A Negative Lyme Test Is Good News, But It Doesn’t Mean You Feel Better.

I received this email about two months ago. You might wonder why I didn’t immediately post it and make a big fuss. There are a number of reasons for that.

For starters, it has taken me a while to process it. To believe it’s true. When I got the email I had no reaction whatsoever. I simply stared at the screen in stunned silence. Lyme Disease hijacked my life for eight years, and I spent nearly every waking moment either fighting it or just trying to bear it. Then suddenly with the arrival of an email bong, my tormenter is dead. Just like that.

This may sound odd, but I just couldn’t absorb the fact I had actually beat Lyme. That I didn’t have to fight anymore. An image came to me of a prison guard arriving to let me out of jail, but after he unlocked the door I just sat in my cell. I sat there because I didn’t know how to be free. I only knew how to be a prisoner.

That’s what happened to me with Lyme disease. As the years ticked by and nothing was working, I started to believe I would always have Lyme disease. That a life with Lyme was my only reality. And now here was black and white evidence of a different possibility.

Much later in the day I sat down and thought about all I had done. The tests, the procedures, the doctor visits, all the wretched things I had put down my throat, the prayers, the fears. And then finally, the tears came. Tears for my lost eight years. Tears for how hard I fought. Tears for how tired I was. Tears for how my life will never be the same.

I’m crying as I recall the memory.

There’s another reason I didn’t jump for joy when I received the news of my negative test. As it turns out, the negative test is really just the beginning of the true healing. One more cruel thing about Lyme. My doctor explained it like this: picture hitting your thumb with a hammer. When you lift the hammer up, the assault is over, but your thumb is wrecked and will take some time to heal. Killing the last Lyme spirochete is like lifting the hammer off your thumb. The assault is over, but there is still a lot of healing to be done.

That’s where I am now. In theory, lyme spirochetes no longer inhabit my body. (I say in theory because Lyme is good at hiding from your immune system and from tests. I will need to be re-tested in a few months). But while the Lyme is gone, the damage it has done remains. The issues I still wrestle with, in order of severity, are:

  • Slow GI motility that necessitates a mostly liquid diet.
  • Extreme anxiety I never had prior to Lyme.
  • Low physical and mental stamina. I’d say I’m operating at a quarter of the capacity I had before Lyme.
  • Hypothyroidism. Never had it before Lyme. Will probably be on thyroid medication the rest of my life.
  • Osteoporosis. The result of malnutrition and weight loss due to my Lyme induced GI issues. (I’m only 48 and there is no family history).
  • A general sense of just not feeling like myself.

In spite of that list, I feel better than I have in a long, long time. So let’s end with a more positive list. Here are the things that are improved:

  • No more bone crushing, debilitating fatigue. There were many days when I could hardly extract myself from my chair.
  • No more brain fog. There was a period of about two years when I could barely focus enough to read.
  • No more 24/7 general feeling of malaise.
  • No more nausea and more or less constant stomach pain (credit the liquid diet for that).
  • If you ignore my GI area, my body feels fantastic. Light and airy. It used to feel extremely heavy and creaky. At times, I felt like I had quicksand in my veins.
  • I no longer feel like I am 100 years old. I don’t really know what it feels like to be 100 of course, but I can imagine, based on how I used to feel.

As I take the 30,000 foot view of my journey, I still have a ways to go. But I think I have covered more ground than what remains. At least I hope I have.

I have no idea when or if I will finally feel completely well. That’s beyond my control. So, as I enter this next phase of my journey, I will do what I have done all along. Take each day as it comes. Find gratitude wherever possible. Life life when I can. Rest when I need to. Focus on how far I’ve come instead of how far I have to go. And the most important thing of all – focus on the effort, but let go of the outcome.

I learned long ago that the outcome is up to a force much greater than myself, and the more I work to give up control, the more content I am.

Let’s have an Amen for that.

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