Most fifth graders in my town are generally worried about what it will be like to go to middle school in sixth grade. For me, I was wondering if I would live.
In 2016, I was diagnosed with Lyme disease. This unfortunate news came after a year of doctors – some the best in their fields of study – calling it growing pains, juvenile rheumatoid arthritis, and my own pediatrician even saying it was “all in my head.”
Shockingly enough, compared to other individuals struck with Lyme disease, I was lucky to only suffer the extreme consequences for just a year, though it remains dormant in my blood system and can become active at any time.
Given my fortunate situation, I hope to “pay it forward” by sharing what I learned from contracting Lyme disease.
Lyme disease, a bacterial infection transmitted most commonly through ticks, can have many fatal long term effects if not treated properly. These include, but are not limited to: severe damage to the heart, joints, nervous and neurological system.
Contrary to popular belief, Lyme disease is not the only infection that can come from a tick; others include Colorado tick fever and Rocky Mountain spotted fever. Despite their names, these various infections are equally concerning based on how prominent ticks are in the northeastern United States.
According to data from the Centers for Disease Control and Prevention (CDC), cases of tickborne illness in the Northeast made up roughly 40% of all cases in the United States in 2019.
New Jersey – Central and Northern New Jersey especially – has one of the highest Lyme disease diagnoses rates in the country, and it is higher than the national average. For example, in 2019, the CDC recorded that 2,400 people in New Jersey were diagnosed with Lyme disease.
The CDC estimates that roughly 300,000 people are diagnosed with Lyme disease each year, but only approximately 35,000 of those cases (only 12%) are actually reported by health care providers. So why are more cases of Lyme disease not being reported? At least one answer is that the disease itself is misunderstood by medical professionals unable (or not properly taught how) to identify it in the first place.
My extended family’s own past experiences with Lyme disease, as well as my parents’ unwillingness to not believe the multiple medical professionals who claimed there was no “medical explanation” for my unexplained ailments, led them to a Lyme-literate doctor who knew how to accurately and effectively diagnose my Lyme disease and get me treated.
Due to the many different strains and variants of Lyme disease (which most medical professionals do not even know exist), there is no one specific way to diagnose Lyme disease. This makes it all the more important to know the common signs so one can act fast before the damage from the disease is irreversible. But there are many misconceptions about Lyme disease diagnosis beyond terrible joint pains, and some of the symptoms (for example, fever, headache, fatigue, dizziness, tingling in the hand and feet) are typical of other conditions, making it harder to identify whether the symptoms come from Lyme disease.
First, one does not need to have the red bulls eye rash to show they contracted the disease – I didn’t! Although the bullseye rash is an easy indicator, it occurs in 70-80% of those infected; so, lack of a rash does not necessarily mean one did not contract Lyme.
Second, blood tests done by a typical lab only test for the most common strain of Lyme disease and are not a reliable way to identify the disease.
Third, Lyme disease is not a temporary condition that is typically cleared up by one round of antibiotics; it remains in the infected person’s body for the rest of their life and can be reactivated.
Should you get a tick bite and you can see the tick in your skin, it is important to follow the proper procedure to remove the tick. Use a tweezer, as close to skin as possible, and pull straight back. If you do not have access to tweezers at the moment, go to urgent care or see a doctor immediately. Do not look up “hacks” on the internet, such as smearing the tick with soap or vaseline.
If you remove the tick yourself, it is important to send it out for testing to see if it was infected with Lyme.
I hope this knowledge will not scare you out of ever leaving your house again. Rather, by knowing the impact of Lyme disease, I hope more of the community in our area – largely affected by Lyme disease – learn and spread the information that I shared.
Had my mother not known the signs of Lyme disease and suggested taking me to a Lyme-literate doctor, it is very possible I would still be suffering without a proper diagnosis, likely losing the ability to function regularly, and most definitely not writing this article.
For more information on Lyme Disease, visit lymediseaseassociation.org