Dr. Jones’s still-relevant advice on children with Lyme disease
Dr. Charles Ray Jones—who recently died at age 93—was a giant in the field of pediatric Lyme disease treatment. He not only helped thousands of children directly, he also generously shared his knowledge with others.
The following is an excerpt from the 2005 Children’s Treatment Issue of the Lyme Times. In it, Dr. Jones discusses signs and symptoms that are specific to children suffering from Lyme and other tick-borne infections. The article was co-written with Dr. Steven J. Harris. Seventeen years after publication, it still offers fresh, instructive information not readily available elsewhere. It also demonstrates how alert Dr. Jones was to even the smallest details of how tick-borne diseases can present in children.
By Dr. Charles Ray Jones and Dr. Steven J. Harris
Lyme disease is the most common vector-borne disease in this country and the most common tick-borne disease in the world. The incidence and prevalence of Lyme disease seems to be increasing, with people contracting infection on every continent on earth except perhaps Antarctica.
While an understanding about Lyme disease and its manifestations is expanding, a tremendous gap remains as to how to properly diagnose and care for Lyme patients. Children are particularly at risk for an inaccurate diagnosis and inadequate treatment because their symptoms are insidious and subtle.
Many doctors and researchers neither understand nor study the unique manifestations of pediatric Lyme disease; moreover, they fail to acknowledge the high incidence of congenital [1, 2] and breast milk [3, 4] transmitted Borrelia burgdorferi infection.
Children are more vulnerable than adults to both exposure and infection because they are physically closer to the ground and play on the ground. They sit on logs  and rummage in leaves. They cuddle with pets. Their jungle gyms are near the edge of wooded areas. They go to summer camp and scouting trips. They grow up in the grass and touch everything.
What does Lyme disease do to a child?
One aspect of Lyme in the young children is the emotional component they suffer. They are inexperienced with handling severe difficulties in their lives. Children often get trapped into believing that they will be ill or in pain all of their lives.
Many with the onset of Lyme early in their lives have never experienced freedom from pain or disease. One child came into the office after treatment was complete and began saying “I didn’t know anybody could feel like this.” “I didn’t know my body didn’t have to hurt.”
Older children have more reserves and life experiences to draw upon. They often know that this is a temporary setback and that they can get well again. The remarkable aspect of treating Lyme disease in children is that most get better [6-8] and many get well, [7, 9] without carrying the stigma of Lyme disease or its co-infections.
Signs of Lyme disease in children
The manifestations of pediatric Lyme disease depend on the age of exposure. The age of three has been thought of as a developmental point for particular signs and symptoms to be observed. Those under three years of age, who were congenitally exposed or early tick exposed to Lyme disease often present with severe hypotonia and developmental delay. [1, 9]
They elicit an impaired repository of typical childhood skills. Speech and language difficulties are pronounced as well as fine and gross motor coordination. Many have visual problems, presenting as convergence insufficiency and/or tracking problems.
This often manifests as an inability to read. It is not that the child is incapable of understanding the material but rather that their eyes are not able to maintain focus on the lines of a page. The eyes jump from one end of the page to the other, preventing them from following what is in the middle.
They have auditory processing difficulties , which can be observed when the child is not responding to verbal cues or commands. The child will repeatedly ask “What?” They question every situation in which they are asked to do a task, often repeating the question.
Behavioral problems with Lyme disease
These children have an increased tendency towards demonstrating behavioral problems and mood swings, with excessive irritability  and difficulty participating in a large group. They have an increased tendency towards developing sensory integration problems.
It may appear to teachers and psychologists to be an attention deficit disorder but in reality, the trouble arises when multiple stimuli are being received all at once. They cannot segregate incoming stimuli, making it difficult for them to become focused on an essential point. The child becomes easily confused coupled with erratic behavior.
For example, a little boy in practice had classic sensory integration problems. While in the office he could not stop running around. In order to properly examine him, it was only possible to auscultate his chest if his forehead was scratched with an index finger at the same time.
Many kids maintain constant motion in order to stay focused, some clenching their fists, slapping their legs or stomping their feet on the ground. Those with gestational, breast milk and early exposure to Lyme disease often experience tactile sensitivity, hair sensitivity or light and noise sensitivity. They have trouble handling textures.
One boy in our practice could not wear clothes for five years, explaining “My skin hurts. It feels like someone is rubbing a rasp file on my skin until it bleeds; and my hair feels like someone is taking an ice pick and stabbing me on my head.”
This child also had to wrap himself in a sheet in order to stay warm. He presented with headaches and joint pain. Interestingly otherwise, this little boy would play normally in the office except he wanted to be naked. His mother had had eight miscarriages. Miscarriages are common with mothers with Lyme disease. [1, 12, 13]
Moody, unfocused behavior?
While eliciting a history on a patient, one should inquire about several dimensions of the child’s life. Generally, determine if the child is acting unusually, demonstrating moody, unfocused behavior.
Pay particular attention to decreased energy, fatigue and a new onset decline in schoolwork. Additionally, it is important to ask about headaches, [11, 14] sleep disturbance, increased nightmares and upsetting dreams. Many children show a decreased appetite, are reluctant to play, and often experience both cold and heat intolerance. Irritability  and weepiness is common in children with Lyme disease.
Impaired short-term memory of new onset is also a very important sign to recognize.  Another feature is new onset bed wetting and/or encopresis [fecal incontinence].
Joint and general body pains are often seen in children with Lyme disease and co-infections. New onset asthma is also common. In those patients, asthma usually resolves when the Lyme disease resolves.
New onset gastroesophageal reflux, nausea with or without vomiting, abdominal pain, diarrhea or occasional constipation of new onset are all important clues to look for when assessing Lyme disease.  Frequent urination is common, though pain is rarely seen. A rash compatible with erythema migrans (EM) that expands over time is another telltale sign of Lyme disease. This is seen in only about 7% of our more than 7000 patients. Multiple secondary rashes may be observed in Lyme disease as well.
These appear and disappear rapidly. During a Jarisch-Herxheimer reaction, many children develop an erythematous blush. These are discreet and can be warm to the touch or itchy. The rash persists as long as the Lyme symptoms present.
If one already has psoriasis, tick bites causing an EM can result in a flare of psoriatic plaques over the EM, making it difficult to distinguish them. Psoriasis may also progress upon contracting Lyme disease.
If a child is expressing discomfort when they are touched, or are favoring one limb for some unknown reason, it is important to consider Lyme disease in the differential diagnosis.
History of tick bite?
The physician must determine if Borrelia burgdorferi or other tick-borne infections are causing disease. For those patients not at gestational or breast milk risk for Lyme disease, one should have a history of exposure to ticks while on vacation, playing with pets, or in their own backyard.
Exposure to Ixodes scapularis or Ixodes pacificus is particularly dangerous. Familiarity with some hallmarks of co-infections can be instructive in obtaining the whole picture of a sick child. Rapid diagnosis of co-infections will alter the course of treatment and recovery.
For example, while ascertaining if one has babesiosis, it is instructive to ask if someone else in family has a Babesia microti infection, including any of the pets in the household. Symptoms include increasing night sweats, intractable headaches, muscle pain, burning in the feet and a feeling of warmth in the soles of the feet.
Ehrlichia (Anaplasma) infections can be of sudden onset, causing abrupt fatigue or collapse, chills and high fever. Ehrlichia patients may have a more indolent presentation with fatigue and headache.
Bartonella henselae commonly causes headache as well. Often times, violaceous [purplish] cordlike stria that can be painful are missed on the history and exam in a patient that has Bartonella. A wide array of new onset gastrointestinal problems is a common and serious manifestation of bartonellosis.
However, perhaps the most noted hallmark of Bartonella infection is new onset psychiatric problems including: rage, anxiety, paranoia, hallucinations and learning disabilities. Mycoplasma fermentans, another co-infection, also causes new onset neuropsychiatric problems and cognitive impairment.
The severity of these manifestations appears to be even more pronounced than those seen with Bartonella. Gastrointestinal complaints should be considered a hint at the presence of Bartonella henselae or Mycoplasma fermentans co-infections.
Importance of physical exam
On physical exam the first observation a physician makes is whether the child appears sick. Is there the appearance of dark circles under the eyes? Is the child less animated than one would expect for his age? A lot of children will say they feel fine.
But if you re-ask the question: “do you wish you felt better?” they say “yes.” Check their balance. Is it impaired when standing on one foot with the eyes closed? Perform tandem gait tests with eyes open and closed, and then have the child walk on their toes and heels. Look for decreased strength in either one limb or the whole body. Evaluate grip strength. How well does the child perform, hopping on one foot?
Observe whether the child has a limp or is favoring a particular limb. Certainly, a swollen joint is an important finding, and it’s seen in about 5 percent of patients. This is a contradiction to the prevailing belief, but nevertheless it is important to note.
Some clinicians have stated that a child cannot have small joint involvement that is associated with Lyme disease. However, almost all of them do, and therefore examine the child for joint sensitivity. This exam is elicited by gently touching every joint in the body, and the examiner does not need to put a lot of pressure on the joints.
One can distinguish joint sensitivity in a child by the subtle movement away from pressure before they even experience actual pain. This is a reflex that is difficult to feign. When testing cranial nerves, look for a difference in sensation on either side of the face.
Sensitivity to light and noise
To check blink synkinesis, have the patient close one eye, then the other. In patients with facial neuroinvolvement, it is common to see them use other facial muscles to help them close their eyelid. Look for light sensitivity and noise sensitivity. Assess plantar reflex. Hypo and hyperreflexia are both seen on deep tendon tests. Look for symmetry.
On cardiovascular exam, the blood pressure is usually normal. Listen long enough to heart sounds while the child is sitting, standing and lying down. It is amazing how many arrhythmias are picked up if one listens long enough. On these children perform an EKG and echocardiogram. However, actual heart block in children is relatively rare. Only five children in this practice have had first-degree heart block. (All of them did fine on IV and/or oral antibiotic therapy).
On pulmonary exam, listen for wheezes and rhonchi [sounds made when the airway is obstructed]. Many will have respiratory exercise intolerance. They do not necessarily have a cough. No significant findings are usually elicited on gastrointestinal exam.
On dermatological exam, look carefully for violaceous and bluish striae. Hypoplasia of nails is common, and secondary EM rashes are occasionally seen. In very young children, it is not uncommon to see multiple cavernous hemangiomas [abnormal tissue causing a slowing of blood flow]. Some are quite large and can cause severe bleeding. Surprisingly, lymphadenopathy is not very common in children with Lyme disease. When it is observed, it usually indicates another overriding infection.
Of particular interest is the abnormal presentation of a variety of odd movement disorders with either symmetric or asymmetric presentation. These may also be accompanied by an upper or lower body tremor.
Duration of Lyme disease treatment
Duration of treatment is measured by clinical response. The duration of treatment is usually shorter, such as 5-7 days in a child under seven as opposed to a longer-term treatment (one month or longer in older children).
The criteria used for the cessation of antibiotic therapy is if a child can: 1) be Lyme symptom-free for two months; 2) not have a Lyme-induced flare-up as a result of another infection, fatigue, emotional trauma or injury; 3) can show a Western blot that does not reflect active infection and 4) is PCR negative. If a particular medicine is working and is well tolerated, continue it until the above criteria are met. 
- It does not take long, certainly less than 24-48 hours, for a small Ixodes scapularis tick or nymph to attach, feed and disseminate organisms in a young child with soft, thin, very vascular skin.
- Children with Ixodes scapularis tick attachments in the head/neck area, under the arms or under the collar bones and in the belly button seem to result in Borrelia burgdorferi spirochetes disseminating rapidly to the brain causing early central nervous system (CNS) symptoms. This may occur because spirochetes are carried by arteries going to the brain via the circle of Willis.
- In order to eradicate all Borrelia burgdorferi spirochetes, antibiotics should be continued for 2 months after all symptoms of Lyme disease resolve, for 2 months after they no longer have a Jarisch-Herxheimer reaction, for 2 months after they no longer have a Lyme flare-up induced by a non-Lyme infection such as common cold, chicken pox, influenza, tonsillitis or menstruation. If these criteria are met then the child’s Lyme disease appears cured and all Borrelia burgdorferi spirochetes can be considered eradicated. If antibiotic therapy is stopped prematurely, before all Lyme symptoms have resolved, then these children will have a Lyme relapse and have more brain and body injury by a more resilient, more difficult to treat Lyme organism. There is no evidence that 3-6 weeks of antibiotic therapy can eradicate all Borrelia burgdorferi spirochetes and cure Lyme disease. There has never been a study in the history of Lyme disease that determines the duration of antibiotic therapy needed to eradicate all Borrelia burgdorferi spirochetes. There is, however, ample evidence in the peer-reviewed medical literature that the Borrelia burgdorferi spirochete can persist after prolonged IV antibiotic therapy of one month to one year or longer.
- Persisting Lyme symptoms indicate a persisting Borrelia burgdorferi infection in need of continuous antibiotic therapy until all symptoms have resolved.
- In children, persisting Lyme symptoms indicate a persisting Borrelia burgdorferi infection and not “Post- Lyme-syndrome,” not fibromyalgia, not MS, not CFS (chronic fatigue syndrome), not a psychiatric disorder and not another diagnosis.
- Withholding necessary antibiotic therapy can result in children with Lyme disease having unnecessary permanently injured lives.
- I have treated and evaluated over 7000 children with Lyme disease. After receiving 3 months to 7 years of continuous antibiotic therapy, 75% of the children I treat are well and without signs of Lyme disease on follow-up over a period of 1-15 years. One-third of these 7000 children are newly diagnosed or have a persisting deeply entrenched, more difficult-to-treat Borrelia burgdorferi infection, that results from a delay in diagnosing their Lyme disease and/or inadequate initial antibiotic therapy.
The Children’s Treatment Issue of the Lyme Times was published in 2005. Members of LymeDisease.org can access the complete issue in our online archives.
The photograph of Dr. Jones is courtesy of Dr. Kenneth Liegner.
Click here to read: A eulogy for Dr. Charles Ray Jones, by friends and admirers
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