It’s been humbling to read about my fellow Lyme friends’ struggles with this disease, and although we all have varying degrees of symptoms, there is a relate-ability between us that cannot be found elsewhere. When I was brainstorming ideas for this series, I considered many things like, what questions to ask and who I wanted to ask to participate. I knew that my main focus was to bring awareness while giving Lyme patients an opportunity to share their story. What I didn’t count on was how emotional it would be for me to read through these stories. I simply didn’t think about how tough it would be to read story after story of young, lively, intelligent people being knocked around by this nasty disease. We are just getting started with this series and I already feel enlightened and less alone in fighting this battle.
This story comes to you from Victoria, who some of you might know from her blog Lemons n’ Lyme. If you are looking for some positive healing inspiration or some delicious paleo-soon-to-be-raw friendly recipes, then head on over to her site after you read her story (below).
Lastly, if you would like to share your Lyme story, please email me at firstname.lastname@example.org for details.
Sending you much love for the new year!
First Name: Victoria
Where do you live? I go to school in Colorado but my true home is in Washington DC
When/Where do you suspect that you contracted Lyme?
In Virginia when I was a child (somewhere between the ages of 6-10). My family had a river house and I spent my summers running around outside. We did tick checks at the end of every weekend and I always was pulling them out of my hair, but we didn’t know about Lyme disease back then. I specifically remember coming home one weekend from the river and finding a completely engorged tick on my scalp.
When did you first begin to feel ill or start to notice strange symptoms?
Around 9 or 10. I first got extremely sick 2 years ago, though.
What were they?
As a kid I got really bad headaches every day that were never diagnosed (I even had a cat scan done). I also had ezcema and other rashes along with constant strep throat. Then in 8th grade I started getting severe stomach aches and other digestive issues (that is when I knew something was up). Throughout high school I had sinus infections regularly. When I finally got really sick (sick enough for somebody to diagnose) I had no energy, slept almost all day, migraines, blurry vision, pain everywhere, could barely stand long enough to shower, numbness and tingling in my hands and feet, and I couldn’t concentrate for the life of me (just to name a few of the symptoms).
How many doctors did you see before reaching an accurate diagnosis?
About 5, but I was put through the wringer with tests and diagnoses with each of them.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
I was told I just had IBS. I was also told I was making it all up, had depression, and needed to see a therapist. 2 years ago when I got really sick, I saw the doctor at my school health center who said it was mono.
What are the main symptoms that you experience currently?
I’ve been on treatment for a year and half which has helped alleviate some symptoms. I still have extreme exhaustion and low energy, headaches daily, joint pain in my hands, neck pain, cold hands and feet, head pressure and ear ringing (this is the worst!), extreme PMS, anxiety and feeling very emotional, brain fog and trouble concentrating, just generally feeling out of it or disconnected.
What does your treatment regimen look like?
I’m on about 5 oral antibiotics and I am on two different IV antibiotics. I take some herbal anti-bacetrials, as well. I’m on a TON of supplements. I detox as much as I have time for with school (epsom salt baths, taking activated charcoal, yoga, etc).
How much do your symptoms prevent you from living a normal life?
I am in school and I live on my own (with a roommate), so I can get through my day but that is about it. I’m lucky that I can function enough to go to school and get through what has to be done every day (like shower, get dressed, put a meal together, and finish my homework between naps), but it takes a lot of energy just to take care of myself. I don’t have extra energy for socializing or doing much cleaning (I’m lucky my roommate understands and helps me out). Some days I feel good and can workout a little, clean the apartment, or run extra errands but then I usually am dead for the next few days and need extra rest.
What do you like to do in your free time and how is this different than before you were sick?
My free time consists of resting and watching a lot of TV (seems to be popular about the Lyme community 😉 )! I used to go out with friends a lot, experiment with recipes, workout. I love fitness and being active but that has been put on the back burner for now. The free time I have is devoted to letting my body rest and fight the Lyme.
What do you want people to know about Lyme?
I want people to know that Lyme disease is just as serious as cancer and AIDS. I want them to realize that just because someone with Lyme looks healthy and happy does not mean that is how they actually feel on the inside. Lymies require care, love, and extra understanding. They need support. Lyme can be incredibly detrimental and it can rip away your reality, taking everything you had and destroying your sense of self.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
I’m honestly still working on accepting that I have chronic Lyme but having it has given me an incredible perspective on my life and life in general. Through having Lyme, I’ve learned about many of the injustices that exist in the American health care system. These injustices sicken me and sometimes I hate that I’ve learned about them but I am also glad to have learned about them because it makes me want to take action. Once I’m well, I want to be able to help others as much as possible. I’ve also met an amazing group of people through the Lyme community and gained some great new friends who completely understand what I’m going through. I’m so thankful for the support I get from these new friends and I wouldn’t be able to get through half of what I do without them.