I am 24 years old and I have been suffering for more than half of my life from Lyme disease and its debilitating co-infections. (I was bitten by a tick when I was 4, 12, & 17 years old, & was treated with doxycycline each time). I was misdiagnosed for many years, experiencing symptoms such as chronic pain, GI issues, and joint pain. During the past 12 years on my journey to discovering that I have this horrific disease, I have been diagnosed with a laundry list of other things: JRA, Fibromyalgia, leaky gut, interstitial cystitis (with weekly DMSO injections), gastritis, gastro paresis, and kidney stones. I have arthritis in multiple places and have had numerous injections, as well as physical therapy treatment. I am now intolerant to gluten, oats, food preservatives, MSG, dairy, caffeine, soy, sugar, alcohol, and more.
The worst thing about this invisible illness is just that; it’s invisible. There are many parts to this disease that those around me don’t see. They don’t see the relentless pain that travels around my entire body, or my limbs that randomly fall asleep with pins and needles. They can’t see the headaches that take away my vision, or the pain in my jaw that has left me living off of baby food. They cannot see that I am freezing cold all the time, that I lose massive amounts of hair on a daily basis, and that sometimes the twitches/tics are so bad that I can’t express the words my brain wants to get out.
A huge part of this disease that is NOT often talked about is the anxiety, irritability, fear, and depression that follow you around everywhere you go like your own personal dark cloud; this is because the bacteria are now in my brain causing inflammation. People don’t see how weak I have become and that some days I just want to give up. They don’t see me curled up crying in the corner just wishing this agony would end. The joint pain is crippling, every single muscle hurts to the touch, my skin feels like paper, and I am overwhelmed by the fatigue. The shooting and stabbing pains go from head to toe, and never go away; my body feels like a pinball machine every single day.
I have given up on driving, as it scares the heck out of me when all of my senses are on overload and halfway to my destination I forget where I am going. The arthritis in my knee and hip prevent me from standing, sitting, walking, or laying for any amount of time. My chest flutters and I get dizzy just from standing up; and I can’t take a shower on my own because I have passed out numerous times and fallen. I am losing my memory more and more each day; within seconds I will forget what I am doing or what I was saying. I have gone through some really dark and scary times during this illness…its inevitable with this disease as I have learned. I am mentally, physically, and emotionally drained from this, there is a light at the end of this tunnel that I am trying to get to in order to get myself back to a healthy and happy me.
I reached out for help to LymeLight Foundation and I was granted funds to help with treatment. Since then I have been able to get weekly Glutathione injections as well as vitamin C injections through my Hickman catheter. When my weekly blood work came back last week, I was not flagged high for the first time in over 17 years. That is amazing! I never would have been able to get this far without this help. Now, I am absolutely looking forward to the future, I know I still have long road ahead, but it is getting a little easier to walk it!
After receiving money from LymeLight Foundation my whole life changed, I was able to receive Glutathione injections, which helped me detox. I started out with 3 co-infections and I now can say my numbers are down and have eliminated one antibiotic from my daily intake. Throughout my journey the past 2 years I have learned so much about Lyme and about myself! I have met other amazing Lyme Warriors along this road. We all share stories and help each other along the way to get through our day. I know I have a long way to go but through the generosity of this foundation I am on the road with a light at the end!