How I Got Here

About two and a half months ago I was diagnosed with Chronic Lyme Disease.  I either contracted this disease when I was 6 months old or it was passed down from my mom while she was pregnant.  I have had crazy symptoms, been to the doctors A LOT and have been diagnosed incorrectly for about 22 and a half years.  Because of what I have been through and am going through, I want people to know my story.  I'm the furthest thing from a good writer (so bear with me), but I feel like my story is important because it is so many other people's story.  I want people to know the truth about Lyme Disease, know the severity of it, and know what we, Lymies, go through on a daily basis.  

I had no idea that this world of Lyme  existed until I was diagnosed and started doing accurate research (there is so much crap out there).  Like most people, I was blind to the truth. I thought you had to have a bull's-eye rash. I thought you had to get bit by a tick. I thought that 2 weeks of Doxycycline would cure it. I thought that it only occurred in places like Massachusetts and the south. Boy, was I wrong.  

I guess I'll start from the beginning. This my story EXTREMELY condensed.  Later I will go deeper and explain things better.  But just the overview is a lot... 

On my first birthday I developed a rash all over my body.  My parents took me to the hospital and after 5 different doctors looked at me, they decided it was an allergic reaction to the antibiotic I was on.  I had been taking Penicillin for an ear infection and some other pains.  To stop the rash they gave me steroids (that's the last thing that should be put in a Lymie's body). Now, looking back at pictures of the rash, my mom and I realized that it was the typical bull's-eye rash related to Lyme disease.

When I was two, I was diagnosed with mono.  My blood work came back negative, but the doctor said I was too young to have positive blood work and all the symptoms matched. 

All throughout Elementary School I had yeast infections and the doctors said it was because of the bubbles in the bath and the chlorine in the pool water.  The summer before 5th grade, I had horrible pain in my left ear.  For a full year, I saw doctor after doctor for an answer to my ear pain.  Finally, I saw a specialist who said I talked too much.  Her conclusion?  For me to lay on my bed for 30 min each day without talking. The pain still didn't go away.  I also started having insomnia in Elementary School and was told I was too active and didn't know how to turn off my brain. I started seeing floaters and was told it was gel like substance behind both my eyes and, basically, I better get used to it.  In Elementary School, the headaches started, and they haven't stopped since. Looking back now, I can't remember a day I didn't have a headache since the 3rd grade.  

Middle School started and the ear pain, insomnia, and yeast infections continued.  I also started experiencing  joint pain, especially in my knees and shoulders. The doctor said it was because I had loose joints and it would go away when I was 18.  WHELP- it didn't.  Near the end of Middle School I started my menstrual cycle and thought I was dying.  It was irregular, miserable, and when it came, I locked myself up and cried.  To top it all off, I got hyperhidrosis (basically when you sweat for no reason.  I had to say goodbye to bright colored shirts).  

When High School started, my symptoms included: headaches everyday, constant joint pain, miserable periods, yeast infections, insomnia, and ear/jaw pain, muscle pain, tightness/heaviness in my chest, heart pain, random rashes (would last a couple hours to a few months), feeling like I had the flu, and fatigue.  I was diagnosed with mono three more times in High School.  The blood work always came back negative.

The summer before my junior year, I went on a mission trip to Uganda.  I took Doxycycline when I was there so that I wouldn't get malaria. After 28 days, as we were flying home, I started to get really sick.  I had HORRIBLE flu like symptoms, unimaginable fever, and a migraine. When we finally got home I thought I was going to die. I went from turning ice blue with 10 blankets on me to naked and sweating.  We thought it was malaria. After a few hours in the ER I was completely fine.  It wasn't malaria- the doxy was doing it's job by killing the Lyme Disease and I was herxing (see side "And That Means"). 

Two years later I went back to Uganda and was put on Doxycycline again and got extremely sick.  I spent the second half of the the trip (about 2 weeks) in bed thinking I had heat strokes.  Nope, just herxing again. 

Between the ages of 18-22 I just got worse and worse.  There were countless visits to the E.R and Urgent Care, I missed so much school, had to drop out of college, couldn't work full-time, and ended up not being able to work at all. 
After High School,  I started seeing a nutritionist that treated me for parasites, yeast infections, bacterial and viral infections, and maintain health in specific organs. But I was never fully healthy.

By that time, my constant symptoms were: headaches, migraines, joint pain, muscle pain, back pain, neck pain, ear/jaw pain, trembling, floaters, chest pain/tightness, heart pain, inflamed spleen, fatigue, insomnia, weakness, feet and hands burning and tingling, horrible periods, rashes, anxiety attacks,  and over-the-top mood swings.  
  
I stopped seeing my nutritionist when I was 21 and started looking for an answer with western doctors again.  Between December 2012 and March 2013 I was passed around to 10 different doctors, and saw each of them a few times.  I had a colonoscopy, an endoscopy, a CT scan, a MRI, an ultra sound, injections to numb nerves, and was put on a lot of pain medicine.  I was finally sent to a neurologist who said all he could do for me was diagnose me with fibromyalgia (leading to MS within 7 years), chronic fatigue syndrome, and rheumatoid arthritis. He could give me pain medicine that could make me fat and grumpy and also an anti-depressant to counteract the fat and grumpy.  But he said I was too young and joyful and to keep looking.

This next part is super long so I'll condense it for now.... Basically, I took this information back to my Nutritionist and between her and a lot of other people God placed in my path, I decided to start looking for an LLMD (See side "And That Means").  Every symptom matched and all of my mis-diagnosis (mono, malaria, Fibro, CFS, rheumatoid arthritis, possible lupus and MS) and are easily mistaken for Chronic Lyme Disease.  I had to diagnose myself.  

After a couple months of looking for a LLMD and waiting a few more months on a waiting list I finally got in to see my current doctor and am being treated CORRECTLY!   I'm almost 3 months into treatment.  It's been the most miserable 3 months of my life- but I keep my eyes on the prize.

Energy Expelled to write this post: 3 weeks for motivation. 3 hours to type. Sleeping till 1pm the next day. And fingers tightening up. 

- Hope does not disappoint