Life with Lyme
DISCLAIMER: The people in this story asked to remain anonymous.
“You learn to accept that your health is your main priority and getting better is the goal”-Anonymous 2
The CDC (Center for Disease Control and Prevention) claims that every year 300,000 people are affected by lyme disease, a few of these people attend Las Lomas.
Anonymous 1 has been chronically ill for a little over five years and was misdiagnosed with P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) in 2013 after experiencing many OCD symptoms. Once they were treated for P.A.N.D.A.S for a year and did not notice a change in their health they got correctly diagnosed with Chronic Lyme Disease along with various co-infections as of May 2017.
Anonymous 2 was diagnosed in May of 2017 after struggling since third grade with Lyme symptoms but because of the lack of awareness of chronic Lyme it took them over five years to discover what their illness actually was.
I asked these students at Las Lomas who are living with Chronic Lyme to explain to me what this disease is. Anonymous 2 defined it as “caused by bacteria carried by a tick that spreads around your body. After the tick bites you, if it is a carrier, it will infect you with different types of bacteria and things called co-infections that can lead to the symptoms Lyme patients have. Some of my symptoms consist of chronic migraines, low back pain, neck pain, joint pain, stomach pain, chronic fatigue, cognitive issues (speech, memory and reading problems, etc)”.
You may think that dealing with these symptoms is hard enough but even more challenges arise when you are an active student going through treatment. Kids with chronic illnesses like Lyme do so much everyday. “School work has always been a very hard thing for me to manage because of the cognitive issues that come with Lyme disease, but I have tutors and teacher that support me and want me to do well which is very helpful. As for managing a social life and medical related things it’s been tough for me to learn that sometimes I’m just too sick to participate in certain activities, but you learn to accept that your health is the main priority and getting better is the goal.” -Anonymous 2. Anonymous 2 also has a PICC line which is a more permanent form of IV. It is a tube that sticks out of your arm that leads to the veins in the heart. The PICC line makes it easier to take IV meds so they don’t have to poke themselves with IV needles. Everyday they come home and sit in a chair with easy access to an IV pole from 3:00-5:30 putting two types of IV medicines into their veins.
Another student facing Lyme disease explains how they manage school work and their social life, “Last year I was in the worst health of my life so for the first semester I was on a home-hospital program for schooling because of extensive treatments, and the second semester I went back to school for half days which forced me to drop three classes. This year I am back at school for a full day of seven periods. I am currently making good grades but am absent one or two times every week, which means I’m in a constant cycle of makeup work. I usually base my pill-taking schedule around school so I make sure I’ll always have time to take them, which has been working well for me. I have an amazing support system of friends who are extremely understanding which has helped me through so many difficult times these past years. Now I am able to hang out with friends on the weekends and was able to see them a few times a month when I was being home-schooled. Being homeschooled and enduring long IV treatments every day definitely took a toll on my social life, but I was able to maintain a 4.0 GPA throughout that time with the help of various tutors.” -Anonymous 1.
Since there is a lack of awareness with Lyme disease, when asked these students would like the Las Lomas student body to be informed that: “Lyme Disease is described as an “invisible illness” because while you may look fine and healthy, but what you’re feeling inside is a different story. Many people don’t know the amount of restrictions people with Chronic Lyme have, all because they don’t particularly look sick. You become an expert at hiding your pain from others to maintain some degree of normalcy to your life which is a coping method I’ve gotten good at.” -Anonymous 1.
Both of these Lyme fighters feel immense support at home and at school Anonymous 1 claims “I have the best group of friends at school who support me and stick by my side no matter how sick I am. They understand when I can’t hang out some days when I don’t feel well and always check on me to make sure I’m doing okay, which means more to me than they’ll ever know.” While Anonymous 2 also feels the love with an understanding family that is constantly working hard to make sure medical appointments and anything she needs is handled.
A lot of people wonder if you can ever recover/reach remission with Chronic Lyme and Anonymous 1 says that you can reach remission with Chronic Lyme when your symptoms have subsided and you feel more able-bodied, but most Lyme patients continue taking supplemental medicine for years after reaching remission to manage the infections in their body. Although some Lyme fighters reach a point in treatment where they are able to return to their old lives and feel completely healthy again, but there is not much research to support a concrete “cure” for Chronic Lyme Disease.
