Amy's Biting Back

Summer of 1992, was just like any other morning getting ready for school. A junior in high school, 17 years old , thinking i was 25. Dreaming of going to college and having a family, loved the outdoors, fishing, hunting with my grandpa. Loved nature and animals, liked to take walks in the field behind my home with my dog. I was in gymnastics, climbed trees, swinging in a tire swing on a big tree outside my yard.

Well that one morning getting ready for school, i was washing my hair over the tub and noticed my glands in back of my neck at the base of my skull were really swollen and tender. I just blowed this off as nothing. Then i went to school one day a little later on and went to open my locker (like i normally did 5 times a day) and i couldn't remember my locker combination , i then started to have a panic attack, i was scared , why was this happening.

I started forgetting other things also and then my neck and head started giving me problems.  I described to my mom that my head felt like it was popping and would burn in the top of my head on the left side. Then one morning i got up (or attempted to ) and fell to the ground, my neck was stiff, had a headache and fever, and weak in my legs. This was the beginning of my Lyme disease struggle.

My mom decided to take me to the ER, the doctor which was a family doc, asked me and mom if we had noticed a tick on me over the last couple weeks or months. Well Yes , just a few months before we recalled a tick crawling down my neck the size of the end of ink pen. We flushed him and never thought nothing it, ticks are very common in Southern Illinois.

I've always loved fishing and hunting, so it was nothing to come home covered in them. The doctor then told me and mom that i had positive Western Blot, and he sent me to a Lyme Clinic in Evansville Indiana ( which is no longer there). I took the 3 weeks of Doxy and repeated WB and it was negative. Cured? We thought so , was just told i couldn't ever give blood. Never had a bullseye rash at bite site but did have one years later on my face, that was a bullseye.

Shortly after that i began to hurt constantly, in all joints, mostly my neck and lower back which i blamed on having kids and working years as a CNA in a nursing home. Forgot a lot of simple things, and had a hard time concentrating, which i just blamed on ditziness (i'm blonde). haha  Then i started having heart issues, heart palps and skipped so hard it would take my breath, and then was dx'd as having mitral valve prolapse . 

I was put on a beta blocker until it dropped my blood pressure too low, so i just learned to deal with the palps and racing. Then soon started having problems with my left ankle and foot. Deformity and pain, had it x-rayed and was told i had tarpal tunnel, plantar facitis and a deformity in ankle(bone stuck out the side) and flat footed. Felt like i was stepping on lil pins, and pain up my leg.

Went to Orthopedic surgeon in Illinois, i told him about my overall pains throughout my body , at all joints and that i used to have Lyme disease back in 92. He suggested i go see a LLMD soon and that he thought i never got rid of it or it relapsed . He told me the tests were not accurate. I never even knew it could relapse, it would explain all my health issues for the last 12 years. Thought i was cured after 3 weeks of Doxy, damn was i dead wrong.

He recommended a LLMD. Well i couldn't find one for the longest time and just seen regular doctors, who said said i'm just depressed, hypochondriac, wanting attention...and throw the antidepressants at you like candy. Yea i was depressed, i'm young and hurting like a 80 year old , wouldn't you be depressed too? 

Duh! I started thinking about the years of health issues and how much pain that i blamed on other things. And how doctors treated me. Wish they could feel the pain i did. Over the years, here is some of my symptoms and dx's : Pain ...Neck (2 herniated discs) Left shoulder pain and numbness(Bursitis) Lower lumbar(central herniated disc) Left ankle and foot(Tarpal Tunnel, Plantar Facitis, a deformity , a fracture and flat feet) Legs Pulsate and twithch after walking long distances and legs go numb after sitting very longs.  All joints hurt , pop , and crack, knots the size of golf balls in my shoulders.  I've never been in a car accident or anything traumatic.   Neuro: ...Get lost easily , no sense of directions, lose concentration on a task, can't multitask at all. Headaches, burning sensations from neck to top of head. See things out of corner of my eyes, floaties in both eyes. Light sensitive at night, cars headlights behind me esp. Extremely tired , not always sleepy just physically exhausted, like i ran a marathon.  Heart:  Mitral Valve Prolapse and heart palps and beats so hard , takes my breath and could feel it in my head at night on my pillow and hear it.

Just got health insurance through my job as a security officer, and with the help and push of my friend Dottie i got the courage to go see my LLMD in Missouri  to see what treatment was best for me after no treatment all these years. I seen him 2 years ago and was on Amoxicillin 3000mg a day , and i got impatient, went through a bad divorce and moved to Kentucky with my wonderful boyfriend and didn't follow up with my health .

Now i'm in so much pain and just want to be normal again and feel 31 instead of 81. Dr. M asked me yesterday, when was the last time i felt normal and i said i can't remember doc, a long time , before this nasty disease. I don't want to be in a wheelchair at 40 years old, i've got so much i want to do and enjoy my kids again and my boyfriend and family. I had to let my kids stay in Illinois for my family to care for cause i have panic attacks and freak out easily when my kids are sick and get nervous with loud noises and yelling.

My mom is wonderful and supportive of me, never could make it with out her help, i love you mom!  My boyfriend is great, he is caring and supportive of my disease and is reading to learn about Lyme and asks the doctor questions , he asked Dr. M yesterday, "will she ever be cured" doc said "no" but i will help her from hurting so much. I love you Lamar and thank God for you everyday, its going to be a tough road ahead but i know he will be right beside me. I've met many wonderful people who are suffering with me, my fellow Lymies, Dottie, Gayle, Jeanie and many others who have gave support , advice and just to rant to. No one really knows how we feel but us. Together we can do things to help us through this struggle.

My LLMD put me on Minocin 200mg a day, so i really hope this treatment will help with this pain and make me feel half way normal again. I'm hopeful and believe in him. I see a pain specialist next week and hopefully won't treat me as a "seeker" and relieve me of this pain. We will see. I want others aware of the serious of this disease and what to do to protect themselves and loved ones.

I hope to get a support group started soon  with resources for others to get easily to help them in this struggle with dealing with Lyme disease. We need each other and our loved ones support to fight against this. We can do it...Thank you everyone for reading this and feel free to email me anytime. I have faith, and i'm a soldier as i tell my boyfriend.

May God bless us with being pain free and to start feeling normal again soon.    

Amy Garrison