Congenital LymeTRANSMISSION: A NEW PARADIGM Most of us have learned that Lyme disease is spread by a tick bite. What is less known is that Lyme disease is also congenital, meaning it can cross the placenta, both infecting, and causing harm to, your unborn child.
Though scientists have known Lyme is congenital since 1985 1, it took the CDC until 2020 to finally acknowledge this fact. CDC Fact Sheet: Pregnancy and LymeDisease
HOW DO PREGNANT WOMEN FEEL WHEN INFECTED?Data on this has not been systematically obtained, but pediatric Lyme expert, Dr. Charles Ray Jones, interviewed 102 mothers who gave birth while infected with Lyme. He reports that 66% described their pregnancy as difficult, with the most common symptoms being severe and unremitting fatigue, brain fog, and cognitive problems.
A LYME PREGNANCY MAY HAVE A TRAGIC OUTCOME PRIOR TO BIRTH Pregnant women who are infected with Lyme disease may not carry to term. Instead, their pregnancy may result in stillbirth, miscarriage and perinatal death, usually with cardiac abnormalities. Keep in mind: any organ can be affected.2,
WHAT CAN HAPPEN IF AN INFECTED MOTHER CARRIES A BABY TO TERM? If a mother is infected during pregnancy and her baby survives, the path forward may be hard. In his study of 102 live births to mothers with Lyme disease, Dr. Charles Ray Jones describes these newborns’ symptoms by frequency. The most common findings were neuropsychiatric. 80% of children had cognitive problems, learning disabilities, and mood swings; 72% had fatigue and lack of stamina; 9% had autism.Developing babies are not only at risk for contracting Lyme in utero, but can also be infected through breast milk.
IF WE KNOW ALL THIS, WHY DOES THE PROBLEM PERSIST? Existing Lyme blood tests do not produce reliable results. For this reason, the doctor of a woman with Lyme symptoms who tests negative may disregard Lyme as a possibility. In addition, women with Lyme disease may be asymptomatic, or they may be sick, but misdiagnosed with other conditions.
Frequent misdiagnoses include: Anxiety and/or Depression, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, MS, Arthritis, Tendinitis, Endometriosis and Neuropathies.
EDUCATE YOURSELF Your best bet is to familiarize yourself with the range of Lyme, and Lyme coinfection, symptoms.
HELP IS OUT THERE: If you have a history of Lyme symptoms without ever having been evaluated for Lyme, Mothers Against Lyme strongly recommends a consultation with a Lyme Literate Medical Doctor prior to conception. Here are some sites that will suggest such doctors for you:
TREATMENT DURING PREGNANCY If you have Lyme disease and plan to get pregnant, or if you contract Lyme disease during pregnancy, antibiotic treatment will protect both you and your developing fetus.
Many penicillins, including amoxicillin and ampicillin, are safe to use during pregnancy and can treat Lyme. Cephalosporins are another option, including cefaclor and cephalexin. Rocephin is also safe and may be used if there is central nervous system involvement.
Co-infections may require further treatment. You and your doctor can decide what is best for your specific situation.
PEDIATRIC LYME: A COMPLEX AND CHALLENGING DIAGNOSIS As is common with many other infectious diseases including HIV and Syphilis, an infant who is infected in-utero may or may not not demonstrate any signs or symptoms until months to years after birth.
LOOK FOR SYMPTOMS 
Women who are infected with Lyme prior to or during pregnancy believe their children suffer from higher rates of developmental and behavioral irregularities than the general population. These include: ADD, ADHD, allergies, anxiety, Autism, Autism Spectrum Disorder, depression, eating disorders, gender dysphoria, insomnia, learning disorders, night terrors, obsessive compulsive disorder, oppositional disorder, PANS/PANDAS, sensitivity to light, sounds and touch, POTS, and Sensory Integration Disorder. “School Refusal” should raise a red flag for Lyme.
If your child suddenly develops any change in personality without obvious cause, or exhibits any of the above symptoms, Mothers Against Lyme suggests having them evaluated by a Lyme Literate doctor for Lyme disease.
SymptomsTHE LYME SYMPTOM PROFILE: CHRONIC, MULTISYSTEMIC DISORDERS Despite the 
fact that doctors keep ordering it, Lyme cannot be ruled out by a negative blood test. There are specialty tests that make diagnosis more accurate, but these are usually only ordered by Lyme Literate doctors.
Because testing is so unreliable, symptom history, and symptom recognition, are of great importance. Many things that are dismissed as symptoms of unknown cause are often Lyme. So, make sure your doctors consider Lyme when you have an “illness” with no known cause, such as an auto-immune or neuro-degenerative disease.
SYMPTOM HISTORY If there is a history of a known tick bite, no matter how many years ago, that is significant. If you’ve never noticed a tick on yourself, a flu-like syndrome in summer, when there is no flu around, is often a sign that there has been a silent tick bite. History often includes diagnoses of fibromyalgia, chronic fatigue, atypical connective tissue disorders and neuropathy.
Even if you were treated for Lyme in the past, under-treatment could leave you with chronic Lyme. Physical symptoms often come on gradually: one year an elbow hurts, months later a knee; later, daily headaches that might be considered “sinus”, “tension” or “migraine.” Fatigue gradually becomes severe. Neuropsychiatric symptoms are often more sudden: a Panic Attack, or a new mood disorder, a sudden inability to concentrate, read, keep with one’s to-do list or do automatic sequential tasks without thinking them through; a sense of brain fog.
The list of symptoms goes well beyond joint pain. They can be as sly as eczema and as scary as paralysis. Like syphilis, Lyme is a Great Imitator, and symptoms can take on just about any pattern.
Many doctor’s begin their assessment for possible Lyme by going down the Burrascano Checklist. Another list is the Horowitz Questionnaire.
Some people with Lyme present with few of these symptoms, and some present with many more; for instance, a daily migraine sufferer, with no other symptoms, deserves evaluation; the same is true for the other symptoms.
- Asthma that doesn’t respond to medication; shortness of breath; dry, chronic cough; air hunger; tightness in chest.
- Bell’s palsy
- Bladder pain or pressure
- Brain-fog; problems with short-term memory, word- or name-finding, mis-speaking; difficulty keeping track of conversation.
- Digestive issues: bloating, upset stomach, nausea, gas, diarrhea or constipation.
- Disorientation; going to the wrong places.
- Ear/Hearing issues: feeling of pressure; ringing; sound sensitivity; sudden hearing loss; vertigo.
- Exhaustion
- Eye issues: pressure; blurred or double vision; floaters.
- “Female” issues: menstrual irregularity; difficulty conceiving; loss of pregnancy.
- Fever: frequent low-grade, or intermittent high-grade fevers.
- Flu-like symptoms, especially if they occur out of flu season.
- Genital issues: change in sexual function; numbness or pain in genitals.
- Headaches in any part of the head, including migraines; daily-headache syndrome; light-headedness.
- Heart issues: palpitations; irregular heartbeat; leaky or congested valve.
- Muscle and Joint issues; neck creaks and cracks.
- Neurological issues: pain in the soles of the feet; motion sickness; tremors or twitching; tingling, numbness, burning, stabbing sensations, or shooting pains.
- Neuro-psychiatric issues: mood swings, irritability, depression, panic attacks, anxiety, sense of unreality, intrusive or obsessive thoughts.
- Sleep issues: difficulty falling asleep, frequent awakening, non-refreshing sleep.
- Throat issues: swollen glands; recurring Strep throat.
- Thyroid issues: hypo, or hyper; chills, especially during the day; sweats, especially at night; Raynaud’s Disease.
- Weight/food issues: weight gain or loss; food intolerances and allergies.
Education & Resources IT’S UP TO US We are conditioned to seek answers from doctors. However, when it comes to Lyme disease and its co-infections, education and self-advocacy are your best chance for a healthy outcome. The more you know, the more you can help yourself and others.
Here are resources that have helped our members increase their Lyme literacy.
EXPLORE OUR LYME LIBRARY Here are resources that have helped our members increase their Lyme literacy:
BOOKS
- Believe Me: My Battle with the Invisible Disability of Lyme Disease, Yolanda Hadid.
- Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy and Almost Killed Me, Ally Hilfiger.
- Bitten: The Secret History of Lyme Disease and Biological Weapons, Kris Newby.
- Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again, Stephen Phillips and Dana Parish.
- Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment, Denise Lang with Kenneth Leigner, MD.
- Cure Unknown: Inside the Lyme Epidemic, Pamela Weintraub.
- Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections, Stephen Harrod Buhner.
- Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma, Stephen Harrod Buhner.
- Healing Lyme: Natural Healing of Lyme Borreliosis and the confections Chlamydia and Spotted Fever Rickettsiosis, Stephen Harrod Buhner.
- How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease, Richard I. Horowitz.
- Lyme Brain: The Impact of Lyme Disease on Your Brain, and How to Reclaim Your Smarts, Nicola McFadzean Ducharme, ND and Robert Bransfield, MD.
- Lyme Light: A Memoir, Natalie H.G. London.
- Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease, Lori Dennis.
- Natural Treatments for Lyme Coinfections: Anaplasma, Babesia and Ehrlichia, Stephen Harrod Buhner.
- New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies That Work, Connie Strasheim.
- Of Ticks and Islands: Memoirs from the Lyme and Vector-borne Disease Laboratory of the Maine Medical Center Research Institute, Peter W. Rand, MD.
- Sick: A Memoir, Porochista Khakpour.
- Suffering the Silence: Chronic Lyme Disease in an Age of Denial, Allie Cashel.
- This Is How I Save My Life: From California to India, a True Story of Finding Everything When You Are Willing to Try Anything, Amy B. Scher.
- Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities and Chronic Environmental Illness, Neil Nathan, MD.
- Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease, William Rawls, MD.
- When Your Child Has Lyme Disease: A Parent’s Survival Guide, Sandra K. Berenbaum and Dorothy Kupcha Leland.
- Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease, Richard I. Horowitz.
WATCH THESE FILMS
- Under Our Skin: The Untold Story of Lyme Disease, directed by Andy Abrahams Wilson, 2009.
- Under Our Skin: Emergence, directed by Andy Abrahams Wilson, 2014.
CHECK OUT THESE VIDEOS
- How to remove a tick https://globallymealliance.org/about-lyme/prevention/tick-removal/
READ THESE ARTICLES
- ILADS 2006 ILADS treatment guidelines
- Tessa Gardner chapter part 1, part 2, part 3 and part 4 about the impact of Lyme disease on the fetus of pregnant women who are infected with it.
- www.lymediseaseguidelines.org provides arguments and references by health professionals which illustrate why current guidelines are dangerous.
- Gestational Lyme Studies, by Charles Ray Jones, M.D., Harold Smith, M.D., Edina Gibb, and Lorraine Johnson, JD, MBA
- Course and Outcome of Erythema Migrans in Pregnant Women, by Vera Maraspin, Lara Lusa, Tanja Blejec, Eva Ružić-Sabljić, Maja Pohar Perme and Franc Strle.
- Congenital Infections in Pregnancy, Dr. John Lambert, Full Professor of Medicine and Infectious Diseases, Mater Hospital and UCD, Dublin.
- A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn, Lisa A. Waddell, Judy Greig, L. Robbin Lindsay, Alison F. Hinckley, Nicholas H. Ogden.
LEARN WHAT FINANCIAL RESOURCES ARE AVAILABLE
- LivLyme Foundation: Foundation provides grants for children that cannot afford their Lyme
- Lyme Treatment Foundation: funds diagnostic tests and treatment in the US and Canada
- LymeLight Foundation:, provides grants for children and young adults
- LymeAid4kids: Created in 2003 by the Lyme Disease Association and author Amy Tan to cover children lacking health insurance
USE THESE PAMPHLETS TO EDUCATE OTHERS:
Mothers Against Lyme offers the following pamphlets for you to bring to school nurses, doctors, friends, camp owners, Boy and Girl Scout troop leaders, and anyone else who would benefit from their information. Print them out, or pass them along digitally. Knowledge is power.
- How to Protect Yourselves and Loved Ones from Ticks
- How to Remove a Tick
- How to Treat a Tick Bite
- Testing Ticks for Disease
- Bring This to Your Pediatrician
- How to Keep Your Pets Safe from Lyme (and other tick borne diseases)
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Click to download printable pamphlet -
Click to download printable pamphlet
AdvocacyThe government is not doing enough to advance research, or dispense information about the plague of Lyme and its effect on mothers, children and families.
READ OUR LETTERS We have already demanded that the National Institute for Health (NIH) begin research on both congenital and pediatric Lyme disease. Letter to Director of NIH and The NIH’s Response. We also demand that The National Institute of Child Health and Human Development (NICHD) add Lyme disease to its list of congenital infections deserving of research money.
PLANS IN PROGRESS
- We will go into medical schools, where learning begins, so future doctors can learn current best practices for prevention, diagnosis and treatment.
- We will recruit doctors to lecture in medical schools and hospitals about correct diagnosis and treatment.
- We will continue writing letters, petitioning for meetings, and organizing marches until our voices are heard.
- We will create an army of mothers, link arms—whether virtually or in person—and insist on the change we need.
About UsMISSION STATEMENT We are mothers, and mother-advocates, concerned with the impact of Lyme Disease and its co-infections on pregnant women, children and families. Our mission includes:
- Advocacy and community-building
- Educating the public and health care workers about the dangers of Lyme disease and co-infections on pregnant women, their children, children in general, and its effect on families.
- Increasing awareness of the dangers of Lyme disease and co-infections on pregnant women, their children, children in general, and its effect on families
- Promoting research that advances prevention, diagnosis and treatment
LEADERSHIP: Meet Our Board & Advisory Board
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Isabel Rose, Co-Chair Isabel Rose is an author, recording artist and public speaker. Having been infected with Lyme disease and several co-infections since early childhood, she is deeply devoted to Lymemore...
disease education and awareness. She is also mother to two Lyme-infected children, one of whom is on the Autism Spectrum and transgender. More information can be found at Isabelrose.com. -
Jane Marke, MD, Co-Founder/Co-Chair Dr. Jane Marke is a Board-certified Psychiatrist in private practice in New York City trained in Intensive Short-term Psychotherapy used in the treatment of trauma, PTSD and more...
relationship issues. Dr. Marke has also trained in Internal Medicine. She treats psychiatric problems of the medically ill and has worked extensively with patients who have chronic illness. In 2013, Dr. Marke became board-certified in Complementary and Holistic Medicine, using food, herbs and nutritional supplements to promote health and healing. Receiving her own diagnosis of Lyme Disease and co-infections in 2009, her practice now is largely but not exclusively made up of patients suffering the psychiatric effects of Tick-Borne Disease, including late teens and early adults who have been ill since early childhood.
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Christina Fisk Christina Fisk, is President of Lyme Action Network, founded in 2009 after her daughter was negatively impacted by the poor CDC standard of care available for Lyme patients. Ms. Fisk, a principle more...
at JIMAPCO, Inc., works closely with members of her local community, as well as with Lyme disease experts and advocates from across the country, to drive change in Lyme disease policy at state and federal levels. She is a founding members of the New York State Coalition on Lyme and Tick-borne Diseases, and participates in advisory capacities on a range of local, state, and national initiatives. -
Monica White Monica graduated with a BS in Wildlife Management from the University of New Hampshire in 1992. After moving to Colorado, she worked as a wildlife biologist and wildland firefighter formore...
the United States Forest Service until becoming ill with Lyme disease and multiple co-infections. She is co-founder and President of Colorado Tick-Borne Disease Awareness Association. She also serves on the Public Tick Integrated Pest Management working group, as well as serving as a subcommittee member on the Federal Health & Human Services Tick-Borne Disease Working Group/Disease Vectors, Surveillance and Prevention Subcommittee in 2018, and Babesia & other Tick-Borne Pathogens Subcommittee in 2020. She is a programmatic panel member of the Congressionally Directed Medical Research Program with the hope of contributing to the change needed to combat Lyme and other tick-borne diseases, especially in children. Monica is a mom of two children infected with Lyme disease. Her husband is infected as well.
Meet Our Advisory Board
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Holly Ahern Holly Ahern is an award-winning professor of microbiology at the State University of New York (SUNY) Adirondack, where she teaches and mentors students in undergraduate more...
research focused on preserving small lake ecosystems in the Adirondack region. As a result of her family’s personal experience with Lyme disease, Ahern co-founded, and is vice-president of, Lyme Action Network. Ahern has served as the Scientific Advisor for Focus on Lyme since 2014. As a scientist and advocate, she is actively involved in New York State and federal legislative initiatives to improve patient access to care. -
Kristina Bauer Kristina Bauer is the Director of Texas Lyme Alliance, a charity dedicated to bettering the lives of congenital and pediatric Lyme patients. Kristina has earned severalmore...
certifications in the health and wellness field, and owned a Yoga studio and wellness center for 14 years. She has also worked on several Lyme disease publications as an editor. Kristina is a Lyme patient, advocate, and mom of 4 Congenital Lyme children. She founded the public Facebook page “Disulfiram for Lyme,” and the private group “Disulfiram Experience for Lyme Support group” with over 5,000 members.
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Sue Faber, RN, BScN Sue Faber, RN, BScN, is the Co-founder and President of LymeHope, a Canadian not-for-profit organization focused on education, public outreach, research, awareness, and advocacy, for Lyme disease. more...
Sue is committed to partnerships with Federal and Provincial 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. Sue’s expertise is the literature that exists on maternal-fetal transmission of Lyme and congenital Lyme borreliosis; 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. -
Bruce Fries, Co-Founder Bruce Fries began his work as an advocate for Lyme patients in 2014 by conducting a series of campaigns focused on exposing the harm caused by the IDSA guidelines for Lyme disease. In 2015 he founded the more...
Patient Centered Care Advocacy Group to advocate for research, policies and funding to improve the federal government’s response to the epidemic of Lyme and related tick-borne diseases. His current focus is on fostering collaboration between stakeholder organizations and federal agencies to advance research on congenital and pediatric Lyme disease. -
Rosalie Greenberg Rosalie Greenberg, MD, FAPA, DFAACAP is a Board Certified Adult, Child and Adolescent Psychiatrist in private practice in Summit, New Jersey, specializing in the diagnosis and psychopharmacological more...
treatment of pediatric mood disorders, psychiatric symptoms secondary to tick-borne infections and Pediatric Acute-onset Neuropsychiatric Syndromes. Dr. Greenberg is a graduate of Columbia University College of Physicians and Surgeons where she did her adult and child psychiatric training, and had served as an Assistant Professor in Clinical Psychiatry for several years. She has published multiple articles in the medical and lay press and has presented nationally and internationally on childhood mental illness. -
Monte Skall Monte Skall is the Executive Director of the National Capital Lyme and Tick-Borne Disease Association (NatCapLyme), a non-profit organization dedicated to Lyme and tick-borne disease education, more...
prevention, research and patient support. Bitten by a tick in 1991, it took seven years and over a dozen doctors before Monte was diagnosed and treated. For the last 18 years, she has fought for the rights of Lyme patients; a journey that has made her a nationally recognized leader in the Lyme patient advocacy community. Monte has testified, lobbied and educated at all governmental levels about Lyme and tick-borne diseases and is a frequent invited speaker at area clubs and associations on the topic of Lyme disease awareness, prevention and treatment options. She has been a hospital trained support group facilitator at Johns Hopkins Sibley Memorial Hospital since 2001, helping patients and their families to cope with Lyme and tick-borne diseases. 
Dr. Ronald Wilson, M.D. has been treating those with chronic and disseminated Lyme Disease and coinfections since 2004. Lyme disease had a devastating effect on his family. Because more...of this, he has committed himself to improved treatment for those who suffer from Lyme disease. To that end, he has attended every ILADS Conference since 2004, and has had the pleasure of participating in two preceptorships with recognized experts in the diagnosis and treatment of tick-borne diseases. Dr. Wilson specializes in OB/GYN and Lyme practice.