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  • Writer's pictureRosalie Greenberg, MD

Could it be that up to 40% of youth with chronic Lyme disease have neuropsychological issues?

Updated: Aug 4, 2021

The association of Lyme disease (LD) and mental illness has been an area of hot debate among medical professionals for a number of years. A new study published in the American Journal of Psychiatry by Fallon et al. that reviewed a database of nearly 7 million people in Denmark helps shed some light on this issue. A record review of over 12,000 individuals diagnosed with LD in a hospital related program, were compared to a control group without this diagnosis. The group of individuals who had LD had a 28% higher rate of mental disorders and double the risk of attempted suicide. There was also a 42% higher rate of mood disorders and a 75% higher number of deaths by suicide compared to the non-Lyme controls. Having more than one episode of LD appeared to increase further the risk for mental disorders, affective disorders and suicide attempts, but not suicidal deaths.

In light of this confirmation of a positive association of LD and mental illness in adults, one must question if risk is also heightened in youth who develop LD, especially those who suffer with a severe or chronic form of the illness. What can we learn about kids from this study?

Of the 831 individuals who experienced mental disorders, 40% were age 19 and under. Interestingly, when looking at this group, those diagnosed with Lyme borreliosis before age 10 had the highest risk for later suicide attempts, while the highest rate of mood disorders were in those diagnosed in the age range 10-19 years old. The authors pointed out that there is a difference in the type of Lyme bacteria in Europe compared to the United States with the one in the U.S. associated with a stronger inflammatory response. In general, mounting evidence supports the role of inflammation in mood disorders. Could kids in the U.S. with LD be at even greater risk for psychiatric disturbances than their European counterparts? Presently, the answer is unknown, but more study is definitely required.

When looking at the effects of LD or any infection in kids, it’s important to remember that they are not “little adults” biologically, and a variety of differences need to be taken into account. In adults with LD, evidence indicates that anywhere from 15%-40% experience neuroborreliosis or neurologic Lyme symptoms. Studies show that youth are more likely to experience central nervous system (CNS) symptoms, meaning those limited to the brain and spinal cord, rather than peripheral nervous system manifestations (disease process affecting nerves located outside of the brain and spinal cord.)  Peripheral symptoms can include feelings of numbness, pain, tingling, muscle weakness, etc. CNS symptoms which can occur secondary to inflammation in the brain and spinal cord, may result in encephalitis (e.g. problems with short term memory, word finding issues, mood changes etc.) meningitis, as well as radiculoneuritis (inflammation of one or more roots of the spinal nerves.) Symptomatic manifestations of CNS involvement can include severe headache, stiff neck, fever, light sensitivity, double vision, leg pain etc.

In kids, only 1%-3% experience peripheral nervous system symptoms, with the sudden onset of Bell’s Palsy (BP) being the most frequent. BP refers to a condition resulting from damage to the 7th cranial or facial nerve.  Signs and symptoms of BP come on suddenly, occurring within hours to days and may include:

  • Rapid onset of mild weakness to total paralysis on one side of the face

  • Onset of a facial droop which creates difficulty making facial expressions, such as closing an eye or smiling

  • Headache

  • Pain around the jaw or in or behind the ear on the affected side

  • Increased sensitivity to sound on the affected side of the face

  • A loss of taste

  • Drooling

  • Changes in the amount of tears and saliva produced

In 6%-37% of cases of BP that are associated with LD, the BP can occur bilaterally - i.e. on both sides of the person’s face. Most doctors are aware that the sudden onset of BP in the spring, summer or autumn, when ticks are questing (looking for a blood meal) often points to the diagnosis of LD. Put another way, BP is one symptom that will often alert the pediatrician to the presence of LD. Since kids are shorter than adults, with their heads and necks physically closer to the ground where ticks are located, they are more likely to get bitten around the head and neck. This occurrence makes them more vulnerable to CNS infections. Kids are also more likely to roll on the grass or in a pile of leaves making their heads and necks more likely targets.

Clearly the development of neuropsychiatric problems due to the spread of an infection to the brain can cause major disruptions in anyone at any stage of life, but especially to a developing child. Studies on chronic neuroborreliosis in kids are few and have mainly focused on cognitive issues. Tager and colleagues, in a controlled study of 20 youth between 8 and 16 years old with chronic Lyme and cognitive complaints, found these kids exhibited problems with working memory and mental tracking, as well as deficits in visual and auditory attention compared to a healthy control group. Rissenberg and Chambers presented a paper at the annual meeting of the American Psychiatric Association in 1996, in which they studied and followed up on eight kids (mean age 9.1 years old) with chronic LD. When checked at a mean of 17 months after different lengths of antibiotic treatment, they found that six of the kids dropped an average of 1 year 3 months on the WISC III intelligence Quotient (IQ) test, plus their gains on tests of math calculations as well as fund of general and word knowledge were less than expected based on previous level of functioning. Therefore, learning and academic performance were affected in 75% (6 of 8) individuals.

Leo J Shea III, .and Judith G. Leventhal, both neuropsychologists who specialize in diagnosing cognitive issues in youth with chronic Lyme and other tick-borne disorders, have noted problems in the following areas:

  • attention and concentration

  • speed and efficacy of processing information

  • learning and memory

  • auditory processing and language expression

  • planning and organization

  • multitasking

Reviewing data from studies conducted, but not mainly focused on, assessing the frequency of mental disorders in those with chronic LD, provides some evidence to support the possibility that a significant number of youth with chronic LD have neuropsychiatric issues.

A 1993 study by Anita Belman and colleagues looked at 94 children who were seen at a neurology clinic at Stony Brook Medical Center for evaluation of the presence of neurologic signs of LD. The children ranged in ages from 3 to 19 years old. The authors found that the most common neurologic symptom was headaches (present in 71% of the kids.) This was followed by facial palsy in 14%, sleep disturbance in 7%, papilledema (swelling of the optic nerve due to intracranial pressure) 7%, diplopia (double vision) in 2%, paresthesia (feeling of pins and needles) in 2%, carpal tunnel syndrome in 1%, and Guillain-Barre like syndrome in 1%. Although in the majority of patients the onset of the neurologic symptoms occurred within 12 months of the infection, it ranged between 1.5 weeks – 5.1 years after initial systemic signs of LD. Therefore, neurologic symptoms could occur years after the initial tick-bite, making it harder to make the connection between the bite and neurologic symptom(s.)

Belman’s study found 38% of the youth (36/94) exhibited evidence of mood or behavioral difficulties. These included irritability, malaise, emotional lability, attentional problems, and decreased interest in play. This last symptom is often viewed as a sign of the child exhibiting what psychiatrists call “anhedonia.” This means the individual has a decreased ability to experience pleasure or fun. Children who are depressed often complain of boredom. Even though there might be many toys or activities available, they appear to have no interest. Given these results, the frequency of neuropsychiatric symptoms in this study group was only surpassed by the presence of headaches.

What happens in cases of congenital Lyme? Only fairly limited information is available in the medical literature. In 2005, Jones et al. reviewed 102 cases of children born to Lyme positive mothers. The authors found that the most common neurologic presentations were headaches in 50%, irritability in 54% and poor memory in 39%. Sensory hypersensitivity included photophobia (increased sensitivity to light) in 43%, hyperacusis (increased sensitivity to sound) in 36% and increased sensitivity in the remaining three sensory areas (touch, taste or smell) in 23%.

Other observed neurologic symptoms in the children included:

  • Vertigo 30%

  • Cognitive issues 27%

  • Speech delay 21%

  • Reading-writing problems 19%

  • Delay in development 18%

  • Problems of vocal articulation 17%

  • Tic disorders 14%

  • Auditory/visual processing problems 13%

  • Word selection problems 12%

  • Seizure disorder 11%

  • Involuntary athetoid movements 9%

  • Dyslexia 8%

While neuropsychiatric symptoms observed in the 102 children included:

  • Hyperactivity, lack of concentration and those that met the full criteria for ADD 56%

  • Irritability or mood swings 54%

  • Anger or rage 23%

  • Anxiety 21%

  • Aggression or violence 13%

  • Depression 13%

  • Emotional 13%

  • Autism 9%

  • Suicidal thoughts 7%

It was noted by Fallon and colleagues at the 1999 12th International Conference on Lyme Disease and other Spirochetal and Tick-Borne Diseases, that children with chronic LD have higher rates of anxiety, mood and behavioral disorders than children without LD. At the same conference, Dr. Patricia Coyle spoke about a study being conducted at Stony Brook University looking at youth with chronic neurologic LD and commented that the most common symptoms in the children were headaches, sleep problems, fatigue, and mood disturbances.

A study published in 2001 by Tager et al. mentioned earlier in this post mainly focused on the assessment of cognitive functioning in 20 kids with chronic LD, compared to a control group of healthy children. Both the child subjects and their parents filled out forms related to mood issues. When asked about depression, 41% (7/17) of the parents noted the presence of suicidal thoughts in their children and acknowledged that 11% (2/18) of them had made a suicidal gesture. The children themselves confirmed on rating scales that 40% (8/20) had suicidal thoughts.

Interestingly, the 40% figure appears to come up as a side observation in both Belman et als. study of kids with neurologic LD and in Tager’s group of youth with chronic LD who were studied for possible neurocognitive issues related to the infection.

In a previous blog post I discussed the results of testing for infections in 27 bipolar youth from my child psychiatry practice located in New Jersey, a Lyme endemic state. I found that 74% of my bipolar patients showed evidence of tick-borne illnesses on serologic testing and subsequent confirmation of diagnosis by clinician assessment.

Results from the studies cited raise a few important hypotheses that require greater exploration:

  1. Neuropsychological symptoms in the emotional and behavioral realms caused by tick-borne illnesses are often misdiagnosed.

  2. The neuropsychiatric symptoms may actually be the presenting and much more common manifestation of tick-borne illnesses in children than recognized.

  3. If these ideas are found to be correct, then the results lend support to the concept that the mental health effects of tick-borne infections in youth are clearly underrecognized and underdiagnosed.

Some studies have found no support for the hypothesis that LD is associated with changes in mood, behavioral and/or cognitive functioning. In part, this is due to a variety of limitations. One problem is using a short period for observation (e.g. six months), which may not be enough time to see the development of these neuropsychiatric symptoms in chronic cases. Another problematic approach is when a study incorrectly assumes equality of two symptomatic groups that are studied which again can also result in misleading conclusions. For example, looking at a group of youngsters with LD arthritis may result in very different cognitive findings when compared to a group with cardiac problems from LD.

Unrecognized limitations in some studies may be due to the infecting organism (in this case bacterial), or host (the individual) factors or both. For example, there are different strains of Borrelia bacteria that cause LD. They may differ from one another in degree of virulence or how severe and aggressive the specific bacteria can be in causing disease. As noted earlier in this post, Borrelia burgdorferi, the primary bacteria responsible for causing LD in the United States, creates a stronger inflammatory reaction than Borrelia afzelii and/or Borrelia garinii which are responsible for most cases of LD in Europe.

Another factor that can interfere with generalizing conclusions from one group to another (e.g. those with neurologic Lyme to those with mainly cardiac symptoms) is called organotropism. This basically means that different species of the infecting organism may show an affinity or preference for a particular organ or organs.

How does this approach apply to studies of youth with LD? It means that a study focusing on a group of kids whose main manifestation of chronic illness is Lyme arthritis may show little or no mood or behavioral problems. This doesn’t mean that the Borrelia infection does not cause these symptoms in any child with LD. It can happen. It may be that mood and behavioral manifestations do not occur in those who have mainly arthritic symptoms or perhaps are limited to those who primarily struggle with chronic CNS involvement.

Different clinical presentations of illness and subsequent attempts at treatment may also contribute to the variation of symptoms in different clinical groups. For example, if a child presents with an arthritic joint, it will be treated relatively quickly because it is what I call a “noisy symptom.” The pain and physical limitations created by the infectious/inflammatory process is hard for a parent or medical professional to ignore. It’s clear that something is very wrong and relief is needed now. On the other hand, a change in personality and moodiness in a young person due to an unrealized infection can be harder to recognize as every child’s physical and mental state is being affected daily by multiple factors i.e. school, peers, hormonal changes etc. The recognition that gradual cognitive or emotional changes that occur during this developmental period are related to a hidden infection can be difficult to realize. These more “quiet“ or subtle symptoms may take much longer to be recognized and therefore delay treatment for the underlying infection. Earlier intervention because of and for the “noisy” symptoms, rather than cognitive problems, may also play a role in what other symptoms develop over time. Put another way, it’s important to look at the time of treatment intervention during the course of the illness in each individual The absence of psychological effects in a particular group that presented with a more obvious TBI symptoms may be because the individual received treatment early in the course of the illness.

There are also host (the affected individual) factors that can influence the type of symptoms one gets. Different types of immunodeficiencies, vitamin or mineral deficiencies, having additional medical illnesses, dietary intake and exercise and stress levels are among the many influences that can affect how an individual reacts to an infection. Elucidation of the importance of these and other host-related factors is needed when it comes to kids and tick-borne illness.

The bottom line being that much more research is required before we can fully understand the neuropsychiatric ramifications of getting LD during a youngster’s developmental years. Nonetheless, it is imperative to recognize that neurocognitive and neuropsychological problems can and do occur in some infected youngsters, sometimes with dire effects.


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