My Life With Lyme Disease: A Dark Reality

I have lived in New Paltz my whole life and throughout that time, have grown accustomed to many of the seemingly odd local rituals that our town performs. One of these oddities is that in elementary school, New Paltz students learn to tuck their jeans into their socks, stuffing them full until their feet look like weird upside down sock puppets before departing on a field trip.

This is all part of the general awareness for ticks that the Hudson Valley strongly promotes to its residents. Students learn to buddy up and do tick checks and their noses often become normalized to the scent of DEET as parents worryingly spray down their clothes. Frequently there are conferences and presentations at local universities. Hospitals host support groups and lectures for those affected by the diseases that ticks carry. Signs warning of ticks litter hiking trails and frequent posts on Facebook talk of the ticks found on kids or pets after a day playing outside.

In my experience, it is rare to find a resident of the Hudson Valley who hasn’t been affected by Lyme disease, the most common of the tick borne illnesses, personally or otherwise witnessed a friend, family member or pet contract the disease. Because of this, tick vigilance is often high and the community engages in many tick prevention measures common in highly impacted areas. 

When I first fell ill with Lyme nearly 10 years ago, a few months prior to my first day of high school, awareness was nowhere near what it is now. As my friends scurried through the tight hallways of New Paltz High School, I was shuffled between doctor’s offices and hospitals. Doctors ran tests and did complicated procedures to garner any hint at what was wrong with my body. Every test came back negative and my health began to rapidly deteriorate. The fatigue, anxiety and stomach pain that I was experiencing quickly grew into other symptoms. I became so weak that getting out of bed was a struggle. I was carried up and down stairs by my parents and developed such fierce anxiety that even if I had been able to walk, I couldn’t have left the house. 

Stomach and nerve pain took over my body and horrible stabbing pains would shoot through me at random moments, leaving me falling to the floor, screaming. I visited more doctors and more sent me away. I was without hope for a future. My mother dedicated every waking moment to solving the puzzle of my illness and after months of searching, developed a hunch that it could be Lyme disease. 

As I grew sicker and as more doctor visits came up empty handed, my mother began to desperately search for other people with severe Lyme disease. Eventually, my mother’s lamentations met the cries of other mothers of teens who had developed abnormal symptoms like I had, symptoms that were typically unrecognized by most doctors at the time. In Facebook groups and online meetings, I witnessed thousands of young adults struggling, often in a much worse condition than I was. I desperately avoided these meetings, as it was too frightening for me at 13 years old to hear stories of people in their 20s still bedridden and ill, unable to progress in their lives at all. 

Eventually, I found a doctor who was willing to test and engage with my Lyme diagnosis and began a long period of treatment that lasted four years before regaining my health. 

Many people are not that lucky. Up to 20% of cases are deemed as “long Lyme,” severe cases of Lyme disease that do not respond to typical treatment and that have persistent, often life altering symptoms that refuse to go away. My case and the ones of those in the Facebook groups would fall into this new designation. The cause of these cases is unclear, but with nearly 500,000 new cases of Lyme every year (a 59% increase from the last survey), up to 100,000 people could contract long Lyme yearly. In addition to this, the rate of new cases has been steadily climbing. Insurance claims related to Lyme disease have increased 350% since 2007 and the amount of counties designated as high risk for Lyme disease has tripled.

Frighteningly, a diagnosis of Lyme disease is difficult and unreliable. Lyme symptoms are often very common and are symptoms of many different diseases, making discovering the true cause of discomfort a lengthy process. When treating Lyme, it is important to get fast and effective treatment immediately after infection to avoid the development of long term symptoms. However, due to the fact that symptoms mask themselves as other illnesses, long testing periods prevent this quick treatment from happening. 

One key diagnostic criteria that many doctors use to differentiate between Lyme and other illnesses is the bullseye shaped Lyme rash. However, Lyme rash can appear in as little as 60% of cases. It is often not shaped like a bullseye at all and can appear in a part of the body not frequently seen, leaving it unnoticed. Furthermore, testing accuracy remains controversial, with different medical establishments citing wildly different accuracy ratings. However, according to a 20 year study, the mean sensitivity of all tests was only 59.5%, a scary figure for a disease that can so easily destroy lives and for a medical system that relies on positive tests in order to get insurance coverage for treatment. I tested negative repeatedly before eventually testing positive years into my battle with the disease. 

However, the situation is not entirely bleak. While treatment can be difficult, prevention is easy and weird community rituals like tucking jeans into socks can make a massive difference. Doing tick checks, wearing tick/bug spray and avoiding areas of high tick density, such as the inner forest, can protect you. Additionally, adding tick prevention to pets can keep them from entering your yard and home. 

Research, treatment and awareness has come a long way from where it was 10 years ago and support from institutions that did not exist when I struggled now do. Movies such as “The Quiet Epidemic” and “The Monster Inside Me” have been released over the past year and celebrities such as Justin Bieber and Avril Lavigne have spoken out about their own struggles with the disease, while others such as Ally Hilfiger have released books about their struggles. All this has led to much more awareness and open dialogue about the illness, hopefully leading to a brighter future for those who are struggling.