The whole process of starting Lyme Disease treatment is overwhelming! Information can be conflicting, leaving you unable to figure out what will actually help as you work toward stability.
Lyme Disease is a complex condition. There’s usually a lot more than just Lyme going on in your body if you’re experiencing a whole list of symptoms.
I’m not naturally someone who likes rest.
Some people like to take naps and lounge. I often wish I were like them! It would be nice to be able to focus on a Netflix marathon without getting the itch to go do something else. It would be great to be free of thinking of the next thing I would like to be doing.
I ran into a friend today.
We bumped into each other at the polling place as I went to cast my vote for school board. She was working the polls as she does each election.
Lyme Disease Treatment.
The process has been hard (which is an understatement).
Many days, I didn’t know if I could go on.
I’m not overdramatizing it, either.
It was that horrible.
I often felt lost and alone.
I knew God was there, but I wondered why I couldn’t feel close to Him anymore.
Brain fog was thick, and I felt like I was losing my mind.
I’ve finally gotten to a place where I’m a bit more stable, so I’d like to share a few thoughts on the treatment process.
6 Things I’ve Learned While Treating Lyme Disease:
1. I must be my greatest health advocate
Even with excellent doctors and people in my life who care about me, I realized early on that if I did not speak up for myself, I wasn’t going to be helped. Lyme Literate Medical Doctors know what they are doing when it comes to treatment, but they don’t know how it feels to be me. They don’t know the exact pain I’m feeling or how treatment is affecting me. Even before diagnosis, I learned that I had to keep prayerfully pressing for answers. Had I not kept asking questions and seeking information, I’m not sure what kind of shape I’d be in today.
When I was first diagnosed with several chronic conditions, I felt lost and alone. It felt like nobody in my life understood what I was going through.
I had a lot of well-meaning friends, but at the end of the day they just didn’t have the background to understand the magnitude of what I was experiencing.
So, to feel a little less alone, I turned to online support groups.
On Facebook, there are hundreds of groups for those suffering from chronic illnesses. I joined the groups and started reading about others’ experiences. Members of these groups got me. They could relate to what I was going through. While our symptoms may have been different, our experiences often looked similar. We each were facing some level of debilitation. Chronic illness was changing our lives.
After a while, though, being part of Facebook support groups began to grow draining. I’d see posts pop up in my newsfeed when I was just trying to think about other things. Sometimes, the discussions would bring down my mood. What, at first, was a place of support seemed to turn into a place that drug me down.
I thought about leaving all of the groups. I thought about not talking about illness anymore and just avoiding the subject altogether. But, still, I felt this sense of calling from God to connect with others who are suffering to help bring a little hope. It didn’t make sense for me to completely leave the groups when I desired to help encourage others. It was also good for me to keep learning about what others do for treatment so I can make educated decisions when talking with my doctor.
If your health is in a place where you think it’s possible you have Lyme Disease, I am really sorry. This disease can be incredibly difficult to endure, and I wish you weren’t experiencing symptoms. Please know that you are not alone in this.
(I want to preface this post by explaining that I am not a doctor and am not able to diagnose, prescribe a treatment plan, or give medical advice. The purpose of this post is to share insight gained from my own experiences.)
When I first realized that the symptoms I was experiencing could be Lyme Disease, I did a lot of research to determine the best course of action to take, but it wasn’t easy to find accurate information. There were conflicting opinions everywhere.
Often times, even if symptoms would suggest Lyme as a possible culprit, doctors don’t seem to recommend testing. I’ve seen stories of hundreds of people in Lyme Disease support groups who went to their doctors with a whole list of symptoms, but never did their doctors mention Lyme as a possible culprit.
At least once a week I get an email from someone who has stumbled upon the blog and thinks they may have Chronic Lyme Disease. They aren’t sure what to do for testing or treatment. Their doctors either have treated them with two weeks of antibiotics and said they were cured, or they were never even checked for Lyme in the first place. Now these people are at a place of being debilitatingly ill and unsure of what to do next.