By Jess Szabo
Social media sites like Instagram and Facebook are often accused of being wastes of time, but the Instagram page “August Lyme” is the online home for local support and activism for a typically misunderstood condition known as Lyme Disease.
The Instagram page owner, Kathryn Lapaglia, began her journey with her illness when she began to experience strange, troubling medical symptoms in July of 2016.
“I had very bad chest pains,” she explained. “One night in mid-August, I began to feel extremely lightheaded. It became so severe my Mom had to drive me to the emergency room. I ended up in a wheelchair. The hospital staff thought it was a panic attack; but I have had anxiety in the past, and this did not feel like anxiety.”
Lapaglia experienced severe episodes of pain, lightheadedness, and other debilitating symptoms almost daily for the next several months.
“I had forty different symptoms,” she said. “I think I was having seizures. I would be sitting there watching TV and they would come over me. I also experienced severe migraines.”
The symptoms of Lyme Disease can vary greatly. In the beginning, those with the disease may feel as though they have gotten the flu. Facial Palsy is also common. Many people develop a strange target-shaped rash that does not itch. They may also experience light sensitivity, severe headaches, heart palpitations, night sweats, numbness or tingling sensations, and joint pain. As the disease progresses into a chronic state, the rash fades, but the other issues can remain.
While Lyme Disease can have many symptoms, Lapaglia warns that all of the symptoms are not present in all cases.
“I never got joint pain,” she said. “It’s the number one thing people think you get when you have Lyme Disease. I never had it. I never had a rash. I never had any of the early symptoms.”
Further, some people think they could not possibly have contracted Lyme Disease because it’s spread by the bite of the black legged tick, and they do not spend time outdoors.
Lapaglia points out that one does not have to find a tick on their body in order to contract Lyme Disease. Ticks can be as small as the period in a typed sentence. Lyme Disease can also be carried by other insects, such as mosquitoes or fleas.
Lapaglia urges anyone who feels they may have Lyme Disease to make an appointment with a Lyme Literate Medical Doctor (LMDD). She suggests ensuring your doctor is familiar with the disease because it is so often misdiagnosed.
“Doctors misdiagnosed me for about six months,” she said. “They kept going back to anxiety.”
These incorrect diagnoses left Lapaglia to grapple with side effects of medications for issues she did not have, in addition to coping with the symptoms of chronic Lyme Disease.
“I was given Ativan,” she explained. “It left me feeling like I was drunk all the time between August and November of 2016. I would be going to class, or driving around, high out of my mind.”
It would take two more months before Lapaglia received an accurate diagnosis.
“In the beginning of January 2017, my Dad urged me to take a Lyme Disease test. My primary doctor did not want to give it to me. Since my diagnosis, he has discovered nine additional patients with Lyme Disease. It hadn’t dawned on him to test for it before. He was just as shocked to learn I had Lyme Disease as I was.”
It may sound strange to think of the diagnosis of Lyme Disease as good news, but Lapaglia pointed out that this allowed her to manage her condition.
“When I discovered I had Lyme Disease, I was excited,” she said. “I had a diagnosis.”
Once she knew what she was dealing with, Lapaglia was able to manage her illness.
“I try to get up around eight or nine a.m., but usually have to stay in bed for an hour. Once I get up, I make a healthy breakfast, and drink lemon water.”
Lapaglia further explained that the lemon water is a healthy replacement for the coffee she used to drink, as she suspects coffee was interfering with her already compromised system and triggering the seizures she experienced. Lapaglia used to take antibiotics, but is now able to use supplements.
However, managing Lyme Disease does not eliminate all of Lapaglia’s symptoms.
“Most of my day I rest, because I get fatigued around three or four p.m,” she said. “Making healthy foods and keeping on top of supplements takes up a lot of energy.”
Many of us would simply focus on ourselves in this situation; but Lapaglia has devoted the rest of her energy to helping others with Lyme Disease.
As the founder of August Lyme, Lapaglia provides hope and comfort to anyone who needs it. The site functions as an online gathering place for those who may have difficulty staying out of the house, or leaving the house at all, due to symptoms of Lyme Disease.
“I share my story and experience with my medications and symptoms,” Lapaglia said. “People know what I’m going through.”
She gives credit to her boyfriend, who she describes as being supportive and understanding, and to the friends who have stuck by her, even when her illness prevents her from spending much time with them, yet notes the importance of having someone to talk to who has the same experiences.
“Nobody really understands what it’s like, except the people going through it,” she noted.
Lapaglia encourages anyone coping with Lyme Disease to reach out to her.
“If they follow me or message me, I would be more than happy to message them as soon as I can,” she said. “Even if someone is not sure if they have it…even if they are just wondering if they do…I would be happy to message them.”
But devoting her own online space to others is not enough for Lapaglia. She is also happy to staff tables for Lyme Disease Awareness Month each April, and eager to help others provide further support and activism.
“The owner of the Instagram page ‘My Lyme Diary’ is planning to travel and interview one-hundred people with Lyme Disease, and then produce a book and film about it,” she explained. “It’s tough to find funding for projects like that, because people do not always take Lyme Disease seriously. I’m helping her with that. It keeps me occupied.”
If you are coping with Lyme Disease and would like to be a part of August Lyme, log in to Instagram, or sign up at instgram.com if you’re not a member). You can search for ‘August Lyme’ or type in the address of www.instagram.com/augustlyme.