By Elizabeth Large, ND
Children are being misdiagnosed too frequently when they actually have Chronic Lyme Disease (CLD) or Tick Borne Disease (TBD). It is very important that parents, teachers, school administrators, school health professionals, pediatricians, mental health professionals and family members learn to understand the signs and symptoms of Lyme Disease. It is an epidemic and children are at high risk for contracting TBD. We need to identify both acute and chronic, persistent TBD. Acute infection is defined as infection for less than a year and easily treated with 6-12 weeks of antibiotics depending on the symptoms present. If a Bull’s Eye rash does occur then it is diagnostic of LD. Unfortunately only 15-30% of the time a Bull’s Eye rash occurs and other types of rash can present and not only around the tick bite site. The chronic form of CLD can be devastating and difficult to eradicate. It impacts all body systems especially the immune system, hormonal system and nervous system. The body begins to respond inappropriately creating further symptoms that can be painful and debilitating.
The primary take home message with children is that their symptoms can be subtle and easily written off as growing pains or increased emotional sensitivity until there is frank disability. Then they lose their normal childhood of playing with friends, participating in school activities, and other recreation outside of school. They lose the energy to lead normal lives. They become too sick.
Risk factors are numerous. Consider all the different activities in which children participate outside in nature. Those between the ages of 10-19 are at highest risk but I have treated children who are younger. Those that live in single family homes with yards in a rural, suburban neighborhood are three times more likely to get TBD than those in the city. Homes with woods or attached open lands are likely environments that carry greater risk. Squirrels, mice, birds, raccoons, and deer are all tick hosts. Having pets that spend time outdoors put you and your child at risk. I know people who have gotten LD from sitting in their bed or on their couch. Activities such as hunting, fishing along a river, horseback riding, golf, field sports, or any other activity in the woods or open lands with tall grasses put a person at risk.
Lyme Disease is the great imitator. Onset of illness can be immediate or appear after a period of being dormant. All body organs and systems can be affected. Symptoms are frequently vague and change from day to day so often children with TBD are labeled as malingerers and /or emotionally disturbed. Often children do not understand what is occurring to their bodies and have a difficult time voicing the many bizarre symptoms that accompany LD.
Lyme Disease crosses the placenta during pregnancy and can be found in breast milk, so infants are at risk if mom goes undiagnosed. Babesia, Bartonella, and Mycoplasma can be transmitted to the fetus as well as Lyme Disease or specifically Borrelia bergdorferi (Bb). Congenital CLD can cause small windpipes, eye problems, heart defects, loss of developmental milestones, and slower learning of new skills. Floppiness and poor muscle tone can occur. Increased irritability and other psychological problems are common. Frequent fevers and illness in early life are flags that need investigating. Joint sensitivities, body pain, and skin sensitivity are additional clues. Gastrointestinal Reflux or Irritable Bowel Syndrome may be a misdiagnosis.
More specifically, with toddlers and preschoolers personality changes are common. Mood swings and sudden emotional outbursts and increased irritability are flags for Lyme Disease. Regression of growth milestones needs to be investigated and LD considered in any diagnostic differential. Most providers are not Lyme literate so they do not consider Lyme when these symptoms are present. A change in play behavior, becoming less active and tiring easily are signs of LD. Frequent infections of the upper and lower respiratory tract can be LD. A recurrence of separation anxiety or new phobias are also symptoms.
For the adolescent, mood swings, oppositional behaviors, anxiety, and depression are common and self-mutilating behavior as well. Teachers may notice that the student is falling asleep in class and their focus and concentration is poor. Teens often fail to show parents changes with their bodies so hide things that might clue a parent to seek medical advice. Behaviors that are considered normal for teens like illegal drug use can be a flag as self-medicating with alcohol and drugs to deal with pain or other symptoms occurs often. Girls may have pelvic pain, menstrual problems and ovarian cysts. Boys may have testicular pain. All symptoms can be one-sided or both sided. Lyme may be sexually transmitted so teens must be educated to use condoms and be safe.
The social issues facing children and adolescents with Lyme can be life changing. Loss of self-esteem, loss of normal socialization and peer group interaction can be devastating. Loss of academic progress sets them behind their peers and makes it hard to catch up. When adults do not believe the sick child, it creates further isolation and injury to their psyche. Families are impacted severely as their normal life is disrupted. Financial pressures increase as often insurance refuses to pay for the treatment as many providers in the western medicine world deny Chronic Lyme Disease even exists. Parents lose work time and other siblings are ignored. The pressures can ruin a family. Physically anyone with CLD feels sick and they hurt. Their brains do not work. The inability to participate in sports and other social activities creates further isolation and depression.
Co-infections are found in 80% of pediatric patients. With co-infections children are sicker, like adults, and are likely to have failed prior treatment. The best way to diagnose is clinically. The infections must be eradicated or they will persist and children need longer treatment with multiple antibiotics or herbs. Treatment needs to last for at least two months past the time where all symptoms are gone and they no longer react or flare with treatment. The most ill child may need IV antibiotics for several months. Permanent neurological and physical impairment may result in those with delayed diagnosis and treatment. When testing using the Western Blot it is best to send the sample to Igenex Lab. If one Lyme specific band is positive then it is a positive test for Lyme. The Lyme specific bands are 18, 23-25, 31, 34, 37, 39, 83, and 93 kDa. There is a new test from Advance Labs for Borrelia or Lyme that is a culture and is showing great promise. However, it costs $600.00.
Neurological and neuro-psychological symptoms are frequent and may be the only presenting sign of infection. They are the most common indication of ongoing infection after inadequate treatment. If your child is treated with only 3-4 weeks of antibiotics then this is usually not adequate and infections will persist. Additionally, inadequate initial treatment makes future treatment more difficult. It is too easy to think what you are seeing and may be hearing from your child is acting out behavior for more attention. Please pay attention to any subtle changes in their behavior and seek a Lyme literate provider for a full evaluation for Lyme Disease. Another resource for you is my book, Nature’s Dirty Needle. The many stories will help you to discern if your child might have TBD.
2012 is the Year of the Tick. They are coming out in droves and are hungry. A friend in New York is telling me his family are picking numerous ticks off on a daily basis and that eradication methods in the garden are ineffective. Please do a tick check every day when your child comes in from play. Look behind their ears, under their arms, in their groin area, behind their knees, and run a lice comb through their hair before they shower. Check everywhere! Nymphs are as tiny as a small freckle and difficult to miss. If a tick is embedded for more than a few hours consider 6 weeks of antibiotics even with no symptoms. If there are any symptoms then you want to treat for at least two months after all symptoms are gone. If it were my child I would continue some herbals for several months. From personal experience I can assure you that you do not want to deal with CLD. Had I known what I know now when my daughter was bitten she would not be gravely ill and bedridden for a year. I hope this information gives you the power to advocate for your child if they show any signs of CLD. If awareness increases then severe chronic illness can be prevented in many cases.