With Summer’s Arrival, A Lyme Disease Refresher

In H.G. Wells’ novel (and Steven Spielberg’s movie) War of the Worlds, aliens from Mars invade earth, fully intending to destroy it. Earthlings are losing against the Martians until suddenly the latter start dying off. Scientists later discover the aliens had no immunity against earth’s bacteria and paid the price with their lives.

With the current Lyme disease situation, we’re the immune-weak aliens. We invaded and cleared forests and by doing so became the victims of microbes harmless to the animals carrying them. We’ve seen evidence of this with swine flu, bird flu, the Zika virus, the Elizabethkingia bacterium, and SARS. Climate change may also be a contributing factor.

The bacterium that causes Lyme disease, Borrelia burgdorferi, is classified as a spirochete, meaning it’s spiral-shaped, a cousin to syphilis. Borrelia live quite contentedly in forest mice, who do not get Lyme disease. Then a particular species of tick (the black-legged tick/deer tick) sucks mouse blood and hops over to feed on a deer, which generally do not get Lyme disease either. Or the tick hops onto you, out enjoying a summer day, communing with nature.

Unfortunately, unlike the mouse or the deer, you have no immunity against Borrelia.

The tick attaches its head and mouth to you by secreting a gummy substance called cementum. While gorging on your blood it injects the Borrelia spirochete into your bloodstream. If you spot a tick attached to you, remove it ASAP with pointed tweezers as shown in this animation. It may not be a deer tick–and not all deer ticks carry Borrelia— but it’s well established that the faster you remove an infected tick the less chance you have of developing Lyme.

Save your tick in a jar so you can identify its type using a resource such as this one, a guide to ticks by region.

Infection, symptoms, and treatment

If you do get infected with Borrelia, you’ll be coming down with what’s called acute Lyme disease. You’ll feel like you have a bad case of flu: fever, headaches, joint pains, muscle aches, brain fog. Much has been made of the famous bull’s eye red ring at the site of the bite, but since it does not appear in nearly 25% of people with Lyme, doctors no longer use it in deciding whether or not to start treatment with antibiotics.

The diagnosis of Lyme is a clinical one, based on symptoms and your doctor’s physical examination. Lab tests are useless at this point. The screening test for Lyme looks for antibodies your immune system creates in response to infection. You simply don’t have time to wait the weeks needed for your test to register the antibodies and convert from a negative to positive result.

As far as antibiotics go, doxycycline is quite safe. If you live in an area where Lyme disease is appearing, you’ve been bitten, and the tick is engorged with your blood and has likely been attached for awhile, virtually all doctors will recommend a course of antibiotics. A previous Health Tip told of my associate Dr. Paul Rubin’s personal experience with Lyme, acquired in the jungles around Madison, Wisconsin.

(I myself am writing this Health Tip looking out on a forest from a glass-enclosed porch. In the past 30 minutes deer, raccoon, fox, geese, and even feral chipmunks have ambled past. Occasionally, I dare to open a screened window to breathe in some fresh air. Let them have their world and me mine.)

Chronic Lyme disease debate

If you’ve retrieved a tick that’s infected you with Lyme, removed it, and received your four weeks of antibiotics, there’s an 80% chance you’ll be fully cured and your Lyme will become history. Real problems occur in two groups:

1. The remaining 20% who are not treated successfully.
2. Those who got infected but didn’t know it and were never diagnosed or treated in the first place.

One wouldn’t think this issue would generate vicious and truly juvenile battles among physicians, but doctors can be just as crazy as everyone else.

Common sense would tell you that a perfectly good descriptor for the people in these two groups would be chronic Lyme disease. Here’s the scene, years after infection: these patients are seeing doctors for a smorgasbord of symptoms very similar to fibromyalgia and chronic fatigue (CF). Most don’t even remember a tick bite. Like many with fibro and CF, they’ve seen several doctors and been told all their tests are normal (although usually they’re not tested for Lyme). Then, along the way, someone does finally run a Lyme test and lo! it’s positive.

You’d think that when presented with a symptomatic patient who tests positive for Lyme, the treatment course would be clear. After all, like late-stage syphilis, the spirochete can corkscrew its way into brain tissue, nerves, and heart muscle. Also like syphilis, many (but not all) of these patients respond well to antibiotics months or even years after the initial infection.

But tragically, and I feel my blood boiling as I write this, many of these patients–even with clear evidence of disease–are denied treatment because their doctor read somewhere that there’s no such thing as chronic Lyme disease.

Why the debate? Why withhold treatment?

Doctors who “don’t believe” chronic Lyme exists are usually the same group who deny the existence of fibromyalgia, CF, and other controversial illnesses I wrote about last week. They want evidence beyond a blood test for Lyme. When confronted with the positive Lyme test result, they’ll say “That’s not good enough. You probably had Lyme years ago. Or else it’s a false-positive.”

The conversation goes something like this:
Patient: You’ve given me a course of antibiotics appropriate for acute Lyme disease. Unfortunately, I’m still sick.
Doctor: Well, it can’t be Lyme. I’ve treated you for Lyme.
Patient: But I still feel terrible.
Doctor: You need a psychiatrist.

Or (even worse)
Patient: I’ve had fibromyalgia and chronic fatigue for years. I’ve read about chronic Lyme. Can you test me for this?
Doctor: No. There’s no such disease. You need a psychiatrist.

Or (the worst)
Patient: I’m no better. I paid for a Lyme test myself and it came out positive. Now can we start treatment?
Doctor: No. I don’t know anything about that lab. Really, please go to a psychiatrist.

Lyme Wars: majority and minority

The Lyme Wars are an embarrassing mess for the medical profession. By way of introduction, let me say we do this to ourselves far too often. We think that being loud and pushy and powerful will get our point across, especially to anyone who thinks outside the mainstream medical education system.

In the 19^th century, Hungarian physician Ignaz Semmelweis discovered that a fatal infection, called childbed fever, affecting women who had just delivered babies was caused by bacteria carried into the delivery room by physicians themselves (who never washed their hands). After his ideas were summarily rejected by the medical community, Semmelweis suffered an emotional breakdown, was committed to a local asylum, and two weeks later was dead at age 47 after being beaten by guards.

Today, the physician majority encourages state boards to yank the medical licenses of the physician minority or pushes insurance companies drop the minority from their networks. BTW, The Cry and the Covenant by Morton Thompson is a superb novel about Semmelweis. No small number of teenagers became physicians after reading it.

Here’s a rough breakdown of where the physician majority stands:

Stance of the medical majority #1  Once an acute case of Lyme is treated, the story is over, the end. If any symptoms remain, whatever the cause, it’s not Lyme disease and there’s no Borrelia. In fact, to distance these symptoms from a Borrelia infection, the medical majority renamed these symptoms post-treatment Lyme disease syndrome (PTLDS) and recommend antidepressants and psychotherapy.

Stance of the medical majority #2  If you do have fibro/CF and someone does test you for Lyme and the result is positive, this test is merely showing an old, resolved infection unrelated to your current symptoms. Some majority doctors will actually prescribe a three-week antibiotic course, treating your chronic Lyme as an acute Lyme infection, which will likely be inadequate.

A vocal minority of physicians disagrees completely

A minority of doctors protest the PTLDS name change because it implies a psychiatric disorder. They believe the term chronic Lyme disease should remain in place. However, even among these Lyme-literate physicians, there’s no unanimity on a treatment protocol.

Stance of the medical minority #1  One group of Lyme-literate doctors, whose struggle with the conventional medical community was documented in the 2008 film Under Our Skin, believes that long courses of high-dose IV antibiotics are the best treatment to clear the body of Borrelia. However, many physicians, including those at WholeHealth Chicago, are uncomfortable with this potentially risky treatment, especially when more and more clinical trials show no benefit of high-dose antibiotics over placebo.

Stance of the medical minority #2  The other group of Lyme-literate physicians (we’re in this group), while fully acknowledging chronic Lyme disease, is focused not so much on Rambo-like antibiotics to clear every last spirochete, but rather on strengthening the patient’s immune system to clear the disease itself. This approach to infection was first described in the 19^th century by Antoine Bechamp, a biologist and critic of Louis Pasteur. He believed the cause of infectious disease was not bacteria alone, but how an individual could ward off bacteria. He felt this “terrain of the patient” was of greater importance than the bacterium itself. A healthy terrain could fight an infection that could kill someone with an unhealthy terrain.

We’re seeing this now with the bacterium Elizabethkingia. The only deaths that have occurred are among patients with chronic illnesses or weakened immune systems.

Here at WHC we treat chronic Lyme using a variety of approaches depending on the individual patient’s needs. Often, a combination of antibiotics is used while strengthening the patient with good nutrition, detoxification, herbal/homeopathic remedies, and stress reduction techniques. Casey Kelley, MD, focuses her practice to chronic Lyme patients, but if you have chronic Lyme you can start by seeing me.

Here’s a Lyme summary

• You’re out in the woods and get bitten by a tick. Remove it ASAP, see if it’s a deer tick, and if it is get treatment.
• You come down with an acute flu-like illness in spring, summer, or fall, it’s not flu season, you live in a Lyme-rich area, and you remember being in the woods but don’t remember a tick bite. Get treatment.
• You don’t remember either of the situations above (no woods, no bite, no Lyme), but you’re chronically exhausted, achy, brain foggy, and progressively non-functional. Get tested for Lyme.
• If you test positive for Lyme, find a Lyme-literate physician in your area. If you test negative, chronic Lyme is unlikely.

Be patient, and know that you will very likely eventually get better.

Be well,
David Edelberg, MD