Lyme Disease Misinformation

There is a considerable amount of misinformation about Lyme and Tick-borne diseases but there are a few things that I hear about frequently. I thought I would try to clear some of the issues up, as much as possible.

Bull’s-eye Rash:

Although the bull’s-eye rash is a telltale sign of Lyme, many do not realize that this particular rash is only one of a variety of erythema migrans (EM) rashes possible. In actuality, only a small percentage of people will get this particular manifestation.

An EM rash may (approx. 20%, or more, do not get any rash) show up three to 30 days after a bite. The rash generally expands slowly over days and can spread to 30 centimetres across. It’s typically not itchy or painful but might feel warm to the touch. An Erythema migrans rash is one of the hallmarks of Lyme disease. (Mayo Clinic)

The EM and bull’s-eye rashes are frequently used interchangeably as if they mean the exact same thing resulting in many people (doctors and the public) thinking that they do not have Lyme because their rash is different, or they didn’t have one.

To add to the equation, those with darker skin may not see the rash, leaving even more people without the benefit of the “hallmark” of Lyme disease.

ELISA/Western Blot Lyme tests:

I frequently hear that if a Lyme test comes back negative, people are told by their doctors that they do not have Lyme. According to a Canadian Adverse Reaction Newsletter (Volume 2 – Issue 4), published by the Government of Canada in October 2012 (and verified to be accurate as of May, 2019), the Lyme disease test kits have sensitivity and specificity limitations and should not be the primary basis for making diagnostic or treatment decisions – https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/health-product-infowatch/canadian-adverse-reaction-newsletter-volume-22-issue-4-october-2012.html#a1.

The Newsletter goes on to state that there are at least three reasons for a false-negative: (a) a slow antibody response early in the course of the disease, (b) genetic diversity of Borrelia burgdoferi and (c) treatment with antibiotics.

In the book “Conquering Lyme Disease”, by doctors at Columbia University Medical Centre, other reasons for a possible false-negative are noted.

In other words, just because your test is negative does not mean you do not have Lyme or a Lyme-like illness.

Case Numbers:

The confirmed/probable case numbers used in Nova Scotia, and Canada, are thought of as being fairly low and therefore many are not overly concerned about the possibility of contracting Lyme or Tick-borne diseases. However, research has recently been undertaken on what the true numbers may be in this country. Of course, as is the case in all things Lyme, there is conflicting information. However, both research documents do agree that there are more annual cases than the confirmed/probable case numbers would suggest.

The first research published – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/  suggested that only 1 in 10 cases are reported. After this research was published, another document was prepared in response that suggested that although the “precise degree of under-reporting is unknown”, it is not as high as the first research document would suggest – https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.

From my own personal experience, I know that many cases are not included in the confirmed/probable case numbers, mine included, because many people are clinically diagnosed but may have had more subjective clinical evidence rather than objective clinical evidence. With my over 40 symptoms, except for an erythema migrans rash (at least I didn’t see one), swollen knees or other visible, easily confirmed symptoms, my doctor still clinically diagnosed me with Tick-borne diseases. I had a multitude of symptoms, affecting numerous systems, and lived and traveled in a highly endemic area. That is the way Lyme and Tick-borne diseases is supposed to be diagnosed.

Whether the true annual numbers are three times higher, 10 times higher, or more, there are enough cases that those in known endemic areas, and elsewhere, should undertake regular preventative measures and consider Lyme and Tick-borne diseases when health issues arise that are not easily diagnosable. Even then there is a risk of a misdiagnosis as many symptoms overlap and if you have a number of symptoms that do not fit under your particular diagnosis, or you have been diagnosed with a number of auto-immune illnesses, consider the possibility of a Tick-borne disease, or two.

Educate yourself as many health care professionals are lacking in this regard.

Bridgewater Lyme Conference

The first Bridgewater Lyme Conference has come and gone. Hundreds attended the two day event held on November 16 and 17, 2019, in the Bridgewater Cineplex, Bridgewater, Nova Scotia.

The Conference was the first of its kind in Nova Scotia. All stakeholders were invited to participate and there were presentations by doctors, researchers, patients and alternative/complementary health care providers.

The Conference was developed to seek common ground among patients, the medical community, and the research community. It provided diverse perspectives on the prevention, diagnosis, and treatment of Lyme and Tick-borne diseases.

The mandate for the newly formed not for profit society, the Lunenburg Lyme Association (LLA), is to build awareness about the prevention, symptoms, diagnosis and treatment of Lyme and Tick-borne diseases, with a focus on the needs of Lyme patients. The ability for physicians, Lyme researchers, scientists and others to share and respond to diverse perspectives on the complexity of the disease; and to seek common ground among Lyme disease patients and the medical community is a key component of their mandate.

The two-day event included a morning just for health care professionals and a morning for the general public. Providing two sessions, with minor changes in presenters/presentations, was seen to be beneficial for all.

There was a considerable amount of press prior to and after the event which can be found in a number of places, including on the Lunenburg Lyme Association Facebook page. The following are just a few:

The Conference was taped and it is hoped that the presentations will be available for viewing shortly. I will update this post with the links once they become available.

Attendees were also asked to complete a short survey after the event and the responses have, for the most part, been very positive.

I am very happy to be a part of the Lunenburg Lyme Association as an Advisor. This Association will be ensuring that there will be legacy pieces as part of the conference, including two videos on prevention which should be available early in 2020.

There is also already discussion on whether another event will take place. Here’s hoping!

What is “Chronic” Lyme

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!

 

 

 

May is Lyme Disease Awareness Month

Around the world, May is generally known as Lyme Disease Awareness Month. The information starts flying fast and furious at this time of year and, sometimes, it can be incorrect, especially as it pertains to tick removal. This is the time of year when a variety of different recommendations make the rounds on social media, and elsewhere, some of which can actually result in any pathogens that the tick is carrying being transmitted to whomever, or whatever, the tick is attached to.

Therefore, one should stay with the tried and true, safe, methods, such as utilizing fine-tipped tweezers, or a proper tick removal tool, and getting as close to the skin as possible, without squeezing the body of the tick, slowly pulling straight out allowing time for the tick to retract its barbs. The tick has also secreted a cement like substance to help hold it in place so if you pull it out too quickly, you will pull out a lot of skin. There are other safe methods as well which can be found on the Canadian Lyme Disease Foundation (CanLyme) website –  https://canlyme.com/lyme-prevention/tick-removal/.

A lot of information also tends to go around showing the bull’s eye rash, which is the better known Lyme rash. However, only a small percentage of people actually get this type of rash. Other types of erythema migrans (EM) rashes are more common and it’s also possible not to have a rash at all. If you are one of the “lucky” ones though, a growing bull’s eye rash is a definitive sign of Lyme, no testing required, and treatment should start immediately. Don’t let anyone tell you otherwise!

Another piece of info that you may hear is that a Negative ELISA means you don’t have Lyme. This is incorrect! There can be several reasons for a False Negative ELISA. Most doctors are aware that if the test is given too soon after the bite, there is a good chance the test will result in a False Negative because antibodies have not had a chance to build. However, they may not know that antibiotic use after the bite, or a different strain of Borrelia, can also result in a False Negative. There is some indication that later stages can also result in False Negatives. Do not take a Negative test to mean you don’t have Lyme!

Unfortunately, many in the health care field are still lacking in even the most basic of information on Lyme and Tick-borne diseases so one must do their own research and take information with you for appointments. There is a lot of evidence-based literature now available and more research, Case Reports, and information is being posted daily. Know where to look for the best quality information and understand that there is quite a bit of misinformation out there.

You know your own body and when it comes to Lyme and Tick-borne diseases, you have to be your own advocate.

Ticks – Nature’s “Dirty Needle”

Lyme gets all the attention, but what about all the other things ticks can be carrying along with, or instead of, Lyme? Depending upon where you live there can be a large variety of viruses, bacteria, pathogens, and goodness knows what else, that the ticks can be carrying.

In Nova Scotia, several different things have been found. There are several “co-infections” that are noted in the Nova Scotia Tick Borne Diseases Response Plan (https://novascotia.ca/dhw/CDPC/documents/2017_Tick_Borne_Disease_Response_Plan.pdf), but there are others that researchers at Dalhousie University have found. Dalhousie has been doing research on both blacklegged(deer) and dog(wood) ticks. They have found things in both.

There are also anecdotal stories of people with meat allergies in Nova Scotia, possibly from a Lone Star Tick. I believe I fit that bill as I had to stop eating red meat for two years after very intense reactions to pork, steak, etc. I then slowly tried to bring some back into my diet (crazy, but I love bacon, hamburger, steak!). I occasionally get away with it without any major response. Other times I’m not so lucky.

We truly do not know everything that ticks can be carrying and that’s why prevention is so important. Some of the illnesses, such as Powassan Virus, which doesn’t have a treatment, can apparently be transmitted in as little as 15 minutes.

More and more cases of a variety of “co-infections” are being diagnosed as some Doctors become more knowledgeable. However, in many areas, especially in Nova Scotia and Canada, most Doctors have little, to no, knowledge of all of the possible co-infections. Pretty hard to get a proper diagnosis if nobody knows what they are looking for.

Here are just a few possible co-infections:

  • Bartonella
  • Babesiosis
  • Powassan virus
  • Rocky Mountain Spotted Fever
  • Anaplasmosis
  • Ehrlichiosis

There are more! Some probably haven’t even been discovered yet!

Apparently, more and more ticks are carrying multiple pathogens. What are the resulting symptoms? Are the waters being muddied even more?

Have that shower shortly after coming inside! Do those daily tick checks! Do whatever you have to in order to prevent a bite!

Prevention is key! Knowledge is power!

Videos of the Presentations Made at the Lyme Information Session in Halifax, NS on May 5/18 now Available

If you were unable to attend the 2nd Annual Lyme Information Session in Halifax on Saturday, May 5/18, the videos, all but one, are now available for viewing on YouTube – https://www.youtube.com/playlist?list=PLl6c4TVQk8wpr2idVQBqGIWmxuUgRyJpE.

The remaining one will not be posted due to the fact that the presenter is concerned about the research being in the very early stages. I’m looking forward to seeing a follow-up on that one!

There was a lot of good information presented. Although some is Nova Scotia specific, much of that presented is not.

Worth a watch.

Learn!

Is “Conquering Lyme Disease” a Game Changer?

I have been taking a long time to read “Conquering Lyme Disease” by Drs. Fallon and Sotsky of the Columbia University Medical Center. It is full of research references and discussions that are meant more for those in the research and medical fields. But I’m slogging through. The title seems to suggest, to some anyway, that all the issues have been resolved and Lyme Disease has been conquered. We are still far from that unfortunately. Perhaps the title should be “How We Can Conquer Lyme Disease”. However, it does give some hope that the “great divide” can be bridged – if only people will listen and learn.

I am constantly amazed that the information that is contained therein doesn’t seem to be getting out to a wider audience. “Science Bridges the Great Divide” is the tag line yet those that have control over things like Case Definitions; diagnostics; treatment protocols, and the like, don’t seem to be aware of this information.

For instance “The objective, verifiable clinical criteria used to confirm cases for CDC surveillance, while essential for monitoring the course of disease over time for public health surveillance, have limitations when applied rigidly in the clinical setting where clinicians encounter patients who do not necessarily recall or have these “objective” markers.”

“What is the CDC’s position on the use of their surveillance criteria for clinical care? The CDC recognizes that there are clinical manifestations of Lyme disease that fall outside of the narrow criteria used for the case definition. For over two decades, the CDC’s website for the surveillance criteria has stated:

This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”

However, in Nova Scotia, and in most, if not all, of Canada, the Case Definition for Lyme Disease (https://novascotia.ca/dhw/populationhealth/surveillanceguidelines/lyme.pdf) appears to still be used for diagnosis by Doctors. Because of this, many cases are missed and not included in the numbers due to the fact that a patient has not presented with a bull’s eye rash or other “objective” markers. In many cases, the lack of these “objective” markers even prevents a patient from being tested, let alone treated. Nova Scotia’s Statement for Managing Lyme Disease (https://novascotia.ca/dhw/CDPC/documents/statement_for_managing_LD.pdf) clearly states that: “Patients with symptoms and signs of early disseminated and late Lyme disease should have serologic testing.” However, it later goes on to state: “Patients presenting with only a nonspecific febrile illness and exposure in an area of lower risk for Lyme disease should NOT be tested.” What are the Doctors to do?

At this point in time in Nova Scotia, we truly do not know what areas are of lower risk as surveillance has either stopped taking place or is not being properly undertaken. The presently utilized map showing lower and higher risk areas has not been updated since 2011 or 2012, other than to change its look. According to the brochure on Lyme disease put out by the Nova Scotia government “Blacklegged ticks have been found in all parts of Nova Scotia. No matter where you live, there is a chance that you have come into contact with a blacklegged tick.” If this is true, why would Doctors be advised NOT to test patients, especially if they have not been diagnosed with anything else. Should not all possibilities be investigated?

“Conquering Lyme Disease” does have a few things that I still believe are a bit out-of-date, based upon research I have read, but, overall, is well rewritten and well researched with many pages of references. It should be on a Must Read list for any and all medical practitioners and politicians so that we can finally move this issue forward, once and for all.