HALIFAX, N.S. – A recent retweet by the province’s top doctor dismissing chronic Lyme disease as a condition based on pseudoscience and supported by a chronic Lyme cult, is being met with sharp criticism by one of Canada’s top tick experts.
“There are a lot of people who are sick and belittling them publicly is trivializing their illness and their suffering, so it’s deeply unfortunate given all of the science work and medical work that needs to be done around Lyme disease,” said Vett Lloyd, a biology professor at Mount Allison University. She also leads the university’s Lyme Research Network. “Chronic Lyme disease is not a cult. It’s not a myth.”
On Wednesday, Dr. Robert Strang, the province’s chief medical officer of health, retweeted the anonymous tweet from an account named LymeScience.
“As a former victim of the chronic Lyme cult, I feel it’s pretty important that they stop controlling the narrative around Lyme disease with their pseudoscience and misinformation,” read the opening line of the tweet.
“They’ve been called a threat to public health for good reason. But it would help to remember not everyone who falls for it is an idiot. The cult is well-funded and only growing. I’d hope most people can see more needs to be done to stop this anti-science movement.”
The Twitter account is linked to the website LymeScience.org, which offers a slew of information attempting to debunk chronic Lyme disease. But the website is not affiliated to any particular person or group.
The Chronicle Herald attempted to reach Strang to find out his motivation behind the retweet, but he declined comment.
Besides calling the statements false and inflammatory, Lloyd also said she was confused by the tweet because chronic Lyme has a couple of different meanings. She says chronic Lyme could refer to advanced untreated cases of Lyme disease or cases of the illness where the bacteria persists after treatment and the person still has infection symptoms. It’s more likely that Strang’s retweet is taking aim at the latter category, says Lloyd.
Strang told the Herald last September that the standard short-term antibiotic treatment for Lyme in the province is effective. He declined to say chronic Lyme exists and that bacteria could persist after a short course of antibiotics. But he said in some cases people have residual symptoms after being treated.
Lloyd, a Lyme disease survivor, says there’s ample evidence showing chronic Lyme is real and that short-term antibiotic treatment doesn’t always work. Lloyd was forced to travel to the U.S. to seek long-term antibiotic treatment after her standard treatment at home failed to work.
“There’s quite a bit evidence that you can have bacterial persistence after short-term treatment. My experience was that the standard treatment was not enough to return me to health.
“I required longer-term treatment to recover my health outside of Canada. I spent many years in Canada being diagnosed with everything under the sun and getting sicker and sicker but when I was treated for Lyme disease in the U.S. I got better in short order.”
She says Strang should be working to bring people on both sides of the chronic Lyme debate together instead of furthering the divide by resorting to name-calling.
Dr. Richard Dubocq, a Maine-based doctor currently treating 140 Lyme patients from Canada with long-term antibiotics, says about half of his Lyme patients live in Nova Scotia. Like Lloyd, he says he was shocked by Strang’s retweet, calling it irresponsible and an attempt to raise fear and paranoia.
“I’m just surprised that he’s allowed to send this out on the airwaves because on so many different levels it delivers false information,” said Dubocq.
Dubocq follows treatment guidelines set down by the International Lyme and Associated Diseases Society (ILADS). But those guidelines that recommend long-term antibiotic treatment in chronic or persistent cases of Lyme are not widely accepted by the North American medical community. Mainstream doctors, including in Nova Scotia, follow the standard Infectious Diseases Society of America (IDSA) guidelines for the treatment of Lyme.
But in recent years several U.S. states have passed doctor-protection laws that fall in line with ILADS guidelines, allowing physicians to treat Lyme more aggressively with longer-term antibiotics. No such laws exist in Canada.
“I recently attended the 19th annual ILADS conference in Chicago attended by over 1,000 health-care providers from around the word,” said Dubocq. “The quality of data was impeccable.”
Health Minister Randy Delorey would not make himself available for an interview but in an email statement said people should consult the department’s official Twitter account for information about Lyme disease. He did not weigh in on Strang’s retweet or offer his stance on chronic Lyme disease.
“The department reminds Nova Scotians that our clinical guidelines for the testing and treatment of Lyme disease are evidence-based and derived from national clinical guidelines,” said Delorey.
Donna Lugar, the Nova Scotia representative for the advocacy group the Canadian Lyme Disease Foundation, said Strang’s retweet is inexcusable.
“Hundreds, if not thousands, of people are struggling in this province with a chronic illness,” said Lugar. “What are we ill with, if not Lyme and/or other tick-borne diseases? Are we all mentally ill, as some doctors would suggest?”
For more: https://madisonarealymesupportgroup.com/2018/04/17/persistent-borrelia-infection-in-patients-with-ongoing-symptoms-of-lyme-disease/ Conclusions: Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined.
https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/ For the first time, Garg et al. show a 85% probability for multiple infectionsincluding not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses….In addition to tick-borne co-infections and non-tick-borne opportunistic infections, pleomorphic Borrelia persistent forms may induce distinct immune responses in patients by having different antigenic properties compared to typical spirochetes32,33,34,35. Nonetheless, current LD diagnostic tools do not include Borrelia persistent forms, tick-borne co-infections, and non-tick-borne opportunistic infections.
http://lymerick.net/persistent-borreliosis.htm Microscopy, Culture or PCR-verified cases of persistent [seronegative] Lyme Borreliosis