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Guestwords: Passing Down Lyme Disease

Wed, 05/17/2023 - 17:50

May is Lyme Disease Awareness Month. Perhaps this is why the 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.

Paisley’s song does a great job normalizing the importance of full-body tick checks, but it doesn’t convey — nor does any current messaging — the frightening fact that Lyme can not only be transmitted by a 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, including one who was an infectious-disease specialist.

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

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

Why do so many cases of Lyme disease go undetected or misdiagnosed? Simple. Current C.D.C.-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 bull’s-eye 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, depression, and even dementia.

As for the babies of those infected by Lyme, we currently do not have any clinical guidelines to diagnose, treat, or follow a child who may have been infected in utero. Nor is there comprehensive, clear guidance regarding treatment of a person who may have been infected either during pregnancy or before it. The sole guidance the C.D.C. offers for someone who wants to get pregnant is to take antibiotics. But how much and which ones are left up to the person with the uterus and her practitioner.

“Further research is needed,” the C.D.C. writes on its website, leaving a giant question mark as to the safety of getting pregnant after a Lyme infection. And congenital transmission between a mother infected with Lyme and the fetus is “possible but rare,” according to the C.D.C.

Anecdotal data suggest otherwise.

In 2021, a full 36 percent of the LivLyme Foundation’s 974 grant applicants seeking financial support for treatment reported having transmitted Lyme disease to their children in utero. The LymeLight Foundation, which also offers treatment grants, reported that 45 percent of applicants transmitted Lyme disease in this way. Mothers Against Lyme, a Project Lyme initiative, runs support groups for families affected by the disease. Its number was 69 percent.

These statistics do not suggest that transmission in utero is rare. They suggest we have a massive problem we’re not talking about, treating, or 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 H.W. Bush issued a proclamation noting, “Lyme disease in pregnancy can result in miscarriages, stillbirth, and birth defects.”

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

In his study of 102 live births to mothers with confirmed cases of Lyme disease, the late pediatric Lyme specialist Dr. Charles Ray Jones reported that 80 percent of the children in his study had cognitive problems, learning disabilities, and mood swings, 72 percent had fatigue and lack of stamina, and 9 percent had autism.

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.

Isabel Rose is co-chairwoman of Mothers Against Lyme, a Project Lyme initiative. She lives part time in East Hampton.

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