Lyme Disease: A Patient’s Perspective

ARIZONA RESIDENT Joleen Larsen’s life was upended when she learned her dad was diagnosed with a terminal illness in 2010. The single mom, who is known by family and friends as Jojo, relocated to Arkansas to spend time with her parents, a decision she is grateful for. Little did she know that a tick bite would soon permanently impact her health and alter the course of her life.

BSTQ: How were you exposed to Lyme disease?

Jojo: I started gaining weight and I would sleep easily 16 hours a day and still feel tired. I would call my friends back home in Arizona and cry for help; then, the pain began. I had been in a car accident back in 2009 and initially suspected that those injuries were the source of my pain. Now I know that was only part of my problem. I was in and out of doctor offices, constantly complaining about pain from head to toe, and eventually put on pain management, but I felt nobody was listening to me.

BSTQ: Can you describe your pain?

Jojo: My neck hurt every day for about 10 years. I had back spasms and any movement would cause them to ignite. It felt as if I was being shocked with electricity. My knees were in such pain, and then I got neuropathy so bad I couldn’t walk. To this day, they still hurt. Over the years, I’ve had everything from ear ringing, restless leg syndrome and anxiety/depression, to hair loss, heart palpitations and rashes that itched and burned. My list of complaints became so long doctors wouldn’t even look at me. I spent many years suffering, just hoping someone would listen.

BSTQ: What types of medication did you try?

Jojo: I have been on gabapentin and hydrocodone for pain relief. I was viewed as a pill seeker and hypochondriac, and I was never taken seriously.

BSTQ: When was your diagnosis confirmed?

Jojo: Things changed in the summer of 2023 when my mom found an article about alpha-gal syndrome, an allergic condition associated with tick bites. This illness triggers a severe allergy to beef, something I consumed three to four times a week. This explained at least some of my symptoms. When I realized alpha-gal’s connection to Lyme disease, I called the Centers for Disease Control and Prevention (CDC) and was advised to go to the emergency room for testing. Although I initially tested negative, I did not give up. I started researching where to get treatment for Lyme disease and the options were very confusing, expensive and overwhelming. Eventually, I started looking locally in Arizona, and I found a naturopathic doctor, Jason Porter, NMD, DCN, who specializes in Lyme disease. Right away, based on my symptoms, he confirmed my suspicions and tested me for the common infections that come with it. I tested positive for Lyme disease and bartonella, also known as cat scratch fever. He also tested me for parasites and many other possible contaminants.

BSTQ: What was your treatment plan?

Jojo: I stopped eating sugar and carbohydrates because Lyme disease feeds off those things. I took parasite medication and herbs on a daily basis. I lost 50 pounds as my body healed, and my friends and family were terrified I was just ruining my life because nobody believed I had Lyme disease. I’m so very thankful to Dr. Porter for saving my life. I’m not saying this approach is the only way to get healed, but I feel pretty lucky. I still have struggles, but they are nothing like before.

BSTQ: How do you spread awareness about Lyme disease?

Jojo: During my research, I read a book by Ally Hilfiger called Bite Me. This is the best book to give to friends and family who don’t understand what this disease is like. There is also a documentary called “The Quiet Epidemic.” I highly suggest both to people who want to know how to support a loved one who has been diagnosed with Lyme disease. I also started my Facebook page called Ticked Off to get the word out on the dangers of being around ticks and how to protect yourself.

BSTQ: What has this experience taught you?

Jojo: I have discovered I am self-reliant and strong; no matter how many tears and fits of rage I’ve had, I survived. Lyme disease creates a very lonely world, and it all starts with a tick. I lost many years of my life, and I especially missed being an active mom for my kids. I hope sharing my story will help others find healing.