Loss of sleep each night due to new symptoms: 7 out of 10. Pain and inflammation levels last month: 8 out of 10. Frustration with taking Plaquenil and Sulfasalazine for a year with no results: 10 out of 10.
It’s been a year since finding a new rheumatologist. Last week was my latest 3 month appointment and I was dreading it. It’s been a month since I tapered completely off Prednisone and a few weeks after having a tongue biopsy due to ulcers I believe were side effects from the medications. While the biopsy results came back negative I closed the door on another dead end. Meanwhile, my symptoms grew worse. I started experiencing things I hadn’t felt during the entire time I’ve been stickered with inflammatory arthritis.
Every night I began waking up every hour or two, finding my knees and my entire back in so much pain it was hard to roll over. Sleeping on my side wasn’t even an option anymore. Mild fevers each night and chills all day became the norm. Headaches behind my eyes, neck stiffness, flu-like aches all over, night sweats, constipation, muscle twitches, extreme fatigue, muscle weakness and jaw pain also became a regular occurrence.
I was at a crossroads. I was about to set up an appointment with my primary care doctor but had an upcoming visit with the rheumatologist in only a week so it seemed logical to wait and see what he had to say. That same week, after some investigating of my symptoms, I couldn’t help but pursue Lyme disease as a possibility. I don’t recall a tick bite except for when I was young, but my symptoms all matched up. And after watching the documentary Under Our Skin a few weeks ago, I was convinced that cases of chronic Lyme are serious and growing quickly.
So I set out to find out more information about chronic Lyme disease and how to get tested. Last year I did get tested via my family doc through Mayo Clinic with a negative result. But I quickly learned that this test can be very unreliable and if your result is negative, you can go no further with testing. With many referrals for testing methods beyond the standard ELISA, which is what most hospitals and clinics use, I set out to find a Lyme Literate Medical Doctor (LLMD). I knew this was the only way to get tested and be sure. It wasn’t long before a list of friends helped me find a LLMD nearby.
Surprisingly, the LLMD had an opening appear in his schedule for the same week so I jumped at the chance to meet with him and discuss my symptoms. I was so excited. Perhaps mostly because the visit with the rheumatologist earlier that week didn’t go so well. Instead of discussing antibiotic therapy as read in The New Arthritis Breakthrough I left the office only with more brochures for Humira, Simponi, Enbrel and discouraging news from the doctor that I may need biologics for the rest of my life. To make matters worse, I was given word that I needed to schedule a colonoscopy to check for Chron’s disease and a CT scan to rule out lymphoma.
Back to the excitement. Even though testing for chronic lyme can be controversial and usually frowned on by insurance companies, it seemed worth it to at least get tested. It was a bit expensive, but it’s either that or tens of thousands each year spent on a biologic bandaid. Furthermore, I decided to get a blood test for coinfections at the same time in case Lyme isn’t the answer. Infections like babesiosis, ehrlichiosis or bartonella can cause some serious complications and might even be the main reason for my symptoms.
I’ve been praying for how to get through these next few weeks of waiting for my test results to come back. And out of nowhere, God gives answers! Not only do I get to meet with a knowledgeable LLMD, but another possible treatment has just opened up before my eyes. With the help of some helpful nutrition, I’m off to start an intense natural detox protocol! More to come in the next post…