I’m two months and two weeks into my treatment for Lyme Disease. My headache (which I would have had for 6 years this week) is slowly diminishing. I have head-pain free days. I have days that are mostly pain free, give or take a couple of hours. My headaches, now only occasional, haven’t been past 5 on the pain scale in the past two months.
I should be jumping for joy, right? Well, I am, kind of. And I’m scared, too, because it could come back, or the arthritis in my joints could never leave, or the brain fog could never blow out to sea, or any one of the random Lyme symptoms could be with me forever.
I am optimistic. My first doctor insisted after thirty days of treatment that I should be fine and refused to treat me further. So I found a LLMD (Lyme Literate Medical Doctor) who is now treating me carefully, aggressively and will not give up.
A constant headache is a symptom of Lyme. Lyme tests are accurate only 60% of the time. Think about that. Do you have any other symptoms? Achy joints? Muscle pain? Has your eyesight deteriorated? My doctor said that it is often possible to run from your symptoms for a long time – as I did – but eventually they catch up and overtake you.
You may think you are crazy (also a symptom) or suddenly have ADD or early onset Alzheimer’s. You may have tingling in your face or chest pain.
All I can say is this: I have had Lyme all along. I know this now. For 5 years and 9 months I tried to treat a headache exclusively. If there is any chance at all that you could have Lyme, regardless of what previous tests have told you, please, please seek out a LLMD.
The treatment for Lyme has been rather brutal for me. I can stomach the massive doses of antibiotics but sometimes the pain is overwhelming, the fatigue makes it difficult for me to get my kids out to school in the morning and it is, in a sense, more depressing than the headache I have come to know and deal with.
I guess I knew how to push through that. This is new pain. I keep telling myself it will go away, I am getting better. Everyday without head pain should be celebrated because it is progress.
I can’t help be a little angry, a little cranky sometimes. Ultimately, I hope, I have found my cure.
I just wish I could cure all my readers here as well. Thank you for all the support, comments and emails over the past months. I deeply appreciate it.
Living with chronic pain is a life altering, isolating experience. I hate looking at the past 6 years of my life, knowing how the pain was a shadow that went everywhere with me, my constant companion.
What will a pain free life look like? I hope to find out soon. I hope you do too.