It has never been as bad as it was when I was undergoing treatment, but I have had a couple flare ups over the years since I quit treatment back in 2010. At least I think that’s what they were. There’s always the “going crazy” aspect of Lyme disease.
There have been times when brain fog crept back in.
There have been times when I was just so tired.
My toes occasionally turned bluish for no apparent reason.
But by far, the scariest is the hints of pain. That pain. Not sore muscles, not an achy back. Not the pain that comes from over exertion or sleeping on your arm wrong. Not the pain of a broken bone. There is no other pain that I have ever experienced that is anything like the pain I felt with Lyme disease.
Everyone gets aches and pains I’m sure. Getting older doesn’t help that any. So most pain, achiness, soreness that I get that can be ignored is ignored. So when that pain has crept up, I have been able to initially ignore it like all the rest because it’s not excruciating. Sometimes it just went away. A couple times, it didn’t.
For me, the pain was like a leaky faucet. At first you don’t really notice. Then you do, but it’s no big deal. Then it’s kind of annoying. Then it starts to wear on you. Before you know it you’re ripping up the floors searching for the tell-tale heart.
While the pain level has never again made excruciating like what sent me to the ER when it all began; never again got to where I couldn’t get out of bed or function like it did when I was undergoing IV antibiotic treatment; never again made me want to rip up the floors; it has crept in a few times and made itself known…and it has terrified me every time. I never want to feel that bad again. I never want to flood my body with antibiotics again. I never want to be so dependent on everyone else around me again. I never want to feel helpless and useless to my loved ones again.
The messed up thing is I don’t know that what I’m feeling is a Lyme flare-up. I don’t know it was Lyme disease in the first place. I don’t know that I ever even had Lyme disease, or that the long term antibiotics worked, or whether I still have it, or what. And unfortunately, given the nature of the disease, especially chronic Lyme disease, and the nature of science and the medical field, and the nature our world, I will probably never really, truly KNOW.
What I do know is chronic Lyme disease is a real thing that people experience all over the world, no matter what the CDC wants to say and I was diagnosed with it, by a doctor. I do know I was miserable for the better part of a year of my life. I do know that after 9 months of IV antibiotic treatments I didn’t feel nearly as bad. I do know I experienced every symptom of chronic Lyme disease at some level.
And I do know that I have been without any symptoms of Lyme for the last two years.