Documenting Long Complex Journey With Lyme Disease Journal Entry One

I was reminded today that I had Lyme and thought I would share with you the first post I wrote in 2014.

It’s been a long time since this first Lyme blog, I found it interesting and naive. I hope you enjoy reading. Maybe you’re at the beginning of your Lyme journey. I’m always here for you. M

Scheduling probiotics, medicine, and supplements is a challenge. With probiotics, you have to wait before eating or taking meds, then juggle what goes on an empty stomach with food. Can’t forget the shot to the stomach three days a week. Adjusting the new meds has not been fun, I’ve been stoned out of my mind the bulk of the day, then a massive headache moves in, then time to get stoned again before bed with the headache.

My gripe is it’s not being stoned, it’s brain fog with the floor moving under your feet. David has to take me to appointments since I can’t drive. I’m a sight to see, a woman, stoned out of her mind trying to maneuver a cane while walking.

I had my first appointment with a new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctors who will manage my Lyme journey. The RN performed an EKG, then his Assistant reviewed my medical history, asking what seemed like 1000 questions.

The doctor is next, we talk about how Lyme can affect blood flow in the heart and the entire body. The general exam with discussion on the test he has ordered. I left wearing a Holter Monitor which comes off at 2:45 PM today. I push a button on a small device, and put it up to my chest anytime I feel dizzy, have cardiac pain, trouble breathing, etc, etc.

I leave with the schedule of tests for next week which takes 3 1/2 hours when to pick up medicine for tests and the great news is to show up fasting. A couple of tests I’ve done it multiple times due to my heart condition. The Tilt Test is what it sounds like, the table moves to a head-down position for 30 minutes. The test is more frightening than giving me a shot. They may see a panic attack instead, that’s a lot of time without control and no way to escape.

Echo Cardiogram

Q Sweat Test-Study of Sudomotor response assisting in the diagnosis of small fiber neuropathy

Tilt Table with Trans Cranial Doppler monitors mean blood flow velocity

Tilt Table with ANSAR-Determines how well Autonomic Nervous System is functioning

Tilt Table with BIOZ-Determines the heart’s ability to deliver blood to the body

Tilt Table with QST-Assesses sensory neuropathy

Metabolic Stress Test

Lipid Profile

I have blood work from last week to complete, 20 plus vials get me as excited until she says the stool sample requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. The time for a shot and hand full of pills. Are we having fun yet?

My heart and soul go out to those struggling with Lyme, it’s a long complicated journey. I know you’re strong enough to fight the virus in your body, though it may not feel like it today. I look to the survivors before me for support during my journey. Let’s all pray for each other, that’s what support is about.



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