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.

 

New Books on Lyme May be Game Changers

I received several Lyme related books for Christmas. I breezed through Dr. Neil Spector’s book “Gone in a Heartbeat” and am slowly making my way through “Conquering Lyme Disease” by Brian A Fallon, MD and Jennifer Sotsky, MD of the Columbia University Medical Center. Both these books are written by highly respected Doctors and are filled with an incredible amount of information.

I think “Conquering Lyme Disease” and Mary Beth Pfeiffer’s soon to be released “Lyme: The First Epidemic of Climate Change” could be a game changers in the world of Lyme and tick borne diseases. There was a particular part in “Conquering Lyme Disease” that I have shared far and wide:

“Fortunately, science has now created a bridge that brings together the opposing viewpoints.

– Previously chronic persistent subjective symptoms after Lyme disease were not studied because these were considered rare or inconsequential. Now this symptom complex is recognized as a potentially debilitating condition with widespread effects on the nervous, immune, and rheumatologic systems.

• While the exact prevalence is debatable, various studies demonstrate that 5 percent to 20 percent of patients experience symptom persistence and functional impairment for six months or longer (Bechtold et al. 2017; Marques 2008).

• Among patients with persistent symptoms seeking to participate in the U.S. clinical trials of post-treatment Lyme disease, the degree of physical functional impairment among patients was recorded as severe, comparable to patients with congestive heart failure (Klempner et al.2001). The degree of fatigue was comparable to that experienced by individuals with multiple sclerosis, and the degree of pain was comparable to that experienced by individuals after surgery (Fallon et al. 2008). While this does not mean that most patients with post-treatment Lyme disease syndrome experience such severe symptoms and functional deficits, these results do confirm that there is a range of symptoms and of functional impairment that in some cases can be quite severe.

– Previously the laboratory testing for Lyme disease was considered adequate. Now these tests are recognized as limited, outdated, and not sufficiently informative. Researchers around the world are competing with one another to develop assays that are more sensitive in early and late Lyme disease and that provide clarity on whether infection is still present.

– Previously the suggestion that infection with B. burgdorferi might persist after standard courses of antibiotic treatment was considered implausible. Now the persistence of nonculturable B. burgdorferi spirochetes or fragments despite treatment is recognized as a fact in numerous animal models of Lyme disease. Researchers are now trying to determine whether these persistent spirochetes induce local tissue inflammation; if they do, that might account for symptoms. A study (Hodzic et al. 2014) in mice demonstrated that the host tissue modulates its cytokine expression in response to the persistent spirochetes, but there was no evidence of local tissue inflammation. This research continues.

– Previously it was thought that standard antibiotics like doxycycline and amoxicillin eradicate all Borrelia. Now it is recognized in the laboratory setting that these antibiotics eradicate most of the spirochetes that cause Lyme disease but not all. Identifying better antimicrobials to eradicate the “persistent Borrelia” is currently an intense focus of investigation, as is determining whether these new antimicrobial approaches, which are effective in the lab setting, will translate into better outcomes in the animal models.”

The above is valuable information and, from what I am given to understand, most, if not all, will also be discussed in Mary Beth Pfeiffer’s soon to be published book, “Lyme: The First Epidemic of Climate Change”. I can’t wait to receive that one in April! I also can’t wait to hear her speak in Halifax, Nova Scotia, on Saturday, May 5th, at our 2nd Annual Lyme Information Session. Lots of very important information will be shared. Mark it on your calendar.

IN THE WOODS? NOT OUT OF THE WOODS! TICKS CAN BE ACTIVE ALL YEAR!

I recently had a chance to talk to CBC News about the fact that ticks can be active anytime temperatures are over 4 Celsius which means, with our ever-changing climate, you can find a tick on you and your pets in December, January, or any time of the year. It is amazing the number of people that think of ticks as just a Spring thing. I guess that may have something to do with the fact that most of the news about ticks, and the diseases that they can carry, happen mostly in May which is generally thought of as Lyme Disease Awareness Month.

It is also amazing that many people feel that as long as they are not in the woods, they are safe (the title of this post probably doesn’t help, but I thought it was catchy). Ticks have now found their ways into local parks, school yards, and onto residential properties (even in cities). They can be deposited anywhere animals travel and birds land. Not a hiker? You can still be at risk! Although not all ticks carry disease, and there are certainly areas of a higher, and lower, concentration of ticks and a higher, and lower, percentage carrying disease, it’s time to rethink our opinion of ticks and the diseases/illnesses that they can carry.

We need to change the mindset of anyone and everyone that spends time outdoors, whether it is for sport, relaxation, work or any other reason. Ticks are here to stay and bite prevention needs to become a daily routine. If you just add a quick brush down before you go inside, toss your clothes in the dryer on high for about 20 minutes, and shower and tick check soon after being outside, that will help considerably. For those working, or spending long periods of time, in high risk areas I would strongly recommend you look into permethrin treated clothes.

Now that tick “season” and flu season can be one and the same, the prevention of bites is of utmost importance. If you don’t get a rash, which is fairly common, and just have flu-like symptoms soon after a bite, what do you think the likelihood of you, or your Doctor, thinking Lyme and tick borne diseases? If I were to hazard a guess, I would say that the likelihood is just about nil.

Although the immune system of some people can fight the bacteria/illnesses transmitted, there may be a time when your immune system is compromised and symptoms can flair. If you haven’t been doing your regular tick checks and prevention measures, it is fairly common not to know about a bite. The little buggers are so small and stealthy many bites are missed. MANY! Unfortunately, for some, this can result in a steady climb of the number of symptoms and the number of systems affected. Trying to find an answer for this steady decline in health can take weeks, months, or even years. For some people, that answer is never received.

Because we generally hear in Canada that Lyme and tick borne diseases are rare, hard to get and easy to treat, many do not take the issue as seriously as they should. This needs to change. The CDC notes early signs and symptoms and later signs and symptoms of untreated Lyme – https://www.cdc.gov/lyme/signs_symptoms/index.html. Of course, this does not take into consideration any symptoms one may have due to co-infections (other illnesses/viruses/diseases transmitted at the same time as Lyme). The symptoms can be many and can affect any and all systems in your body. Lyme and several other tick borne illnesses can kill!

Time to take this issue seriously – all year! Protect yourself, your family and your pets!