Undiagnosed Childhood Lyme Disease Affects Thousands!
Undiagnosed Lyme Disease affects thousands of people! Could your undiagnosed health problems be Lyme Disease? Learn more in this article.
I have controlled Chronic Lyme Disease from when we lived in TN for 5 years, reactivated from childhood. I ended up getting officially diagnosed almost two years later, after we moved there in 2015. The debilitating symptoms nearly took my health and memory.
By the time I was officially diagnosed, my balance was affected, my memory was deteriorating, and I had pain all over. I was burning eggs with horrible memory issues.
My husband ended up in the hospital with Rocky Mountain Spotted fever as well.
I am a Lyme Warrior who walked the journey to living life again, but I still have issues if I don’t pay attention. I used herbal medicine to take back control of my health, but it took several years. I use herbal medicine to maintain my health. I am telling you this now, because I am starting my Lyme course in Feb. You need to know I have gone down the path personally and know how you feel. I also know you can get your life back, and that is important.
My memory has almost completely recovered.
What I realized only eight years ago is that most of the health issues that plagued me as an adult most probably came from my undiagnosed childhood Lyme disease. I was never diagnosed, so I never received a diagnosis or treatment. I never even considered Lyme Disease until we moved to TN.
You or your child may be one of thousands of children and adults suffering from undiagnosed childhood Lyme disease or one of its co-infections!
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 rarely pay attention when they are playing. Many kids 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.
Kids may not tell you because you think ticks are no big thing, and you may tell their child to just toughen up.
Children may be ridiculed if they complain or cry. It’s only a tick; get over it. That was my parents’ view in the 1960s, when I experienced severe knee pain later, with no diagnosis! It was told to be tough! There is nothing seriously wrong, according to the doctors. The doctor tested you for the main stuff, such as polio. So the diagnosis was 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 from your childhood.
“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 tomboy until about 14. I spent my days after school exploring, riding my horse, and biking everywhere. I had a microscope and spent hours taking samples from our local stream and everywhere. Our house was located on about 2 acres, with manzanita bushes that carried ticks. I would often take a shortcut through the manzanita on my explorations. I loved to run and was always active.
Do you remember having at least one tick bite as a kid, or perhaps many? Did you have childhood arthritis?
Around the age of 10 or 12, I got a tick under my long, thick hair. By the time it got painful, it was full, gray, and ugly, and embedded in my neck so that the doctor had to dig it out. Aside from the pain, no one gave much thought to the long-term consequences. It was during that time period that I developed severe pain in my knees so that I could hardly walk.
Mom took me to the local doctor, who was lousy, but he was the only one we had in my small hometown of Julian, CA. This would have been around 1962. I was in elementary school. The doctor tested me for polio, Juvenile Arthritis, Rheumatoid Arthritis, and several other things, all of which came out negative. He could not come up with a diagnosis, so he labeled it growing pains. I suffered for several years severely, then eventually got better, but my knees would never be the same.
Knee discomfort was constant and affected my jobs, exercise, and lifestyle. I just considered it the norm and went on with my life. I did try to get a diagnosis, and I was told it was arthritis and to live with it and take OTC meds. I went to doctors who dismissed it.
Once I got into herbal medicine in my 30’s, I used herbs to deal with the discomfort and inflammation. All my life, I always questioned why my knees were fine, then suddenly became painful with no accident or injury to blame it on.
Many patients know today they probably had Childhood Lyme Disease, which impacted and impaired their whole childhood and adult life as well.
I suffered with arthritis in my knees and hands, on and off, most of my adult life, chalking it up to heredity or working very physical jobs. I never considered Lyme disease because it was not talked about. Even today, Lyme disease is dismissed by doctors and the healthcare system.
Then in 2016, we moved to TN and lived there for 5 years. We got bitten by ticks daily and had to scrape them off every night. I had welts on top of welts. I got sicker and sicker chaking it up to stress and being a caregiver for my father-in-law, then to grief when he died. It was our neighbor who told me it was Lyme, even though I had taken 3 Lyme tests that were negative. He sent me to his doctor, who had properly diagnosed his illness.
I finally got diagnosed in TN properly, but now I am almost certain it was reactivated Lyme Disease as well from my childhood. I had accepted my knee pain, which has plagued me into adulthood, as something I had to live with. In my mind, I had always questioned what caused my knee issues to come on suddenly. In looking back, I am very certain it was Lyme Disease.
If your child hangs out in trees, brush, and bushes and has gotten bitten by ticks, your child’s undiagnosed symptoms could be 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?
To this day, in many southern states like TN, local people won’t consider tick-borne 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 that 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 were very sick. Many of them had lived there all their lives. Our whole area was a real hot spot for tick-borne diseases.
TN is not among the CDC's hot spots because people do not take tick bites seriously or seek medical care. The cases never get documented.
Some 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 could point to childhood Lyme Disease?
Do your children play in the country a lot? Do you have ticks in your area?
Do they camp a lot? Hang out in trees or heavy brush?
Has your child had any weird rashes or symptoms that started out of the blue?
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 recurring fevers, sudden inability to play sports or even keep up with schoolwork.
Lyme disease loves joints and eyes because ticks feed on 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 each morning.
Parents, you need to take your kids seriously and get them tested with an LLD who knows what they are doing. Your general pediatrician is not trained to screen for Lyme disease and its co-infections. They usually have no idea 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 carriers of Bartonella, 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.
PANS Symptoms
Your child develops symptoms such as 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 differ, so it is important to see an 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.
Misconceptions about Lyme Disease that are told to you by doctors who know nothing about Lyme Disease.
One of the most serious misconceptions told to patients is that the tick must be embedded in your body for 12 hours or more to become infected with Lyme disease. That is untrue. It is usually the tiny Nymph ticks that are the culprit. You may never even know you have a tick or ticks on you.
Do take your child to a Lyme specialist to rule out Lyme Disease, not a GP. Your local doctor will most likely discount the tick bite and the symptoms and misdiagnose your child. The average person sees 6 doctors or more before getting a proper diagnosis.
DO NOT accept the doctor’s diagnosis that it can’t be Lyme disease because your ELISA test came out negative. The ELISA test misses almost 60% of Lyme disease cases.
Do not listen to them when they state that if the tick was not attached for 12 hours or more, it does not need treatment.
Do not believe that when your child suddenly becomes sick, they are just trying to get out of going to school or looking for attention.
A negative ELISA test or Western Blot does not mean you don’t have Lyme disease. It does not test for the various co-infections and misses more cases than it diagnoses.
Know that, most of the time, 10 days of Doxi does not resolve the problem. Realize that Lyme disease is not the only infection injected into your body in that tick bite; co-infections are often injected as well. Specialized testing is needed to diagnose and treat co-infections.
Know that there are many thousands of adults and children who have Lyme Disease or its co-infections that 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 are affecting the lives of thousands. Don’t be one of those statistics
At the end of Feb, I will start a Lyme course that will be automatically sent to my subscribers. I have taken several courses on Lyme disease taught by Dr. Nicola, who treats Lyme disease. I hope the class will help readers realize they need to get treatment. If you don’t have Lyme disease, you may have a spouse, relative, or neighbor who does. You can unsubscribe with one click.
Lack of support by family members is one of the most stressful factors with Lyme Disease!
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