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.

 

16 comments

    1. It’s not as cool or kinky as it sounds. It’s basically an EKG machine you wear so the doctor can listen to your heart for longer periods of time. I had to wear one 11 days one time, that was a hassle. Hope all is well with you. You sound happy. 🙂

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        1. Hi G-
          There are times I think it’s all overwhelming, then I think of all the people including yourself who as difficult or more journeys. I had a brief pity party when the diagnosis came, then you have to move forward. The outpouring of support fills by heart with joy. Once I start antibiotic therapy, I may have another moment of pity. Then you go on, keep blogging,living when you’re not vomiting. Sounds fun doesn’t it! Hugs. 🙂

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  1. It sounds like you are in the right hands, with a a very THOROUGH doctor. The tests will be done and over, remember to b-r-e-a-t-h-e- to try to maintain inner peace. I pray you find the right combination of things to make you feel better. The answers are out there; don’t give up! And remember to always, always, stick up for yourself… if something is on your mind, say it. If something doesn’t feel right, follow your instincts. Believe in YOU. It’s the most power anyone can ever have is to believe in themselves. Thinking of you, believing in you – Deb

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    1. Deb,

      Sounds like you’ve been down this path. I appreciate your kind words and power talk. Speaking up is not a problem, sometimes I need to let the doctor do his job. If someone has the right personality we can get into a joking jab. Being Treatment Resistant Bipolar I learned a long time ago, you do speak up or your health controls you. I really enjoyed the Bird of Paradise piece. It’s hard to get old, they make me think of Hawaii. Have a great day. Hope you will come by often. 🙂

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  2. With my schedule lately, 30 minutes laying with my head down, I’d be asleep in 30 seconds, lol! You can do this. You are strong. And I’m sorry it is a path you have to experience. I’m sure your documentation will help many, many others though. SUCKA hug 🙂

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    1. So SUCKA can be used anywhere! I just have to remember what it stands for. My short term memory is hosed from the ECT treatments. I have to ask my husband daily the same questions. I hate the dependence! Just put me in a diaper. 😦

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