Up until 2014 I had been riding a wave of treatment highs but unknowingly I began to creep up to an invisible wall. One that my Lyme physician had never informed me off. This was the line where "long-term" treatment became a liability and despite steadily improving, denying treatment was seen fit to apply.
I repeatedly brought my need for more aggressive treatment to the forefront of my discussions with said physician. I was always told "Eventually.", even while heading into a downward spiral.
For a year I was receiving excellent care with the help of a truly amazing nurse practitioner. Later I found out her views on Lyme were too open-minded for my doctor's office. She left and attempted to find a replacement of like-mind. Her choice ended up being an opinionless puppet.
My Lyme disease was previously treated improperly for eight months by the head physician before my amazing year with my original nurse practitioner. A weak medication better-suited for acute infection was prescribed and then Lyme was buried and forgotten.
Babesiosis was then treated for two years with steady improvement. Just as Bartonella treatment was beginning and Lyme treatment was on the horizon they pulled the plug. Not for any reason but to stop my treatment, regardless of my state of health. I was told my liver enzymes were too elevated, which turned out to be an outright lie. I was instructed to have absolutely normal test results or no treatment, a purposeful roadblock to prevent further treatment indefinitely.
I was also told I needed to get retested for Lyme to see if I was even still infected. It wasn't ever treated properly to begin with! How can something be cured when nothing was done to fix the problem in the first place?
This new sentiment was only further cemented into reality by my most recent interactions with my physician's office. The overseeing nurse projected an irate and condescending attitude. My case was minimized and openly referred to as "Not a big concern. If your so worried go see a specialist!". The phone conversation ended there and was my last.
A year of my life was spent being pulled on and off meds while I was unknowingly nosediving into treacherous territory. My puppet nurse practitioner knew this and ignored my warnings, blaming Post-Lyme or psychiatric illness. No brain scans or testing whatsoever were done. Just silence.
This has left me at a crossroads. During the past year my mental faculties have declined, starting off slowly. Vision distortion was the first red flag, despite having healthy eyes. A neurological source was suggested.
My mood became more frazzled and I broke down easily, displaying erratic behavior and poor social skills. Then in the early fall my memory and perception began to sharply decline.
Eight months later and I have begun to have trouble recognizing people close to me. I still know who they are but everything feels strange. Nothing feels familiar anymore and my adjustment time to change is greatly diminished. My ability to care for myself is also getting weaker. It's like my life is a painting and I am slowly watching threads of color fall away.
Amid this my husband is also battling Lyme and struggling to get treatment.
We are at a crossroads and striving to overcome. All we can do is hope for a better tomorrow and embrace what victories we can, taking this journey day by day, because this life is all we have.
Until we see you again.....