Emotions of Lupus

Lyme Disease Follow Up Tomorrow

Dear Diary,

As I face one more day until my follow up appointment with the Lyme doctor tomorrow, I just finished reading “The Beginner’s Guide to Lyme Disease,” by Nicola McFadzean. It’s the Lyme disease book that Dr. M recommended.  I’m feeling overwhelmed, angry, and affirmed all at the same time.

Overwhelmed by all the information on the history, research, and treatment protocols. Very scientific stuff. I spent a lot of time trying to pronounce the biological and medical terms I’d never heard of. And, I consider myself pretty savvy in that area, given that I’ve done so much research and had so much experience with my own symptoms, prior to the diagnosis of Lupus and Lyme. But these words were way out there. I don’t think most practitioners not associated with Lyme disease have knowledge of what’s covered in this book!

Then that familiar feeling of anger came up again, especially when it came to the politics of the disease. I mean, there’s such a divide in the medical community regarding how to treat Lyme disease, especially when someone like me tests positive for it without remembering a tick bite. On the one side, you have the IDSA camp and their infectious disease doctors who don’t believe in chronic Lyme disease at all. They say there’s no such thing because if you’re treated for Lyme disease at the onset, then that’s all you need. Any lingering symptoms are termed “Post Lyme Disease Syndrome,” and will resolve in time.

In the opposing camp, you have ILADS (the International Lyme and Associated Diseases Society), made up of doctors who believe that there is such a thing as chronic Lyme disease, and that it should be treated with heavy doses of long-term antibiotics. The “Under Our Skin” documentaries highlight this divide and show how the battleground of Lyme disease actually does no one any good. Patients need the consensus of all experts so that they can make informed choices. Whether it’s a slow, agonizing deterioration or an acute, rapid descent, Lyme disease continues to rob so many people of a life we once knew.

On the brighter side of reading this book, I feel affirmed (and hopeful) by the stories of survivors who overcame this disease. Their symptoms, fears, and personal struggles were so similar to my life in so many ways that I finally feel like it wasn’t all in my head, as some have so insensitively suggested. I mean, I know it wasn’t all in my head, especially based on labs, my symptoms, and other positive clinical tests. But when illness doesn’t manifest itself visually or in a way that is expected, people just don’t believe you’re sick. Sometimes, I felt the need to carry my lab results and doctor reports around with me just to prove to people that there is a reason for my inability to do things and my frequent “No” answers to requests for my attendance or assistance.

Well, now that I’m done reading, I’m almost ready to meet with Dr. M. I just need to modify my list of questions and print out a few documents to answer questions he had about my disability and current physicians.

Thankfully, it’s time for Hubby to massage my aching muscles. I feel like I’ve finished running a marathon, and all I did today was read this book and quickly cook dinner. I guess I pushed myself too far again….



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