Documenting Long Complex Journey With Lyme Disease Journal Entry One
Scheduling probiotics, medicine and supplements is a challenge. With probiotics you have to wait before eating or taking meds, then juggle of what goes on empty stomach, which with food. Can’t forget the shot to stomach three days a week. Adjusting the new meds has not been fun, I’m stoned out of my mind the bulk of day, then massive headache moves in, then time to get stoned again before bed with the headache. My gripe, it’s not a good stoned, its 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, women stoned out of her mind trying to maneuver a cane while walking. I had my first appointment with new Cardiologist yesterday, he has Lyme Disease experience with a specialty in blood flow. He is one of three doctor’s 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 effect blood flow in the heart then out the entire body. Then general exam with discussion on 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, put up to my chest anytime I feel dizzy, cardiac pain, trouble breathing, ect, ect. I leave with the schedule of test for next week which take 3 1/2 hours, when to pick up medicine for test and the great news to show up fasting. A couple of test I’ve done 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 myself a shot. They may see a panic attack instead, that’s a lot of time without control and no way to escape.
Q Sweat Test-Study of Sudomotor response assisting in diagnosis of small fiber neuropathy’s
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 hearts ability to deliver blood to the body
Tilt Table with QST-Assesses sensory neuropathy’s
Metabolic Stress Test
I have blood work from last week to complete, 20 plus vials gets me as excited as the stool sample that requires freezing! I’m now 1 hour 45 minutes before the monitor comes off. Then time for a shot and hand full of pills. Are we having fun yet?
My heart and soul goes 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.
PS….Why is there a photo of my desk? I can’t stand a messy desk, I can’t work with the chaos.