Congenital Lyme disease
Opening remarks at the NIH/NICHD
As Chairman of the Board of Mothers Against Lyme—an advocacy group concerned with the impact of Lyme disease, and it’s co-infections, on pregnancy— I met with the NIH and NICHD on December 7, 2020. Joined by several board members, my job was to set up their personal testimonies in regard to the terrible impact of Lyme disease on their lives, and the lives of their children. My words are applicable to other diseases. Perhaps they can be of use to some of you in your own advocacy. www.MothersAgainstLyme.org
ISABEL ROSE REMARKS
One incorrect statement from an influential source can ruin lives.
The Infectious Diseases Society of America recently published such a statement.
“To date,” they claim in their newest guidelines, “Lyme disease in pregnancy has not been found to result in congenital infection or syndrome of abnormalities, and no additional treatment or monitoring of the mother or infant is recommended beyond the standard of care.”
I repeat: one incorrect statement from an influential source can ruin lives. In fact, that one sentence left me feeling temporarily paralyzed. I even wondered if Mothers Against Lyme should continue our work, such was the degree of my personal morale collapse.
But as my emotion mellowed, I realized the wonderful opportunity we were given: the opportunity to share some data the IDSA may have missed.
So, I’m here; here as a representative.
Here because I know, like many women, I will never forget the moment at my 36-week sonogram when the technician said, “There’s a problem.”
I’m here because, like many women, I will never forget the day I heard, “There are many early interventions for children with developmental delays.”
I’m here because I will never forget the sound of my four-year-old daughter’s screams as a nurse poked her with a fresh I.V so my little one could get the antibiotics she needed for the Lyme disease our pediatrician swore would be completely cured after two weeks; a daughter who, at 19, is still struggling with chronic Lyme disease and it’s longterm consequences.
I’m here because I never saw a bullseye rash: not on myself; not on either of my children.
And I’m here because so many people — including doctors, and mothers, and women who are hoping to become mothers — still incorrectly think that if their Lyme test, or their child’s Lyme test, comes back negative, they don’t have Lyme.
I’m here because, until we get a reliable Lyme diagnostic, I want every OB to know what Lyme symptoms look like, so they can offer appropriate and available treatment to their patients who may be at risk, not just of passing their infections on to their offspring in utero, like I did, but at risk of having those infections damage their developing child in utero, like my infections did.
And I am here because, after suffering countless misdiagnosed physical and neurological assaults for 48 years, it was not until four years ago that I was finally properly diagnosed, and then successfully treated, for Lyme disease, as were both of my children shortly thereafter, and my 78-year-old mother — a woman who has spent much of her life suffering from what her doctors call Rheumatoid Arthritis but which I now call Lyme.
I know that correlation does not equal causation. But I also know that research is inspired by stories from the trenches, where I am, and where so many other women are, our sleeves rolled up, our hands dirty, our nails shredded or bitten to stumps. Maybe hearing some of our abbreviated stories will help convince you that further studies are critically needed.
