I’m pretty sure most people around the world who aren’t living with Lyme think the symptom list is this simple and straightforward:
- bull’s-eye rash
- flu-like symptoms
And I reckon that this false belief is a major reason persistent Lyme disease continues to be missed in people with a wide range of complaints physical, cognitive, and emotional.
Lyme disease is called “the great imitator” because it can look like so many other conditions. Symptoms may come and go over time, further complicating the picture.
Or, instead of a whole constellation of ills, someone might just have one. A sore knee. Panic attacks. Alzheimer’s-like dementia.
The various symptoms that have plagued me for several years now are caused by a variety of diseases spread by ticks, including Lyme, Babesia, and Bartonella.
I have a brand-new one. For some weeks now, the bottoms of my feet have felt like they are on fire. The skin is absolutely searing as I write this. Walking across the carpet in my bedroom is like, well, walking on hot coals.
My Lyme Literate MD says we’ve beaten back the Babsesia, and given Bartonella the chance to rise up. That’s what happens during treatment of tick-borne illnesses, he says. The battle shifts. One enemy is conquered. Another, seeing opportunity, surges ahead.
Being unable to get out of bed is one of the most frightening experiences ever. And hearing myself cry out in pain is just plain surreal. At one time or another, I’ve experienced all of these:
- body-wracking, bone-deep pain all over my body
- excruciating joint pain in hips, knees, and feet like someone stabbing into them with an awl
- shooting pain up and down my legs
- burning and numbness in my arms and legs
- a stiff neck
- muscle weakness
- an awful sensation like ice-water in my veins
- vibrating and tingling sensations/numbness
- flu-like feeling
- staggering, hit-by-a-bus fatigue
- a bull’s-eye rash, with a tick in the middle
- an amorphous blob of a rash 15 inches across, with a tick in the middle
- tightness and pain in my chest
- memory loss
- inability to think straight/process thoughts
- inability to write
- inability to read
- inability to follow directions
- mixing up words
- mental confusion
- extreme mood swings
- deep depression
- severe anxiety
- blurry vision
- digestive issues
- ringing in the ears
- creepy sensation like bugs crawling under my skin
- soaking night sweats
For all that, I haven’t had every symptom by a long shot. A local woman my age died from Lyme-related heart failure; my own heart grieves, but thus far remains free of infection. I’ve never had seizures. Or trouble seeing clearly, or even blindness.
Tick-borne infections are insidious, able to invade many parts of the body. Just when I think I have a handle on the list of possible Lyme symptoms, I see a study that says sudden hearing loss may be another one.
Think my list is long? See this checklist by Lyme disease pioneer Dr. Joseph Burascano, with more than 50. You can fill it out to take to your doctor. Or this list from the Lyme Research Alliance, which is organized by categories.
I worry a lot these days about all the folks with serious health issues because of undiagnosed tick-borne infections. Or those people (sad to say, including many doctors) who still believe that both symptoms and treatment are straightforward. Or those who get tested based on symptoms, only to miss treatment because they wrongly believe a false test result.
With the right help, people infected by ticks can get better. Without treatment, they may well suffer terribly all their lives—and even die.
If you suspect that someone you know has undiagnosed Lyme, consider sending them this post, along with this link to help them find a Lyme literate doctor. Maybe together, by reaching out to one person at a time (even to our doctors) about the Lyme epidemic, we can make a difference.
Tagged: ALS, alzheimers, Babesia, bartonella, burning feet, checklist, chronic fatigue, coinfections, foot pain, great immitator, herxing, lyme disease, lyme literate doctor, pain, symptom list, symptoms, tick borne infections, ticks