Alyssa’s Story


I never particularly like to tell my Lyme story or relive the pain and suffer that I and my family went through but for HOPE, for INSPIRATION, for the good parts that come after all the pain, it is worth telling. In 2007, after countless doctor visits with a never ending supply of specialists, I was diagnosed with Late Stage CNS Lyme Disease, Bartonella, Babesia, Ehrichliosis and Meningoencephalitis. I wasn’t supposed to live. My family was to make me comfortable. The doctors said they could do nothing else for me. I, through the fog and pain and fatigue, said that was not an option for me.

My mother and son set up camp in my bedroom for weeks which turned into months. They were my source of hope and inspiration fighting for me every step of the way. They talked me through my pain, held my hand through the nightmares and hallucinations, force fed me to keep me alive. My mother helped get me to my Lyme Literate Doctor every week and my son, who was 11 at the time, did whatever he needed to do to make sure his school work was done and at the bus on time. In one of the darkest periods of my life I lost many many friends but found that I was surrounded by a few angels. The few who had the strength to carry me on their wings.

I spent the next several years, that’s right, YEARS, fighting to regain my health and my life and clawing my way back to the land of the living. With the guidance of my LLMD and the love and support of my family, friends and Lyme community I have been able to stand and walk again, go into public places, care for myself, speak properly, reduce my medication and pill load to simply 4 pills a day. I drive again, I have created a business and work from home, I am a full time single mom, I no longer have seizures, I no longer have debilitating pain. I sleep at night without the need for medication…the list is endless. I have what we all fight so hard for and that is QUALITY to our lives. I am not special. I simply chose to wake up each and every single day and say “I can do this and I will not stop pushing myself” so please tell yourselves the same. KEEP FIGHTING!

If there are things I can say to other Lymies it would be to believe you are worthwhile. No matter how sick you are I promise you are bringing something wonderful and magical to this world. You must believe in yourself and you must trust in yourself. The strongest and most amazing people I have ever had the honor to meet are often those with Lyme Disease. Do not let this disease steal your light, your courage, your love. I promise there is hope that each of us will all have the lives we dream of having.

For anyone reading this that loves someone suffering from Lyme Disease and all its complex issues. First, I say thank you. Please keep loving your Lymie. We need you. We need the well to remember us and to fight for us. We most especially need you to believe in us and to prop us up during the storm. I know that without the support of my family and my “team” I would not be where I am today. I am eternally grateful to those who stuck by my side and to those who now come into my life and love and accept me for exactly who I am.
In September of 2012, I will celebrate my 5 year anniversary with my Lyme Doctor. I think I will celebrate by doing what I love most. Living.

5 thoughts on “Alyssa’s Story”

  1. Alyssa, thank you for sharing. I am constantly looking for any source of hope I can find. I need to know that there are others who have gone before and have come back. My husband has been dealing with this disease for four years, however we have only know it is lyme since this past January. Currently my husband is living in a nursing home because I am unable to take care of him on my own. The biggest problem is that he can’t stand or walk. Sometimes he can’t sit up by himself either. Most of the time I can’t understand his speech and he is completely incontinent. He also chokes on even saliva. I wish I knew exactly what to do for him and for sure exactly what he has in his body. I’m exhausted from this roller coaster! I’m hoping for a success story of our own. Thanks again, for the hope!

  2. Thank you for putting in words what the rest of us feel and live through day to day. By this you give us the strength to go on, to have a chance to really live and not just exist in this shell of a disease. You are a wonderful example to the rest of us. God Bless!

  3. Thanks for sharing your story Alyssa, and good for you for digging your heals in and loving yourself enough to never give up. What courage and tenacity! Tough but worthwhile journey. You inspire by sharing.

  4. Alyssa, that was a beautiful, inspirational story. I am so glad you are doing well. I hope to fight as hard as you. Although I am not as ill as you were, (I can still work), I still struggle daily. But I WILL fight!

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