Thursday, December 12, 2013

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 

2 comments:

  1. My dear Bekah, I had no idea you suffered so. I think your joyful personality has contributed to your perseverance so far. God has such great plans for you. Thank you for sharing. And please know that you are now one of the top priorities on my prayer list. May the Lord continue to bless you & give you strength.
    Love, Lora Strang

    "The Lord bless you and keep you; The Lord make His face shine upon you, And be gracious to you; The Lord lift up His countenance upon you, And give you peace." .... Numbers 6:24-26

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  2. Thank you, Lora :) that really means a lot to me!

    ReplyDelete