Questionable tests and diagnoses, treatments making symptoms worse, experts with questionable backgrounds… Microbiologist and infectious disease specialist Mirabelle Kelly invites us to be wary of certain American references in terms of diseases transmitted by ticks, including Lyme disease and babesiosis.
“It’s not because it costs something that it’s better, there are precautions to be taken,” underlined the DD Kelly at the public inquiry into the suicide of Amélie Champagne, a 22-year-old Montreal student afflicted for years with symptoms resembling those of Lyme disease.
Microbiologist at Granby and Cowansville hospitals, the DD Kelly spoke of his experiences with patients who, judging that “the tests in Quebec are not good”, received positive results from American laboratories.
One of these reports required confirmation from a large American subcontractor… who said they never received the sample. The lab where the patient purchased her test admitted that it had “never been sent for confirmation” and that the result had been obtained “by an in-house test which was never validated”.
“I’m not saying it’s a widespread process, but it’s an example. You have to ask yourself questions. »
When another patient came to him with a positive result for the parasite Babesia odocoilei, she contacted the American lab, T Lab, by telephone and in writing. “I never got an answer, so it’s hard to comment on the value of this and to really believe in it. »
“Reliable” tests
The tests used in the Quebec health system “are reliable, validated, verified, subject to quality controls and use the same algorithm as university laboratories elsewhere in the world,” argued the DD Kelly, who was also part of an advisory committee for the National Institute of Excellence in Health and Social Services (INESSS).
This is not the case for certain “in-house” American tests, which belong to laboratories like IGeneX. They use an algorithm “different from that used in American university centers,” warns the microbiologist.
Ontario and Nova Scotia have issued warnings about the use of non-standardized tests because it can lead to erroneous conclusions.
The DD Mirabelle Kelly, microbiologist and infectious disease specialist
Even the American Food and Drug Administration, which historically did not interfere too much with laboratory-developed tests (LDT), has decided to tackle their “proliferation” and “growing concerns about their safety and efficiency “. It recently published a draft regulation to better regulate them.
“These doubtful diagnoses, we can say, can lead to treatments [qui] can have side effects,” explained Dr.D Kelly, citing Mepron (trade name for atovaquone, a treatment used against malaria and babesiosis).
In more than 10% of cases, Mepron can cause headaches, insomnia, depression, pain or weakness, which can add to the chronic symptoms these “vulnerable patients” already suffer from. search for answers.”
As for prolonged treatment with antibiotics, they “can have side effects, toxicity, lead to the development of resistance [aux antibiotiques] and alteration of the digestive flora”.
Popular beliefs
The DD Kelly did not comment on M’s caseme Champagne, but his presentation overlapped with several elements heard during the public inquiry.
The young woman had received three negative results for Lyme disease in Quebec, but private doctors suggested that she had this infection, as well as bartonellosis and babesiosis. She had also taken an American “research test” and started treatments with Mepron and antibiotics. Overwhelmed by multiple symptoms and convinced that she had the chronic form of Lyme disease, the Montreal student had done a lot of reading online on the subject.
The DD Kelly reframed some popular references in her presentation.
Endocrinologist Henry Lindner, who gives presentations on chronic bartonellosis and babesiosis, is “on trial for bad practices” for having “prescribed huge doses of cortisone for chronic babesiosis, which caused intestinal perforation and advanced osteoporosis in a patient.
Raphael Stricker, who previously chaired the International Lyme and Associated Diseases Society (ILADS), had one of his articles withdrawn by the New England Journal of Medicine (NEJM) in 1991 after it was discovered that he had falsified data.
As for babesiosis, extremely rare in humans in Canada but present in certain American regions, it mainly comes from the parasite Babesia microti. A 2021 scientific article claims that Babesia odocoilei is also responsible for babesiosis in humans, but it is “the only one I found”, indicated the DD Kelly.
Such an article may lead patients to believe that they are suffering from undetectable babesiosis because it is caused by a parasite other than that detected by standard tests. It was published in a scientific journal whose influence rating (3.9) is well below that of the Lancet (148) or the NEJM (129), noted the DD Kelly, adding that his scientific editor was Raphael Stricker.