My Story

I wrote this in the Fall of 2012 explaining why we we're doing the fundraisers. 

In her words” 

I never imagined my life and world as I had known it would take a turn for the worst, very suddenly and very fast. You never know what life will bring. It can happen suddenly and you never see it coming. Life is so fragile. Cherish it!

At its worst, I was not able to move. It had got so bad that my husband Kent had to move me and carry me for every little thing. When he did move me and help me stand up I would scream in pain. I have never been in so much excruciating pain in my entire life. The pain was 10 times worse at nights. The only thing I can think of to compare it to is, child-birth. I would happily go through natural child-birth again than endure this pain. Kent and I have never heard such tortured cries come out of me when I was moved or carried. The pain-killer and narcotics did not cut the pain at all. I wasn’t able to open my mouth to eat, I couldn’t close my hands they were stuck out straight and each finger was crooked and swollen, I couldn’t touch my face or itch it. I was pretty much planted in bed. My limbs would not move. It’s like being tied down to a bed and being held down with ropes. And there is nothing you can do about it. It is sort of claustrophobic feeling. I panicked at times when I got that claustrophobic feeling. I would have to calm myself down and tell myself I was okay. I was told I was gaunt and pale. My mom said I looked like a holocaust victim. My parents began to visit often and were scared. For two months straight at its worst I was so dependent upon Kent he slept up in the bonus room with me in a recliner each night so he could be by my side in the hospital bed. When I had fevers and night sweats he was there to help me take the blankets off, because I could not lift even a thin sheet or move my hands to do anything to help myself. When I got cold he was there to put the blankets on. When I lay there in pain he was there and gave me ibuprofen.

I was dying and the realization of it set in. Doctors confirmed my fears. Hospice care and the people around me were telling me I was dying. I didn’t want to believe it or accept that was my fate. I made up my mind and decided I was determined to fight to live for my family. I had a picture of my family on my ceiling so I could look up at them each day. It helped me find that renewed hope, determination, and fight to live. I was bed ridden for a year.

I have a very crippling disease. Lyme’s disease which caused and manifested as Rheumatoid Arthritis.

Back in February I found a German doctor who has helped me and has literally saved my life. My recovery and treatment is very miraculous. It is a daily battle that I never imagined would be soooo exhilarating and hard at the same time. I call it a roller coaster of up and down days. I am currently rebuilding all the atrophied muscles in my body. At times I am still in a wheel chair, but I am not going to let that define me of who I am. I can walk short distances now. I don’t walk normal yet, but I am blessed to be walking somewhat again.

My medical treatments are a few thousand a week and are unfortunately not covered by insurance. We have exhausted our resources over the past year and half. We are doing fundraisers because we can no longer afford my treatment that, fortunately, has been working. My husband has been working several extra side jobs and it is just not cutting it. I am desperate which usually takes desperate action. To open myself up especially on FB is one of the hardest things I have ever done in my entire life. What it comes down to is that I am scared. To come from being healthy and running races down to having to admit to myself and to everyone else that I’m in a wheel chair and crippled is very hard. It is pride that I have to overcome, but I hope the next time I see people from my past or future it will be when I am happily walking and moving normal again. My hope is my story can help others and also bring awareness to Lyme’s disease, so people can get the help they need and deserve. For Lyme’s disease truly has become an epidemic that is being ignored.

I appreciate everyone’s concern and help over the last year of being bed ridden, especially a sincere thank you to my family, friends and my ward. I have been blessed! I know a lot of people don’t know about my situation, but know just being a friend or an acquaintance has meant the world to me.

A sincere thank you to all,


This is the hospital bed up in the bonus room. My parents and my youngest brother’s family came to visit.

This is how we celebrated birthday's.

This was at a time I was trying to be up and spend time with my kids. I remember just being so weak and pleading to go go back to bed. And thinking, "Are we done yet".

The video is embarrassing, but it is what it is. I have major bed head. (Ha ha) This is one of the only videos I could find. I wouldn’t let Kent take very many pictures of me during that time. And dang, it's a huge video. I couldn't figure out how to shrink it a bit. 


  1. Emily, thank you for sharing your story and journey to recovery, which closely mirrors my own. I am looking forward to reading an update of how you are doing and, although I know how much of a "back and forward dance" it all can be, I hope you are continuing to improve.

  2. I too was diagnosed with Lyme by Dr Bergdorf. Unfortunately after almost 2 months doing her treatment, I have only gotten worse, and the pain intensified. Did this happen to you? I'm losing hope and feel I need to find a new Dr. I'm so glad you are doing better. Prayers for you and your family

    1. Marietta Bergdorf saved my life. I have a very interesting story to tell. I suffered with Ankylosing Spondylitis (Arthritis of the Spine) for 17 years. I do not have it any longer and have not been on any medications since 2002. The only person that anything to do with my recovery was Marietta. She told me I would experience more pain in the beginning of my recovery and she told me that was a sign my body was fighting the disease. She also told me if I did not do EVERYTHING she told me to do, I would not recover and that I would die. Yes I understand what you are saying but if you are one of the few people in the world that can cure chronic disease, you would be late and you would have problems trying to give all the patients timely attention. I don't know anyone else's situation but I know my own and I met a lot of people she had cured of terrible diseases. sincerely, Stephen Bibb 817-995-7987

  3. Marion Odgers, Sorry I didn't see your comment until now. Yes, it is very much a "back and forward dance". Its been quite the crazy journey thats for sure. Thank you for your sweet comments. How are you doing? I hope your doing ok. :)

  4. Trisha Rushton, When I first went to Dr. Bergdorf's office I was on deaths door. The first 2 months were very hard, but I saw improvement. She got me walking again. But after a year I plummeted. Unfortunately, it didn't last.

    The treatment I'm on now I hope is fixing the problem. Time will tell. So far my improvements have been awesome. If your interested, I can give you my Dr. and case manager's email if you want. He can answer any questions you may have.

    I know this journey can beat you down over and over. Finding and clinging onto that renewed hope is a daily battle. Keep searching and finding whats right for you. I wish you the best to find something that helps. I'm interested to know what you have tried or trying right now.

    Take care,

    1. I would love to know who your doctor is. I've been trying to work with Dr. Bergdorf but I'm fed up with waiting hours for an appointment, a month for a return phone call, etc.

  5. Hi Carol,

    Dr. Bergdorf helped me walk and I was on my way to getting better, but after a year it wasn't enough. I started to go down hill again. I am on a treatment now called the BX Protocol. The current video on my blog documents where I was and how the BX has been a catalyst in helping me to where I am currently at today. For more info, you can email: My BX adviser Todd. His email is:

    You can also go to the website and put in your contact info there and they will respond back with more info. I would email and put in your contact info to get a quicker response. Every treatment I know is expensive. Hopefully, they will work something out with you.

    I hope that helps. I wish you the best and that you find what helps you.


  6. Hey Emily, we are in the process of becoming a member of the BX protocol and we were wondering if we could email you and ask how you're doing since completing the treatment. We'd really love to hear from you since my wife's Lyme has affected her in a very similar way.
    Personal email:

    Many Thanks, Stephanie and Daniel Wills