CAN LYME PASS FROM MOTHER TO FETUS IN UTERO? SCIENCE SAYS YES, PUBLIC OFFICIALS SAY…NOTHING

Lyme disease can pass from mother to baby in utero whether you know you’re infected or not.

May is Lyme Awareness month. Perhaps this is why country singer Brad Paisley’s delightful tune “Ticks” played over my car radio the other day. The song tracks the thoughts of a man staring at a beautiful woman at a bar. He wonders what it would be like to walk her through a field of wildflowers before checking her body for ticks.

I wonder what would happen to their resulting baby should he miss one.

A wry song like Paisley’s — both sexy and funny, light and serious — can do more to normalize the importance of full body tick checks and to raise awareness of the dangers of tick-borne diseases than any government messaging. But what’s missing from all of the messaging we do receive, and from the general medical knowledge base itself, is that Lyme, if not treated immediately and aggressively, can not only become a chronic, systemic nightmare for the person bitten by the tick, it can also be passed, in utero, from mother to child.

What, you didn’t know that? Neither did I. But I am a Lyme-infected mother — finally diagnosed at 48, after being infected from a tick bite when I was 8 — who passed on Lyme to her children. In other words, I infected both my children unknowingly, even though I had clear Lyme symptoms prior to, and during those pregnancies that went unacknowledged by dozens of doctors. I should add that one of those doctors, my GP, is an infectious disease specialist.

Today, to keep this from happening to others, we need to get the word out to other Lyme-infected mothers-to-be and to women of childbearing age who have mysterious, systemic health issues with no clear cause. We also need to reach the government officials who’ve been dragging their feet on this issue, and we need to reach primary care physicians, OB/Gyns, and pediatricians, who are the first line of defense. Researchers also need more funds to study our bodies and those of our children.

An estimated 500,000 new cases of Lyme disease are reported annually by the CDC, a number that probably grossly underestimates the actual figure as it only includes those who’ve tested positive.

Why do so many cases of Lyme disease go undetected or misdiagnosed? Simple. Current CDC-approved blood tests are frequently inaccurate, resulting in countless numbers of missed cases. Moreover, because Lyme remains a clinical diagnosis at this time, noted only at first (and rarely, at that) by a bullseye rash and flu-like symptoms, doctors and civilians alike are often ignorant of its complex symptom profile. It is often misdiagnosed as any number of other ailments, including arthritis, fibromyalgia, chronic fatigue, and clinical depression.

As for the babies of those infected by Lyme, there are currently no clinical guidelines to diagnose, treat, or follow a child who may have been infected with Lyme disease in utero. Nor is there comprehensive, clear guidance regarding treatment of a person who may have been infected with Lyme disease either during pregnancy or prior to it. The sole guidance the CDC offer for someone infected with Lyme who wants to get pregnant is to take antibiotics. But how much or which ones are left up to the person with the uterus and their practitioner.

“Further research is needed,” the CDC write on their website, leaving a giant question mark as to the safety of getting pregnant after a Lyme infection. Moreover, they posit that congenital transmission between a mother infected with Lyme and their fetus is “possible but rare.”

Anecdotal data suggests otherwise. In 2021, a full 36% of the LivLyme Foundation’s 974 grant applicants seeking financial support for treatment reported having transmitted Lyme disease to their children in utero. LymeLight Foundation, which also offers treatment grants, reported that 45% of their applicants transmitted Lyme disease to their children in utero. Mothers Against Lyme, which runs support groups for families affected by Lyme disease, finds that 69% of their participants have passed Lyme Disease onto their children in utero.

These statistics do not suggest that transmission in utero is rare. They suggest we have a massive issue we’re neither talking about, treating, nor spending research dollars to investigate.

The consequences of congenital Lyme can be profound, both on pregnancy and its outcome. The first case report was published in 1985. It concluded that Lyme disease during pregnancy had resulted in the premature death of the fetus. In 1989, President George HW Bush issued a proclamation noting, “Lyme disease in pregnancy can result in miscarriages, stillbirth, and birth defects.”

Should the Lyme-infected baby survive, its path forward can be difficult.

The late pediatric Lyme specialist Dr. Charles Ray Jones, in his study of 102 live births to mothers with confirmed cases of Lyme disease, reported that 80% of the children in his study had cognitive problems, learning disabilities, and mood swings; 72% had fatigue and lack of stamina; 9% had autism. Both of my children are on the autism spectrum, as are many of the children of the women in my Lyme disease support groups.

Federal agencies warn of the dangers of passing Zika and West Nile viruses onto a fetus and provide guidelines to those seeking pregnancy who’ve been infected with them. Why not Lyme, a far more common vector borne infection?

So, Brad Paisley, if you’re listening, here’s what we need: a new hit song we mothers with Lyme who have Lyme-infected children can sing in the halls of Congress, begging our public officials to take action. We need to fund more studies of congenital Lyme. We need proper messaging to warn mothers and their doctors of the dangers of passing on Lyme in utero. We need better diagnostics, and we need to normalize testing pregnant mothers and their babies for Lyme disease in the same way “Ticks” has normalized the importance of full body tick checks. Something like “Mammas, Don’t Let Your Babies Grow Up to Be Dismissed, Discounted, Sick, and Unstudied,” but, you know, catchier.