Lyme has devastated my family–physically, financially, and emotionally
The following was submitted as a written public comment to the federal Tick-Borne Disease Working Group.
By Monica White
I am writing today as an advocate, as well as a patient, wife and mother of two children with persistent Lyme disease and multiple co-infections.
I served as a subcommittee member for both of the Tick-Borne Disease Working Group panels. This year’s panel is vastly different from the first panel (2018) in that there has been a huge lack of patient representation in the Working Group as well as within subcommittees.
What happened? With Pat Smith as the lone patient representative on the Working Group, she is shouldering the weight of the entire community alone—a community for which this Working Group was mandated to address to improve their quality of life.
This lack of patient representation has resulted in the issue of chronic/persistent Lyme being ignored and dismissed, much like the growing number of the patients that have suffered and continue to suffer from these persistent and chronic forms of disease.
My doctors couldn’t recognize Lyme
Prior to illness, I was a fully functional, active, happy and productive member of society. I was asymptomatic and undiagnosed at the time of my children’s births. When I became noticeably ill after the birth of my second child, our lives changed dramatically. I spent 7 1/2 years seeking diagnosis for a progressively debilitating illness for which none of my doctors had any experience to diagnose or treat.
Worse than that, the potential for Lyme disease as a diagnosis was completely dismissed because I resided in a “low incidence” state that repeated the mantra “you can’t have Lyme, Lyme doesn’t exist here.”
Regardless of the fact that I had been born and raised in an endemic region, traveled and recreated in other endemic regions, and worked in a high risk profession as both a wildlife biologist and wildland firefighter, I was denied access to testing for three years once Lyme disease became a diagnostic question initiated by me. I was denied access to testing and care because physicians relied on the incomplete and biased information provided on the CDC webpage.
My life and the lives of my children and husband deteriorated due to these chronic/persistent infections (Lyme, Babesia, anaplasmosis, tick-borne relapsing fever) that had been undiagnosed and untreated in all of us for years. We were confused by multiple relapsing medical issues for my husband and both of our children, without knowing the root cause.
Adequate resources and accurate information regarding these diseases were not available to us nor to any of the physicians that we sought care with. Due to abnormalities in my blood work, I suspected anaplasmosis. When I asked, my primary care physician had never even heard of it. When given the opportunity, I eventually tested positive for anaplasmosis through multiple labs.
ER docs dismiss “classic” symptoms
My son was misdiagnosed at an ER visit for which he displayed classic symptoms of tick-borne relapsing fever, the same ER that dismissed yet another young person in our community with the same illness. How are physicians to diagnose diseases for which they have no education nor knowledge of? Improved physician education is needed for both acute and chronic/persistent tick-borne infections and conditions.
Had I not become completely debilitated and continued to advocate for myself and my family, we may never have gotten properly diagnosed. I was a healthy individual without even a primary care physician prior to the onset of illness. I had only a OB/GYN for prenatal care and the birth of my children.
Once symptoms developed, I then had consults with almost every “specialist” imaginable, was subjected to various non-telling procedures and exams, too numerous to recount, all the time displaying many of the “classic” Lyme disease symptoms.
Not a single physician considered Lyme in the differential diagnosis. I was ridiculed by physicians and told falsehoods about the disease when it was finally on my radar to inquire. Both children followed suit,with no diagnosis and no explanation for the bizarre symptoms from which they suffered.
I lost my career as a federally employed wildlife biologist because I became too sick to work, my children have struggled for years with school due to repeated and extended illness that impacted their ability both to learn and to attend classes. It impacted their ability to participate in “normal” childhood activities, sports, parties, extracurricular activities and friendships.
Too many birthdays spent in bed, holidays skipped, trips cancelled, friendships lost. No child should lose their childhood due to unrecognized, persistent tick-borne diseases. My son is now enrolled online to have any access to his education, as the schools were unable/unwilling to accommodate to the extent needed for him to succeed.
Financial and emotional devastation
We have been devastated physically, financially, socially, emotionally. Loss of income and mountains of medical bills and travel expenses to access doctors have devoured our financial resources. No one should have to be buried in debt for access to care for infection with the most common vector-borne disease in the US, regardless of where they live in the country.
Our marriage has been tested beyond a breaking point multiple times, something that many families/couples with Lyme cannot withstand. Chronic and persistent disease breaks marriages and families apart.
Treatment has been aggressive, with each of us responding to various degrees with different combinations of antibiotic over different and extended time frames. We had to travel thousands of miles to seek proper diagnosis and treatment for diseases that physicians in our state knew nothing about or worse, denied the existence of. Improvements for each of us came only with aggressive and extended combination antibiotic treatment. For years, every time antibiotics were withdrawn, illness would relapse. Only after the new treatment with disulfiram, have I been able to maintain the gains in my health with any lasting success.
Am I out of the woods? Will my children ever be out of the woods? How can we ever know without the benefit of reliable direct testing methods needed to assess status for the multiple infections that ravaged each of our bodies and minds?
You must address persistent infection and chronic disease. A growing number of researchers have demonstrated that persistent bacteria exist in previously treated animals as well as humans.
This is the reason that the TBDWG was established. This year, the panel has failed to acknowledge the mothers, fathers, and children whose lives have been derailed and lost. The Lyme community has been ignored by the government and the medical system for over 40 years. You must do better!
Monica White co-founded the Colorado Tick-Borne Disease Awareness Association. She has served on several governmental panels and subcommittees related to tick-borne diseases.