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The Research

Here is my go-to list of research, articles, and books about the impacts of Tick-borne disease on adults and congenitally infected children. But, first, let’s start with an overview.

What You Should Know About Tick-borne Disease

The Basics
  • Most people refer to the disease as Lyme Disease. Lyme disease is caused by a specific bacteria called Borrelia. Tick-borne disease is more accurate due to the number of other infections that are often transmitted during a tick bite.
  • Tick-borne disease is in every state. It’s not just endemic to the north-east US.
  • People may experience mild to moderate forms of the disease that are usually not recognized, and often consist of neuropsychiatric or autoimmune issues. Due to the nature of these slow-growing infections, symptoms tend to slowly increase over years and decades. This is considered a stealth form of a chronic infection.
  • Only a small subset of people develop severe pain or chronic fatigue.
  • Doctors, including infectious disease doctors, do not understand the milder forms of the disease, are not trained on the latest findings, nor do they screen for it regularly.
  • Because doctors receive little medical training on the current findings of Tick-borne disease and the CDC has not kept current on it, a Lyme specialist is required to diagnose and treat.
  • You can be infected in three ways:
    • A tick or other vector bite. Note: most people have no knowledge they were bitten
    • During sexual activity with a partner
    • Or, to a fetus during pregnancy
  • A small number of people develop a rash, but most do not.
  • The infections can be difficult to diagnose because standard testing isn’t sensitive enough to detect most infections. Lyme specialists use more accurate testing from specialty labs, but frequently must rely on a clinical diagnosis based on symptoms.
  • There are fifteen possible infections that can be passed by a tick or other vector bite including Bartonella, Babesia, Borrelia, Rocky Mountain Spotted Fever, Ehrlichia, and Anaplasma. In a study conducted by LymeDisease.org, people were infected with three or more infections in 50% of the cases, and four or more infections in 33% of the cases. This is referred to as Lyme and coinfections, or more simply, Tick-borne disease.
  • Coinfections such as Bartonella can cause the majority of symptoms in a person. Borrelia (Lyme) does not cause many symptoms. The severity of symptoms can increase significantly when multiple infections are present.
  • Bartonella is known to cause the majority of neuropsychiatric symptoms and many autoimmune diseases.
  • You’ll see in the following section, there is a long list of possible symptoms with this disease, due to the the specific infections you have, genetics, and where the infections take hold in your body. Research is growing every month on the connection of tick-borne disease and the symptoms below.
  • Doctors must screen for all possible infections, not just Borrelia (Lyme).
  • Other vectors that feed on blood can transmit these infections including ticks, fleas, mites, and possibly mosquitos. Sometimes, you’ll see this referred to as Vector-borne disease. Bartonella can also be transmitted through an animal scratch such as a cat, known as Cat Scratch Fever.
Mild to moderate symptoms in adults

Symptoms often include neuropsychiatric and one or more autoimmune diseases that develop over time. If you have a few of these symptoms, you should consult with a Lyme Specialist.

  • Neuropsychiatric symptoms: ADHD, anxiety, social anxiety, depression, OCD, explosive temper/yelling, irritability, oppositional, mood swings/bipolar, panic attacks, fears, emotional lability, memory issues/brain fog, and in severe cases, psychosis, hallucinations, suicidal ideation, violence, and Alzheimer’s
  • Autoimmune symptoms: thyroid, arthritis, fatigue, neuropathy/MS, muscle pain/fibromyalgia, IBD, ALS, and Lupus
  • Other: gluten/dairy sensitivity, sleep issues, migraines, day or night sweats, digestive issues, urinary issues, tics, POTS, seizures, and possibly some cancers 

There are many other symptoms associated with the disease depending on the specific infections. 

Congenital symptoms in children

If there are tick-borne infections transmitted during pregnancy, symptoms often, but not always present by the age of four. In girls, in particular, neuropsychiatric symptoms may not present until late teens or early twenties. Symptoms may also have an acute presentation after an infection such as strep or COVID (Long COVID). 

When there is a congenital transmission of Tick-borne disease in children, one or both parents often experience at least a few of the common adult symptoms listed above. Additionally, if you have more than one child that exhibits symptoms, the likelihood for a congenital transmission of Tick-borne disease increases significantly.

Bartonella causes most of the neuropsychiatric symptoms found in children.

  • Neuropsychiatric symptoms: ADHD, ASD, anxiety, social anxiety, separation anxiety, depression, OCD, explosive temper/yelling, irritability, oppositional (ODD), mood swings/bipolar, panic attacks, fears, school refusal, memory issues/brain fog, antisocial, emotional lability, and in severe cases, self-harm, psychosis, hallucinations, suicidal ideation, violence, and aggression
  • Other: learning disabilities, low reading comprehension, baby talk, age regression, bedwetting/urinary issues, gluten/dairy sensitivity, light/sound sensitivity, sleep issues, migraines, eating disorders, POTS, picky eating, dilated eyes, dysgraphia, dyslexia, visual issues, day or night sweats, digestive issues, vocal and movement tics, hypotonia, remitting fevers, seizures, and possibly some cancers 

PANS

Sometimes children are first diagnosed with a condition called PANS, Pediatric Acute Neuropsychiatric Syndrome. PANS is indicated by high antibody levels or titers for strep, Epstein-Barr Virus (EBV), mycoplasma pneumonia, cytomegalovirus, herpes virus (HHV-6), influenza, coxsackie virus (Hand, Foot, and Mouth Disease) or Tick-borne infections. Sometimes, PANS is diagnosed when neuropsychiatric and behavioral symptoms suddenly appear after a strep or other infection. Other times, neuropsychiatric and behavioral symptoms can begin early in life, and usually there are no specific symptoms of the infection such as strep or mycoplasma pneumonia, despite high antibodies. In this case, the diagnosis is given because of the similarity in symptoms.

Whether the case is acute or chronic, high antibody levels can simply be a sign of immune dysregulation caused by tick-borne infections. All children with these symptoms should be screened by a Lyme specialist for Tick-borne disease, especially if parents or siblings experience symptoms. Be aware that symptoms can present themselves very differently with each family member. You may have one child with ADHD, another with ASD, one with anxiety and OCD, and another who is oppositional and has crying fits or rages.

Also note that children with Tick-borne disease can show positive for autoimmune encephalitis, have high cytokines, interleukins, and positive Cunningham panels. Although these are favored tests for the simple PANS infections, positive results can also indicate multiple tick-borne infections.

How do I find a Lyme specialist?

You can find a specially trained Lyme specialist at

Unfortunately, there are many more patients looking for care than there are expert doctors who can provide quality care. So, expect only a few doctors, at most, in your area, and long wait times for an evaluation.

Many of the Lyme specialists providing care either had Tick-borne disease themselves or someone in their family had it. Due to the lack of medical focus on this disease, they had to research the disease, treat themselves, then chose to leave their practices in allergy, OB-GYN, neurology, psychiatry, internist, pediatrics, and so on, to provide care to others suffering with the disease.

How do you treat Tick-borne Disease?

To be honest, this is a hard question to answer. Treating chronic Tick-borne disease is as difficult as treating cancer. These infections are the smartest infections that the medical community has seen at evading and suppressing the immune system. The infections love tissue and can penetrate any tissue in your body. They also build biofilms to protect themselves if they are under attack, by creating a slimy substance around them, which is impenetrable to antibiotics.

Because it’s been so difficult to treat, doctors are using both western and eastern medicine. Some doctors use antibiotics, while others prefer herbals. Sometimes, you can see a remission of symptoms, but if you don’t fully clear the infections hiding in biofilms, the infections will continue to grow, causing a relapse.

Whatever treatment method you use, treatment can take years. It’s not like having a strep throat, taking amoxicillin for a week, and you’re back to normal.

The best advice I can give is to

  1. Find a good Lyme specialist using the links above. These chronic infections cannot be treated with a few weeks of doxycycline, which is the CDC recommendation immediately following a tick bite.
  2. Make sure your doctor tests you for the spectrum of tick-borne infections, or at least, the most common ones.
  3. Standard Labcorp/Quest tests, as a rule, are unreliable and frequently give false negative results. You won’t know for sure until you test using a specialty lab such as TD Labs, Galaxy Diagnostics, Vibrant, or IGeneX. Health insurance does not cover specialty labs today, and the tests can be expensive, especially if you need to test multiple family members.
  4. Find a doctor who is skilled enough to give you a clinical diagnosis if you or your doctor believe the specialty test gave a false negative result. This happens more often than you think.
  5. Much of the time, there is no permanent damage caused by these infections. If the symptoms persist after the expected treatment time, it’s likely that the infection is persisting and you may need to switch the treatment approach, including breaking down the biofilms.
  6. If you don’t see any results in 6-8 weeks, consider trying a different treatment or doing additional testing.
  7. Treatment can take years, whether you choose antibiotics or herbal treatments. It’s hard, but be patient. It’ll be worth it.
  8. I recommend Dr. Daniel Kinderlehrer’s book which is an easy read and extensively covers symptoms and treatments by infection.

THE SCIENCE

Books, Bloggers, and Websites

       The Mother Chronicles for LymeDisease.org, by Debbie Kimberg

       More Great Resources

Alzheimer’s

Anorexia

Autism Spectrum Disorder

Cancer 

Ehlers Danlos Syndrome

(hypermobility)

Heart

IBD

Long-haul COVID

MS

Neuropsychiatric

Pediatric Acute Neuropsychiatric Syndrome (PANS)

Physical Symptoms

Postural Orthostatic Tachycardia Syndrome (POTS)

Tick-borne Illness

       Transmission

Treatment

Seizures

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