Life of a Lymie, How has Lyme Disease Changed your Life?

We have all had the experience of having someone to you, “My cousin Ed had Lyme and he just took antibiotics for two weeks and now he’s fine.” Right? How frustrating is that for you to hear? The person telling you this, probably has no idea that his cousin Ed probably had a smart doctor who treated him appropriately right away. Cousin Ed maybe also only had just Lyme Diseaese and not any of the co infections likes Bartonella, Babesia, Erlichiosis, Rocky Mountain Spotted Fever or any of the others that ticks can pass along.  So tell the world what having Chronic Lyme Disease is like for you.lyme life

Tell us in the comment section below how Lyme Disease has changed your life. What has become your new normal?

7 thoughts on “Life of a Lymie, How has Lyme Disease Changed your Life?”

  1. House bound
    My kids are my chauffeurs
    Excitement is now anxiety
    My mind says go my body says no
    Herxing is my new friend Maybe this new protocol will work
    pain is normal feeling good is that normal

  2. I went from being so active. Three years ago I was riding my horse, camping and hiking with my dog. My husband and I participated in social activies with our friends. I was happy. The first year I got sick (which happened suddenly) I had EBV and was in bed for about 9 months. I wasn’t sick but so exhausted it felt like I had a cement coat on. However, I didn’t stop trying to help my mentally ill sister which caused me great stress and hurt emotions. My mother didn’t help and just added to my daily stress. I got better through the aid of an intergrated medicine doctor. Three months later I got pneumonia and one month later I woke up with my entire right side being numb. Again the intergrative medicine doctor got me feeling better (at great cost and time) and I felt better for three more months. Again, I didn’t stop interacting with my family. Bam, I woke up on April 10th 2015 sick which felt like a bad case of the flu. This went on for a month. My GP tested me for “Lymes” as he called it and it came back negative. I waited three more months until I finally got an appointment with a LLMD. I experienced exhaustion, sickness, and the worst neuropathy pain that was so bad I was suicidal many times. It will be three years in September that I started treatment and I have gotten about 30% better. The pain isn’t as bad unless I get a virus, I’ve gotten shingles and two bladder infections. My exhaustion has become somewhat better and I can do more around the house. I have a new doctor who ran a ton of tests so I am anxious to see what she finds. We have spent thousands of dollars saved for our retirement. I am pretty much homebound. My lovely husband takes care of me runs his business and caters to his 90 year old mother. It has taken a huge toll on him as well. I stopped talking to my family (which got rid of all the stress in my life) and lost all of my friends, except my Lyme FB friends. But it has been a blessing as well. With the time I have had I have begun a spiritual path with has enhanced my life beyond measure and for that I am grateful.

  3. Wondering every day, before I get out of bed, or attempt to if this is going to be a “good” day, or a day of hell, again. It seems the “bad” days come closer and closer together. Not being able to walk straight, or talk straight, to tolerate sunshine or getting so cold in a sweltering summer that I’m bundled in sweats, scarves and sweaters while everyone else is in shorts. Missing my life with my husband, who works his ass off to take care of me, and not being able to take care of myself. Loosing my hair, my patients and my fearlessness. Having panic attacks in cars, chest pains that feel like death knocking on my door and the endless “electric shocks” in my legs, feet and kneck whenever I try to sleep. Being so exhausted I have trouble remembering my own name, but not being able to sleep for more than a few hours at a time. Being so lonely because I can’t leave my house yet being afraid for anyone to see me on a really bad day. NOT being able to control my emotions, and te endless depression that comes in deep, consuming waves. NOt being able to create art or tolerate music. I really miss music

  4. Lost relationships, miscarried child, afraid of nature, betrayed by medical world (sick in 1987, diagnosed in 2013), angry, lost cognitive ability, learning ability, memory, career destroyed. Crippling fatigue means I do what is absolutely necessary to carry on and collapse thereafter. Poor quality of life. Mad at God too. I keep thinking God made a world where everything devours everything else – this is what the words “God’s Plan” means to me. Bitterness is a companion I want to get rid of. I have no family left, no children to assist. I am sad but fighting hard to beat this pestilence. I don’t mean to dishonor the religious among us. I have had beautiful transcendence spiritual experiences in my life. Now it is hard to pray due to lack of focus and pain.

  5. I am so scared to become any more tired than I already am! I have an amazing husband and children and I am so scared of them feeling like I am inadvertently abandoning them. Breaks my heart to think it could get any worse. I know God has a plan for me and it wouldn’t include a life away from my family. Taking one day at a time…..

  6. My life has done a complete turn around! To being on the go and very active to being able to do nothing!

    I was very sociable, now I hate to be around anyone! I am not happy go lucky anymore!

    I have changed into someone I don’t know n hate

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