What is “Chronic” Lyme? This is a question that many people have asked, yet there isn’t just one answer. It means many things, to many people.
When I think of “Chronic” Lyme, I think of people that have gone weeks, months, or years, without a diagnosis, or any treatment, and are chronically ill. I also think of those that were treated, but still have considerable symptoms that make them chronically ill. We don’t yet know why these people are still ill but it could be because the treatment started too late, there are other issues at play such as co-infections, or the immune system has been impacted. Many of these people are so ill that they can no longer go to school, work, or sustain any quality of life. When one is chronically ill, and has been for a long period of time, one does not care what it is called, yet many doctors fixate on the name.
Some would refer to people as having Post Treatment Lyme Disease Syndrome but considerable research has determined that Borrelia burgdorferi can survive antibiotic treatment. More research is required in this regard but without the proper funding to be designated for this research, many questions will continue to remain unanswered.
The focus on the name of what chronically ill people have seems to overshadow actually trying to find out how to treat these people and get them well. Many doctors ridicule those that say that they have “Chronic” Lyme. They call them “Lyme Loonies”, members of the “Lyme Cult” and basically treat them with disrespect and show a lack of compassion, or interest, in helping these people. Many patients actually have PTSD because of how doctors have treated them. Many will stop going to doctors or stop mentioning anything about Lyme when they go to a new doctor which can result in procedures or treatments that actually make them sicker.
Here in Nova Scotia, our Chief Medical Officer recently Retweeted a Tweet that said:
“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. 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.”
When this was brought to my attention my blood began to boil as I initially couldn’t believe that the Chief Medical Officer would so blatantly show his disdain for those that try to educate others to the fact that Lyme isn’t just a rash and flu-like symptoms. However, I unfortunately fairly quickly realized that, yes, I could believe he would be this inconsiderate of hundreds, if not thousands, of chronically ill people in this province, as he has been a thorn in our side for many years. Although he has advised that his knowledge of Lyme comes from the “experts”, it is concerning how little he actually knows about Lyme and Tick-borne diseases, yet he appears not open to learning anything from anyone other than his “experts”. Even when Zoologists, Biologists, Doctors, Researchers, Patient Representatives, etc., try to provide him with more up-to-date, science-based, information on the issue.
This same doctor also steadfastly denies that ticks can be active all year if temperatures are favorable. He still refers to “Tick season” as starting in April or May and ending in early Fall. There is considerable research to now suggest otherwise.
I was recently made aware of a Neurologist in this province that asked his patient if he was a member of the “Lyme Cult” when he was asked if all the symptoms that this person has been experiencing for over a year could be attributable to Lyme. The patient didn’t say anything about “Chronic” Lyme. He just wondered if his symptoms could be a result of the tick bite that he had received a year before. Another doctor once said that he wasn’t “convincingly convinced” that Lyme was anything more than a rash and flu-like symptoms, yet it is quite clearly described on the CDC website and the Health Canada website that Lyme can have three stages: Acute, Early disseminated and Late disseminated.
At a recent presentation by two NS doctors about Lyme and an upcoming research project I inquired as to what one doctor thought of the book “Conquering Lyme Disease” by doctors at the Columbia University Medical Centre. He advised that he hadn’t read it and that it had differing opinions. However, when it comes to past research done by one of the co-authors, Dr. Brian Fallon, regarding Lyme testing at private labs, this same doctor refers to the research quite frequently, even though there have been improvements to at least one lab referred to since that research was undertaken. There are a considerable number of “differing opinions” when it comes to Lyme and Tick-borne diseases, that’s why you need to read more than one article or peruse more than one website.
This same doctor that noted “differing opinions” has advised that there are over a million people in Canada with Medically Unexplained Symptoms (MUS). How many of these people could be chronically ill because of a tick bite which was never seen and subsequently never diagnosed? Testing is not 100% accurate for Lyme and doesn’t cover other Tick-borne diseases. What are we missing?
It’s time for people to really look into the issue. There is research being published on a regular basis that questions the status quo. There are groups of researchers in the US, Canada, Europe, and elsewhere, working together in an effort to come up with better tests and treatments and trying to answer the many questions that are, even after all these years, still unanswered like can Lyme be “chronic”.
In the meantime, prevention is key!