Feb 26, 2011

The Great Lyme Debate

Over the past few years, I have considered the possibility of Lyme disease (LD) as the cause of my problems. Fatigue, body aches, sweats...all come with Lyme territory.

The other night I watched an episode of "Mystery ER" (lame, I know...) and saw the story of a woman with exactly my symptoms. I watched riveted - is it possible that this could be what's wrong with me?

After years of losing her life to feeling chronically awful and being diagnosed with depression, the woman on the TV show was finally diagnosed with chronic lyme disease and was treated with intravenous antibiotics...by the end of the episode, she had fully recovered.

Before I was sick I spent a lot of time in the woods hiking and rock climbing. There were plenty of opportunities for a tick to get attached to me, although I don't remember ever seeing one. To date, I've been tested twice and found to have a negative ELISA. That should be the end of the story, but is it?

A recent Canadian headline told of 13 people who were tested for Lyme Disease (LD), for whom the results were Interpreted Incorrectly. This is no doubt a black mark on the Winnipeg testing service, but probably not much for the average person to worry about.

What may be of more interest to the public is the possibility that there are thousands of misdiagnosed cases of LD, cases not found because of faulty testing and a resistance in the medical community towards the idea of a chronic LD. ( A study of Connecticut doctors found that only 2% believed in the existence of chronic lyme disease and provided treatment).

Lyme Disease, in its early stages is well recognized as a valid diagnosis. However, there is disagreement about the reliability of the tests (which are performed in Canada by government laboratories). And disagreement about the validity of the disease itself (see Proof That Chronic Lyme Disease Exists, 2010)

Using the CDC criteria, Canada uses a two-step process that begins with a screening ELISA, which, if positive, is followed by the Western Blot. A 2010 literature review found that "Due to B. burgdorferi strain variation and other factors (see following sections), the ELISA for LD has only about 50% sensitivity". Further, a 2010 Slovakian study found that that all of the 32 patients in their study "had specific antiborrelial antibodies confirmed by using the western blot in spite of negative ELISA"

I was particularly interested to learn that one study found a link between a positive ANA and LD, saying, "Patients with disseminated LD often have positive antinuclear antibody tests with titers as high as 1:640". Hmmm...Sound familiar?

On one side of the fence, there are patient advocacy groups who believe that LD is under-diagnosed and under-reported. They guard in secrecy the list of "Lyme Literate" physicians, lest those doctors be censured by their medical colleges.

On the other side are the physicians; left to make sense of patient's vague symptoms in the absence of clear diagnostic tests.

From my perspective, there are some serious questions about LD that Canadians need to be be asking.
  • If chronic LD is a real entity, shouldn't we be able to test for it conclusively?
  • If ELISA is unreliable, then why are we using it? Why can't Canadian patients request (or self-pay) for the superior Western Blot test?
  • Are the risks of antibiotic treatment so high that they truly outweigh giving self-diagnosed patients the benefit of the doubt?
If the medical community itself can't figure this one out, what hope do patients have of making sense of this issue?

And still, the "what if" questions haunt me...
  • What if my illness is treatable?
  • What if I don't always have to live this way?
  • What if this could be treated, but no one ever finds it?
Do I believe the ELISA? Or do I head to the USA for tests that the CDC tell me might be offered by unscrupulous labs?



  1. Elisa is an ok test, no test is 100% reliable.
    A western blot is something ridiculously cheap like $40 from a regular lab in the US.
    The debate is interesting - it's very hard to tell which "side" is right.

  2. The not knowing is really maddening. Even when I had a diagnosis with the mental health stuff, finding a more accurate one just sort of clarified all of the messed up stuff I couldn't make sense of. I don't know why it brings so much relief to put a label on things...maybe because if you give it a name, you're one step closer to alleviating it. I hope that you find some answers soon...and more importantly, that you start feeling better.

  3. I offer a model for developing the differential diagnosis that includes the patient's theory as to the cause of symptoms. In a fun exercise called, "Prove the patient right", I ponder with the patient what it takes to reliably support their theory or refute it. Your Lyme theory is treatable, so it might be a good one to chase, as opposed to some terminal condition, which has less hope associated with it. This was a Nov 2010 post excerpt.
    As a result of the exploration in my example blog post, the physician (and the patient, but maybe with different perspectives) develops a differential diagnosis, listing mentally or in print the potential diagnoses that relate to the chief complaint of the patient. I tend to use a pneumonic: SPIT standing for Serious, Probable, Interesting, Treatable, reminding me of four major categories of possible diagnoses.

    What is serious that could be causing the weakened grip strength of the patient mentioned above? Stroke, Herniated intervertebral disc in the cervical spine, malignancy of the spinal cord may be considered among hundreds of other possibilities. What is probable, meaning common in my practice for persons with the same symptoms in the age group of the patient. Overuse syndrome, carpal tunnel syndrome are two possibilities. What is interesting, meaning what is the patients theory as to cause of the chief complaint. I ask the patient and assembled relatives, if indicated, "What do you think is happening to cause this?" Their theory is the most important one we're pondering. If they are right, it's wonderful, indicating good self knowledge and insight. They might say carpal tunnel syndrome or what they don't want to have, "I'm worried that it might be multiple sclerosis like my mother had." Lastly, treatable implies something we can treat and resolve or control, correlating with our mutual experience. This might again drive us to think of overuse syndrome or carpal tunnel syndrome (mild, early).

    Other models of diagnostic thinking used by family physicians include the biopsychosocial model, the principles of family medicine and the natural history of disease. All of the interactions, both subjective and objective are recorded in a SOAP note (Subjective, Objective, Assessment and Plan) in the medical record, helping to better focus the patients and physicians as to the deficiency and the goal desired by treating it, if indicated.

  4. I want Dr. Synonymous for my doc. Never had a doc ask me what I think is wrong. Ever.

    Anyway, just wanted to say I read an article in a current health magazine (Health or Shape or argh, I can't remember, Sofia Varga from Modern Family is on the cover) that highlighted other parasitic diseases that aren't on docs' radars at all but are on the rise. Might be worth a look at the article if Lymes is a possibility. Might actually be a different parasite.