Katy Neff Katy Neff’s Lyme Disease

First post: Sep 17, 2022 Latest post: Dec 29, 2022

I began feeling extreme fatigue and a significant increase in anxiety July 2021. Memory problems were evident but not interfering with my daily life. I was still able to function with activities of daily living. 
I started a new position as an RN for Prior Authorization for DME for an insurance company in January of 2022. I accepted this position as it seemed to be an “easy” job compared to my previous experiences working in the operating room and medical ICU at the University of MN. My past work experience was intense and required critical thinking and decision making and a lot of critical thinking…… it became evident that my brain was just not functioning correctly. I couldn’t grasp the concepts or remember anything that was presented or being taught during my orientation. This is also when my body seemed to turn on me drastically. It was painful to sit in a chair. Severe headaches began and I didn’t have the strength to hold my head up. Everything hurt. My spine, joints, skin, even my hair. I felt like my skin was splitting, and the numbness, tingling, and burning like fire began in my lower extremities. Anything that touched my skin felt like razor blades that were on fire. I continued to have extreme exhaustion and was unable to focus. I became frustrated and scared. Something is really wrong here. I went through 5 different mentors and wasn’t keeping up with my peers that started at the same time and even those that started after me. It became apparent that I was not able to perform even the simplest task of the job. Anxiety was severe. I was forced to put in my notice as my employer wouldn’t allow time off for medical appointments and I was falling further behind. 

This began the search for answers. By this time (April 2022) I was experiencing:

Extreme fatigue
Ankle and foot swelling 
Ear and throat pain
Heart racing palpitations
Joint pain
Bone pain
Skin splitting 
Tailbone pain
Neck pain
Severe Headaches
Cramping calves and contractures of feet
Floaters in my vision
Blurred vision 
Severe sensitivity to sound and light
Weakness from the waist down

—dx: plantar fasciitis and Achilles tendinitis 
Back of knees
Numb toes
Cold feet
Scalp pain
Hair loss
Absence of  taste and smell
Heavy head
Eyes tracking/ crossing when focusing 
Position changing- bending over and back up dizzy
Move head too fast nausea and slow eyes
Standing or sitting upright painful
Laying down helpful
Fatigue but can’t sleep
Brain fog
Extreme short term memory loss
Severe anxiety and treatment resistant depression 
Heat intolerance 

My primary care Nurse Practitioner was worried and made a differential diagnosis of Multiple Sclerosis. Labs we’re drawn and an MRI of my brain was ordered. There were many abnormalities in my lab work. The MRI showed….with the possibility of Lyme.

Lyme results came back positive and I was referred to Neurology, Rheumatology, Orthopedics, and Podiatry. Of which no one had answers. I have now been passed off to the pain clinic to deal with the pain with Norco, Flexeril, and Lyrica. Well are now “medicating the medications” and not treating the underlying cause. These medications keep the pain from reaching a severe state but come with the additional side effects of increased fatigue, constipation, sedation, muscle twitching (tics) and a general “high” sensation. 

I am no longer able to work, walk, drive, sit or stand for extended periods of time, or make decisions on my own. My mental health has deteriorated to a crisis level. I am grieving the loss of who I was just a year ago. Thankfully my daughter and I live with my parents and they are able to care for us. I desperately want my life back. I want my body back. I want my mind back. I NEED to heal. 

I was referred to a Nutrition Response Practitioner who identified Lyme and mold toxicity. We began multiple supplements to attempt to treat and eradicate the Lyme but I could not tolerate it. I have stopped the supplements as I believe they were interacting with my prescription medications. 

I have battled severe anxiety and treatment resistant depression for 30 years. I question if I have been infected with Lyme since then as only recently have I been tested and found positive.  

Some of the same symptoms (severe anxiety, confusion, muscle weakness, brain fog) presented in 2013 and Multiple Sclerosis was a concern ….MRI of my brain was “abnormal” but neurology did not think it was MS and dismissed me.