Based on Super Amy’s assessment from my health history and a physical exam, she ordered a slew of blood tests. Moreover, she insisted that I get a lumbar puncture (LP) from the neurologist. While my symptoms were all “in line” with PANDAS and co-existing underlying infections, other disease processes could cause the neurological symptoms I described. Super Amy was shocked that Dr. Rookie had not ordered an LP during my first visit with him.
As I am writing this entry, I am still waiting for test results, particularly the ones that indicate the presence of a tick-borne illness or illnesses. Based on my symptoms, Super Amy decided to put me on several medications after the blood draw. First, she put me on an antibiotic because I clearly had an active sinus infection (one that I feel like I’ve had for months). She also put me on an antiviral because of the high EBV IgG’s. She felt like the levels indicated a very recent infection. Her hunch is that I do have some sort of tick borne illness. She added another antibiotic to begin treating that, too.
I started the antibiotics by taking the first dose at dinner time, about three weeks ago. Within a few hours, I woke up with chills. It felt like I had the flu all over again. What I learned is that this phenomena is called the Jarish-Herxheimer reaction. According to a quick search on the National Institutes of Health website, the reaction is described as a temporary worsening of symptoms following the initiation of treatment with antibiotics. It has been noted in the treatment of several kinds of infections, including syphilis, tuberculosis. . . and several tick-borne, Lyme-associated illnesses.
Last Saturday, I woke up with a full-onslaught return of feeling imbalanced and woozy. It still persists. I cannot drive. I walk around very carefully, ready to grab a piece of furniture or stair rail in case start to fall. I have two other weird symptoms: it feels like my right ear is leaking something all of the time. I even bought a infant-sized nasal aspirator to try to suck out the liquid. The other weird symptom is that I “hear” a faint swooshing sound in my head when I move my eyes to the right and left. I should probably tell Dr. Rookie about this. But can anyone blame me if I don’t want to?
The good news is that I have a lumbar puncture scheduled tomorrow. (Dr. Rookie is not performing the test; the medical institution I am going to is so large that they have a separate LP clinic!) If I am leaking cerebral spinal fluid (CSF), we will probably find that out. If I have anything else weird going on in my brain, the the CSF will probably reveal that, too.
Categories: The story continues