Happy Progress

Almost two solid weeks on Doxycycline twice a day. With support from the world’s most amazing psychiatrist, infectious disease doctor, and endocrinologist I am so beyond happy to report steadily increasing progress.

Blood glucose is completely normal once again. There have been no dramatic dips nor dizziness to speak of. My daughter needs to email her endocrinologist all measured glucose levels and detailed diet along with any current symptoms. She has another follow up scheduled with him in a few weeks, which she will attend, but we are happy to say there is nothing further to discuss. He was so wonderful and supportive and we are so pleased to have him on her team if she should ever need him again.

Heart rate has lowered significantly, but still slightly on the higher side. Being that she was a runner prior to this, we would like to try to get her health back to its original state. If that is impossible at this point, we would like to get as close to normal as we possibly can. She was prescribed a beta blocker (multiple), but we are being referred to a new cardiologist by her psychiatrist as her last cardiologist was abusive and arrogant. There also appears to be changes on her two echos, comparatively speaking, and they need to be looked at. I need to be assured there is no permanent cardiac involvement at this point.

Psychologically, my daughter has improved steadily in leaps and bounds. At the height of her decline she showed depersonalization, Capgras syndrome, exercise and heat intolerance which brought on severe psychiatric symptoms, OCD with harm subtype, severe anxiety, and depression. How much of the anxiety and depression were appropriate to the situation due to the stress and trauma she endured is still being debated. At her very worst, she didn’t look like herself. There was a darkness in her eyes and a disconnect of her spirit. To say, as her mother, I was heartbroken and terrified this could not be reversed since it took so much time to diagnose her correctly this time. The conflicting doctors’ diagnoses and who was going to treat her were tripping us up and only delayed treatment. It started to feel eerily as if we were playing a game of Russian roulette with my daughter’s life. I pulled the trigger because of what I knew. I trusted the doctor that saved my daughter last time and trusted he understood the limited research. He was right again.

To see her reemerging is a beautiful thing, though I know in my heart she will never be the same after this. The things she experienced having lost control of her mind and body is beyond anything any of us have ever experienced. It is this loss of control that lingers. This sort of trauma needs prolonged therapy and work to help the healing.

Her appetite is back and she is requesting favorites again! She lost anywhere from six to eight pounds over the course of a few months, which is a significant amount for someone small-framed and standing at just over five feet. We know much of that loss is muscle since it was lost in such a short period of time and have begun with five minute walks on the treadmill. Baby steps.

My daughter started sleeping on her own again in her own bed three nights ago. At 23 years old, losing her autonomy was a crushing loss to her, which she is slowly finding once again.

The onset seemed to happen overnight. Symptoms made worse by delay in treatment. This insidious bacterium appeared to affect her brain, heart, and endocrine system.

She was never simply a collection of disconnected diagnoses of POTS, hypoglycemia, tachycardia, and psych changes.

She has Borrelia miyamotoi. And she’ll always have me.