By: Sophia Daniels
“What nobody tells you is that the basic blood test [for Lyme disease] does not show Lyme disease in over 60% of actual Lyme cases,” senior Abi Rasol said. Rasol is part of that 60%. Because of these complications, it took Rasol more than two years to discover that she has Lyme disease.
In the spirit of May’s Lyme Disease Awareness month, Rasol shared with Helios the story of her experience with the disease and how others can help advocate for Lyme patients in the month of May and beyond.
Lyme is transmitted through the bite of an infected tick. Rasol explained that “Lyme disease” is usually a blanket term used to describe various infections that ticks carry and transmit to humans. In most cases, patients that are infected with the bacteria borrelia burgdorferi (the main cause of Lyme) are also infected with co-infections such as Babesia, Ehrlichia, and Bartonella – all separate infections that require their own treatments. In 40% of cases, people know they’ve been bitten because a bull’s-eye rash appears on the skin: darker on the inside, lighter on the outside. However, in the other 60% of cases, the rash does not show, so there is no way for a person to know that they are infected.
The longer the disease goes undiagnosed, the worse the symptoms – which include headaches, fatigue, joint pains, seizures, insomnia, depression, and cognitive impairment – may become. Lyme is often misdiagnosed as diseases like Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis, and Parkinson’s because the symptoms frequently overlap.
When caught in its early stages, Lyme can be treated with a light regimen of antibiotics over the course of a couple of weeks, similar to strep throat. When not diagnosed until much later, however, it develops into a systemic infection. Rasol said that it becomes “less of the tick attacking your body, and more of the tick working itself into your body in such a way that your body starts attacking itself.” The disease then destroys the immune system and infects every organ, muscle, tissue and cell of the body. At that point, the disease becomes chronic and requires intensive treatment, even to simply bring the patient to remission.
Rasol experienced the latter version. She “had no idea when [she] was bitten,” which is one of the reasons her Lyme was not diagnosed until later. She started noticing symptoms in her freshman year, mainly fatigue. Her friends and family thought it was just because she had overworked herself in ninth grade, staying up until three in the morning doing homework. Sleep was never the solution, however, and in tenth grade she started experiencing joint pains and headaches in addition to her constant exhaustion.
By this point, Rasol’s symptoms correlated with many of those associated with general autoimmune diseases, and as such, she was tested for them. When her initial marker for autoimmune diseases came back positive, she traveled to various specialists in the next two years in an attempt to know which disease she had, to no avail. It was not until her mom’s acquaintance, who has Lyme, heard about Rasol’s symptoms and suggested that she get tested for Lyme, shocked by the similarities between hers and Rasol’s experiences.
Surprisingly, it was Rasol’s mom who requested that she get re-tested for Lyme, not the seventeen doctors she had visited before. Rasol was part of the 60% of Lyme patients that go undiagnosed through the initial blood test – the “Elisa test” – and she was only diagnosed when her mother decided to send her blood to an advanced testing lab specializing in Lyme and other tick-borne diseases. She was finally diagnosed with Lyme two-and-a-half years after she had initially gotten sick, which, as she noted, “is the average timeline for someone with chronic Lyme.”
Evidently, the testing is very outdated. “That is what most of the patients involved in advocacy advocate for… It’s something that is so preventable, and the fact that it can be eradicated within a three-week regime of very easy antibiotics is incredible, but there are so few people who actually get to stay in that stage because the testing is so outdated and unreliable,” Rasol explained. “This is so upsetting because there could be so many people that could be healthy right now if they didn’t have to go through such unreliable testing – me, for example.”
Advocates are also trying to change the way the Center for Disease Control (CDC) acknowledges the disease and change the CDC’s policies regarding Lyme to be more supportive of patients. For example, Lyme patients end up paying $100,000 a year out-of-pocket, if not more, because of the lack of insurance policies covering Lyme treatments. Furthermore, less than 1% of of the CDC’s national funding is allocated toward treating chronic Lyme, despite the fact that it is the largest growing infectious disease in the country and is now classified as a pandemic.
While many advocates focus on reaching out to the government to update policies and testing, for Rasol, it’s about “reaching people on a personal basis and spreading the word in that regard.” She said she “was actually really private about [her] condition until a few months ago, when [she] was getting more ill and joined some support groups online and became more immersed in the Lyme community.” Joining these groups allowed her to see that there were others going through the same experiences and who were involved in advocacy, and they inspired her to do the same. It took her “a while to really be able to push myself to share on such a personal level, and it’s definitely still very uncomfortable,” she continued. However, Rasol realized that increasing awareness is so important, so she has pushed herself to share her story and advocate for all Lyme patients.
She added that “if I had been sick and had been scrolling through my Facebook feed, and saw somebody share their story, I would’ve read it and realized that it sounds very similar to what [she] was going through.” Accordingly, Rasol may have gotten tested for Lyme and been diagnosed two years earlier, when the full-fledged disease could have been prevented. In fact, Rasol has already begun accomplishing this goal: after a Facebook friend read Rasol’s story on Facebook, the friend encouraged her mother to get tested for Lyme, discovering that this was the cause of her mother’s symptoms. Now, this woman can get treated early. This is the kind of impact Rasol hopes to have.
Currently, during Lyme Awareness month, the “Take a Bite Out of Lyme Challenge” is circulating on Facebook and other social media platforms, similar to the “ALS Ice Bucket Challenge,” which was popular a few years ago. “You take a bite out of a lime, you donate some money to International Lyme and Associated Diseases Society (ILADS), and you post a fact about Lyme with your video and then tag 3 people [to do the challenge],” Rasol explained. “The last part is really reflective of the attitude that there should be around Lyme advocacy – just getting the information out.”
During the month of May, help Rasol spread awareness about Lyme Disease by participating in the “Take a Bite Out of Lyme Challenge,” educating yourself on the disease, reaching out to Lyme patients, and listening to their stories. Because chronic diseases don’t manifest themselves physically, a person cannot always recognize when someone has a chronic disease. Nonetheless, “society needs to understand that these illnesses are very real and very tangible, so we need to have greater sympathy and understanding for people suffering from them,” Rasol concluded.
You can donate to help fund research into testing and treatment of Lyme disease by visiting Abi’s fundraiser link at https://www.booster.com/squeeze-out-lyme-disease (you can also purchase a shirt!).
Your contribution, however small or large, will benefit the lives of many, so donate now!