Undiagnosed Childhood Lyme Disease
There may be thousands of children with undiagnosed childhood Lyme disease. There are no accurate numbers but if there are many thousands of adults who go undiagnosed, there are thousands of children in the same boat. Children often don’t pay attention when they are playing. Many of them think bugs are pretty interesting or cool. They may pick them up or pick them off not thinking about it. More often, they may not tell their parents about the incident. My son put an eraser in his ear. He was afraid to tell me he did it. 30 years later an exam found it and the doctor took it out. This was 30 years later and many doctor visits later.
Kids may not tell you because your view is ticks are no big thing and you may tell their child to just toughen up. Children may be ridiculed if they complain or cry. Its only a tick, get over it. That was my parents view in the 1960s. When I was in severe knee pain later with no diagnosis, it was toughen up, there is nothing seriously wrong. The doctor tested you for the main stuff such as polio. It was serious and not growing pains. It impacted my knees and ability to run for the rest of my life. I had other health problems as well that probably were due to that embedded tick. Ticks can ruin your child’s health. I need to tell my story next because many of you who read this article may then recall something similar in your childhood history.
“The Growing Pains” labeled by my doctor in my childhood were probably Undiagnosed Childhood Lyme Disease. Could this be your story growing up?
My childhood was free range in the country but ticks were part of that environment.
As a kid I grew up in the little town of Julian in the San Diego, CA mountains. I was a tom boy until about 14. I spent my days after school exploring, riding my horse and riding my bike everywhere. I had a microscope and spent hours taking samples from our local stream and everywhere. Our house was located on about two acres with manzanita bushes which carried ticks. I would often take a shortcut through the manzanita on my exploring. I loved to run and was always active.
Do you remember having at least one tick bite as a kid or perhaps many?
Around the age of 10 or 12 I ended up with a tick that was attached underneath my long, thick hair. By the time we caught it, it was full, gray and ugly and embedded in my neck so that a doctor had to dig it out. Other than hurting, no one gave much thought to the long-term consequences. It was in that time period, I developed severe pain in my knees so that I could hardly walk. My mom took me to the local horse doctor who was a lousy doctor but he was the only one we had in that small town. This would have been around 1962. I was in elementary school. The doctor tested me for Polio, Juvenal Childhood Arthritis, Rheumatoid Arthritis and several other things which all came out negative. He could not come up with a diagnosis so he said it was growing pains. I suffered for several years badly then eventually got better but my knees would never be the same.
Many patients know they had Childhood Lyme Disease which impacted and impaired their whole childhood and adult life as well.
I suffered with arthritis on and off most of my adult life chocking it up to heredity or working very physical jobs. I never considered Lyme disease. Then in 2016 we moved to TN and lived there for 5 years. We got bitten daily by ticks and scraped them off every night. I had welts on top of welts. I finally got diagnosed in TN properly but now I am almost certain it was reactivated Lyme Disease as well from my childhood. I accepted arthritis chalking it up to heredity. I never really thought much past that. I had always questioned what caused my knee issues to come on suddenly and cost me several years of severe pain and trouble. In looking back, I am very certain in was Lyme Disease.
Did your childhood include ticks and tick bites?
In your area, do people play down the significance of tick bites and health problems?
So how many of you out there grew up in areas where childhood tick bites were considered normal, nothing to get upset about?
Still today in many southern states like TN, local people won’t consider tick disease as the cause of their symptoms. I have family like that. They will not go to the effort of getting tested. In their mind, it is just old age or work related. I have a nephew who has fatigue so bad, he can hardly walk across the floor but none of them will consider Lyme Disease or its co infections. They just keep going to doctors, taking more medicine that solves none of their issues. They have blinders on. When we were living in Indian Mound, TN many locals ended up in the hospital or very sick. Many of them had lived there all their lives. Our whole area was a real hot spot for tick diseases.
The reason TN is not one of the hot spots listed by the CDC is because people do not take them seriously or go to the doctor. Some of the locals will just tell you to toughen up and not worry about them. This is why I know there are probably thousands in TN with unconfirmed cases of Lyme and co-infections.
What symptoms is your child or teen showing that perhaps mean childhood Lyme Disease?
Do your children play in the country a lot?
Do they camp a lot? Hang out in trees or heavy brush? Is your area a problem for ticks?
Has your child had any weird rashes?
Did your child have a tick bite or go camping just before their behavior changed?
Sudden long lasting severe fatigue, knee pain and other joint pain, headaches, memory issues, rages, unexplained reoccurring fevers, sudden inability to play sports or even keep up with school work. Lyme disease love joints because they use collagen to keep replicating. That is why you have eye pain and weird eye symptoms and your hair often falls out. You will notice your hair stops growing and more hair appears in your brush with each morning. Parents you need to take your kids seriously and get them tested with a LLD who knows what they are doing. Your general pediatrician is not versed on looking for Lyme and its co infections. They have no idea usually how to properly treat your child or what tests are needed. The standard tests are junk tests and highly inaccurate.
“Other classic Lyme manifestations that can develop include a weakness or paralysis of facial muscles (Bell’s palsy); intense headaches, numbness, tingling, or weakness in extremities (neuropathy); eye and heart issues (especially cardiac rhythm abnormalities); and joint swelling or pain. Gastrointestinal symptoms, generally underappreciated as potential Lyme manifestations, may include nausea, abdominal pain, vomiting, loss of appetite, gastroparesis (stomach paralysis), and/or constipation.” https://www.lymedisease.org/members/lyme-times/2023-summer-patient-matters/treating-lyme-young-children/
“Lyme disease can also cause behavioral or mood changes in children. Some children develop neuropsychiatric manifestations such as anxiety, depression, panic attacks, or obsessive-compulsive disorders.” https://www.lymedisease.org/members/lyme-times/2023-summer-patient-matters/treating-lyme-young-children/
Your child needs to be tested for co-infections, not just Lyme Disease. You will often find Lyme Disease with several co-infections as well in patients both young and old.
Ticks are not the only carrier of Bartonella which is one of the co-infections of Lyme Disease. Fleas, Lice, and cat scratches can also cause Baronellosis.
What is PANS?
PANS is a condition called pediatric acute-onset neuropsychiatric syndrome. It affects children and young teens.
Your child develops symptoms such ad OCD, eating abnormalities, anxiety, mood swings, rages, anger episodes, ADD and other behavior issues that may come on suddenly. There are many infections that can cause PANS and Lyme Disease is one of them.
PANS and Lyme Symptoms look similar
Many of the symptoms for PANS and LYME look very similar so misdiagnosis is the norm rather than the exception. Your child could have both illnesses. The treatments are different so it is important to take them to a LLD to rule out Lyme disease and its co-infections. You need to do that first especially if you live in areas with ticks, go camping, or the child has experienced tick bites. The tick does NOT have to be Eon your body for 12 hours or more. That is untrue. It is usually the tiny Nymph ticks that are the culprit. You many never even know you have a tick or ticks on you. Do take your child to a Lyme specialist to rule out Lyme Disease. Your local doctor will most likely misdiagnose your child and their symptoms. DO NOT take their diagnosis that is can’t be Lyme disease because of an Elisa test which misses almost 60 percent of Lyme cases. Do not listen when they say if the tick was not attached for 12 hours or more, it does not need treatment. Do not believe your child is suddenly sick but they are just trying to get attention. A negative Elisa test or Western Bo.t does not mean you don’t have Lyme disease. It does not test for the various co-infections. Know that most often 10 days of Doxi does not take care of the problem. Know that there are many thousands of adults and children that have Lyme Disease or its co-infections and go undiagnosed or misdiagnosed. Often the treatment is inadequate. Lyme is one of the worst diseases for misdiagnosis and treatment. This misdiagnosis and lack of proper treatment is affecting the lives of thousands. Don’t be one of those statistics