The Morning Light

As I sit here in the morning light, unable to sleep once again, I mull over the past few days’ events. The infectious disease doctor that first diagnosed my daughter with Borrelia miyamotoi eight years ago called from his personal cell phone after office hours, sounding more concerned than his usual calm demeanor. I instantly feel my heart begin to race. He has received her labs back and she is actively infected once again and also has an elevated, off-the-charts IgG for Covid which has him suspicious of a possible Covid infection when she was very sick last year. He wants to meet this week to discuss treatment.

Upon looking at the labs she is showing definite elevated positive IgG for miyamotoi, but her IgM is under the measurable threshold (AKA-NY gold standard) for a positive reading. So, as any mother must do her due diligence, I resume reading the most recent research.

Do not take any of this as medical advice and if you have suspected infection, please see an infectious disease doctor that is Lyme literate in coinfections also and advocate for yourself!

Apparently, if you have had a prior bacterial infection with miyamotoi, your immune response doesn’t always follow the conventional pattern many of us have known since the dawn of medicine. Researchers report prior infection makes reading IgM and IgG results much more complicated than traditional interpretation.

For laymen like myself (and untrained doctors) I give a Scooby Doo “HUUUUH?”

So, not only do lab results read differently than every other blood detected disease, current research suggests that Borrelia miyamotoi may alter its form under certain conditions and may persist in soft tissue in ways that could complicate and prolong treatment and a full recovery. Researchers are still working to understand exactly how these organisms survive.

Tricky, insidious little fuckers.

So, how are we sure? I’m not. The doctor is and I trust him. He has worked with Borrelia miyamotoi since it was first recognized in the United States, collaborating with the NIH to help patients that were not diagnosed correctly and were still experiencing chronic infection symptoms. He saved my daughter’s life eight years ago when she was walking backwards and all the other self-appointed “top doctors” were offering her anti anxiety medication. (I literally just rolled my eyes as I wrote that.)

Now that I have spoken with doctor once again, treatment is beginning again and there is trepidation and hope in our home. He is ordering amoxicillin three times per day to initiate treatment. The hope is this helps but he will begin to start the process of home IV for ceftriaxone. We are awaiting approval for a scan of her belly and also need some more bloodwork. The amount of blood this young woman has had drawn in the last two months and is still standing should be considered a medical miracle in itself.

There are so many moving pieces here, but the important thing is that we are still moving forward. We need to keep moving at a cautious, yet assured pace. Day by day we will take this as we did years ago with the hope this will be the last time. Unfortunately, with relapsing fever, the difficulty is in the name. Yet, we remain hopeful.

Hope, love, and peace to you and yours.