[Lyme disease is actually Lyme borreliosis. an infection caused by many different strains/genotypes of Borrelia bacteria]
How can one rationalize making progress from the patient’s expert perspective when officially, by tax payer funded microbiologists, opinion is put forward as fact with no supporting science. Dr. Todd Hatchette attended the recent three day conference in Ottawa during which a wide diversity of evidence was presented, and patient experience was presented.
Dr. Todd Hatchette is interviewed by CTV Atlantic reporter after the conference yet his statements simply relate the dogma of the past decades.
- There is no good evidence to support his statement that early Lyme “usually presents with a rash”. His statement was sadly supported in the interview by nice pictures we have all seen many times of target like rashes. In reality, current research indicates most people will get no rash. In fact, a Nova Scotia patient study of children with confirmed Lyme borreliosis indicated only 18% had any rash. https://canlyme.com/?p=5688 As well, current research indicates only a small subset of the bacteria Borrelia will cause a rash of any kind and of those that do only 9% will form the over-imprinted target (bull’s eye) form.https://canlyme.com/?p=4363 and http://www.ncbi.nlm.nih.gov/pubmed/17945460 Patients are still being told Canada wide by physicians that if they have no bull’s eye rash, they cannot have Lyme disease because of the education they are getting that a Lyme patient, “usually presents with a rash”.
- Dr. Hatchette then gives the classic definition of early disseminated Lyme disease as 1) meningitis, an infection of the lining of the brain, 2) Lyme arthritis, and 3) he says it is “classically associated with Bell’s palsy”, the drooping of one side of the face due to nerve involvement. In reality, if you continue to define Lyme borreliosis by these three presentations, you will miss most cases of Lyme borrleiosis. Most people do not get defined meningitis, Lyme arthritis, nor Bell’s palsy and there is no evidence to support that scenario. If you only study people with those symptoms, and disregard the much larger population who experience much more diverse and generalized symptoms, then you are designing a disease definition to the exclusion of the greater majority with the disease.
- He definitively states the most common North American symptom of Lyme borreliosis is arthritis. Again this is not supported by evidence. Lyme late stage symptoms vary widely from person to person and is likely mediated by which strain or genotype of the Lyme bacteria you have been infected with. He authoritatively states that neurological symptoms are less common. Most symptoms that patients report are in fact neurological, in complete contrast to his comment that these are less common.
- He further states that people with Lyme borreliosis who have not improved after one or two months of antibiotic intervention now have this ill defined “Post Lyme Disease Syndrome”. He completely ignores volumes of research, and the evidence presented at the conference by well published experts from leading universities that you cannot define “post Lyme” by poorly contrived guidelines that limit treatment to one or two months of antibiotics. Evidence is quite abundant that those patients who are still sick with symptoms have not entered at all into the “post Lyme” realm, they have active Lyme borreliosis infection in most cases. No one would limit other common diseases to an off-the-cuff treatment period ie. tuberculosis, so why when evidence is so clear, is Lyme borreliosis so ravaged and discriminated against by poor medical politics?
- He says it takes 36 hours for the tick to feed on you to infect you yet evidence is indicating much less time may be required. Current research indicates otherwise, “Partially fed ticks who then re-attach to a new host can transmit Lyme disease within 24 hours 83% of the time according to study.” https://canlyme.com/?p=7396 Why are we not studying this in conjunction with Lyme patient experts?
- His comments regarding Lyme testing by “labs in the United States that are not accurate” indicating that, “studies have been shown that up to 50% of their tests are false positive”. This again is a misrepresentation of the truth. The studies that have been done have shown that the tests which provincial and federal labs purchase from huge for profit companies are no better than a toss of a coin and, they cannot even report the same blood sample with the same result each time. There was wide discordance from lab to lab, test to test. They have huge “false negative” rates which are exactly why current tests in Canada cannot be used in the diagnosis. A negative Canadian test tells the physician and patient nothing about whether they have a Lyme borrleiosis or not. Patients in every province are being denied health care based upon these terrible tests.
What this should tell every tax payer, and those governing bodies that disperse research dollars is that until there is open and transparent dialogue between the ‘authorities’ and patients and their experts, then our tax dollars are being used against every one of us and our family members.
Patients and their experts must be on governing boards, on policy making panels, and active participants in healthy democratic debate. If there is no debate in science then it is no longer science, it is politics. Politics in a democratic society requires debate.