Controversial Diagnosis #6: Chronic Lyme Disease

Since no one argues about the existence of Lyme disease, right up front you should know that the controversy here centers on the word “chronic.” In my view, the arguments among physicians about whether or not such an entity exists are becoming a bit ridiculous.

First, let’s briefly cover acute Lyme disease. Although certain states have more cases than others, acute Lyme disease has been reported throughout the continental US and around the world. The average age of becoming infected is 11 and pediatricians are especially alert for the commonest signs and symptoms.

You know the story, for children and adults alike: tick bite, possible (but not always) bull’s-eye rash, flulike illness, antibiotics to treat, and you or your kid get well. This should be the end of it, but it’s not.

The Centers for Disease Control (CDC) acknowledges that it vastly underestimated the number of new cases of Lyme. For years, the CDC was convinced there were about 30,000 new cases annually. Now it’s 300,000 annually–a ten-fold increase. Despite this enormous increase, keep in mind that these are merely the cases that get diagnosed, treated correctly, and reported to the local health department by the physician.

What happens to all the people who become ill with what seems like a crummy summer flu, don’t remember having a tick bite or a rash, and either self-treat symptoms or see a doctor who doesn’t even think of Lyme? What happens to those who are correctly diagnosed but inadequately treated?

Chilling stats from ILADS
Here are a few statistics, from a top-notch, easy-to-understand website with a mouthful of a name, the International Lyme and Associated Diseases Society (ILADS).

–Fewer than 50% of people who ultimately get a Lyme diagnosis remember either a tick bite or a rash.

–40% of patients who get diagnosed with acute Lyme disease experience long-term health problems because of inadequate treatment.

–Up to 50% of ticks in Lyme-prevalent areas are infected. Locally this includes Wisconsin, Michigan, and Illinois but, significantly, Lyme-carrying tick populations are on the rise in nearly half of all counties in the US, according to the CDC.

Common sense would tell you that patients who receive inadequate treatment or those whose diagnosis of acute Lyme disease was missed altogether would likely remain ill. The most reasonable term for this would be “chronic Lyme disease” because the spiral-shaped bacteria (spirochete) known as Borrelia burgdorferi, which causes Lyme disease, remains in their bodies.

However, because a truly excellent diagnostic blood test has not yet been developed, the majority of physicians (including, for years, the CDC) took the stance that if there were no positive test results then there was no such thing as chronic Lyme. Period.

A vocal minority of physicians, with the full support of Lyme disease patients, have created support networks and associations of Lyme-literate physicians. At WholeHealth Chicago, Casey Kelley, MD, and nurse practitioner Katie McManigal focus their practices on chronic Lyme and related issues. ILADS holds meetings worldwide, with one coming up in Chicago November 1-4, 2018.

Symptoms of chronic Lyme
Recently (and it’s about time), the CDC changed its stance on Lyme. Although it still won’t  acknowledge the term “chronic Lyme disease,” its web page does list the symptoms of untreated Lyme disease. Let them call it what they want.

This is the CDC symptom list (click here for details):
–Severe headaches and neck stiffness.
–Red rashes that come and go anywhere on the body.
–Arthritis and joint pain, especially in the knees and other large joints.
–Loss of muscle tone or droop on one side of the face.
–Intermittent pain in muscles, tendons, and bones.
–Heart palpitations or irregular heart beat.
–Episodes of dizziness or shortness of breath.
–Inflammation of the brain and spinal cord.
–Nerve pain.
–Shooting pains, numbness, tingling in the hands and feet.
–Problems with short-term memory.

Importantly, the CDC acknowledges that both acute and untreated Lyme disease are clinical diagnoses, meaning the diagnosis is based on signs, symptoms, and a history of possible exposure to an infected tick. It adds that “laboratory tests are helpful if used correctly.” They advise not to perform Lyme tests on perfectly healthy people in case a false-positive result leads to unnecessary treatment.

Still, the majority of physicians do not believe chronic Lyme exists and usually have no opinion about untreated Lyme disease. The Wikipedia article on chronic Lyme is quite negative and has all the signs of having been written by Stephen Barrett, MD, of quackwatch.org. The Mayo Clinic website does offer a short description of untreated Lyme. However, a patient recently relayed that, when she called Mayo for an appointment, she was told they were not accepting patients with chronic Lyme disease. Go figure.

Prevention key
Like so many conditions, prevention is key here. If you’re tromping the wilds this summer, pay close attention to preventive strategies before you set out. Most important is keeping ticks from coming in contact with your skin in the first place. You can accomplish this by wearing long-sleeved shirts and long pants, ideally tucked into socks.

The CDC has quite a detailed page on preventing tick bites, including which pesticides to apply to your clothing.

If you need a refresher on how exactly a deer tick causes Lyme disease, click here for a Health Tip that explains it.

And if you’re interested in further reading, the book Lyme: The First Epidemic of Climate Change, by Mary Beth Pfeiffer, looks promising.

Be well,
David Edelberg, MD