Like so many of my closest Lyme friends these days, I met Kristen on the wonderful world of Instagram. For me, Instagram has been such a wonderful place to connect with others who are navigating this crazy world of illness and healing, and I am so grateful for the support system I’ve found there.
Kristen writes a blog called The Lethal Lymie , and I encourage you to check it out if you’re interested in learning more about her story, treatment plan, and especially her time at the Sierra Integrative Medical Center, where she has been in intensive treatment for the past few weeks. Even though Kristen and I haven’t spent a lot of time chatting, I have learned a lot from her journey, and am thrilled to be able to share some of her path toward healing with you.
First Name: Kristen
Where do you live? Tennessee, but I’m a New Englander at heart
When/Where do you suspect that you contracted Lyme?
May 2011 from a tick bite while camping in Arkansas. However, the tests showed I had it prior to this tick bite.
When did you first begin to feel ill or start to notice strange symptoms?
My symptoms began 3 days after the tick bite in May 2011 when I started my 2 weeks of Doxycycline. What I thought was a reaction or sensitivity to the medicine, was really a Herxheimer reaction.
What were they?
Daily migraines, joint pain (knees, elbows, wrists), weakness in knees and ankles, lower back pain, fatigue, irritability/moodiness, depression, fits of rage, nausea, sensitivity to light and sound, eye pain, finger and toe numbness, skin sensitivity, muscle weakness, jaw pain, ringing in ears with pain, teeth/jaw pain, migrating pain all over body, and neck stiffness.
How many doctors did you see before reaching an accurate diagnosis?
The first Lyme test I had came back positive, so I knew at that time that I had Lyme. I did see an Infectious Disease doctor a month later to follow up on all my symptoms. He tested me again, the test came back negative, and he told me that I didn’t have Lyme, and that my original positive test was not accurate. I saw a LLMD a couple months later and started treatment.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
No. I am one of the lucky ones.
What are the main symptoms that you experience currently?
Fatigue, joint pain (mostly in knees and shoulders), migrating stabbing pains, weakness, brain fog, memory loss, difficulty concentrating, speech problems, depression, light and sound sensitivities, jaw pain.
What does your treatment regimen look like?
After being on oral antibiotics from August 2011 until December 2013, I am currently getting treated at Sierra Integrative Medical Center. I am no longer taking over the counter or prescription drugs. I am getting 4 different treatments via IV and injections at SIMC, as well as changing my diet to gluten free, sugar free and focusing on cleaning out my body and ridding it of all toxins.
How much do your symptoms prevent you from living a normal life?
A lot. The fatigue really did me in. I think that was the main cause of my depression. While working in sales and marketing, depression is not the best thing to be carrying around. And then there’s the fatigue. Having to wake up, shower, dry my hair, put on make up, and get dressed, I was done for the day before I even left the house. Then having to fake it. Putting on a happy face and surviving another day was completely draining. All I wanted to do was crawl back into bed and sleep forever. On top of that, I would have the pain. Pain in my head all the way down to my feet. Looking back, I’m really not sure how I made it this far. I’m so grateful for my loved ones. I have recently quit my day job to focus on healing.
What do you like to do in your free time and how is this different than before you were sick?
I like to lay in bed, in a dark room, with my husband and two dogs and watch movies. Before I was sick I was very active. Working two jobs, working out 5 days a week (cardio and weights), cooking yummy delicious meals, taking the pups for walks, hanging out with friends and family. I pray and hope that I can do all those things again without feeling like I’m dying.
What do you want people to know about Lyme?
I want everyone to educate themselves before it’s too late. I want them to know that Chronic Lyme does exist, and it is an invisible illness. I want them to know that 2-4 weeks of antibiotics will not cure Lyme, the testing isn’t accurate, ticks are not the only carriers of Lyme, and most doctors don’t know anything about chronic Lyme. And if they do get a tick bite, they need to see a LLMD to make sure they are ok. I wish everyone would watch the documentary “Under Our Skin”.It was a huge eye opener for me when I was first researching.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
My relationship with God has been strengthened and I will always be so very grateful for that. I have learned a lot about myself and others and I have learned about compassion. I have learned to appreciate the little things. And I am so thankful for the friendships that I have made along this journey. I have met some very strong and inspiring people, and I hope to help others as they have helped me.