Madison Area Lyme Support Group

by Jenny Lelwica Buttaccio
Posted 5/31/19

“It was all very scary,” says Dorothy Leland, recalling the months leading up to her daughter Rachel’s diagnosis of Lyme disease. “We saw our child disintegrating before our eyes. We wondered: Was she going to die? Was she going to always be in this state?”

It was March 2005 when 13-year-old Rachel first developed severe, migrating pain throughout her body. It started with pain related to a sprained wrist during a soccer game, an injury which Leland expected to subside quickly. But Rachel’s recovery didn’t go as planned, and by the following week, the pain had shifted to her knees and one ankle, significantly impeding her ability to bear weight or walk. She needed a wheelchair to navigate her junior high school campus.

An x-ray didn’t reveal any clues as to what was causing such debilitating pain. After a trip to a rheumatologist and an extensive workup, Rachel was given a preliminary diagnosis of juvenile rheumatoid arthritis (JRA) and a prescription for prednisone, a steroid. However, her health dramatically worsened shortly after starting the medication, and Leland thought it best to discontinue it and promptly notified the doctor’s office.

A few days later, the results of the lab tests her rheumatologist had ordered were in — Rachel didn’t have JRA after all, and the doctor had no further insights or treatment suggestions. During the same span of time, a neighbor inquired about whether or not Rachel had been tested for Lyme disease. She hadn’t, so Leland asked the rheumatologist if her daughter’s symptoms could be related to the illness.

In an all too familiar story, the doctor dismissed the idea of Lyme disease, insisting that the tick-borne infection wasn’t present in California where they lived. Though the Leland family had traveled and enjoyed outdoor activities in other states and countries, he maintained his position that Rachel couldn’t have contracted Lyme.

“The doctors didn’t seem to be dealing with the same realities we were dealing with,” says Leland, who is now the vice president and director of communications for lymedisease.org and co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. “Something terrible was happening, and the places you normally reach out to for help weren’t able to do anything. They would say, ‘She’s fine. There is nothing wrong with her.’” But Rachel was most definitely not fine.

There were times when Rachel would cry, yell, thrash around, and hyperventilate, Leland describes — out of character for her energetic, sports-loving teenager. Eventually, Rachel would have two Lyme tests — both came back negative, making the diagnosis of Lyme disease seem unlikely, especially because Rachel had no recollection of a tick bite. But the family persisted in their efforts to find someone who could help Rachel, even visiting a renowned children’s hospital in July 2005, four months after the jarring onset of pain.

The hospital’s explanation for what was wrong with Rachel? It was psychological.

“They said I was overly engaged in Rachel’s life, and that was the reason it was psychological,” says Leland. “That was very hurtful and really undermined my confidence as a mother. I thought, really? This is my fault? That was very hard to hear.”

As Leland describes in her book, the hospital took a “mind over matter” approach to treating Rachel’s pain — there wasn’t anything physically wrong with her, so if she could push through the pain of physical therapy sessions without any reliance on assistive devices like wheelchairs, she’d get better, they believed. They cautioned Leland against enabling or “coddling” Rachel, squashing a mother’s instincts that there might be something physically wrong with her daughter. However, the physical therapy sessions began to make Rachel worse, and the Lelands were left wondering what their next move would be.

Finally, an alternative healer using acupuncture and herbal therapies offered a glimmer of hope. Despite two negative Lyme tests, he believed Rachel did have the disease, though, he didn’t know how to help her. He suggested Leland take Rachel to a doctor who specialized in treating Lyme, but knowing where to begin the search was a Herculean feat. Lyme resources were scant, and online support groups like the ones currently found on Facebook didn’t exist yet.

Leland immersed herself in research and discovered a Lyme specialist two hours away from their home who had a particular interest in treating chronic and persistent Lyme disease and other tick-borne infections. In November 2005, she received a life-changing phone call. The doctor had a cancellation in his schedule, and he could see Rachel the day before Thanksgiving.

“We all still remember that day,” Leland says. “We didn’t know what was going to happen. We were following any thread we could.” That appointment would provide Rachel with a diagnosis: Lyme disease. And, it would set the stage for her to heal. Although the recovery process was long, Rachel, now an adult, is doing well and living her life, Leland says.

Leland’s story illustrates some of the obstacles parents of children with chronic and persistent Lyme disease face when trying to find a doctor, obtain an accurate diagnosis, and pursue treatment. Furthermore, because children with Lyme disease tend to look well, they often aren’t believed by peers, teachers, doctors, and family members — we even received stories from parents whose children had been the victims of bullying and harassment because of their illness.

10 Current Views on Lyme Disease in Children

Conservatively, there are more than 300,000 new cases of Lyme disease each year in the United States, reports the Centers for Disease Control and Prevention (CDC), about 25% of which occur in children. We say “conservatively” because these numbers are suspected by many to be highly underreported — just one illustration of the countless complexities of Lyme disease in general, and especially in young people.

To begin to unravel the mystery of Lyme disease and children, it helps first to know some facts and the areas of controversy surrounding this illness.

1. The Annual Incidence of Lyme in Kids is Higher Than You Think.

There are approximately 75,000 new cases each year, or about 205 per day — that’s more than the annual incidence of pediatric cancer, type I diabetes, and epilepsy combined in the U.S., reports Children’s Lyme Disease Network (CLDN).

2. Children are Prime Targets for Tick-Borne Illness.

This is due to two main factors — kids’ proximity to the ground, and their penchant for outdoor activities like playing in the leaves, both of which can increase their chances of coming in contact with ticks. The majority of Lyme cases in children tend to occur between ages 5 and 9, states the CDC, and boys are more likely to contract Lyme disease than girls in the U.S.

3. Bull’s-Eye Rashes Are the Exception, Not the Rule.

The CDC indicates the classic bull’s-eye rash (erythema migrans or EM rash) shows up in 70-80% of people infected with Lyme disease. However, Dr. Charles Ray Jones, a well-known pediatric Lyme specialist who has treated more than 15,000 children and adolescents, noted the EM rash was present in less than 10% of his young patient population. This massive disparity aside, the crucial piece of information for parents to know is that the absence of a rash doesn’t mean a child hasn’t contracted Lyme disease.

4. Traditional Testing Methods are Unreliable.

Tests like the ELISA and the Standard Western Blot have low sensitivity and can miss a large percentage of children who have been infected with Lyme disease. In other words, a child could have a negative test and still have Lyme disease.

However, physicians with additional training in the diagnosis and treatment of tick-borne diseases, like a Lyme-literate medical doctor (LLMD), can order additional tests to provide clues as to what’s going on or diagnose Lyme disease based on a child’s clinical presentation, symptoms, the potential for exposure to ticks, and medical history.

5. Symptoms Are Far-Reaching and Unpredictable.

To date, there is no baseline set of symptoms to ascribe to children who have been affected with Lyme, but as with adults, the disease can affect any organ, joint, or tissue in their body. It’s not unusual to see kids’ symptoms range from joint pain and fatigue to neuropsychiatric manifestations like mood swings, aggression, obsessive-compulsive disorder (OCD), and more.

6. Kids are More Susceptible to Neurological Lyme.

European medical literature, such as one 2015 research article in Behavioural Neurology, suggests that children may be more likely to experience central nervous system involvement (or neurological Lyme disease) than adults. Experts don’t yet know why, but theories include that it may have to do with the species of Borrelia that a child is infected with and the location where the tick bite occurred — a bite located near the nervous system, like the head and neck, could account for the increased susceptibility.

7. The Social Impact is Significant.

Lyme disease has enormous social consequences for children. For instance, 79% of children will experience a loss in their number of friends. Kids with Lyme also have an increased risk of depression, and 41% will have suicidal thoughts, states CLDN.

8. Lyme Can Precipitate Childhood Neuropsychiatric Disorders.

Lyme disease is one of several infections that can act as a trigger for a constellation of neurological symptoms known as PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Children with PANS/PANDAS can exhibit tics, obsessive-compulsive disorder, attention deficit disorder (ADD), depression, anorexia, and more.

9. Contracting Lyme During Pregnancy Can Be Risky to the Fetus.

If a mother acquires Lyme disease turning pregnancy, placental infection can occur, and potentially, miscarriages, stillbirths, or other health conditions.

10. Congenital Transmission May Be Possible.

For decades, there has been a hotly contested debate over whether congenital transmission of Lyme from mother to unborn child can occur. The mainstream medical community has maintained the position that there’s not sufficient evidence to prove Lyme disease can be transmitted in utero. But some Lyme specialists, advocates, parents, and patients have a different take.

For starters, a 2018 medical literature review in PLoS One suggests that it’s “biologically plausible,” but maintains that further evidence is needed to understand how Borrelia burgdorferi infections affect a fetus or contribute to adverse birth outcomes. Also in 2018, LymeHope’s Susan Faber, RN, BScN, posted a review that chronicles case studies from more than three decades (1985 to 2018) in which international physicians, researchers, scientists, and others outline adverse fetal and neonatal outcomes associated with Borrelia burgdorferi and congenital transmission of Lyme disease.

The conflicting viewpoints are part of a larger controversy about the severity of Lyme disease, the validity of a chronic Lyme disease diagnosis, and the persistent nature of tick-borne disease, which leaves parents understandably confused and frustrated. Fortunately there are physicians like Dr. Bose Ravenel, a pediatrician with 50 years of clinical and academic practice and co-author of the book, The Diseasing of America’s Children: Exposing the ADHD Fiasco and Empowering Parents to Take Back Control, who focus on their passion for helping children thrive.

“I believe Lyme can be transmitted to mother and child in utero,” Dr. Ravenel says. “It doesn’t make sense to me that it wouldn’t be. We look at other pathogens that mothers get, and we know that they can be transmitted — I don’t believe every child gets it that way, but some do.”

For parents, it’s essential to be aware of the ongoing debate so that you can make informed decisions about your child’s symptoms and healthcare.

Watch for These Symptoms

As mentioned above, chronic Lyme disease can have a significant emotional, physical, and social impact on children. “In my experience, kids can present with regressive behavior, trouble interacting with peers, and issues with school work,” says Dr. Elena Frid, a pediatric and adult neurologist specializing in infections induced autoimmune disorders; Dr. Frid has treated hundreds of children with Lyme disease. “About 50% of children I see are not able to attend school full time.”

Symptoms of the early stage of acute Lyme can occur roughly three to 30 days after the initial infection with a new microbe. The initial symptoms may be mild — a child might exhibit flu-like symptoms, such as fatigue, headache, fever, body aches, and chills. A rash may or may not show up, but if it does, that’s the telltale sign that a child has been infected with Lyme disease. Because the flu-causing viruses are most active during the winter, observing flu symptoms in your child in summer months should serve as a warning that something else may be going on, especially if the child is spending time outdoors.

On the other hand, the list of symptoms a child with chronic or persistent Lyme may experience is expansive, and the disease can mimic many other conditions. The most common ones, as noted by CLDN, include:

• Fatigue, exhaustion, or poor stamina
• Joint pain that travels to different areas on the body without a known injury
• Muscle pain
• Muscle weakness
• Headaches, including migraines
• Fevers
• Night sweats
• Changes in sleep habits, either too much or too little
• Abdominal pain
• Changes in urinary habits, like increased urinary frequency or inability to hold urine
• Personality changes like irritability, impulsivity, mood swings, depression, anxiety, anger, or rage
• Obsessive-compulsive disorder
• Forgetfulness or slow to answer questions
• Sensitivity to light, sound, and taste

“In general, my radar goes up for chronic Lyme disease when I see a child on an initial visit with a comprehensive history, a multitude of diagnoses, and they aren’t getting better with multiple pharmaceuticals,” says Dr. Ravenel. “The medications can help them feel better and survive, but they aren’t really solving underlying problems.” Symptoms that he’s accustomed to seeing in the population of children he treats include fatigue, bipolar behavior, rheumatoid arthritis (RA), autoimmune diseases, anxiety, depression, OCD, tics, unexplained joint pains, and idiopathic arthritis (arthritis with an unknown cause).

For parents, it’s important to note that many of these symptoms may initially be subtle in children, especially young children who are unable to convey how they’re feeling. But if a child begins to rack up several diagnoses and isn’t showing improvement, it may be time to dig a little deeper into what may be going on.

How to Navigate Testing and Diagnosis

Lyme disease testing and diagnosis are two additional points of contention in the medical community. First, the two-tiered testing method known as the ELISA and the Standard Western Blot — blood tests used to detect antibodies for Borrelia — have been shown to lack sensitivity and reliability, with false negatives appearing in approximately half of those who take it.

These tests are the most effective 4 to 6 weeks after contracting an acute infection. But many parents and children may not be aware that a tick bite even happened. And, the initial symptoms could be relatively minor and easy to overlook — until they escalate.

So what do you do if your child shows unusual symptoms but tests negative for Lyme disease? Consider seeing a doctor who has more experience in tick-borne infections.

“I don’t depend on test results to diagnose someone,” says Dr. Ravenel. “If parents have been to mainstream doctors, about 50% of Lyme disease cases have been missed by mainstream tests. A negative test doesn’t rule it out.” Despite negative test results, if a child exhibits several symptoms of Lyme disease, they can be clinically diagnosed and treated, states Dr. Ravenel.

For those who feel more comfortable with test results in hand, IGeneX and Galaxy Diagnostics are Dr. Frid’s go-to labs when it comes to testing for Lyme disease and additional coinfections like Bartonella, Babesia, Mycoplasma, and others. Just know that as with other Lyme tests, these are also not foolproof and can return false negative results.

Just like any other disease, Lyme disease should be taken seriously.

“It can become chronic, and you need a good physician who is comfortable and has experience treating Lyme and other infections,” explains Dr. Frid. “A lot of acute infections can be treated fast and effectively with the right physician. Look for slight behavioral, learning, emotional, and social changes. If spotted, find out why, and test for coinfections right away.”

Consider the Range of Possible Lyme Treatments

Treatment for Lyme disease can be problematic for some parents, especially if one or both parents have the illness, too. Finding a knowledgeable doctor, the financial burden of treatment, and encouraging a child to remain compliant are obstacles that can make long-term plans challenging. But the key to helping a child improve is to find a healthcare provider you can trust and who offers a range of treatment options.

“The treatment approach is individualized to each patient,” says Dr. Frid. “Since many patients are treated for months or even years, the treatment plan depends not only on a patient’s age, but more so on clinical presentation and the type of infections and disease processes being addressed.” Ultimately, no treatment will be the same across the board.

In the acute stages of Lyme disease or coinfections, antibiotics may be able to remedy the situation quickly. The CDC recommends one of the following antibiotics according to weight to treat children:

• Amoxicillin: 14-21 days with a maximum dose of 500 mg, three times per day
• Doxycycline: 10-21 days with a maximum dose of 100 mg, twice per day
• Cefuroxime: 14-21 days with a maximum dose of 500 mg, twice per day

But if symptoms go undiagnosed for a significant period of time, or if infections or symptoms linger after standard antibiotic therapy, children may require a longer course of treatment, which could include additional medications, supplements, homeopathic remedies, herbal therapies, and immune support.

When it comes to treatment choices for children, the options with the lowest potential for adverse reactions should be top of mind for most healthcare providers, says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. In many cases, herbal therapies fit the bill.

Guidelines for Herbal Therapy

Herbs have a low chance of harm or toxicity, and they have a supportive, restorative effect on the body. Plus, they can be used alone or in conjunction with other treatment protocols, and the dose can be individualized for a child based on age and weight.

A well-rounded treatment plan will include herbs (and lifestyle factors — more on that below) that not only target troublemaking microbes but also strengthen your child’s immune system. “Chronic Lyme disease occurs when immune system functions have become chronically disrupted and can no longer manage to keep unhealthy microbes in check,” says Dr. Rawls. He points to modern-day system disruptors — environmental toxins, processed-food diets that are heavy on carbs and light on nutrients, childhood stress, and excessive antibiotic use — as potential reasons why we might be seeing an increase in persistent Lyme symptoms in kids.

“With herbs, start slow, and gradually work up to a higher dose with consideration for your child’s weight,” says Dr. Rawls. “For example, if the normal dose for a 150-pound adult is three capsules twice a day, then start with one capsule one time a day and see how your child feels.”

If your child handles that dose well, you might try adding in a second dose three to five days later. If your child has difficulty tolerating the herb or experiences a Herxheimer reaction — which can include an intensification of symptoms like fatigue, muscle pain, flu-like symptoms, anxiety, depression, behavioral issues, and more — you might try lowering the dose for a few days to make them more comfortable. Then, reintroduce the higher dose when symptoms have abated.

“You’ll know you’re on the right track when your child demonstrates improvements over several weeks or months,” explains Dr. Rawls. “The symptoms will reduce, and your child will have more energy and resume interest in activities they might have had to forgo due to Lyme disease.”

Here are some of the herbs Dr. Rawls recommends, bearing in mind that the decision to take any natural regimen should be in partnership with your healthcare provider:

1. To Help Decrease Your Child’s Microbial Load:

• Cat’s claw: This Amazon native is considered an immunomodulator, meaning it helps balance the immune system and calm inflammation.
• Japanese knotweed: An excellent antimicrobial, Japanese knotweed offers coverage against Borrelia as well as common coinfections like Bartonella, Mycoplasma, Candida, and viruses.
• Andrographis: A plant native to India, this herb has antiviral, antibacterial, and antiparasitic properties. It enhances the immune system and offers cardioprotective properties, too.
• Garlic extract: Garlic has a longstanding use as a medicinal herb due to its antibacterial, antiviral, antifungal, and antiparasitic properties.

2. To Foster a Balanced Gut Microbiome Balance and Promote Gastrointestinal Health:

• Berberine: The primary function of this herb is to restore the balance of healthy microbes in the gut microbiome.
• Sarsaparilla: This South American native is known for its ability to bind to endotoxins (debris created by bacterial die off) and assist the body with their removal. It also has antibacterial and antifungal properties and can be found in many natural protocols for Lyme disease.

3. To Support Immune Function and Adrenal Health:

• Chinese skullcap: This herb works synergistically with other herbs, meaning it increases the benefits of other supplements. Also, it has antibacterial and antifungal properties, which may work well against bacterial species like Bartonella and Mycoplasma.
• Reishi: An antiviral and immunomodulating mushroom, reishi lessens inflammation and normalizes the immune response.
• Cordyceps: A Tibetan native, this fungal species of plant helps combat stress, fight fatigue, support the immune system, and protect mitochondria, the energy-making powerhouses of each cell.
• Rehmannia: An herb used in Traditional Chinese Medicine (TCM), rehmannia modulates the functions of the immune system and reduces allergic reactions.

Some Additional Guidance for Coping

Beyond herbal therapy, other lifestyle changes can play a significant role in boosting immune function and aiding recovery. For instance, an anti-inflammatory diet that is free from gluten, dairy, sugar, or allergens can help some children improve as well. In general, avoid processed foods as much as possible, and try your best to add in fresh produce, healthy protein sources like chicken and eggs, and beneficial fats like olive and avocado oils to your child’s diet.

Also, since the emotional and social effects of Lyme disease on children can be significant, you might want to consider working with a psychiatrist or therapist to reduce stress and help your child process the challenges of dealing with a chronic illness. If your child is showing difficulty with physical or cognitive functioning, a physical or occupational therapist with an understanding of Lyme disease and other tick-borne infections can be an integral part of your medical team, too.

If that sounds like a lot, honestly, it can be — including in the financial department. Even the best-laid treatment plans can place a substantial financial strain on families. Fortunately, some organizations exist that might be able to help you with treatment costs:

• LivLyme Foundation: Founded by Olivia Goodreau at the age of 12, the organization supports children ages 0-21 and their families through an annual grant, which can be used to help cover the cost of doctor’s visits and medications.
• Lymelight Foundation: This organization was created in 2011 and provides grants to eligible individuals up to 25 years of age, with a lifetime maximum of $10,000 per individual or $30,000 per family.
• LymeAid 4 Kids: Created in 2004, LymeAid 4 Kids provides grants up to $1,000 to children under age 21, which can be used toward the cost of the diagnosis or treatment of Lyme disease.

While financial stuff can be stressful to Mom and Dad, there’s no doubt that navigating a Lyme disease diagnosis can be equally difficult and emotionally draining for your child, so helping them maintain a positive attitude is at the top of your to-do list, says Leland.

“My daughter went to a therapist for quite a while, and it was helpful,” says Leland. “Also, I think it really helps if there’s a scenario that the child is interested in. For my daughter, that was shooting and editing videos; for a young child, it could be Legos. But it’s something that takes them out of themselves and away from the pain. This is the only childhood that your child is going to get, and you want them to have good memories, too.”

She suggests these other ways to effectively cope and assist your child through recovery:

• Find a Lyme-literate doctor.
• Educate yourself about the physical and political aspects of the disease.
• Find a supportive setting for yourself — either online or in-person — where you can ask questions.
• Get involved in the Lyme community if you’re able. Activism can help you feel like you’re contributing to a greater cause.
• Communicate with your child’s school about what’s going on and how they can help support your child and their ongoing education.
• Check out MyLymeData, a free resource to help you compare treatment choices and outcomes from a database of over 12,000 patients. Plus, you can add your child’s information to this patient-driven study and track progress over time.

There will be many times when you’re wrought with setbacks when trying to help your child get well, but be persistent in the pursuit of the care your child needs. Dr. Frid’s advice?

”Find physicians who are sympathetic to your situation and are willing to try treatments or be a support system for other physicians who are far away.” Most importantly, she adds: “If whatever you are doing is not working, try something else. ‘Don’t give up’ goes without saying.”

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.