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If your child is one of the 476,000 children diagnosed with Lyme disease annually, you know how difficult it can be to sort through symptoms and finally arrive at a diagnosis. I know because I have been there. In this article, I’ll share what you need to know about Lyme and coinfections in kids.

Pediatric Lyme Disease Symptoms

After presenting with persistent neuropsychiatric symptoms that could not be explained away, two of my three children eventually received a chronic Lyme diagnosis, along with Bartonella, and Babesiosis.

This was before PANS was an official diagnosis – as such, no one was looking for anything other than strep as a possible culprit for their symptoms. The result was years of misdiagnosis and inadequate treatment resulting, quite literally, in my son’s stolen childhood (more on that later).

Thankfully, PANS/PANDAS diagnostic criteria have been updated to include Lyme and all its myriad coinfections. Getting a solid diagnosis, however, is still incredibly problematic.

Lyme Diagnosis Testing

As many of you know, current lab testing for Lyme is woefully inadequate. Studies show that up to 60% of acute Lyme cases are missed due to both outdated testing modalities, and the fact that Lyme shuts the immune system down, resulting in delayed appearance of antibodies in the blood. Moreover, less than 50% of patients develop the classic erythema migrans (bullseye) rash, often used as a key diagnostic criterion.

This means far too many families continue to waste years of precious time after their child’s labs come back with false negative results, chasing practitioners who either won’t listen or don’t understand that Lyme is a clinical diagnosis. Not to mention, suffering the consequences of a late diagnosis of Lyme disease.

It shouldn’t be this way!

With this in mind, I’ve put together this article to help parents navigate the often choppy waters of a potential Lyme diagnosis. There is just so much to know, and having to research and parse through information while caring for a sick child can be overwhelming. My hope is to reduce some of that overwhelm by providing a summary of research to date, along with a quick guide to the most common Lyme co-infections along with symptoms.

Understanding Lyme Disease

Lyme disease is divided into 3 stages:

  1. Stage 1 occurs within several days of the tick bite, and can include symptoms like the bullseye rash, fever, chills, muscle aches, headache, tiredness, joint stiffness, muscle aches, and swollen lymph nodes.
  2. Stage 2 occurs within weeks 3-10 weeks of the tick bite as the infection begins spreading to other parts of the body, resulting in a variety of new symptoms like neck pain, nerve pain, facial palsy, irregular heartbeat, back and hip pain, pain and swelling in the eye or eyelid, and vision loss.
  3. Stage 3 occurs months (or even years) after the initial tick bite after bacteria have spread throughout the body. Stage 3 is marked by the symptoms from stage 2 along with cycles of arthritis and joint pain (commonly the knee), shooting pain, numbness in the extremities, and problems with short-term memory.

It’s important to note that not all Lyme disease is caused by a tick bite. The bacteria that cause Lyme disease can also be transmitted by:

✔ Other insects like fleas and mosquitos
✔ Sexual transmission
✔ Transfer from mom to baby

Lyme Disease in Children

😕 Lyme disease is most common in children ages 5-14.

😕 Lyme is underdiagnosed, but even so, there are 300,000 new cases diagnosed each year. Statistics show that 205 new cases of Lyme are diagnosed each day. And 25% of these cases are in children.

😕 Unfortunately, it’s possible to have your child tested for Lyme disease and get a false negative result. The common Lyme diagnosis test can still miss 30-50% of Lyme cases.

😕 Chronic Lyme disease can affect a child in a variety of ways — physically, mentally, emotionally, and educationally.

😕 Children with Lyme are likely to have cognitive and psychiatric issues, difficulty processing information, a greater risk of depression, mood swings, behavior outbursts, and debilitating pain and fatigue.

About Lyme And Coinfections

Lyme seldom travels alone. Many (if not most) people who contract Lyme disease also carry additional infections resulting from pathogens carried by ticks.

Even if your child contracted Lyme from something other than a tick bite, they still may develop one or more of these infections.

The most common Lyme disease coinfections are:

😕 Babesia (32%)
😕 Bartonella (28%)
😕Rickettsial illnesses, which include:

  1. Ehrlichiosis (15%)
  2. Rocky Mountain spotted fever (6%)
  3. Anaplasmosis (5%)

😕Borrelia Miyamoto (relapsing fever)
😕Powassan Virus
😕Tick-Borne Relapsing Fever
😕Q Fever

Let’s take a closer look at all of these.

Common and Uncommon Lyme Coinfections

What Is Babesia?

Babesia can increase the severity of Lyme disease and affects up to 40% of Lyme patients. Babesia can also lengthen the duration of illness with Lyme disease.

One study found that 50% of patients with coinfections were symptomatic for 3 months or longer, compared to only 4% of patients who had Lyme disease alone.

Symptoms of a babesia infection include:

  • Fever, chills, sweats
  • Fatigue
  • Headaches, or pressure that feels like a tight band around the head
  • Labored breathing/air hunger
  • Hands hurting
  • Bone pain
  • Dysautonomia (nervous system disorder that disrupts autonomic body processes)
  • Depression or anxiety

What Is Bartonella?

Bartonella bacteria is an intracellular parasite that lives and reproduces primarily inside the lining of the blood vessels, resulting in the disease bartonellosis. Bartonella infection can result in psychiatric issues like OCD, ADHD, anxiety, social anxiety, depression, rage, oppositional behavior, mood swings, panic attacks, memory issues, ASD, and PANS. Bartonella also hides in the thyroid causing thyroid dysfunction and even triggering autoimmune Hashimoto’s thyroiditis.

Bartonella bacteria cause diseases including:

  • cat scratch fever (Bartonella henselae)
  • Carrion’s disease (Bartonella bacilliformis)
  • and trench fever (Bartonella quintana).

Bartonella has also been associated with diseases of the skin (bacillary angiomatosis), liver (peliosis hepatis), heart (endocarditis), eyes (neuroretinitis), blood (bacteremia), and brain (encephalitis).

Early signs of bartonella infection include:

  • Fever
  • Fatigue
  • Headache
  • Poor appetite
  • Streaky rash that resembles stretch marks from pregnancy
  • Swollen glands, especially around the head, neck and arms.
  • Subcutaneous nodules inside of the legs or inner forearm.

Bartonellosis is highly neurological, resulting in symptoms including:

  • Blurred vision
  • Numbness in extremities
  • Memory loss
  • Balance problems
  • Headaches
  • Ataxia (unsteady gait)
  • Tremors

What Is Ehrlichiosis?

Symptoms of an Ehrlichia infection include:

  • Fatigue
  • Fever
  • Headaches
  • Muscle Aches

A patient severely ill with an Ehrlichia infection may have low white blood cell count, low platelet count, anemia, elevated liver enzymes, kidney failure, and respiratory insufficiency.

What Is Anaplasmosis?

Anaplasmosis, formerly called human granulocytic ehrlichiosis (HGE), is closely related to Ehrlichiosis. Most anaplasmosis infections are mild, but up to 36% of patients require a hospital stay, and 3% develop life-threatening complications.

Anaplasmosis symptoms include:

  • Headaches
  • Fever
  • Chills
  • Malaise
  • Muscle aches

What Is Rocky Mountain Spotted Fever (RMSF)?

RMSF weakens small blood vessels throughout the body, causing the characteristic spotted rash and allowing the bacteria to spread to the heart and brain. RMSF can range from a mild illness to a fatal one, with children making up 22% of spotted fever fatalities.

Additional Rocky Mountain Spotted Fever Symptoms:

  • Rash of small, flat, pink macules on wrists, forearms, and ankles, spreading to trunk, hands, and feet.
  • High fever
  • Severe headache – more common in adults than children
  • Abdominal pain and nausea (with or without vomiting)
  • Loss of appetite
  • Muscle pain
  • Altered mental status
  • Swelling the dorsum of the hands or around the eyes

What Is Southern Tick Associated Rash Illness (STARI)?

The STARI rash is an expanding red “bull’s-eye” lesion that develops around the site of a lone star tick bite. The rash usually appears within 7 days of the bite and can reach a diameter of 3 inches (8 centimeters), or more.

Think of STARI as the “rash that looks like Lyme disease but isn’t.”

STARI Symptoms are similar to Lyme symptoms and include:

  • Fever
  • Headache
  • Joint pain
  • Muscle pain
  • Stiff neck
  • Fatigue and malaise

How to tell STARI and Lyme apart:

✔ STARI patients are more likely to remember being bitten by a tick
✔ The rash appears faster in STARI (6 days on average)
✔ STARI patients have smaller and fewer skin lesions

What is Relapsing Fever (Borrelia Miyamoto)?

Borrelia miyamotoi (BMD) is a spiral-shaped bacteria known for causing relapsing fevers.

Symptoms of Tick Relapsing Fever (BMD) include:

  • EM rash (bulls-eye)
  • Relapsing Fever (10-40% of cases)
  • Headache
  • Chills
  • Nausea
  • Myalgia (muscle aches and pain, including ligaments, tendons and fascia)
  • Arthralgia (joint stiffness)
  • Muscle and joint pain

BMD can cause serious complications including meningoencephalitis (inflammation and/or infection of your meninges and brain) in immune-compromised people.

What Is Mycoplasma?

Mycoplasma is found in most everyone with Lyme disease. It’s a very small organism some researchers believe is a cross between a virus and bacteria that invades cells and disrupts the immune system, accumulating on the endothelial lining and causing inflammation and pain.

Symptoms of Mycoplasma include:

  • Severe fatigue
  • Joint pain
  • Nausea
  • Cognitive problems
  • Neuropsychiatric problems
  • Migraine headaches
  • Inflammatory gut, lung issues, or bladder issues
  • Mycoplasma pneumoniae infection — a sudden respiratory infection

What Is Powassan Virus?

Powassan virus is more rare than many of the other Lyme coinfections, with less than 10 reported cases per year, and can be transmitted as soon as 15 minutes after tick attachment.

Symptoms of Powassan virus include:

  • Fever
  • Headache
  • Vomiting
  • Muscle weakness
  • Confusion
  • Lack of coordination
  • Memory loss
  • Long-term neurologic problems

When Powassan spreads to the nervous system (in 10% of patients), it can result in encephalitis (brain swelling), meningitis, or seizures.

What Is Q Fever?

Q Fever is caused by an intracellular bacteria called coxiella burnetii.

Symptoms of Q Fever include:

  • High fever
  • Headache
  • Sore Throat
  • Malaise
  • Nausea
  • Diarrhea
  • Chest pain
  • Nonproductive cough
  • Pneumonia
  • Hepatitis

About 1% of Q fever patients can develop neurological symptoms like meningitis, encephalitis, myelitis, and/or peripheral neuropathy.

What Is Tick-Borne Relapsing Fever?

Symptoms of Tick-Borne Relapsing Fever arise suddenly, starting with a high fever, rapid breathing, and fast heart rate. Then the symptoms cycle into a decreased body temperature and sweating. Then the cycle may repeat multiple times.

Tick-Borne Relapsing Fever Symptoms:

  • High fever
  • Rapid breathing
  • Fast heart rate
  • Headache
  • Myalgias — muscle aches and pains
  • Arthralgias — joint stiffness
  • Nausea, vomiting, loss of appetite
  • Conjunctivitis — pink eye
  • Dry cough

What Is Tularemia?

Also known as rabbit fever, tularemia is a rare, but serious infection. There are six forms of tularemia, but only Ulceroglandular tularemia is a common Lyme coinfection.

Symptoms of Tularemia include:

  • High fever/chills
  • Extreme fatigue
  • Skin ulcers
  • Swollen and painful lymph glands
  • Inflamed eyes
  • Sore throat
  • Mouth sores
  • Headache
  • Pneumonia
  • Diarrhea and vomiting

The Many Faces Of Lyme And Coinfections

Lyme disease is a complex, multi-stage illness that is often undiagnosed. If you recognize the symptoms listed above in your child, you’re not imagining things – even if you haven’t found a doctor who’s been able to help.

In my next article, I’ll wrap up our Lyme discussion with testing and treatment options you can discuss with your child’s practitioner.

If you need a partner in your child’s health who understands the complexity of a condition like Lyme disease, PANS/PANDAS, or any other neuroinflammatory disorder, I’m here for you. You can schedule a consultation with me here.

Cover photo courtesy of Jocelyn Lee Studio