Our 16 year old has Lyme …
That sounds pretty simple to say. It’s gut-wrenching when you have to say it about your own child.
Lyme is an insidious disease that mimics other conditions and masks itself. Sara was treated for several things before an astute Physicians Assistant in our local Emergency Room chose to have Sara tested for Lyme on a whim. I am especially grateful to that woman.
This post is going to be a brief history of Sara’s Lyme. Future posts will include what her current treatment regimen is, as well as informational sources and more.
Autumn 2009 ~ Sara discovered a tick at her waistline. We had a guest in our home and she didn’t want to cause a stir, so she had her sister help to remove the tick. The site of the bite continued to be irritated and seemed to take several years to heal. It still turns red and itches today, 7 years later.
Intervening Years ~ Sara has consistent joint pain that is worse in cold weather. Also she is our most active child, but she often chooses not to run or ride a bike due to joint pain. Damp cold is worse than dry cold.
March 29, 2016 ~ Sara went to the Walk-In Clinic in our community due to a two week old tick bite that presented a rash after one week, then became a distinct bulls-eye rash. She was given a course of Doxycycline and no follow up.
September 14, 2016 ~ Sara had no known tick bite. A few days earlier she presented with large patches of hives on her lower legs. On the morning of September 14, she awoke with a badly swollen upper lip. Due to the hives and the proximity of the swelling to her airway, we took her to Urgent Care. Inexplicably the Physicians Assistant ordered a Western Blot Lyme test. The ER doctor prescribed Prednisone for 5 days and Doxycycline for 10 days. The hives resolved completely the day after the steroids ran out.
Results of the Western Blot were positive. No additional treatment was given.
NOTE: Sara’s joint pain moved to her hands and ankles following the 9/14/16 round of antibiotics.
October 5, 2016 ~ Sara had a follow-up appointment with our family doctor. We covered Sara’s history going back to the original known tick bite. Dr. H felt that this case warranted a referral to the Infectious Disease clinic in LaCrosse. NOTE: Blood panels were done, including a repeat of the Western Blot.
October 10, 2016 ~ Sara was scheduled to see I.D. in LaCrosse. We received a phone call canceling that appointment. The doctor is not permitted to see pediatric patients. Sara must go to Pediatric I.D. at Mayo in Rochester, MN; we are to await a call with the date and time of the appointment.
October 21, 2016 ~ Sara saw our family physician in Tomah. Sara’s blood panels came back and were encouraging. There is no sign of RA. Liver and kidney panels were normal. She is slightly anemic. Insurance is refusing the referral to Mayo until Sara sees a pediatrician in LaCrosse who will then refer to I.D. in Rochester. Yes, that is the opposite message we were given on October 10.
However, Dr. H was quite concerned that Sara’s Western Blot came back positive for an acute infection once again. This should NOT happen since she just finished a round of Doxycycline. Dr. H offered to prescribe 28 days of antibiotics right away. I requested that we put that off, give lots of probiotics, and await the peds appointment.
October 24, 2016 ~ The final decision was that Sara would see a pediatrician in LaCrosse that would then refer her to a pediatrician in the I.D. field in Rochester. However, after doing some research into how Mayo handles Lyme patients, we did not feel that she would receive ideal care there. Instead we were referred to a “Lyme Literate Medical Doctor”, commonly referred to as LLMD in shorthand developed by Lyme sufferers.
NOTE: Our local doctor, Dr. H, prescribed the 28 day Doxycycline Rx for Sara to take while waiting for her appointment with the LLMD.
January 30, 2017 ~ Sara had her first appointment with the LLMD in southwest Wisconsin. We covered her history and and he looked over her various test results. He gave her a regimen to follow for three months. We were not able to start this immediately (financial constraints and moving). Her treatment begins in early July 2017.
NOTE: This post will be updated regularly and re-published to keep a running storyline of Sara’s history. This will make is easier for me to print and provide to physicians in the future.
Original Publication Date: July 3, 2017