The Purple Paper – a publication of the National Collaborating Centre for Infectious Diseases, Canada.
[CanLyme note: The comments below are a review by our expert science reviewers in light of some of the content in the now published Purple Paper. This paper will be used in university settings, and cited. It is an example of how young minds are pulled in one direction only, and never given the entire argument. Taxpayers are mad, that their tax dollars were used to support the poorly contrived old guard unsupported dogma once again, and taxpayers are demanding better, via their politicians. They are unwilling to continue to pay for a system that causes disabling and lethal harm to them and their families. Amazingly, this paper was actually reviewed by peers who are supposed to be our experts, and, it was allowed to stand! In no other academic setting would this be allowed. Grade 12 biology students properly spell Borrelia burgdorferi, it is not “bergdorferi” as in the paper. This reflects poorly on Canada, and on the quality of the paper’s peer reviewers. It appears that the “Collaborating Centre” is not very collaborative as not one of our experts have ever been asked for input, yet tax dollars supported this, inappropriately. Their goal appears to be to instill dogma, in that they collaborate only with those who share a similar lack of want for proper, ethical, open evidence-based discussion. We say this because patients have been trying for years to have their experts and representatives taken seriously as collaborators only to be shut out at every level. Patients are the most important stakeholder. This is a disgraceful abuse of our tax dollars and it has to change.]
Page 1. Borrelia’s effect on ticks is complex – and it most certainly is not a saprophyte. Possibly the author meant symbiotic. Or not. It’s hard to tell and that wouldn’t necessarily be correct either.
Page 1. The EM rash is hardly pathognomic. Literature citation on this point was poor – unfortunate as many people fail to get treated because their rash does not look like the wikipedia
rash and that is what their physicians are told to look for. [or, as in most cases does not appear at all. Current research indicates only a small subset of Borrelia burgdorferi sl. will cause a rash of any kind, and of those, only 9% take the over-emphasized bull’s eye form.]
Page 1. “Treatment is straight forward, …”
Treatment is only straightforward if one does not require the treatment to be successful. It is possible that this statement was meant to refer only to the acute phase – the phrasing is ambiguous.
Page 1. “To date there is no definitive proof of continuing infection following treatment.6,7,8”.
This statement is correct only if one does not read, or accept, the literature showing otherwise [and, if one does not concern themselves with the tens of thousands of human cases showing otherwise… it is remarkable how tax payer funded research dollars are never directed toward actually looking for this disease in humans, only in drugs to make us feel slightly better, occasionally. The drugs do not get us back to work, or off of the disability payment system, and many have serious side effects. Why are some of the thousands of Canadians who did benefit greatly with longer term antibiotic treatment periods not studied? Is it because there is no incentive within the infectious disease community to truly evaluate the situation? It certainly appears that way because infectious disease doctors regularly refuse to even see a patient suspected of Lyme Disease unless they have a positive two-tier test, a test that has been shown in much literature and acknowledged by Health Canada, to be unable to detect the genetic diversity of Borrelia, and does not even do a good job at detecting what the two-tier test is designed for.]
Table 1.
This table does show the pronounced discrepancy in infection incidence across the border. But, since when does New Hampshire and not Maine border New Brunswick? Similarly, Maine does not border Nova Scotia.
Page 3. Adult ticks also overwinter.
Page 4 Tick surveillance – the first paragraph contradicts current public health policy which considers most ticks adventitious unless shown otherwise.
Page 4. A reference for the unlabelled and untitled figure on the risk of transmission with attachment time would be desirable.
Page 5. The bit on the limitations of the current focus on endemic sites is good – but why not go one step further and say that worrying about endemic sites is not clinically useful?
Page 6. Section 6, last paragraph. The author seems to be eliding tick and human populations in his discussion of the situation in British Columbia.
Page 7. Why are they advocating the use of WCS ELISAs, which have a long history of poor sensitivity and specificity?
Typos throughout.
As well, the statistics used for case numbers only represent what the poor testing model detected, already shown to be incapable of detecting a wide range of Borrelia. They have no idea how many cases of borreliosis occur in Canada whatsoever. Lyme Disease is a borreliosis, not caused only by what their poor test is designed to detect. Also, treatment research is completely unavailable on anything other than Borrelia burgdoferi, laboratory strain B31 as that was used to enrol participants, so to suggest they have evidence that longer treatments do not work is incorrect. Of human research done on treatment, it was inconclusive at best but the animal model research was quite definitive, 3 months of antibiotics do not eradicate active infection in some.
The Purple Paper is a disgrace!
The untruths and skewed facts in this paper disrespect anyone who has ever suffered, or had a friend or loved one suffer from lyme disease.
The newest studies are available…Why were they not used in this paper?
I am so ashamed of the medical care standards for lyme disease in this country. Negligent and out-of-date.
Shame on the author, and shame on the peer review committee.