How has Lyme Disease affected your life? What inspires you?
Lyme Disease has altered my perception of what happiness looks like. I have been very sick for years and wasn’t tested for Lyme Disease until a few months ago, positive western blot for active Lyme Disease. I’ve changed how I do nearly everything, because I cannot keep up with life without accommodations. For example, my daughter crawls into bed with me so I can help her with her homework instead of us doing it at the table together. This is a simple example. I cannot play T-Ball with her every night to help her prepare for her big game, I watch out the window from my bed. My husband and I no longer dance together in the kitchen while making dinner. My hopes and dreams have changed. Happiness is much simpler now.It’s the little things that keep me going.
I was originally infected with Lyme and co-infections at the age of 4. I’m 24 now. After 3.5 years of treatment I still don’t feel well but I’m much better. At 20 I was unable to walk to the restroom from my couch. I would crawl. I couldn’t extend my legs or arms without extreme joint pain. I couldn’t sleep, my skin would fall off, nerves would burn, head would pound, stomach would hurt. Drenching night sweats, out of breath, completely dysfunctional mentally.
I had family members tell me I looked like an old man and that I was making myself sick. I threatened to suicide just so that those family members would listen and unfortunately I ended up in a mental institution for a night. I wasn’t going to suicide, I just wanted to be heard. They wouldn’t listen when I said I didn’t feel well while growing up and they still didn’t want to believe that I was sick.
Then they didn’t want to believe in my diagnosis when I was tested at a homeopathic office using bio-energetic testing. After that they didn’t want to believe in my treatments and that it would take 3-6 years. They thought I could just get up and act like nothing was wrong since I was now treating it.
Unfortunately Lyme takes a great toll on your body to heal. Herxing is hell and very painful to go through. You don’t know what to expect the next day. Luckily I’ve had my mom to help support me, otherwise I would not have cared enough to keep fighting. I needed a reason to keep going and her and my sister were my reason because they cared enough to listen.
How has Lyme Disease affected your life? What inspires you?
Haven’t been able to hold down anything more than a part time job since my diagnosis 4 years ago =( lost a ton of good relationships and my social life is almost nonexistent these days. I feel weak/tired most days, with a lot of other random body pain.
With that being said, Lyme has brought a few positives into my life. I got to meet the most amazing girl in the world and love her more than anything. She’s been by my side fighting this disease with me since the day we met.
Rediscovered my faith. I try my hardest to walk with Jesus. My biggest weakness with this disease is frustration, and it’s a lot easier to overcome that with the Lord.
How has Lyme Disease affected your life? What inspires you?
*I’ve come to learn no one knows what to do and you need a lot of money to try anything and everything to get better. *I’ve learned getting the diagnosis of Lyme is not a relief as once thought (“now I know what my problem is”) *I’ve learned the diagnosis is a pain in the ass and gets little attention from the medical community. *I’ve learned that everyone I tell knows someone with Lyme. *I’ve learned it takes all the little energy I have to convince doctors “my treatment is not working and I’m still really sick”. *I’ve learned not to act OK anymore, but to be honest or doctors “assume” I’m OK…(like don’t wear lipstick or makeup to your appointments 🙂 ) *I’ve learned you can only fake it for so long. *I’ve learned I can’t do this alone. *I’ve learned I need to take a leave of absence from my job to make my one and only job to get better. *I’ve learned that’s probably going to require going to a different county to do so. (Doing the research now to figure out where that will be. Has to be body, mind, and spiritual healing to heal, that is for certain.) *I’ve learned Lyme sucks and don’t ever get bitten!
How has Lyme Disease affected your life? What inspires you?
January 2016 I was bit by something (which I now believe was a tick). I never got it checked out because it was winter and I hadn’t spent much time outside so I assumed it was a spider bite or something like that. A few months later I started having flu like symptoms and those symptoms never went away. Some days were worse than others, but overall my symptoms progressed. I had been tested for Lyme but it was negative, so I was referred to a rheumatologist and jumped around to a few different doctors after being told it was a mental health issue, food allergy, etc. I decide that if I wanted to get better I needed to do research and be an advocate for myself.
April 13th 2018, the doctor called with my diagnosis: Lyme, Babesia, Bartonella, Q-fever, Candida, Mycoplasma Pneumoniae & Epstein Barr. The doctor’s appointment and tests needed to get this information was almost $1500 to POSSIBLY get a formal Lyme diagnosis (and I do have insurance). I had multiple doctors believe I have Lyme and co-infections, but of course the test was always negative. To put into perspective why I thought the risk is worth it, my previous diagnosis was Chronic Reactivating Epstein Barr, and 2 years & 6 doctors later (11 including ER visits) no one had helped me. This is something that occurs with many people with Lyme as the test commonly used is not accurate and many doctors believe that Lyme cannot be chronic.
In those two years I had to leave a career that I absolutely loved. I lost friends and became distanced from family as my symptoms took over my life. I struggled financially and physically because my insurance wouldn’t give me the help I needed.
This is why awareness and advocating is so important. Not only do I share my story to help those who are looking to live a more “natural” lifestyle, but to raise awareness about the dangers of Lyme and the trials and tribulations of those who are diagnosed late stage. If I had this information when I was bit, I would probably be in remission now. If I am able to help even one person recognize that they may have been bit by a tick it could be life changing!
Everyone kept saying they’re “sorry” to hear about my results, but I was RELIEVED. The moral of my story is to never give up. You know your body more than anyone and the best way to get answers is to be an advocate for yourself. Always speak up and be honest about your symptoms despite negative feedback. It may have taken me two years to get here, but now I’m on the road to remission.
How has Lyme Disease affected your life? What inspires you?
This has been such a HUGE part of my story. I could never actually count the times that I’ve been to the ER since 2014 due to Lyme and it’s co-infections. Most of my ER visits were for extreme heart and chest pain, numbness, shortness of breath, palpitations, racing heart. Occasionally I’d have other symptoms like nerve pain and one time my hands started closing up and I couldn’t open them. All scary stuff and all extremely common with Lyme disease. I was thinking today that it’s been awhile, close to a year, since having to go to the ER for any reason but especially Lyme related. I’ve made it to this point because of Jesus and a really great functional medicine doctor. I truly never thought this day would come and I am forever forever grateful everyday to be where I am right now. The chest and heart pain isn’t like it was, but it definitely hasn’t left my body. So here’s to hoping and trusting that total healing especially in my heart will one day be completely healed.
How has Lyme Disease affected your life? What inspires you?
May 1 marks the start of Lyme Disease Awareness month, so here we go…. It took 5 years from my first lyme-related ER visit to diagnosis, during which time the disease spread to my brain, heart, lungs, central nervous system, and pretty much every tissue in my body. By 2016, I was sleeping 18-20 hours a day, had lost feeling in my hands and feet, and was so cognitively impaired that I had trouble reading a dinner menu or speaking in complete sentences. Despite the fact that I was living in the backwoods of New Hampshire, no doctor in 5 years thought to even test me for Lyme. Awareness is so important to me because awareness is the *only* thing that can prevent others from getting as sick as I did.
I’ve spent a lot of time over the last few years compensating for, or covering my illnesses and the remaining time making jokes about them to lighten the mood. So for the month of May, my resolution is to share more of the honest truth about Lyme in the hope that it helps others recognize symptoms earlier than I did. With 427,000 new cases diagnosed each year in the US, it’s more important now than ever <3
How has Lyme Disease affected your life? What inspires you?
Changed my world. I choose to look at positives so…. appreciate and be in the moment on the good days, I realized I am a fighter, and everyday I try to fight and when I can’t I allow REST and healing. I am thankful for the days I CAN be mommy and wife and not in bed. I refuse to let this disease take away my joy and happiness, even though I DO allow myself to cry. I choose to think God will use this for good in my life. Maybe I can help others AND it sure helps me realize THIS world is Not my home and I will have a resurrected perfect body one day! Thank YOU Jesus!
