Here’s What You Should Know About Lyme Disease

In H.G. Wells’s novel (and Steven Spielberg’s movie) War of the Worlds, aliens invade Earth, fully intending to destroy it. Despite our best efforts to defend ourselves, we’re clearly losing until suddenly all the aliens start dying off. Scientists later discover the aliens had no immunity to Earth’s bacteria. The evil aliens were out of their territory and paid the price with their lives.

With the current Lyme disease situation, we’re the aliens. By invading and clearing our forests we become susceptible to whatever microbes happen to be living there, harmless to the animals carrying them but not necessarily to us. We’ve already seen evidence of this with swine flu, bird flu, and SARS.

Climate change may also be a contributing factor. You can read all about this in Mary Beth Pfeiffer’s frightening Lyme: The First Epidemic of Climate Change.

How Lyme starts
The bacterium that causes Lyme disease, Borrelia burgdorferi, is classified as a spirochete, meaning it’s spiral shaped, and is 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 it hops onto you, obviously not a deer and with no immunity against Borrelia.

The tick attaches its head and mouth to you by secreting a gummy substance called cementum. At the same time it’s 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 guide to ticks by region.

There are several other tick-borne illnesses, so if you’ve got symptoms suggestive of Lyme but your tests are negative, ask to be tested for co-infections, including Babesia, Anaplasma, Bartonella, and Ehrlichia. Wisconsin researchers estimate that well over half of deer ticks are carrying Borrelia and/or one of the co-infections.

By the way, if you want to reduce the tick population in your yard, raise chickens. It’s perfectly legal in Chicago (and most suburbs) and you get to enjoy the eggs. If an opossum is living under your porch, let it stay. America’s only marsupial thrives on ticks.

Infection, symptoms, and treatment
If you do get infected with Borrelia, you’ll feel like you have a bad case of flu: fever, headaches, joint pain, 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 and this can take weeks. You simply don’t have time to wait for your test to convert from a negative to positive result.

One very important point: the average age for acquiring Lyme disease is 11. That’s right. Lyme is most commonly seen by pediatricians, and doctors practicing in Lyme-rich areas are usually good at diagnosing it.

As far as antibiotics go, doxycycline is quite safe. If you live in an area where Lyme disease is appearing, you’ve been bitten, the tick is engorged with your blood, and has likely been attached for a while, virtually all doctors will recommend a course of antibiotics.

(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’ll dare to open a screened window to breathe some fresh air. Let them have their world and me mine. Some people say things like “I am one with nature.” Not me. I am two with nature.)

Chronic Lyme debate
A three-week course of doxycycline cures Lyme disease 80% of the time. The real problem occurs in people who get infected and are never diagnosed and treated, but also in those who are unsuccessfully treated in the first place. One wouldn’t think this issue would generate vicious and truly juvenile battles among physicians, but apparently doctors are just as crazy as everyone else.

The debate revolves around people who have a smorgasbord of symptoms that are very similar to those associated with fibromyalgia and chronic fatigue syndrome. Like people with fibro, these patients have usually seen several doctors and been told everything is normal. Then, along the way someone tests them for Lyme disease and they test positive.

Of this group, roughly 20% may or may not remember being bitten by a tick or receiving treatment for acute Lyme disease. Those who remember having Lyme may also remember treatment, which obviously had been unsuccessful. Whether or not they remember having Lyme disease, though, their symptoms plus a positive blood test result does indicate there’s still Borrelia in their bodies.

Like late-stage syphilis, the spirochete can corkscrew its way into brain tissue, nerves, and heart muscle. Also like syphilis, most of the people in this group will respond well to antibiotics months or even years after the initial infection. It pains me to write that some of these patients–even with evidence of disease and positive test results–are denied treatment because their doctor read somewhere that there’s no such thing as chronic Lyme disease.

The remaining 80% of symptomatic patients who test positive for Lyme after what they thought was adequate treatment aren’t any better off. They become victims of what has been appropriately dubbed The Lyme Wars. The conversation goes something like this:

Patient: Remember last year when you gave me a course of antibiotics for 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. Can I get some more tests?

Doctor: No. You need 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 doctors do this to ourselves 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 affecting women who had just delivered babies, called childbed fever, was caused by bacteria carried into the delivery room by physicians themselves (they 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, in some areas of the country, local medical boards move to pull the medical licenses of Lyme-literate physicians or insurance companies simply stop paying them. Here’s a news piece on the Lyme Wars.

The official stance of the medical majority is that once a course of antibiotics has been given to a person with Lyme, the story is over, the end. If any symptoms remain, whatever the cause of these symptoms might be, it’s not Lyme disease and there’s no Borrelia. In fact, to distance these symptoms from Borrelia the medical majority has renamed this spectrum of symptoms post-treatment Lyme disease syndrome (PTLDS) and classified it as a somatoform disorder, a polite way of telling you it’s all in your head.

PTLDS is similar to other conditions in which there are residual symptoms but no evidence of active infection, like infectious mononucleosis (Epstein Barr) or Guillain-Barré syndrome. An especially nasty subset of majority physicians take a blame-the-patient tactic, saying in no uncertain terms, “All your tests are negative, you need psychiatric help.”

These words are all too familiar to people who have fibromyalgia/chronic fatigue syndrome or complex regional pain syndrome (CRPS).

A vocal minority of physicians disagrees completely
A small handful of physicians protested against the name PTLDS because it stigmatized a patently unwell patient with a psychiatric disorder. They insisted on calling it was it is: chronic Lyme disease.

But among these Lyme-literate physicians, there’s no real unanimity on a treatment protocol.

One group of Lyme-literate doctors, whose struggles with the conventional medical community were 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 (myself included) are uncomfortable with this potentially risky treatment, especially when some clinical trials indicate no benefit of high-dose antibiotics over placebo.

Under Our Skin shows how doctors were literally drummed out of the profession for providing this IV treatment. They were forced to relinquish their licenses and driven into bankruptcy by lawsuits from insurance companies who wanted refunds because they’d been paying for unproven treatments.

Strengthening terrain
The other group of Lyme-literate doctors is focused less on Rambo-like antibiotics to clear every last spirochete and more on strengthening the patient’s immune system so the body can heal itself. This harkens back to the 19^th century. Antoine Bechamp, a biologist known in medical history as a fierce rival of Louis Pasteur, believed the cause of infection was not bacteria alone. Equally important, he believed, was the health status of the patient, referred to as the “terrain.”

A healthy terrain could ward off infections that could kill someone with an unhealthy terrain. Lumped together as “germ theory denialists” (which they are not), conventional physicians dismiss as dangerous today’s doctors who emphasize strengthening the terrain of the host.

The physicians who treat Lyme by strengthening the patient (there are several of us here in Chicago) usually start by giving antibiotics for about three months, but also focus on, and ultimately switch over to, nutrition, detoxification, herbal/homeopathic remedies, and stress reduction therapies.

More and more Lyme-literate doctors are adding ozone therapy, in which you receive a transfusion of a small amount of your own blood after bubbling it with ozone (O3 in comparison to oxygen, O2). Ozone therapy is used in a wide variety of chronic illnesses, including Lyme, and acts by strengthening the immune system to suppress the Borrelia.

The word suppress is important. Lyme disease is one of the chronic infections caused by what are called “stealth organisms.” Tuberculosis is one, Epstein Barr and Herpesvirus are others. When most people are infected with these organisms, they feel nothing in particular except maybe a flu-like illness. Most 11-year-old kids bitten by infected ticks don’t become ill (so they’re never treated) because their immune systems have done a good job of inactivating the Borrelia. If you tested a lot of perfectly healthy people living in a Lyme-rich area for Lyme disease, you’d see a lot of positive test results. But you wouldn’t treat these people because their immune systems are doing just fine.

With chronic Lyme, something (usually stress, self-neglect, or lack of tending to the principles of good health—nutrition, movement, sleep) temporarily weakens the immune system, and the Borrelia rush in.

A good approach to Lyme treatment includes:
–Weakening the awakened organism with antibiotics.
–Strengthening the immune system to get the organism back to its dormant (sleeping) state.

In other words, you’ll never get rid of every last Borrelia in your body, but inactivating it and then improving your terrain are perfectly acceptable goals.

Here’s a Lyme summary
–You’re out in the woods and get bitten by a tick. Remove it ASAP, check to 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 when it’s not flu season, you live in a Lyme-rich area, and you remember being in the woods. Get treatment.
–You don’t remember any 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, get antibiotic treatment. If you test negative, chronic Lyme is unlikely.
–During and after antibiotic treatment, begin alternative therapies to detoxify yourself and strengthen your immune system using all the modalities listed above–nutrition, detoxification, herbal/homeopathic remedies, and stress reduction therapies.

Please be patient. Very likely you’ll eventually get better.

Be well,
David Edelberg, MD