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Elizabeth May's Lyme Disease Bill Needs Science, Not Emotion

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I am following up my last post to clarify a position that has been either ignored or misunderstood by the honorable member from Saanich B.C., Elizabeth May. I have done a bit of a deeper dive into the research and beyond the reviews of chronic Lyme disease (CLD) that I initially read and it appears that the differences between my critics and I are representative of a large debate that is currently underway in science; a debate that broke out of the bounds of science long ago and has become extremely emotional for some and political and economic for others.

Preferring to stay firmly within the realm of science let me say first that I do not think that May's bill C-442 is a bad idea in principle. Quite the opposite -- if the extent of Lyme disease, as suggested by reports of a large number of unreported cases, is as big as they say then we do indeed needs a national strategy to organize a coherent and effective response. Our differing positions are separated mainly by our definitions of CLD.

Chronic Lyme Defined

Who has Lyme disease:
  1. A 30-year-old female, with fever, night sweats, pelvic pain, nausea and confusion who walks her dog regularly in the fields close to home.
  2. A 10 year-old-male with headaches, nausea, double vision, confusion and neck pain.
  3. A 70-year-old male who is house bound, chronic joint pain, especially in his knees, has mild and worsening dementia and has recently developed facial paralysis called Bell's Palsy.
  4. A 45-year-old female with facial flushing, tinnitus, balance problems, frequent tendinitis, memory difficulty and who lived for the first 20 years of her life in the interior of B.C.

Figure it out? Even if you were a physician, it would be difficult. According to Maloney (2009), they ALL could. This is the problem with the symptoms lists of many CLD promoters: we all might have Lyme disease -- or not.

The diagnosis of Lyme disease is difficult. We do not have very good lab tests, but with over 70 different possible symptoms mentioned in that paper or the 25 different symptoms in the International Lyme and Associated Diseases Society (ILADS) guidelines -- many subjective like "headaches" or "joint pain" -- relying on a clinical diagnosis using these guidelines is very questionable. The ILADS guidelines admit that these symptoms could be identical to fibromyalgia or chronic fatigue syndrome -- so who is right?

I have no doubt that given the common diagnosis failure for this disease many people can go months or years without a proper diagnosis and treatment. Without definitive clinical guidelines, we either under-diagnose and leave people suffering or over-diagnose and tell everyone we have Lyme. We have to do better.

Evidence for Treatment

There have been four studies to date of long-term (up to 12 weeks) antibiotics (Kempler et al 2001(2 trials), Krupp et al 2003, Kaplen et al 2003, also see Halperin, 2008) and all four concluded that they either did not make any difference in the long term resolution of symptoms or the findings were equivocal.  Either way, none of the studies could recommend long-term antibiotics for the treatment of chronic Lyme. There is just not the evidence to support this, and the risks are significant: one in four participants in the 2003 Fallon et al study dropped out or had his or her treatment stopped because of serious side effects.

I understand the intense desire to be rid of some of these symptoms and I do not doubt that people are suffering. However, to not only give patients a long-term medication that we know probably does not work, expose them to serious harm because of it, and then charge them thousands of dollars for the privilege is decidedly unethical. We have to do better.

Bad Tests

Depending on who you talk to the ELISA test and Western Blot are either useless or adequate.  Either way, they are nowhere near good enough. But the rest of the tests out there are either bogus or not validated. Ljøstad et al 2013 reported a 90-100 per cent detection rate with ELISA using antibodies called IgG in individuals that have late stage Lyme diagnosed objectively with the much tighter European guidelines. They report that the genetic test using PCR can detect the bacteria in people with acute Lyme in the nervous system, but almost never in patients with chronic Lyme -- and the same goes for synovial fluid, the fluid in your joints. PCR tests are also susceptible to contamination in sloppy labs, so false positives are possible. IgM tests are not nearly specific enough.

Urine and synovial tests were concluded to be unsuitable by Dumler 2001, and subsequent authors, including Feder et al 2007 and Ljøstad 2013, found PCR from urine to be an unsuitable test. Overall we need a better test, and you should not trust labs that are charging hundreds of dollars to test your urine.  We have to do better.

Lyme Disease Manifesto

Clearly, the scientific evidence supporting clear diagnostic criteria and effective treatments for late or chronic Lyme is lacking, so here I offer a partial list of the goals that any national strategy for Lyme disease should have:
  1. Clear, objective clinical diagnostic criteria for all stages of the disease that do not rely on subjective symptoms. The ILADS guidelines are out of date and inadequate.
  2. A scientifically rigorous assessment of the actual prevalence of Lyme disease, in all of its stages, in Canada. Frightening conjecture like "it may be 10 times higher than we think" is not helping the debate. We need to frame the problem properly and confirm these findings.
  3. The development of a "gold-standard" laboratory diagnosis for Lyme disease at all stages in its progression.
  4. Large scale randomized controlled double-blind studies of treatment for Lyme disease in all of its stages. The risks of both under-treatment and open ended super-bug-creating treatment with antibiotics are untenable and reckless.

Social Justice

I was urged to write the last post because of a very disturbing interaction I had with a patient's family when I was on an emergency call a few weeks ago. The wife of our patient, a woman in her 90s who was quite obviously struggling with dementia told us that she had been diagnosed with "incurable" chronic Lyme disease. She did not say by whom but she told that that thus far she had spent $30,000 to treat this condition so far. I was, needless to say, quite shocked to hear this.

I am a social democrat. I believe is a strong social welfare state and believe the fight for social justice to be an essential and never ending one. The science advocacy community that I am a member of is galled by the lengths that people will go to to convince suffering Canadians that they have special knowledge that mainstream medicine is hiding or that "big pharma" and dark government agencies like the Centres for Disease Control and Health Canada want to see you suffer to line their pockets and pad their resumes. This conspiratorial thinking helps no one, and we just won't stand for it.

We offer up commentary like this not because we are trying to mislead the public, but because we believe that science can help us navigate politically charged and emotional debates like this one over Lyme disease. I am not an expert, but neither is Elizabeth May, who is a lawyer and politician. We both should be looking at all of the evidence, not just the few studies that agree with an opinion that moves us emotionally.

I hope that Monday a majority of MPs vote in favour of passing this bill. We need to identify the scope of the problem, and disease like this need a national strategy. I just hope that we can put the emotions aside and turn toward the science, otherwise we are doomed to be victims of ideology, and we have a responsibility to do better than that: paramedics and politicians alike.

Note: these posts are my opinion alone, and do not necessarily represent the opinion of my employer or of Bad Science Watch. Bad Science Watch has no opinion on this matter and I ask that you refrain from contacting me through them.

Citations

I include the following citations to aid in evaluation of my claims.  I suggest Ms. May do the same in any subsequent replies.

Dumler, J.S. (2001). Molecular Diagnosis of Lyme Disease: Review and Meta-analysis. Molecular Diagnosis 6, 1-11.

Feder, H.M., Johnson, B.J.B., O'Connell, S., Shapiro, E.D., Steere, A.C., and Wormser, G.P. (2007). A Critical Appraisal of "Chronic Lyme Disease."New England Journal of Medicine 357, 1422-1430..

Halperin, J.J. (2008). Prolonged Lyme disease treatment: Enough is enough. Neurology 70, 986-987.

Klempner, M.S., Hu, L.T., Evans, J., and Schmid, C.H. (2001). Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. The New England Journal of Medicine 345, 85.

Krupp, L.B., Hyman, L.G., Grimson, R., and Coyle, P.K. (2003). Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology 60, 1923.

Kaplan, R.F., Trevino, R.P., Johnson, G.M., and Levy, L. (2003). Cognitive function in post-treatment Lyme disease: do additional antibiotics help? Neurology 60, 1916.

Ljøstad, U., and Mygland, Å. (2013). Chronic Lyme; diagnostic and therapeutic challenges. Acta Neurologica Scandinavica 127, 38.

Maloney, Elizabeth L. (2009). The Need for Clinical Judgment in the Diagnosis and Treatment of Lyme Disease. Journal of American Physicians and Surgeons 14, 82.

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