Beyond Ticks: What Every Parent Needs To Know About Lyme Disease

“I’ll transfer you back to the front desk to set up an appointment.”

I gulped. “Thank you, Doctor.”

My head was spinning and my heart was racing.

“Hi, Ms. Webb, let’s get you scheduled,” I almost bristled at her casual, everything-is-normal tone. Nothing was normal.

“Congratulations, by the way,” she said as she clucked off dates for an appointment.

“What?”

“Congratulations on getting a diagnosis. You’re very lucky. Most people go years being misdiagnosed or told it’s all in their heads.”

I hung up the phone trying to process it all. My daughter had Lyme disease. An answer to her ongoing physical and neurological symptoms was a good thing, right? Right? I repeated this question to myself as I paced around my house.

I didn’t fully grasp what all of this meant at the time. I knew there would be a learning curve. I knew there would be confusion and fear.

But I didn’t know that there would be so much animosity towards the disease itself. I didn’t know that doctors (many, many doctors) would deny the existence of the thing that is keeping your child bedridden. Or in pain. I didn’t know that the standard treatment was not even a Band-Aid, but more of a dismissive pat on the head. The equivalent of looking under the bed for a monster to appease a child when you know the monster doesn’t exist.

Except the monster is real and it’s wreaking havoc on people’s lives.

The monster is Lyme disease. And it’s real and living inside an increasing number of children and adults in the U.S. The CDC estimates over 300,000 new cases of Lyme per year. Only ten percent of which are actually diagnosed. Which means the monster is living in 90% of those infected WITHOUT THEM KNOWING WHAT IS MAKING THEM SICK. There are children and adults who are suffering from organ failure, severe joint pain, muscle weakness, difficulty breathing, seizures, suicidal thoughts, extreme anxiety, hallucinations, psychosis, and dementia just to name a few symptoms. And by the CDC’s own estimates, roughly 270,000 of them don’t know that it’s Lyme causing these symptoms.

Why do so many people not know they have Lyme? Why is treatment so hard to find and so expensive? At the core of the problem is that Lyme disease has been politicized.

A disease that affects untold numbers of children and adults — one that is growing by 300,000 new infections each year — has been politicized. And when things, especially medical conditions, become politicized, people suffer. Money/power/control become prioritized over health and quality of life.

The Center for Disease Control has endorsed Lyme Disease guidelines set by the Infectious Disease Society of America (IDSA). The IDSA was found to be be compromised by conflicts of interest by a Connecticut Antitrust investigation in 2006: “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests—in drug companies, Lyme disease diagnostic tests, patents, and consulting arrangements with insurance companies—to exclude divergent medical evidence and opinion.” The IDSA did not follow the The National Academies of Sciences, Engineering and Medicine recommendations on how to develop treatment guidelines.

Let that sink in. The organization tasked with setting treatment and diagnosis guidelines for a growing, debilitating and sometimes deadly disease, was influenced by moneyed interests and failed to follow basic protocol for establishing the very guidelines that the CDC and doctors around the country rely upon.

“Congratulations on her diagnosis.”

These words would haunt me as I learned more about the disease ravaging my child’s body and mind.

We have no idea when my daughter was infected with Lyme. We never saw a tick on her. She never had a rash. We watched as vague symptoms became more serious over the years.

We were lucky. We didn’t have to go through 10 or 20 or 50 doctors before getting a diagnosis. We were lucky because we won the Lyme testing lottery. Antibodies just happened to show up in her blood at the moment we tested my daughter. Timing is everything when testing for Lyme. The tests only detect the body’s immune response to infection, rather than detecting the Lyme bacteria itself. Many patients get false negatives for years while their symptoms worsen before finally testing positive.

Lyme tests are not reliable. The tests are over 30 years old and woefully inadequate for an evasive bacteria. In fact, Virginia and Maryland have passed Lyme Disease Testing Disclosure Acts requiring doctors to inform patients that a negative test does not mean they are not infected with Lyme. Yet doctors all over the country tell patients that a negative test means there’s no possibility they have Lyme.

The CDC insists on inaccurate two-tiered testing that detect less than 50% of Lyme infections. This is devastating to patients. It makes it that much harder for patients to get diagnosed and treated. And because insurance companies use the CDC guidelines to deny coverage, patients are left to pay out of pocket or not get treatment at all. The monster is living inside of them, yet a system is set up to deny the monster’s existence, creating a convenient off-ramp for insurance companies.

The CDC seeks to appease us by checking under the bed, seeing the monster, and walking out of the room without actually doing anything about it.

But people are starting to speak up. They are educating themselves and connecting with other patients. Celebrities have shared their own Lyme stories. And for every celebrity that has publicly talked about their struggles with misdiagnoses and lyme, there are countless others who suffer the same fate. If the wealthiest among us suffer for years, decades, without a diagnosis and treatment, where does that leave the rest of us?

Sick. It leaves us sick.

Kris Kristofferson had been declining physically and cognitively for years and was diagnosed with Fibromyalgia and Alzheimers. He eventually found a doctor who diagnosed him with Lyme. He’s now recovering after receiving Lyme treatment.

Darryl Hall spent ten years with flu like symptoms and muscle twitching before he got a Lyme diagnosis.

Allie Hilfiger, daughter of designer Tommy Hilfiger, suffered from debilitating symptoms and misdiagnoses for 14 years. She eventually ended up in a psychiatric hospital after a psychotic episode, where a psychiatrist suggested she get tested for Lyme.

Dr. Neil Spector, Director of Developmental Therapeutics at Duke Cancer Institute and a leader in his field of Cancer research, almost died because of his undetected, undiagnosed Lyme disease. He suffered irreversible heart damage due to Lyme and eventually had a heart transplant. He had three negative Lyme tests before a test showed Lyme antibodies. He says Lyme is the “infectious disease equivalent of cancer.” Yet mainstream medicine is “hanging on to 1950’s research” when it comes to Lyme.

An adolescent boy was diagnosed with sudden onset schizophrenia. It took 18 months for a doctor to notice signs of Bartonella (a common Lyme co-infection.) Take a moment and imagine what would become of this child if one doctor didn’t happen to notice signs of Bartonella? A lifetime of living with a false diagnosis that doesn’t respond to medication? Institutionalization? Prison?

Alec Baldwin, Avril Lavigne, Yolanda Hadid, Kelly Osbourne, and others with access to endless funds and doctors around the world suffered for years before getting diagnosed and treated for Lyme.

You can see where that leaves the average patient. You can see why parents and patients have to make researching treatments and learning all about Lyme a full time job. Why so many suffer because diagnosis is too expensive or because they have run out of money after false negatives. Why patients are left alone to suffer because no diagnosis means no treatment and no insurance coverage and sometimes being abandoned by family and friends who don’t believe the monster is under the bed unless a doctor and a fickle test say so.

Lyme disease has been politicized. And it’s only getting worse every year. The effects are devastating. Here’s what you need to know as a parent and caregiver:

Lyme disease is one of the fastest growing infectious diseases in the U.S. and Western Europe.

An estimated 329,000 people are diagnosed with Lyme EVERY YEAR in the U.S. according to the CDC.

Fewer than 50% of Lyme patients remember a tick bite. Less than 50% had the tell tale bulls-eye rash.

Many ticks are almost impossible to spot. The nymph stage is the size of a poppy seed. Nymphs can and do transmit Lyme.

Some signs and symptoms do not appear until days/weeks/years after infection.

There are different strains of Borrellia (Lyme) and hundreds of co-infections. Symptoms vary between patients and Lyme is called “the great imitator” because it is so often misdiagnosed as other diseases (Dementia, Bipolar Disorder, Schizophrenia, Rhuematoid Arthritis, Lupus, Fibromyalgia, Crohn’s Disease, Anxiety, Depression, OCD, Syphilis, Multiple Sclerosis, Parkinsons)

The World Health Organization has added Lyme Dementia to it’s diagnostic codes.

Update, one year after my daughter’s diagnosis: We are treating my daughter’s Lyme disease and co-infections in stages. We are using a combination of herbal supplements, Des Bio homeopathic Lyme treatments, and antibiotics. Each co-infection requires a different treatment so the progress is slow, but there is definite progress. In the last few months, she tested positive for mold exposure (likely exposed in a rental we lived in five years ago), which adds complications and another issue to contend with before she can fully heal from Lyme. We are seeing a doctor who specializes in hard to treat illnesses and most of the costs have been out of pocket. We’ve been able to try different approaches and order lab tests to cover all possible issues, something that would be out of reach for most families.

Lyme disease is not a one-size-fits-all disease. It manifests itself differently in each patient and responds to different treatments. While our journey has been scary and exhausting and frustrating, I know that we are so lucky to be able to afford to treat her and lucky to find a doctor who listens to her and takes her symptoms seriously. This is why education and advocating for the medical community to wake up and recognize this illness is so important.