You’re 11 years old. Or 16. Or 30. Like most Chicagoans, you regard Wisconsin and Michigan as places that exist to rent us cabins for fishing, swimming, and hiking in the woods. But after a weekend breathing the fresh air, you return home and find yourself feeling sick: headache, fever, achy. Also, you’ve got a skin rash.
Doctor looks you over and says “Might be Lyme disease. Get bitten by a tick?” You’re horrified and answer no. She gives you a couple of days worth of antibiotics anyway, saying everything will resolve in time.
Feels like when you had the flu, though. Odd. Summer’s not flu season. Oh well. After a couple of weeks, true to the doc’s word you’re pretty much on the mend, back in school or back on the job, and you forget all about it.
Years later you start to perceive something’s not right with your body. Your joints really hurt and the doctors you’ve been seeing think you might have some kind of arthritis, maybe rheumatoid arthritis or another autoimmune disease.
And you have no energy. Zero. Your friends are going out in the evenings and you have to say no because you’re exhausted and achy, and you may be running a fever. You’re getting headaches, too, you can’t focus, and you’re even getting some skin rashes.
All your tests return negative results and you’re diagnosed with chronic fatigue syndrome.
“Sorry, no treatment. By the way, ever bitten by a tick?”
You answer no.
They run a screening test for Lyme. The result is “equivocal” and they tell you this means it’s negative or a false positive.
Fibro, chronic fatigue…or chronic Lyme?
You might be diagnosed with fibromyalgia or chronic fatigue syndrome, but what’s most likely going on is chronic Lyme disease, an illness whose existence is simply disbelieved by a majority of physicians in the US.
There are two reasons for their disbelief.
- First, they reason, if you did have Lyme you were treated with antibiotics and got better. The Lyme, caused by Borrelia burgdorferi, is gone. Get it out of your mind.
- Next, your blood test was only “equivocal,” not positive.
But the doctors who treat chronic Lyme (dubbed by patients as LLD for Lyme literate doctors) would answer:
- What if your first course of antibiotics was inadequate? We now know that antibiotics are needed for 21 days.
- What if the antibiotics suppressed, but didn’t kill, the infection?
- What if the tests being used to diagnose you are not reflecting your situation?
Lyme disease is a clinical diagnosis, meaning the doctor should listen to the patient and not rely solely on lab tests. In this regard, Lyme is like fibromyalgia, another clinical diagnosis.
Chronic Lyme symptoms and next steps
If you have chronic fatigue, find out if chronic Lyme disease could be a root cause. I know we’re all a bit overwhelmed with Covid these days, but the CDC also warns us that 476,000 people are diagnosed and treated for Lyme disease every year and that many more are probably undiagnosed and not treated.
Here’s a list of symptoms linked to chronic Lyme. Fortunately, most people have just two or three of these. By far the two most common are joint pain and exhaustion.
- Arthritis and joint pain, especially in the knees and other large joints.
- Severe headaches and neck stiffness.
- Red rashes that come and go anywhere on the body.
- Loss of muscle tone or a droop on one side of the face.
- Intermittent pain in muscles, tendons, and bones.
- Heart palpitations or irregular heartbeat.
- Episodes of dizziness or shortness of breath.
- Inflammation of the brain and spinal cord.
- Nerve pain.
- Shooting pains, numbness, and/or tingling in the hands and feet.
- Problems with short-term memory.
If you need help arranging testing, call and schedule with any of our WholeHealth Chicago practitioners for an in-person or telemedicine appointment.
Be well, and happy new year,
David Edelberg, MD