the path is unclear.

For Lyme patients, that message resonates deeply. Because resilience is not about having answers. It is about continuing without them.

And sometimes, that is the strongest form of hope there is.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.

We recently reported on a new peer‑reviewed journal article examining congenital Lyme disease. The paper represents one of the most significant scientific reviews of this topic to date. Here, long-time advocate Bruce Fries takes a closer look at what the authors found and why it matters.

By Bruce Fries

A groundbreaking scientific report emerging from the June 2022 Banbury Conference at Cold Spring Harbor Laboratory is reshaping the medical understanding of Lyme disease in pregnancy.

It directly challenges a key assertion in the 2020 IDSA/AAN/ACR Lyme disease guidelines that “Lyme disease in pregnancy has not been found to result in congenital infection.”

The newly published peer-reviewed paper, “Perinatal transmission of Borrelia burgdorferi: advancing scientific and clinical understanding of Lyme disease in pregnancy,” concludes that the bacterium responsible for Lyme disease can cross the placenta and may contribute to serious adverse outcomes in pregnancy and infancy.

The report states unequivocally:

“The totality of existing evidence indicates that Bb can cross the placenta and may be associated with adverse pregnancy outcomes including fetal/infant morbidity and mortality.”

A landmark scientific turning point

The Banbury Conference brought together leading international experts from academia, clinical medicine, and government agencies to review decades of research on Lyme disease transmission during pregnancy. The resulting publication represents the most comprehensive synthesis of evidence to date.

The authors emphasize that perinatal transmission is not a theoretical concern, but a documented biological phenomenon:

The Banbury findings underscore that Lyme disease in pregnancy is both a public health issue and a research priority:

Evidence of risk to pregnancies and infants.

The report documents a wide spectrum of adverse outcomes associated with gestational Lyme disease, including:

Miscarriage and stillbirth
Preterm birth
Neonatal death
Neurologic and cardiac abnormalities

The authors note, “A wide range of adverse pediatric outcomes reported with LD in pregnancy include preterm birth… neurologic abnormalities… and perinatal death.”

Crucially, infection may occur even when the mother has no symptoms:

“The spirochete can be transmitted to the placenta or fetus in the absence of maternal clinical signs and symptoms.”

In one study cited in the report:

“5% of placentas harbored Bb spirochetes, implying fetal transmission.”

Diagnostic and clinical blind spots

The Banbury report highlights major challenges in diagnosing Lyme disease during pregnancy:

Up to 40% of cases may lack the characteristic rash
Serologic testing may be negative despite infection
Many women are asymptomatic or misdiagnosed

The authors warn:

“This poses a serious diagnostic dilemma.”

They further caution that reliance on standard testing may lead to missed cases of congenital infection.

Treatment gaps and persistent infection

Even when Lyme disease is diagnosed and treated, risks may remain. The report notes:

“Bb has been identified in placental… and fetal tissue from mothers who received a single course, or in some cases multiple or prolonged courses of antibiotic therapy.”

This raises critical questions about current treatment protocols and their effectiveness in preventing fetal transmission.

Direct challenge to current guidelines

The Banbury findings stand in stark contrast to the IDSA/AAN/ACR guideline statement denying congenital infection.

A formal retraction request submitted to the guideline authors in October 2021 underscores this discrepancy, asserting that the statement “Lyme disease in pregnancy has not been found to result in congenital infection” is a factual error with serious implications for patient care. The request emphasizes that such misinformation risks delaying diagnosis and treatment for pregnant women, thereby increasing the likelihood of harm to both mothers and their children.

Public health complications

The Banbury report makes clear that the lack of recognition of congenital Lyme disease has hindered progress:

“No international surveillance system exists to track cases of congenital Lyme disease.”

And critically:

“A standardized case definition for identifying congenital LD has yet to be delineated.”

Without surveillance, standardized definitions, or updated guidelines, the true scope of the problem remains hidden.

Urgent call for action

The Banbury Conference authors call for immediate and coordinated action, including:

Longitudinal studies of pregnant women and exposed infants
Improved diagnostic tools
Development of clinical guidelines for pregnancy and neonatal care
Establishment of registries and surveillance systems

They stress:

“Comprehensive guidelines for diagnosis, treatment, and long-term management of pregnant women with LD and newborn infants are urgently needed.”

Conclusion

The Banbury report represents a watershed moment in Lyme disease research—one that fundamentally challenges outdated assumptions and calls into question current standards of care.

By confirming that Lyme bacteria can cross the placenta and may harm developing fetuses, the findings demand a reassessment of clinical guidelines that continue to deny congenital infection.

As the authors conclude, the science is clear, but the work ahead is substantial:

“Many fundamental research questions remain.”

For pregnant women and their children, the stakes could not be higher.

Bruce Fries, founder and president of the Patient Centered Care Advocacy Group, is based in the Washington DC area.

AI tools are becoming a go-to source for health advice.

A recent survey from KFF found that 1 in 6 people use AI chatbots for health questions each month. But convenience can come at a cost—especially when it comes to privacy and accuracy.

Privacy: You may be giving up more than you think

Most AI chatbots (like ChatGPT, Gemini, and Claude) and health apps (like Fitbit or symptom trackers) are not covered by HIPAA, the federal law that protects your medical records.

That means your data is not protected once you share it. It can be stored, analyzed, or shared and even sold without your knowledge or consent. Even companies that promise to hold your information confidential, can change their privacy policies at any time.

Some platforms now encourage users to upload lab results or medical records. But once that information leaves a HIPAA-protected setting, any HIPAA protections are gone. And once your data is shared, you can’t take it back.

These are serious concerns. You may recall, for example, the public outcry when 23 and Me filed for bankruptcy and people first realized that the sale of their genetic data to the highest bidder was possible. As the Center for Democracy and Technology points out

“People don’t want their data, especially sensitive data like health and genetic data, to be used and shared in ways they don’t want–or shared or sold to parties they don’t know”.

The incentives for companies to use your data for their own benefit are quite strong. The market for data is $434 billion. Health data is hard to come by, and it is extremely valuable. It may be used to train AI systems, target ads, or be shared or sold to third parties. Lyme patients are particularly worried about health data disclosure because of stigma associated with the disease. In a MyLymeData survey of over 1,900 participants:

Patients told us they were concerned about misuse of their data by insurers, employers, the government, and pharma. And they strongly believed that their data should be protected against researcher bias and should only be used for the benefit of patients.

Their top two concerns were misuse of health data by insurers to deny coverage and by employees to discriminate in job recruitment and advancement. When patients strip health data of its HIPAA protection status by providing it to chatbots or health apps, they permit both of these abuses to happen. Health apps seem less risky, but they carry the same privacy risks.

Newsweek recently reported on a conversation with a US Senator and Claude AI what data is being collected and how it is being used by AI. Even bearing in mind how “agreeable” AI bots can be, the message is chilling. The video can be viewed here. A portion of the transcript is below:

The thing that would probably shock most Americans is that companies are collecting data from everywhere. Your browsing history, your location, what you buy, what you search for, even how long you pause on a web page. Then they’re feeding all of that into AI systems that create incredibly detailed profiles about you. What would surprise people is how little they actually consented to and how little they understand about it. Most people click agree on terms of service without reading them. And they have no idea that their data is being combined with thousands of other data points to build a picture of who they are. And then that AI uses those profiles to decide what ads you see, what prices you’re shown, even what information gets prioritized in your social media feed. It’s all happening in the background, invisible and largely unregulated.

Accuracy: AI isn’t always right

AI chatbots can sound certain about the information they provide, but they can be wrong. They may rely on data that is be outdated or biased and can repeat existing medical misinformation. Lyme patients are aware of how misinformation can contribute to delayed diagnosis and poor outcomes.

In other cases, errors can lead to delayed or inappropriate care. An NPR report found that over half of patients using AI to decide about ER visits were incorrectly told they could wait, including in some serious, life-threatening cases.

How to use AI more safely

If you use choose to use AI chatbots or health apps, I recommend that you:

Be careful about any information you share. Don’t share identifying details (even a ZIP code can matter) and don’t upload lab results or records. Ask questions without context, e.g. “a 35 year old female with the following symptoms”.
Use caution when relying on any information provided to you about serious health issues. Ask for sources and verify them. Check with your clinician before acting on advice. Don’t put off going to the ER room based on AI advice. It is simply not reliable enough at this point.

Bottom line

AI can be helpful, but be careful not to disclose identifying information or upload medical records. Use good judgment about what you rely on when talking with AI chatbots or health apps, particularly regarding any serious healthcare concerns.

The MyLymeData Viz Blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On X, follow her @lymepolicywonk.