Ticked Off: Lyme’s Mystery Illness

Health Tips / Ticked Off: Lyme’s Mystery Illness

In H.G. Wells’ 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 against 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. We’ve already seen evidence of this with swine flu, bird flu, 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, 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 to feed on you, ambling along, communing with nature, 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 one, a guide to ticks by region.

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 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 doesn’t 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 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, 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’ll dare to open a screened window to breathe some fresh air. Let them have their world and me mine.)

Chronic Lyme disease debate

A three-week course of doxycycline cures Lyme disease 80% of the time. The real problem occurs in people who get infected but are never diagnosed and treated, and 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 patients 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, about 20% may or may not remember having Lyme. Those who remember having Lyme may even remember treatment, which obviously has 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 these patients will respond well to antibiotics months or even years after the initial infection. Ironically (and this is painful to write), some of these patients–even with evidence of disease–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: You’ve given me a course of antibiotics appropriate 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.

Doctor: No, you don’t. 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 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 19th 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 (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 system simply yanks medical licenses or insurance companies drop these doctors 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.

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).

PTLDS is equated with other conditions in which there are residual symptoms but no evidence of active infection, like infectious mononucleosis or Guillain-Barré syndrome. An especially nasty subset of majority physicians take on the always handy blame-the-patient tactic, saying in no uncertain terms, “All your tests are negative, you need psychiatric help.”  (This, of course, is a sentence all too familiar to those who have gone through the learning curve of physicians trying to figure out how to treat fibromyalgia/chronic fatigue syndrome.)

A vocal minority of physicians disagrees completely

The minority doctors protest this name change and believe the term chronic Lyme disease should remain in place. But even among these Lyme-literate physicians, there’s no real unanimity on a treatment protocol.

One group of minority 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. The film shows how doctors were literally drummed out of the profession for providing this treatment, forced to relinquish their licenses and driven into bankruptcy by lawsuits from insurance companies who wanted their money back because unproven treatments were used.

The other group of minority physicians, which accepts the diagnosis of chronic Lyme disease, is focused less on Rambo-like antibiotics to clear every last spirochete and more on strengthening the patient’s immune system so it can clear the disease itself. Again this harkens back to the 19th century. Antoine Bechamp, a biologist known in medical history as a 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 a dangerous fringe group today’s doctors who emphasize strengthening the terrain of the host.

This group of physicians treating Lyme by strengthening the patient herself (there are several of us here in Chicago) focuses on nutrition, detoxification, herbal/homeopathic remedies, and stress reduction therapies like the emotional freedom technique and cognitive behavioral therapy.

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 and 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 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, get antibiotic treatment. If you test negative, chronic Lyme is unlikely.
  • If after antibiotic treatment your symptoms persist, begin alternative therapies to detoxify yourself and strengthen your immune system.

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

Be well,
David Edelberg, MD

0 thoughts on “Ticked Off: Lyme’s Mystery Illness

    I do check C4a and CD57 tests. These are measures of different kinds of white blood cells. They are useful as they show patterns that are associated with chronic Lyme and mold illnesses. They are not perfect (no Lyme test is), but they are good parameters to follow to help determine if the immune system is recovering during treatment.

    Dr. Kelley
    Posted April 12, 2016 at 9:16 am

    Terrific article. There’s the ELISA and Western Blot and the full testing down by IGENX, which is supposed to be very good. But do you put any stock in the C4A and HD-57 tests/levels? Apparently, high C4 and low HD indicate lyme or mold in a lot of folks?

    Posted April 11, 2016 at 1:34 pm

    I’ve been diagnosed with Chronic Lyme Disease and have been looking for doctors who can treat.


    Kathleen Packard
    Posted December 2, 2015 at 1:07 pm

      Dr. Kelley at WholeHealth Chicago is an excellent resource.

      Dr. R
      Posted December 2, 2015 at 9:15 pm

    Looking for a doctor in the dupage county/chicago area that treats chronic lyme. Seems impossible to find. Do you have some names?

    Posted July 15, 2014 at 2:08 am

      The experts we recommend are Dr. Casey Kelley at WholeHealth Chicago and Dr. Keith Berndston in Park Ridge.

      Dr. R
      Posted July 15, 2014 at 1:35 pm

    I had Lyme disease before it was called
    Lyme. This is best info/advise on Lyme I’ve read yet.

    Howard Blume
    Posted April 22, 2014 at 2:08 pm

    Several weeks of infection before antibodies convert from negative to positive

    Dr E
    Posted April 1, 2014 at 3:03 pm

    Northeastern Illinois readers should be informed that deer ticks carrying the Lyme spirochete are not just hiding out in deep, dark woods, but could be right in your own backyard, especially if you live close to any branches of the Chicago River in Cook County, near the Des Plaines River in Cook, Will, DuPage, and Lake Counties, and anywhere in the metro Chicago area where there are grassy (especially unmowed) open meadows and prairies. Yes, even in Chicago proper.
    Having worked outdoors for four summers in a high Lyme area (natural prairie, ravine, and dune areas north of Waukegan IL) from 2010-2013, and seeing my share of deer ticks, I found the absolute best preventive is a Permethrin spray which you apply to your clothes, then hang to dry, the evening before an excursion in the field. I found this much more effective than DEET; ticks just roll off dead from Permethrin treated clothing. Using Permethrin, I survived those four summers with no fully attached deer ticks in high deer tick (and proven Lyme) areas, although I did find a number of dying and dead ones many times when I returned from the field in the evening.
    Last summer, I was accompanied by a college intern that I can only say, at the beginning of the summer, suffered from what I’ll term “male invincibility syndrome” (an all-too-often affliction of college lads). He refused to let the thought of deer ticks worry him, and used no tick preventive. Only two weeks into the summer he developed the tell-tale bulls-eye rash, and was successfully treated with Doxy. At least he learned his lesson, and he subsequently bought and used enough DEET to fill a sporting supply store the rest of the summer. It seemed to work for him since he managed to remain tick free from that point on. Oh- one important point I learned from him – the bulls-eye rash, if it appears, is not always at the location of the tick bite, but can be anywhere on the body. He remembers the attached tick on his forearm, but the diagnostic bulls-eye rash was on his thigh.

    Margo Milde
    Posted April 1, 2014 at 3:01 pm

    So how long would one have to have the bacteria in the blood before it would test positive on a Lyme’s test? i

    Posted April 1, 2014 at 1:05 pm

    “If you test positive for Lyme, get antibiotic treatment. If you test negative, chronic Lyme is unlikely.” As one who has been ill for years, and has finally been diagnosed with Lyme Disease, I disagree with this statement. Chronic Lyme is NOT ruled out by a negative test, especially if the testing that is done is the ELISA (which misses over half the cases right off the bat) and the standard Western Blot used by most physicians. I had two standard Western Blots done, both with negative results and continued to decline drastically in health. According to ILADS, “Lyme disease is known to inhibit the immune system and twenty to thirty percent of patients have falsely negative antibody tests.” I am among the 20-30%. Through other laboratory testing by Lyme Literate MDs, I was able to confirm a diagnosis of Lyme Disease and finally begin to pick up the pieces that this awful and disabling illness has caused and slowly rebuild my life. And then there’s the issue of the co-infections! They are worthy of their own blog post as they can be as bad or worse than Borrelia!

    Posted April 1, 2014 at 12:19 pm

    Hi Lisa
    I didn’t want to overwhelm readers. Lyme seemed a good start. Will discuss others in future Health Tips

    Dr E
    Posted April 1, 2014 at 10:58 am

    Hi Dr. David- this is a nice piece but you are totally ignoring any information of the numerous co infections that most dog and deer ticks carry. In Illinois we have found Babesia, Ehrlichia, Lyme disease and Rocky Mountain spotted fever in our infected dogs and cats. Also you make no mention of infections from mother to child. We have a plethora of evidence and documentation of momma dog or cats infections being transmitted to puppies and kittens. IF only the word got out about the theory of mosquitoes being a vector for disease now and the link to autism in this country. I have Chronic Lyme disease.

    Posted April 1, 2014 at 10:16 am

    Just a note to let you know how much I enjoy and appreciate your newsletter and articles. Thank you.

    Michael Callaway
    Posted April 1, 2014 at 8:34 am

    Dr E
    There is a lengthy article about Lyme Disease published in the New Yorker in the last year which states there are two other diseases transmitted by the tick which do not respond to the course of antibiotics. At this time no one has a remedy( in NYC) and the only success comes from a doc who follows the protocol you advise. It doesn’t cure the patient but makes their life more normal. It’s a great investigative piece of journalism. I hope you get a chance to read it. Love your blog. K

    Katharine Fenton-Hathaway
    Posted April 1, 2014 at 6:29 am

    Excellent article on Lyme. I saw the documentary. It was fascinating and sad. I recommend it to anyone who loves Nature and likes to spend time in the woods, on trails, outdoors. Thank you Dr Edelberg for another fine writing.

    Posted April 1, 2014 at 6:21 am

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