I’ve been dreaming up the idea for this blog series, The Lyme Diaries, for several weeks now and am excited to finally kick it off with this introductory post. The goal behind this series is primarily to bring more awareness and knowledge to Lyme Disease (as always), but it is also to provide fellow Lyme sufferers with a chance to share their story and personal experiences with this disease. The reason for the name, The Lyme Diaries, is because we’ll be taking a closer look into the lives of those who suffer from Lyme. Rather than interviewing each person, I created a short questionnaire which I then sent out to a few of my Lyme buddies. I’ll be collecting questionnaires and aiming to post one or two per week, and as more and more stories roll in I’ll be adding them to this page so that they’re easy to browse through.
The questionnaire is designed to take a brief inventory of things like the patient’s dominant symptoms and how long they have been sick, but it’s also meant to reflect the person behind the illness. In my own life I choose not to identify with my illness too much. Obviously it’s a big part of my life and it cannot be ignored, but I try not to take on a sick person mentality. For this reason, I shy away from using the term, “Lymie”. My sister said it perfectly when we were discussing it last night by saying, “You’re a person with Lyme. Not a Lyme with a person”. This is the way I choose to view myself in light of my illness, and it’s important for me and for others struggling with chronic illnesses to remember that we are so much more than our symptoms and our illnesses.
This quote by C.S. Lewis helps to remind me that I am not my body, just as I am not my illness. I dare you to let this sink in. Really, let it sink in deep.
The first questionnaire of the project is brought to you by yours truly, check it out below. Lastly, if you or someone you know is struggling with Lyme and would like to lend your story to this project, then I would be delighted to hear from you! Please email me at firstname.lastname@example.org, and I’ll send you the details.
First Name: Kayla
Where do you live? Houston, Texas
When/Where do you suspect that you contracted Lyme?
I’m not sure when I contracted Lyme, the only time I recall a tick bite was when I was around 7 or 8 years old, and I’ve felt unwell for as long as I can remember. I suspect I was infected in Texas.
When did you first begin to feel ill or start to notice strange symptoms?
I’ve had strange symptoms since I was a kid. Things really flared up when I was 19, and I gradually became sicker and sicker until I was finally diagnosed at age 27.
What were they?
As a kid I remember having random symptoms like, headaches, IBS, acid reflux, and anxiety. I also had a major case of ADHD and was very hyperactive. When my symptoms started to flare in college I developed severe allergies, major digestive issues, increased anxiety, insomnia, and fatigue.
How many doctors did you see before reaching an accurate diagnosis?
Once I became so sick that it was clear that something was wrong, I actively pursued many doctors in NYC and Texas. Over a one year time period, I saw at least 20 different doctors prior to being diagnosed. This number does not include ER visits or hospital stays.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
Yes, I was first diagnosed with Basilar Artery Migraines, then Fibromyalgia and Chronic Fatigue Syndrome.
What are the main symptoms that you experience currently?
My most debilitating symptoms are severe headaches, body-wide pain, and fatigue, but my full symptoms list can be viewed here.
What does your treatment regimen look like?
Right now, I’m on a natural treatment regimen, with the exception of a few pharmaceuticals to help control pain, allergies, and anxiety. I take about 65 pills per day and drink lots of tinctures and detoxifying drinks. Food is also a big part of my treatment, as it has helped me to get rid of candida and heal my intestinal tract. You can view my complete protocol here.
How much do your symptoms prevent you from living a normal life?
Completely. I have been housebound with the exception of doctor appointments for the past year. Lyme Disease effects every area of my life- I had to move from my home in NYC to Texas to live with my parents. I lost my job. I have too much pain to walk more than about 200 ft per day, and not all at once. I constantly gauge my energy output to make sure that I don’t “overdo” it. I don’t get to see my boyfriend or closest friends nearly enough, as most of them live hundreds of miles away.
What do you like to do in your free time and how is this different than before you were sick?
I’ve gotten really into nail art, and I watch A LOT of TV. I also spend lots of time researching Lyme, texting and emailing with friends, and connecting with others suffering from Lyme and other chronic illnesses. I can’t say that I did a lot of any of these things before- I preferred to be doing something whether it be going to dinner with friends, working out or going for a run, perusing through vintage shops and museums, or attending music festivals. I’ve always hated being still, but Lyme has stopped me in my tracks.
What do you want people to know about Lyme?
Firstly, I want people to know that Chronic Lyme exists. So many don’t understand this disease or the implications for it’s sufferers, and I want this disease to be taken more seriously by doctors and by the public alike. Secondly, I want people to know that anyone can be infected. Lyme doesn’t acknowledge race, diet, or lifestyle, it can attack anyone, no matter how healthy you are at the time of infection.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
I am most thankful for the perspective I’ve gained through this illness. The suffering and pain that I have had to endure has truly been terrible, it’s such an injustice because I believe that much of it could have been prevented had doctors been educated about this disease. My own suffering has opened my eyes to another side of the world that I only minimally knew existed, and I certainly could not relate to in any meaningful way prior to becoming so ill. The world I’m referring to is the world that many people live in daily. It’s a world of unimaginable suffering. It’s a world where people go hungry, living conditions are grotesque, clean water is the thing of dreams, and people live in immense physical pain day in and day out. These injustices are not the exception, as they are in the US, they are the norm. And even here in the western world, there are thousands of silent sufferers who don’t have access to the internet, or who are too sick to have a voice, as I was for such a long time. This disease has inspired me to speak up, I believe it’s my responsibility so that countless more don’t end up suffering needlessly.