The Looming Question of Lyme and Pregnancy
Buffie LaRocca of Cheyenne, Wyoming, has seemingly tried everything. She’s even tried forms of treatment that some may deem dangerous. “I’ve had doctors give me IV drips of hydrogen peroxide,” she confesses. “I’ve had ozone put up my rear end.” People have reached out to her and told her to treat herself with methods as extreme as drinking Borax and bathing in bleach.
“In the way of treatment…the more [you] dive into treatment options, the crazier and crazier you start to feel.” LaRocca says.
LaRocca is not alone as a patient.
If untreated, this infection can lead to additional muscle and joint pain, dizziness or shortness of breath, memory problems, and nerve pain, to name a few of the lasting symptoms from the CDC website.
The disease? Lyme. And while the treatment, longevity, and testing for Lyme disease has been hotly contested among patients and medical professionals, another concern has been unearthed.
Can Lyme be passed on from mother to child?
Dr. Norton Fishman has worked with Lyme patients, and practices as an internist and CNS (certified nurse specialist) in Maryland. He is also a fellow of the American College of Physicians.
“Assuming that the pregnant woman knows she has Lyme, knows that it still may be active….I think the key is having her on fetal safe antibiotics during the pregnancy to prevent transmission in utero.” Dr. Fishman suggests.
Awareness is key. You can’t treat something if you don’t know you have it. And DeAnne LeBlanc wishes she had known.
LeBlanc is a freelance writer and blogger in St. Louis, Missouri, who has chronicled her struggles with Lyme disease through her writing.
She’d found an engorged tick in her belly button after rescuing a puppy covered in them back in 2003, she says. It may have been there for over a week. Shortly after, she began experiencing new medical complications, such as panic attacks, insomnia, and fatigue. By 2004, she was pregnant. Eventually, she experienced preeclampsia and was induced into labor early.
She had a second child, and explains her health trajectory as a downward spiral after that. Her youngest daughter started to display many of the same symptoms. Both she and that daughter tested CDC positive for Lyme.
“I am absolutely certain, as are my doctors, that I passed it to her in utero or through breast milk. I did not know I had Lyme disease at the time of my pregnancies or their births,” she says. She did point out that her pregnancy with the child who has not tested positive for Lyme was worse than the pregnancy with the child who did end up testing positive for Lyme, so she cannot attest that the Lyme aggravated the pregnancy.
Her experience with natural treatments did not help, and the oral antibiotics did not improve her neurological symptoms.
Buffie LaRocca runs her own blog about Lyme disease, titled Those Lymie Bastards, and is in the process of starting her own Lyme non-profit, Tapped Out. She has written about the topic of Lyme disease and motherhood.
“I mean, I know that I had been bitten in my early twenties…” she says, and guessed that she had been bitten twice in her life, but never experienced a telltale bullseye rash, or any flu-like symptoms after the tick bites. So, going into her pregnancy, Lyme was not an immediate question.
She then had complications getting (and staying) pregnant.
“I finally carried a baby at least seven months, and then had a really scary preterm baby that was in the NICU for about three months.”
She went through various tests to try answer why she had such a difficult pregnancy and early delivery.
“To this day, I don’t know if I would have still had those same problems had I not had the Lyme disease, but I have healthy sisters who have healthy babies, and nobody in my family has had any issues with pregnancy, or anything like that.”
She eventually received her Lyme diagnosis years later.
“I don’t have any proof that one caused the other but, boy, I’d sure gamble on it,” she says.
Still, there is no concrete research to prove that Lyme complicates pregnancy.
“If someone has relatively mild Lyme disease, for example, simply a skin rash, or maybe mild arthritis, there is very little evidence that Lyme disease would damage a baby,” says Dr. Patrick Duff, who practices in the Division of Maternal Fetal Medicine at the University of Florida College of Medicine in Gainesville, Florida.
LaRocca also tested CDC positive, a test that some patients and doctors say will fail to diagnose patients even when they are Lyme positive. She was not convinced, and didn’t trust her test showing as positive, so she went to a clinic and looked at her blood under a microscope to see the spirochete (the bacteria from Lyme) herself.
This was two years after she had been put on antibiotics from her initial tests, and told it was no longer in her system.
As for antibiotics, doxycycline is definitely not recommended for pregnant women. “If a pregnant woman has Lyme disease, she certainly should be treated with antibiotics, because usually a short course of antibiotics will clear the initial infection and there won’t be any long term sequela,” says Duff. A pregnant woman diagnosed with Lyme should be sure she is on pregnancy safe antibiotics.
Lyme treatment can be expensive, scrutinized, and often goes without insurance coverage. Patients can feel as though their doctors don’t believe them, or that they’re being taken advantage. There is not enough research to support the homeopathic and alternative therapies often routed their way.
LeBlanc’s doctor would sometimes put the technical term for Lyme (Borreliosis) on her paperwork instead of Lyme, since the term can be a loaded diagnosis in the insurance world. LaRocca went to an eight week all-natural clinic that “did nothing for me,” she laments, “and that was $18,000 out of pocket”. LeBlanc eventually found relief through long term IV antibiotics*.
“The science will tell you that this is a bacterial infection that warrants antibiotics. I think where you are seeing some of the desperation is in patients who have perhaps been treated initially, and then developed some chronic symptomatology, that may or may not be due to some lingering effect of Lyme disease, and they are sort of desperately searching for solutions to their condition,” says Dr. Duff. Doctors urge these patients to consult infectious disease specialists. Lingering symptoms from Lyme may no longer be due to prevalent infection, but nerve damage or other side effects.
In the end, having Lyme and wanting to be pregnant should not be mutually exclusive.
“Don’t let it dictate what you can and can’t do,” says LeBlanc. “I would still choose my girls over and over again. This is just a part of our lives. It is not who we are.”
*LeBlanc later followed up with me to add that she’d had nine months of IV antibiotics, three times a day, aimed at helping the neurological and heart symptoms associated with the Lyme disease. To avoid strain on her veins, she’d had a port implanted in her chest. All of this was supervised by St. John’s Mercy hospital (St. Louis, MO).