Commonly Missed Diagnosis: The Three Faces of Lyme Disease 

It’s midsummer and the tick population is exploding. They can latch onto your ankles and fall into your hair and when they bite (which you won’t even feel), they’ll attach themselves and empty their gastrointestinal tract into your bloodstream.

Ticks are a cesspool with legs and this story can end with Lyme disease.

The total number of Lyme disease cases, caused by the organism Borrelia burgdorferi, is definitely on the rise. The current guesstimate from the Centers for Disease Control (CDC) is 476,000 a year, a dramatic increase from the 30,000 annually they estimated just a decade ago.

Moreover, even the CDC is uncertain if this is an overestimate or an underestimate. Thousands of cases are treated as Lyme but are not reported anywhere. Likewise, thousands of cases of Lyme disease are simply missed by both patient and physician only to surface years later in one of the two forms of chronic Lyme disease.

We see a lot of patients with chronic Lyme at WholeHealth Chicago, largely because Lyme carries a real prejudice from the past, when doctors told patients there was no such illness and patients believed their doctors. As a result, many people have been ill for decades.

Let’s clear the air on Lyme 

There are three faces of Lyme disease:

• Acute Lyme
• Disseminated/late-stage/untreated Lyme
• Post-treatment Lyme

Acute Lyme Disease  No one argues about the existence of acute Lyme disease. You’re in the woods in a Lyme-rich area. You get bitten by a tick, you see a red rash or you don’t, and have a flu-like illness. Doctors in the Northeast and the upper Midwest see so much of this that they simply start patients on antibiotics without waiting for any test results (which can take weeks to turn positive).

Disseminated/late-stage/untreated Lyme  Sometime in the past you (or your child) got bitten by a tick, didn’t notice it, never saw a rash, and attributed the resulting illness (headache, fever, muscle aches) to a summer flu. You got better and totally forgot about the incident.

Your symptoms went away because your immune system stepped in and did its job. Although the B. burgdorferi has spread through your body, it’s in a dormant (sleeping) state. It could remain suppressed like this for years–decades, even–and never give you a lick of trouble. You’d never be tested for Lyme disease because you’re healthy, but if you were tested you’d show positive antibodies for Lyme. Very likely quite a few healthy people living in Michigan or Wisconsin would test positive for Lyme, but since they’re fine, we don’t test or treat.

(From random patients: “I never knew I might have Lyme” or “I don’t remember any tick bite” or “I never had one of those bulls-eye rashes.” In other words, no definitive Lyme history except living or vacationing in a Lyme-rich area or going to camp in one as a kid. Is that enough history for the possibility of disseminated/late-stage/untreated Lyme? Yep!)

Other illnesses get suppressed like this. 90% of us have antibodies for Epstein-Barr, most never remembering a case of mononucleosis. Same with shingles (herpes virus), the fungus Candida, and TB. This is our immune system doing its job efficiently.

However, for some people with suppressed Lyme, let’s fast forward 20 or 30 years. Something triggers the B. burgdorferi to awaken and you start developing a plethora of seemingly unrelated symptoms (fatigue, episodes of fever, joint pains that move around your body).

You go to your doctor, who orders some basic tests and finds nothing. You look for other opinions. Someone finally does a screening test for Lyme, but the result is iffy and the doctor admits she doesn’t know what to do with it.

You finally get an appointment with a rheumatologist, who refers you to an infectious disease specialist or Mayo Clinic. Both of them tell you (really!) they’re not seeing Lyme patients because (listen up) “There’s no such thing as chronic Lyme disease.”

Here is the list of untreated Lyme symptoms from the CDC. Obviously, not all patients get all these symptoms:

• 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 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, tingling in the hands and feet.
• Problems with short-term memory.

What you have that mainstream physicians won’t recognize is disseminated/late-stage/untreated Lyme disease. You were infected but never knew it, were never diagnosed, and therefore never treated and now the once-dormant B. burgdorferi is waking up throughout your body and causing trouble.

This is why we at WholeHealth Chicago get phone consultations from all over the country beginning with “I know I’ve got Lyme but my doctor says he doesn’t know anything about it and won’t treat it.”

If you ever came across the phrase “Lyme wars,” this is it. The war, which got quite nasty, has been between infectious disease specialists in major medical centers and primary-care physicians on the front lines dealing with chronically ill patients.

The basis of the Lyme wars was the lack of a 100% conclusive test that both sides could agree on. Even now, although tests have improved, they’re far from 100%. Without a perfect test, places like Mayo were unwilling to prescribe long-term antibiotics.

On the other hand, frontline Lyme-literate physicians believe in treating the patient, not the lab test, and thus prescribe antibiotics.

Post-treatment Lyme  If all this isn’t grief enough, post-treatment Lyme disease is a third face of Lyme, one that even doctors familiar with Lyme disease argue about among themselves. These are the people who were correctly diagnosed with Lyme disease months or years earlier and by all recognized standards had adequate treatment. After treatment, they seemed much better. Not perfect, but better.

But then, even the “better” didn’t last. Over time, sometimes years later, they start having Lyme symptoms again.

What’s going on here? One of two possibilities: first, some of the organisms from the initial infection escaped the antibiotic and went into a dormant state. These are called “persisters” and necessitate another course of antibiotics.

Or, and this is a possibility as well, the dormant organisms are too dormant to trigger a Lyme infection, but instead are triggering an autoimmune-like disease. The patient’s immune system, working to suppress the dormant Lyme, is turning against the patient herself and now we’re dealing with an autoimmune disease and treat it as such.

This, by the way, is also thought to be occurring among the Covid-19 long-haulers. Is it a persistent coronavirus or has it turned into an autoimmune phenomenon?

What exactly do we mean when we say “chronic Lyme disease?” It’s either untreated/disseminated/late-stage Lyme or post-treatment Lyme, two separate manifestations of infection with B.bergdorferi. The untreated type definitely requires something (herbs, antibiotics) to kill the organism. Post-treatment Lyme often requires similar treatment, and if it fails it may be because an autoimmune component predominates.

Treating Lyme at WholeHealth Chicago

Of the three forms of Lyme disease, the one we see most frequently at WholeHealth Chicago is disseminated/late-stage/untreated Lyme.

There’s a good reason for this. First, we’re in the heart of Chicago. No ticks here. And when a kid gets a tick bite and a rash, she’s probably returning from a Lyme-rich area like Wisconsin, although more and more they’ve been to northern Illinois. Also, since Lyme has now been reported in all states and throughout Europe, travel history is less of an indicator than it was in the past. Nevertheless, most parents and doctors are knowledgeable enough to recognize acute Lyme and treat it accordingly.

We don’t see that much post-treatment Lyme because in patients in their 20s, 30s, or older who are from the Midwest, Lyme disease wasn’t ever suspected years ago, so it wasn’t treated. There could be no “post-treatment failure” because no one was treated in the first place. 

But disseminated/late-stage/untreated Lyme, that’s another story. Most of us have vacationed in Michigan or Wisconsin (and now the tick can be found throughout Northern Illinois) over the years. Did we get tick bites years ago? Probably–in fact, likely. Did some of those ticks carry Lyme? Possibly, but years ago Lyme was just appearing in the Northeast and no one looked for Lyme here in the Midwest.

Both disseminated/late-stage/untreated Lyme and post-treatment Lyme are referred to by the general public and most physicians as chronic Lyme disease. But as I said earlier, they are not the same and the treatments are different.

Disseminated/late-stage/untreated DOES require something to kill the Borrelia.

Post-treatment Lyme may require something to kill the Borrelia and, in fact, most Lyme-literate doctors will treat both forms with antibiotics, simply assuming some form of B. burgdorferi is still around and causing trouble.

Some final words about treatment

Although many Lyme-literate doctors start their patients on herbal remedies once a diagnosis is established, for many people antibiotics (and usually more than one) are needed, and often for months, sometimes with herbs too.

On the plus side, all the antibiotics are generic and not particularly expensive. Intravenous antibiotics were once popular, but newer studies have not proven them more useful than correctly prescribed oral ones. Your main monetary expenses with chronic Lyme are some of the diagnostic tests (ballpark range of $300 to $500 paid directly to the lab), which may not be covered by insurance.

Other suggested treatments might include intravenous ozone or ultraviolet therapy. Some patients swear by these while others don’t find them helpful. They are useful adjunctive treatments, but if they’re beyond your budget you can do just fine on antibiotics and herbs alone.

Finally, if a doctor tells you there’s no such thing as chronic Lyme disease, blow him a raspberry and make a quick exit.

Be well,
David Edelberg, MD  

PS: The best book on Lyme disease is Conquering Lyme Disease by Brian A Fallon, MD, and Jennifer Sotsky, MD. Dr Fallon is Director of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center. The book can be a bit technically daunting, but if you’re very interested in Lyme, this is the book to get.