So, you’ve had Lyme disease for 20 years…
It’s not “all in your head”
The lab results said “we want to discuss these results with you in-person.” About 18 months ago, my doctor called me into her office.
She told me I had likely had Lyme disease for quite awhile. “Likely,” because we can’t really be sure. Lyme disease is difficult to diagnose, and is controversial.
I’m open to the idea that we could be totally wrong. What I do know is that the treatment has been slowly working. Occasionally, there’s a burst of clarity: all of the joint pain, fatigue, and brain fog lifts, and the only way I can describe the feeling is normal.
I briefly feel normal in a very unfamiliar way, like that I might actually enjoy the strange and painful activity of jogging, or that I could understand how a person might have the energy to have a day job where they have to go into an office every day.
Then, it subsides, and I feel shitty again: easily tired, it’s hard to type because my joints are stiff, and my muscles in my neck seize up into knots. But, the overall trend of the how-I-feel graph has been positive.
Treatment is like a game of whac-a-mole. You frantically try different things, then BAM, you hit the right thing and feel great for awhile. Then, something else pops up.
I’ve been low on, and have had difficulty absorbing, magnesium, B12, copper, iodine, other B vitamins, and I’m sure many other things. I self-inject B12 and magnesium only occasionally these days. In the beginning, I was injecting magnesium three times a day. I wear a copper patch on my skin, which sounds like total quackery, but it works.
I’ve never had a tick bite to my recollection, and I didn’t set foot in New England until well after my problems started. I grew up in Nebraska, which isn’t exactly known as Lyme country.
One year in junior high — about 20 years prior to my diagnosis — I had a mystery illness for which I nearly had to repeat the grade. I had a low-grade fever, fatigue, and joint pain. We thought I had mono, but tests came up negative.
We never did figure it out, but I slowly was able to function again. I never really got better. I had chronic sinus infections that lead to eliminating gluten from my diet. Food intolerances racked up. (Today I’m relegated to a “paleo” diet with no grains of any kind, and the only sugar I eat is berries.) I’ve had a patch of yeast behind my knee for more than 15 years, and I had a several year period when my glands were swollen. I sometimes suffer from dysphagia, wherein food gets stuck in my esophagus. (That sucks.)
Doctors were useless for two decades in helping with any of these problems. That story has been told thousands of times. I didn’t even notice the joint stiffness and swelling until it subsided. I thought I just had big ankles. Sometimes, I sensed something was really wrong, but I thought it might be “all in my head.”
This has been a lesson in the frustrating fact that we are at the mercy of our bodies, and they don’t always cooperate. As the fog clears, from the joints in my fingers, from the muscles in my neck, and from the flow of my own thoughts, I’m amazed at how many hours there are in a day, and at how light one can feel when one’s body isn’t attacking itself with inflammation. Sometimes, what you think is “all in your head,” is actually in your body.
11/1/2016: I’ve detailed my treatment in over 6,000 words on my blog. Beating “Chronic Lyme Disease”