Lyme Update #19 *My Last Nerve*
Am I healing from Chronic Lyme Diseases? Who knows? Lyme doesn’t have a cure, only times of remission. There’s no way to plan for lingering health problems you will get, will or won’t recover from. Symptoms may go away over time, stay same or get worse. There’s no definitive test to gauge how your major organs are affected unless the damage is severe.
The symptoms I struggle with daily are pain, pain pain, lack of balance, some memory has returned looking like a Tommy Gun practice. There are days when I can remember for a few minutes instead of seconds. If you’ve read my post the past two years, you’ve seen the cognitive issues. I can’t recall the proper name of items, have no concept of time and don’t fully recognize inflection. After two years in bed, I started to relearn walking in mid March. Falling is a physical daily threat.
As my body gets physically stronger there are years of doctor and dentist appointments to catch up on. Before Lyme I started to develop Agoraphobia which has manifested to extreme levels anxiety leaving the house. Every doctors appointment is a challenge.
The Lyme doctor prescribed a drug in the same class as one I take for my mental illness. I became Psychotic, waiting a week to touch down in reality. While Psychotic I wanted to hurt people, I was ANGRY. The person I became was not me, yelling, screaming, almost going to jail, wanted to leave my husband, I was a maniac. Sleeping was not possible, I walked in a big circle inside the house 24/7. I had no filter, the words coming out of my mouth were hurtful causing scars.
I normally don’t take a drug until reading the prescribing information on FDA.gov. Feeling rough and not checking the FDA site for two weeks, I started taking the drug. An up to date med list was on file with the Lyme Clinic. As a patient we expect a base level of responsibility. One is to look at med chart to confirm no interactions happen. The step was skipped and a drug for Narcolepsy was called in. I made an emergency call to her making her aware of the grave error. The response, it works differently in the brain.
NOT. A simple search revealed the drug was indeed in the same category as D-Amphetamine. D-Aphetamine is an older drug in the category, new meds come along but taking at the same time can be a disaster. They took no accountability for the error. The message back days later was to stop taking. Fortunately my Psychiatrist jumped in to help, creating havoc with my stable meds. Months later he is still increasing dosages to get me stable.
As I mentioned I have to concept of time or how long the post are. This one is long, I’ll wrap it up. Bottom line that error was on my last nerve. I’m no longer a patient and flying solo as I put together a local team to manage my brokenness.
I appreciate you for overlooking mistakes, misused words and post that make no sense. I haven’t reached remission but continue to put one foot in front of another. Thanks for being my anchor. 🙂