“We can’t find anything wrong.”
“The labs are normal.”
“Has she seen a therapist?”
“There isn’t any other medication to try.”
“One headache for an entire year?”
For two years, we have been in and out of specialists’ offices searching for answers to why our 15-year-old daughter feels so ill all the time. Answers for the severe joint pain, an unrelenting headache that left her bedridden some days, the nausea and stomach pain, stiff and sore neck, the visual disturbance, the cognitive fog…
For two years, I suggested a trial of treatment for Lyme disease. There was no rash that I can recall-or a specific incident that I can pinpoint as the moment that this all began. And a negative Western Blot test stops doctors in their tracks. However, symptom-wise, she has every one. See her Lyme Bingo Card above. Despite bringing in numerous scholarly articles and symptom lists, watching her fail multiple medications, interventions, “normal” evaluations, and diagnostic testing, we got nowhere fast.
Yes, we tried holistic treatments, chiropractors, acupuncture, massage, aromatherapy. No luck.
Her knees blew up last week. While she had been coping with joint pain and swelling for many years, never had she dealt with anything to this degree. Her right knee was affected worse than her left, but they were both affected. A visit to an orthopedic urgent care and a few x-rays later showed her knees were “normal.” We’ve grown to loathe that word. The provider said she could not drain the fluid because it was not in the joints, but instead, was in the soft tissue surrounding the joints. The pain and swelling were so severe that she was on crutches for several days.
It was at that point that, we decided to track down a physician who specializes in diagnosis and treatment of Lyme disease to evaluate our daughter. We traveled to a doctor just outside of NYC for an appointment. The downside of seeing one of these specialists is that many do not take medical insurance. The up side? For the first time, she felt like someone really heard her and understood what she was going through. Someone who knew exactly where she had pain and understood the impact this has had on her life. We are now starting oral antibiotic treatment and, for the first time in a long time, are hopeful that we might have an answer, a direction. Cautious optimism…we’ll take that for now.