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!

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!

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.

 

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.

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!

 

 

The following information is only as accurate as the last update (August 13, 2024)! However, it is a starting point.

All sources indicate that the number of disease carrying ticks in Nova Scotia and Canada continues to climb. There are many known endemic areas throughout the country but black-legged ticks (also known as deer ticks) can now be found just about everywhere. Therefore, everyone should be aware of what to look out for and how to remove a tick if they find one. Ticks are no longer just in the woods. They can be found in manicured parks, golf courses, backyards, etc. Please make yourself knowledgeable!

Unfortunately, the black-legged ticks are not the only ticks that we have to worry about. Basically, any tick that bites a human can potentially transmit pathogens. Several things have now been found in dog (wood) ticks and Lone Star ticks have now been found sporadically in several parts of Canada, including in Nova Scotia. Lone Star ticks can cause the dreaded meat allergy and can also transmit other things.

Remember, as well, that ticks can be active all year depending upon the weather. Although they are most active in the spring and fall, they can even be around in the winter if temperatures go above 4C (and sometimes even lower!). If the summer is hot and dry they may not be as active, but they are still there, especially on damp, cooler days.

Although freeze/thaws during the winter can kill off some ticks, a consistent snow cover is good for them. They can “hibernate” and come out hungry as soon as temperatures allow.

Also important to note is that ticks can carry other diseases along with, or instead of, Lyme disease. Other diseases can include Human Granulocytic Anaplasmosis, Powassan Virus, Babesiosis, Ehrliciosis, Bartonella, Borrelia miyamoto, Rocky Mountain Spotted Fever, and Tularemia, to name just a few. New tick-borne diseases are frequently being discovered. Prevention is key as it is very hard to determine all that a tick is carrying!

Not everyone sees an attached tick as they can be very small; attach in places not easily seen; and secrete pain killers that help them go unnoticed. Many also do not get, or see, the erythema migrans rash which is a definitive sign of Lyme. For clarification purposes, the better known bull’s eye version of the erythema migrans rash is only seen in a small percentage of cases. Other types of erythema migrans rashes are more common – https://www.cdc.gov/lyme/media/pdfs/Wall-poster-The-Many-Forms-of-Lyme-Disease-Rashes-Erythema-Migrans.pdf.

Many people can go days, weeks, months, or even years, before they consider a tick bite as being the cause of their multiple symptoms.

Last, but certainly not least, the amount of time a tick has to be attached to transmit disease is really unknown at this time. There is a research article regarding this issue – “Lyme borreliosis: a review of data on transmission time after tick attachment” – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/. The sooner you get an attached tick off of you the better, but make sure you do it correctly! Powassan virus can be transmitted in as little as 15 MINUTES. Daily tick checks should be routine.

Before You Go Outdoors

–           Know where to expect ticks. Although they can be anywhere due to migratory birds, deer, rodents, etc., ticks tend to prefer moist and humid environments, particularly in or near wooded or grassy areas and near water. You may come into contact with ticks during outdoor activities around your home, such as around wood piles or in gardens, raking, or when walking through leaf litter or near shrubs. Always walk in the centre of trails in order to avoid contact with ticks.

–           Consider wearing a repellent but be aware that many repellents just keep the ticks away from the areas that are covered. Ticks may walk around until they find an area of skin without repellent. According to a June 13, 2014, Canadian Paediatric Society Document, “Icaridin is considered to be the repellent of first choice by the Public Health Agency of Canada’s Canadian Advisory Committee on Tropical Medicine and Travel for travellers six months to 12 years of age. Products containing up to 20% icaridin are considered to be safe and efficacious”. Consumer Reports had also done a review of bug repellents and recommended Sawyer Premium Insect Repellent 20% Picaridin. There is a product available in the US called Permethrin that can actually kill ticks. Products with some permethrin can be purchased in Canada. It is for use on clothing, equipment, etc., rather than on your skin. It is widely used by the US and Canadian Military on their uniforms, as well as many in the US that work or spend a lot of time outdoors. A variety of “No Fly Zone” tick and mosquito clothing is now available for adults in Canada via Mark’s. They also have a few products for dogs. There is more variety in the US, but many companies will not ship to Canada.

–           There are also natural products that can be used to repel ticks. Most of the natural products require frequent reapplication. There is a product made right here in Nova Scotia, AtlanTick Repellent Products Inc. –  https://atlantick.ca/. Arm yourself with information!

–           Try to wear light coloured clothes, with a tight weave, so that you can spot the ticks more easily and they can’t work their way through the fabric. Although not fashionable, tuck your pants into your socks and shirt into your pants so you have more time to find the ticks on your clothes before they get to your body. However, this is generally not realistic for the warmer months.

–           Two-sided sticky tape or a lint roller works well at picking unattached ticks off your clothes or body. The two-sided tape could also be used to trap them as they are traveling upwards by wrapping it around your socks, boots or pants.

–           Have a tick kit (or more than one) that includes a tick removal device (either fine-tipped tweezers or a tick removal tool that grasps the tick as close to the skin as possible without squeezing the body or twisting; antiseptic, a magnifying glass (they can be VERY small), small plastic bags/containers, bandaids, pencil, paper, scotch tape (this info is explained in more detail here – https://www.littlethings.com/diy-tick-kit/. CanLyme also has a tick kit with some of these items included – https://canlyme.com/product/tick-removal-kit/. AtlanTick also sells a kit – https://www.atlantick.ca/product-page/tick-kit.

Before You Come Indoors

Check your clothing for ticks. Brush yourself down, including your hair, prior to entering the house to prevent ticks from being carried into the house on clothing. Brush off any pet before entering the house.

After You Come Indoors

Placing clothes into a dryer on high heat for 15-20 minutes should effectively kill any missed ticks.

Shower/bathe soon after being outdoors. Showering within two hours of coming indoors has been shown to reduce your risk of getting Lyme disease as it may help wash off unattached ticks and it is also a good opportunity to do a tick check.

Check your entire body for ticks after being outdoors. Conduct a full body check upon return from potentially tick-infested areas, which even includes your back yard.  Use a hand-held or full-length mirror to view all parts of your body. In particular, check these parts of your body and your child’s body for ticks as ticks prefer warm, moist locations:

• Under the arms
• In and around the ears
• Inside belly button
• Back of the knees
• Between the toes
• In and around the hair
• In the groin area
• Around the waist
• Under any bands, such as a bra, pants, rings, etc.

What to Do if You Find an Attached Tick

If you find a tick attached to your skin, or on your pet, there’s no need to panic. There are several tick removal devices on the market, but a set of fine-tipped tweezers will remove a tick quite effectively. You can also remove a tick with string (including dental floss) if nothing else is available. There are good videos on YouTube for these methods.

1. Use fine-tipped tweezers (or a tick tool) to grasp the tick as close to the skin’s surface as possible. Do not squeeze the body.
2. Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the parts with tweezers. If you are unable to remove the parts easily consider having your Doctor remove it for you or you can wait. The remaining parts will not transmit illness, but can cause sensitivity, etc.
3. Never use your fingers as you will end up squeezing the tick which can result in the transmission of disease.
4. After removing the tick, thoroughly clean the bite area, and your hands, with rubbing alcohol, an iodine scrub, or soap and water.

This is a great, short, video posted on YouTube by AtlanTick re tick removal – https://youtu.be/P0fH_2LRiYw. They have other good videos as well.

The federal government has a good tick removal video as well – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Avoid folklore remedies such as “painting” the tick with nail polish or petroleum jelly, or using heat to make the tick detach from the skin. Also don’t spin it around with a Q-tip. Your goal is to remove the tick as quickly as possible – not waiting for it to detach. You also don’t want it to regurgitate or break off parts in your skin!

If the tick was engorged, and you don’t know how long it was attached for, you can send photos to eTick and they can provide an approximate length of time – https://www.etick.ca/. They can also tell you the type of tick. They also then record the tick on a map. You can download their app onto your phone for quick and easy use. Remember, however, that the length of time is variable for disease transmission, although the longer it is attached the greater the chance of transmission of Lyme. Some things, like Powassan virus, can apparently transmit in as little as 15 minutes. As well, it’s not just blacklegged ticks you need to worry about. Other ticks can carry and transmit other things.

Sending the tick for testing is very beneficial as many different things can be transmitted. Unfortunately, I don’t believe that there is anywhere in Canada right now that tests the ticks for free. Testing is not to be used as a diagnostic tool  as transmission may not have occurred, even if the tick was carrying something. In Canada, I believe “Geneticks”is the only company testing ticks at this time – https://www.geneticks.ca/. However, the ticks are only tested for what you ask for and testing and can be quite expensive, if you go with a full panel (which I suggest due to the steady increase of Anaplasmosis and other tick-borne diseases).

It is my opinion that tick testing should be undertaken in this province, free of charge. If you agree, please speak up.

Watch for signs of illness such as rash, fever, stiff neck, and/or other flu-like symptoms, heart issues, neurologic issues, etc., in the days and weeks following the bite, and see a health care provider if any of these develop. You may have none, or all, of the symptoms, or more, depending upon your immune system and other factors, such as what co-infections the tick was carrying. Your risk of acquiring a tick-borne illness depends on many things, including where you live, what type of tick bit you, and how long the tick was attached. If you become ill after a tick bite, see a health care provider.

Some people can apparently be asymptomatic, with symptoms not occurring until your immune system is compromised. If you suddenly start to have a variety of symptoms that can affect multiple systems, that come and go and generally are not confirmed by testing, then consider the possibility that you were bitten by a tick.

More on the Rash

You will frequently see the bull’s-eye rash as being called the rash of Lyme disease. However, an erythema migrans rash, which is the correct name of the Lyme rash, can have several manifestations, with the bull’s-eye version happening infrequently. Here is an article about the rashes that I found quite accurate (for a change) – https://www.health.com/condition/lyme-disease/lyme-disease-rashes. Some doctors are not aware of all of the different types of rashes possible and believe that without a bull’s-eye, you do not have Lyme. They will also diagnose different Lyme rashes as cellulitis, spider bite, etc. Better education for everyone is long overdue.

Reduce Ticks in Your Yard

• Modify your landscape. Regularly remove leaf litter and clear tall grasses and brush around homes, and place wood chips or gravel between lawns and wooded areas to keep ticks away from recreational areas, and keep play areas and playground equipment away from shrubs, bushes, and other vegetation.
• Discourage deer. Removing plants that attract deer and constructing physical barriers may help discourage deer from entering your yard and bringing ticks with them.
• Plant vegetation that repels ticks. There are several good sites. This is just one of many. – http://www.onegreenplanet.org/animalsandnature/plants-to-grow-that-repel-ticks-and-fleas/
• Ticks can be found under ground covers and Japanese Barberry plants. There is considerable information pertaining to Japanese Barberry plants and a higher incidence of black-legged ticks. Consider bushes that are elevated from the ground so that you can rake underneath or place wood chips or gravel – https://entomologytoday.org/2017/10/04/the-5-year-plan-manage-japanese-barberry-to-keep-tick-levels-low-reduce-lyme-risk/?_scpsug=crawled_129977_c9b57e70-a91d-11e7-a302-90b11c40440d#_scpsug=crawled_129977_c9b57e70-a91d-11e7-a302-90b11c40440d. 
• Do not have bird feeders close to the house. Birds can carry ticks and they can drop off anywhere. Rodents, potentially carrying ticks, also tend to hang around bird feeders. If you must feed the birds, have feeders away from your house and put wood chips or gravel around the base.

Prevent Ticks on Animals

Use tick control products to prevent family pets from bringing ticks into the home. Consult your Veterinarian and be sure to use these products according to the package instructions

LYME DISEASE:

Lyme disease is a complex and rarely understood disease that is multi-systemic in nature. It can present itself with a myriad of symptoms that can easily lead to misdiagnosis by the untrained professional.

What is Lyme?

Lyme Disease is a bacterial infection carried by various birds, rodents (such as the white-footed mouse), and potentially other small animals. There is some indication that mosquitos and other biting insects may also be vectors of this disease. It is passed between the animals and insects in this group when a tick latches onto an infected host and has a blood meal.

The spirochetes (Borrelia burgdorferi) in the infected blood enter the blood of the tick and begin another life cycle, or continue their lifecycle in the stomach of the tick. During the next phase of their life-cycle, the tick then bites a different host and possibly infects the new host with Lyme disease.

The potential symptom list is long and all of the symptoms, alone, could be the result of something else, other than the erythema migrans rash. However, if you have many, they change on a regular basis (some are cyclical or hormonal), and affect numerous systems, chances are you may have Lyme disease and/or other tick-borne diseases.

Dr. Richard Horowitz, one of the best known Lyme Literate Doctors in the world, and who has written the books “How Can I Get Better” and “Why Can’t I Get Better”, has a diagnostic form to fill out which gives you an idea whether a possible Lyme diagnosis should be pursued – https://www.eomega.org/article/is-it-lyme-disease. This questionnaire has been empirically validated with research – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590688/.

As well, in December of 2019, the following research document became available –
“The General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease” – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full – which is another clinical way to determine whether you may be dealing with tick borne diseases. This questionnaire may be accepted by your doctor more than the one prepared by Dr. Horowitz as it was prepared by a number of doctors in the US.

Another symptom checklist was developed by Dr. Burrascano, another well known Lyme doctor – https://lymediseaseassociation.org/wp-content/uploads/2009/11/DrB_SymptomList2005Pdf.pdf.

Ticks can also carry more than one disease! Depending upon where you live, the co-infections can vary.

Here are a few co-infections that have been found in Canada:

Anaplasmosis – http://www.cdc.gov/anaplasmosis/symptoms/

Ehrlichiosis – https://www.cdc.gov/ehrlichiosis/

Babesiosis – http://www.cdc.gov/parasites/babesiosis/

Powassan Virus – http://www.cdc.gov/powassan/

Borrelia miyamotoi – http://www.cdc.gov/ticks/miyamotoi.html

Rocky Mountain Spotted Fever (found in dog ticks) – http://www.cdc.gov/rmsf/

Bartonella (research from Dalhousie indicates that many ticks – both blacklegged and dog/wood – are carrying Bartonella in Nova Scotia) – http://columbia-lyme.org/patients/tbd_bartonella.html

Tularemia – https://www.cdc.gov/tularemia/index.html

Other tick borne diseases are always possible as migratory birds bring more and more ticks from a number of areas.

INFORMATION YOU SHOULD HAVE FOR YOUR DOCTOR’S VISIT:

Before you head to your GP to discuss tick-borne diseases, you should be armed with some general information as the knowledge of many Doctors on ALL stages of Lyme and tick-borne diseases is still sorely lacking. First of all, if you have a variety of symptoms and believe that you have been dealing with the issue for quite some time, you should complete one, or more of the questionnaires that are available.

If you have the tell-tale expanding Erythema migrans (EM) rash (which is a definite sign of Lyme – no testing required), you should take a photo of the rash and note the date, the size and where you were bitten (both on body and location – if known), as it might disappear before you get to a Doctor. The better known version of the EM rash is the bull’s-eye; however, a variety of other rashes are actually more common – https://www.cdc.gov/lyme/media/pdfs/Wall-poster-The-Many-Forms-of-Lyme-Disease-Rashes-Erythema-Migrans.pdf. Unfortunately many people, including doctors, still believe that the bull’s-eye is the only type of Lyme rash and other types of EM rashes may be diagnosed as cellulitis, ringworm, etc., rather than Lyme. As well, many people do not see, or get, a rash.

The ELISA, and then the Western Blot if the ELISA is positive or equivocal, are the blood tests undertaken in some areas of Canada at this time. In Nova Scotia, two different types of ELISA’s are now being undertaken, rather than using the Western Blot. This provides quicker results but can still result in a false negative. The Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012, refers to test limitations and notes that the ELISA is not 100% accurate – 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.  I had it confirmed just a few years ago that this is still applicable. As an FYI, there have been laws passed in some US states requiring Doctors to advise patients that a negative ELISA does not mean that they don’t have Lyme. We actually pursued the possibility of this in Nova Scotia back in 2015 (if I recall correctly). The NS government said that they didn’t have any say in what doctors do rather than looking into how they might be able to make it happen.

Health Canada recommends that Lyme be a clinical diagnosis, with testing supplemental. Doctors need to learn how to do this, even when a definitive Lyme rash isn’t seen!

You should also either have a copy of, or at least be knowledgeable about, the CDC website page regarding untreated Lyme symptoms as many Doctors still believe that Lyme is nothing more than a rash and flu-like symptoms – https://www.cdc.gov/lyme/signs_symptoms/index.html. The federal government website also has information on a variety of symptoms possible if untreated, as does the Nova Scotia website regarding Lyme – https://novascotia.ca/dhw/CDPC/lyme.asp.

For those with acute or early Lyme, the following information is helpful for both you and your medical professional – https://cep.health/clinical-products/early-lyme-disease/. It recommends a longer treatment than the Nova Scotia and IDSA guidelines. Hopefully, a similar document will be prepared for early and late disseminated Lyme.

If in Nova Scotia, you should have a link to, or copy of, the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease, Human Granulocytic Anaplasmosis, Babesiosis and Powassan virus infection in Nova Scotia”  –  https://novascotia.ca/dhw/cdpc/documents/statement-management-ld-hga-b-pvi.pdf. The Guidance document (formerly called the Statement for Managing Lyme Disease) also includes some general treatment guidelines and, although I don’t agree with everything it says as it follows the IDSA guidelines, it should get your Doctor started in the right direction. Along with this document, you should also be aware of the full IDSA Guidelines document from 2020, but specifically, you should be aware of the Disclaimer under the “Notes” section – https://www.idsociety.org/practice-guideline/lyme-disease/#Notes. They are guidelines only!

Although Anaplasmosis, Babesiosis, and Powassan virus have been added as Notifiable diseases, other things have been found in both blacklegged and dog ticks in Nova Scotia by researchers at Dalhousie University. The following is a presentation given by Dalhousie research students at a Lyme Conference held in 2018 in Halifax regarding the “Bacteria Prevalence of I. Scapularis and D. Variabilis in NS” – https://youtu.be/RDVE3C4QAIA. Unfortunately, there are no doubt other things now in ticks. We don’t find what we are not looking for. We also have other types of ticks now in the province that can transmit disease. Prevent is key!

Since the IDSA Lyme guidelines, which Nova Scotia follows, are guidelines only, you should have knowledge, of “Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease” – http://informahealthcare.com/doi/full/10.1586/14787210.2014.940900. This is another standard of care guideline for treating Lyme and other tick-borne illnesses which was released by the International Lyme & Associated Diseases Society (ILADS) in July of 2014. Also available are the NICE guidelines – https://www.nice.org.uk/guidance/ng95. Unfortunately, it looks like the NICE guidelines have not been updated since 2018 so doctors would no doubt question their reliability.

A research paper was published in late 2018 which was co-authored by Dr. Vett Lloyd and Dr. Ralph Hawkins regarding a staggering number of cases being misdiagnosed or undiagnosed – “Under-Detection of Lyme Disease in Canada” – https://www.mdpi.com/2227-9032/6/4/125/htm.

In response to the research published by Drs. Lloyd and Hawkins, another research document was published – https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x. As is the case with most things to do with Lyme and Tick-borne diseases, there is a difference of opinion as to how many cases are being missed in Canada. However, there is agreement that cases are being missed.

Lyme is not rare, hard to get, and easy to treat as some would still have you believe.

NEWFOUNDLAND INFO:

A few links and information that might be helpful to those in Newfoundland:

Jean Hewson is the CanLyme Representative for Newfoundland/Labrador – Jean Hewson
Email: jhewson@nf.sympatico.ca Tele is 709-722-2863

– http://www.med.mun.ca/getattachment/d7f11294-49b3-4f00-9f8a-d86891cc8348/Lyme-disease-health.aspx

– http://www.cbc.ca/news/canada/newfoundland-labrador/increased-risk-of-lyme-disease-as-more-ticks-move-to-n-l-1.3098419

– http://www.faa.gov.nl.ca/agrifoods/animals/health/lymedisease.html

– http://www.faa.gov.nl.ca/agrifoods/animals/health/pdf/ds_08_006.pdf

–http://www.health.gov.nl.ca/health/publications/diseasecontrol/s6_vectorborne_and_other_zoonotic_diseases.pdf

– http://publichealthlab.ca/service/lyme-disease-borrelia-burgdorferi/

– http://www.thewesternstar.com/news/local/2017/5/17/corner-brook-vet-confirms-first-local-case-of-lyme-disease-this-.html

NEW BRUNSWICK INFO:

There are a number of CanLyme contacts available in New Brunswick – https://canlyme.com/get-support/.

Mount Allison University, with the support of the Canadian Lyme Disease Foundation, has established a Lyme disease research node led by Dr. Vett Lloyd – https://www.mta.ca/Community/Research_and_creative/Tick_and_Lyme_disease_research/Tick___Lyme_disease_research/.

LymeNB is the registered business name for the incorporated not-for-profit New Brunswick Lyme Disease Association Inc., founded in 2016 and granted charitable status in 2018.  Its purpose is preventing tick-borne illnesses, while supporting and being a voice for those affected.  Membership is open, at no cost, to anyone touched by Lyme disease.  Its members come from all over the province and have nearly tripled since LymeNB was incorporated.  Membership application forms to join LymeNB are available on its website (www.lymenb.ca) as is contact information for its President, Janet Higgins and the facilitators for its two support groups, one in the Greater Moncton Area (Cathie Smith) and the other in the Greater Fredericton Area (Louise Billings).

LymeNB has a Facebook page (www.facebook.com/lymenb.ca), as well as a closed virtual support group site (www.facebook.com/lymechatnb.)  LymeNB offers seminars and conferences on Lyme disease to targeted groups as well as to the general public and carries out various activities to raise awareness about Lyme disease and co-infections and to provide supportive healthcare services to its members.   If you wish to reach LymeNB, please write to info@lymenb.ca

There is a Facebook page – “Tick Talk NB – Lyme Disease and other tick borne illnesses” – https://www.facebook.com/TickTalkNB/.

An excellent series was recently done by CBC Information Morning, Moncton called “A Matter of Lyme”: Vett Lloyd – Lyme Disease – http://www.cbc.ca/player/play/2696340214. There was also an interview with a Lyme sufferer (Natasha Joy Snowden), her Naturopath (Dr. Nicholas Anhorm) and her Doctor (Dr. Richard Dubocq of Albion, Maine).

– http://www2.gnb.ca/content/gnb/en/departments/ocmoh/cdc/content/vectorborne_andzoonotic/lyme.html (basically included as it mentions that ticks can be anywhere in New Brunswick and it includes some possible symptoms of untreated Lyme disease)

PEI INFO:

The CanLyme contact person in PEI is Chris Robinson, Email: canrisk_economics@yahoo.ca , Tele 902-628-9831

Very little general info about Lyme in PEI was found on-line, but this is a start:

– https://www.princeedwardisland.ca/en/information/health-and-wellness/lyme-disease-in-pei

– http://www.gov.pe.ca/photos/original/hpei_lymememo.pdf?_ga=1.167172029.2096028457.1475955983

– https://www.youtube.com/watch?v=lyQWgudLG1U&feature=youtu.be

– From a Feb. 2007 Newsletter of the Diagnostic Services Laboratory, Atlantic Veterinary College, “The Presence of Ixodes scapularis ticks and the Potential for Lyme Disease on Prince Edward Island” – http://files.upei.ca/avc/diagnosticservices/newsletters/avcds_feb2007_vol1-01.pdf

ALTERNATIVE TESTING:

Alternative testing for tick-borne diseases is available but the results are generally not accepted by non “Lyme Literate” doctors so the information is more for your own peace of mind or that of your LLMD, Naturopath, or other alternative/complementary health care provider. Testing is also not cheap and is probably going to be out-of-pocket. You may want to consider reviewing the symptom lists for other tick-borne diseases that are noted earlier in this document so that you can get an idea of what co-infections you might have. You can also see if testing for any of them is available via the mainstream medical field. Most co-infection testing is sent to the Microbiology lab in Winnipeg, rather than done locally.

Co-infections are becoming more and more common and can hinder treatment so trying to find out what you have in that regard is just as important, if not more so, than Lyme.

The three main private Labs that I am aware of are:

– http://www.igenex.com/Website/

– http://www.arminlabs.com/en

– https://dnaconnexions.com/lyme-panel-temp/

The following would be useful information to have if you are going to go the route of private testing:

–  https://www.igenex.com/testing/interpretations/lyme-disease/

–  https://sites.google.com/site/drjoneskids/lab-tests

–  https://labtestsonline.org/understanding/analytes/lyme/tab/test/

RESEARCH:

There is a lot of research going on around the world. Unfortunately, it doesn’t seem to be getting shared so there are now several spots where Lyme research is being recorded. One is a Facebook page that I started in an effort to keep track of up and coming research. I obviously don’t see it all but it’s a starting point – Research Information for Tick Borne Diseases (Lyme, Babesiosis, etc.) – https://www.facebook.com/groups/226575537496968/

There are at least two research groups in Canada working on Lyme and Tick-borne diseases. They are the Canadian Lyme Consortium – http://www.clymec.ca/ and the Canadian Lyme Disease Research Network – https://www.clydrn.ca/. Unfortunately, the Canadian Lyme Disease Research Network is controversial in the Lyme world. This group consists of many doctors/researchers in Canada that are generally known as being IDSA followers and non-believers in “Chronic” Lyme. They may end up hurting us more than helping us. Time will tell.

There is considerable research being undertaken at a variety of institutions in the US. This is one group that is hoping to change the dialogue about Lyme and Tick-borne diseases – https://www.stand4lyme.org/. Stanford University scientists are collaborating with scientists at other leading institutions, including Harvard, Johns Hopkins, Columbia, Tulane and Duke.

The following are some research documents that I refer to frequently:

–           An interesting research document worth a read – “Co-Infection of Ticks: The Rule Rather Than the Exception” – http://journals.plos.org/plosntds/article?id=10.1371%2Fjournal.pntd.0004539

–           CMAJ – “The emergence of Lyme disease in Canada” – www.cmaj.ca/content/180/12/1221.full.

–           Lyme and associated tick-borne diseases: global challenges in the context of a public health threat – www.ncbi.nlm.nih.gov/pmc/articles/PMC4042490/pdf/fcimb-04-00074.pdf.

–           Health Care Costs, Utilization and Patterns of Care following Lyme Disease – www.journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0116767.

–           Lyme Arthritis: An Emerging Clinical Problem in Nova Scotia, Canada – http://onlinelibrary.wiley.com/doi/10.1002/art.38498/full

WEBSITES:

The following websites are reasonably good sources of information.  There is a conflicting school of thought on Lyme disease and co-infections so always do your homework! I try to post information from both sides so that you can make an informed decision.

Public Health Agency of Canada – Lyme Disease – www.phac-aspc.gc.ca/id-mi/lyme-eng.php.

Public Health Agency of Canada Lyme Disease Fact Sheet – www.phac.gc.ca/id-mi/lyme-fs-eng.php

Government of Canada – Lyme disease – www.healthycanadians.gc.ca/health-sante/disease-maladie/lyme-eng.php.

The Canadian Lyme Disease Foundation – https://canlyme.com/. CanLyme has started a “Looking at Lyme” podcast which is very informative – https://canlyme.com/podcast/. They also have a YouTube Channel with videos from the Federal Framework on Lyme Disease Conference held in Ottawa in May of 2016. Worth checking out.

The Canadian Lyme Science Alliance – http://www.lymesciencealliance.org/.

Canadian Lyme Disease Research Network – https://www.clydrn.ca/

International Lyme and Associated Diseases Society (ILADS) – www.ilads.org.

University of Rhode Island TickEncounter Resource Center – http://www.tickencounter.org/.

Lyme Disease in Canada – A Federal Framework – https://www.canada.ca/en/public-health/services/publications/diseases-conditions/lyme-disease-canada-federal-framework.html.

ARTICLES/INTERVIEWS:

 The following articles/interviews are also good sources of information. There are many more as well. These are just a sampling:

CBC has stepped up with providing information on tick-borne disease. This is just a sampling:

July 13, 2024 – “Tick-spread illnesses are on the rise in Canada. Are surveillance, awareness efforts keeping up?” – https://www.cbc.ca/news/health/tick-spread-illness-second-opinion-1.7261678

July, 2024 – “Woman dies from tick-borne virus as dangerous illnesses spread” – https://www.cbc.ca/player/play/video/9.6454412

June 24, 2024 – “Anaplasmosis is a tick-borne disease that’s on the rise in Canada” – https://www.cbc.ca/radio/whitecoat/anaplasmosis-ticks-1.7239603

June 3, 2023 – “Climate change is fuelling a spike in Lyme disease cases across Canada” – https://www.cbc.ca/news/health/climate-change-lyme-disease-canada-ticks-1.6862244

The Halifax Examiner has done a number of articles on the issue. These are most, but not all:

March 26, 2024 – “More needs to be done to protect people from tick-borne diseases in Nova Scotia, advocate says” – https://www.halifaxexaminer.ca/health/more-needs-to-be-done-to-protect-people-from-tick-borne-diseases-in-nova-scotia-advocate-says/

April 19, 2023 – “Lyme disease awareness advocates disappointed by Nova Scotia premier’s lack of action” – https://www.halifaxexaminer.ca/government/province-house/lyme-disease-awareness-advocates-disappointed-by-nova-scotia-premiers-lack-of-action/

June 5, 2022     The clock is ticking, but Nova Scotia is still not acting on ticks and Lyme disease. The province has by far the highest per capita incidence of Lyme in the country but ‘Lyme Disease Awareness Month’ came and went without much awareness at all. https://www.halifaxexaminer.ca/province-house/the-clock-is-ticking-but-nova-scotia-is-still-not-acting-on-ticks-and-lyme-disease/

July 6, 2021       A plague of ticks, tick-borne diseases, and polit-ticks. Part 2: What can be done to better manage and minimize the risks of tick-borne diseases in Nova Scotia? https://www.halifaxexaminer.ca/featured/a-plague-of-ticks-tick-borne-diseases-and-poli-ticks-2/

July 5, 2021       A plague of ticks, tick-borne diseases, and polit-ticks. Part 1: Tick populations in Nova Scotia are exploding largely because of climate change and the province is Canada’s “hot spot” for Lyme disease. So, how is the province monitoring and managing tick-borne diseases and health risks? https://www.halifaxexaminer.ca/featured/a-plague-of-ticks-tick-borne-diseases-and-poli-ticks/

–  This is an excellent documentary prepared for the Lunenburg Doc Fest – https://youtu.be/Hy2G94hcSOI. It really gives you some idea what people go through to get diagnosed and treated. It also should concern you that this is a known endemic area. What happens in areas where even less is known?

– With Justin Bieber’s announcement that he is dealing with Lyme disease, there has been considerable press. Too much to link here (especially since some links are not working because there are already too many), however, just Google “Justin Bieber Lyme” and tons will come up. Most are pretty good articles.

– A great interview with Janet Sperling, Board Member of the Canadian Lyme Disease Foundation (CanLyme) – “What’s driving the explosion in Lyme disease in Canada” – https://thebigstorypodcast.ca/2020/02/10/lyme-disease/

– An article in The Chronicle Herald regarding the CDC’s recent inclusion of an acknowledgement that there is potential for Mother to fetus transmission of Lyme – https://www.thechronicleherald.ca/news/provincial/us-health-agency-acknowledges-lyme-disease-mother-to-fetus-transmission-409641/

– “Are ticks still dangerous in the winter?” – https://cottagelife.com/outdoors/are-ticks-still-dangerous-in-the-winter/. In brief, yes!

– “As ticks continue to spread in Maine, here’s what to expect in the coming years” https://bangordailynews.com/2019/12/29/act-out/as-ticks-continue-to-spread-in-maine-heres-what-to-expect-in-the-coming-years/. Although not specific to the Atlantic provinces, it’s an interesting read.

– “Lyme Disease Conference Held in Bridgewater” – https://beta.ctvnews.ca/local/atlantic/2019/11/17/1_4689797.html?fbclid=IwAR2r3MCEurft3dJyKBNp0DiJDGxBb8LSvY_rh21_Am0uuBqfUjI26p7xZSk

–  “The Lyme Wars: Major Organizations Aren’t Playing Nicely Together”- https://www.forbes.com/…/the-lyme-wars-major-organizations…/

–  “The Lyme Wars, Part 2: Which Way Should We Treat?” – https://www.forbes.com/sites/judystone/2019/08/03/the-lyme-wars-part-2-which-way-should-we-treat/

– Fox5 NY has done a number of other excellent interviews on the issue of Lyme and Tick Borne Diseases – http://www.fox5ny.com/lyme-disease. Some of the “Lyme and Reason” segments are located here.

–  An interview with Dr. Alfred Miller – NightSide – A New Perspective on Lyme Disease – https://player.fm/series/nightside-with-dan-rea-1511437/nightside-a-new-perspective-on-lyme-disease.

 –  Doctor’s Review – “Lyme disease: past, present and future” – http://doctorsreview.com/history/lyme-disease-past-present-and-future/

–  “The peril of chronic Lyme disease” by Mary Beth Pfeiffer – http://www.newsday.com/opinion/commentary/the-peril-of-chronic-lyme-disease-1.13775806.

–           CDC advises you might need multiple Lyme disease tests after a tick bite – http://abcnews.go.com/GMA/video/cdc-advises-multiple-lyme-disease-tests-tick-bite-48364357.

–           Lyme Disease: Inside America’s Mysterious Epidemic – http://www.rollingstone.com/culture/features/lyme-disease-inside-americas-mysterious-epidemic-w487776.

–           Lyme disease research, funding falling behind in Canada – http://www.cbc.ca/news/canada/manitoba/opinion-seiff-lyme-disease-1.4165151

–           Press Conference: Improving the Lyme Disease Framework – https://www.youtube.com/watch?v=1LkglyEVBw8

 –           Lyme and Reason: Dr. Steven Phillips Interview, Fox5NY – https://www.youtube.com/watch?v=Fy0ViOX7xNk&feature=share

–           Does Chronic Lyme Disease Exist – http://www.contagionlive.com/videos/does-chronic-lyme-disease-exist

–           Lyme Disease: Experts Weigh in on the Controversies – http://www.americanveterinarian.com/journals/amvet/2017/february2017/lyme-disease-experts-weigh-in-on-the-controversies

–           An excellent video prepared by the Stand4Lyme Foundation. Ten of the world’s top scientists from leading institutions discuss their scientific insights on the problems and potential solutions for Lyme disease. – “Lyme in the 21^st Century” – https://www.youtube.com/watch?v=JYhY7tquUOo.

–           A fairly high percentage of dog ticks in Nova Scotia could carry Rocky Mountain Spotted Fever – http://www.cbc.ca/news/canada/nova-scotia/lyme-disease-deer-ticks-may-not-be-the-only-ones-we-have-to-worry-about-1.3060683

–           A comparison chart of possible symptoms of co-infections – http://www.lyme-symptoms.com/LymeCoinfectionChart.html

–           An excellent interview with Dr. Neil Spector with regard to his thoughts on Lyme after his own journey- http://www.huffingtonpost.com/dana-parish/lyme-the-infectious-disea_b_9243460.html. Unfortunately, Dr. Spector passed away in June, 2020, of complications due to Epstein-Barr virus. We truly lost a hero. If you haven’t read his book, you should. It’s very insightful. All doctors should read it, as well as patients.

–           CBC – Ticked Off: The Mystery of Lyme Disease – http://www.cbc.ca/natureofthings/episodes/ticked-off-the-mystery-of-lyme-disease. Lots of extra info on the site as well, including interviews with Doctors, etc. This TV show was made into a very informative DVD worth watching as well.

 –           The Daily Climate – “Lyme disease surges north, and Canada moves out of denial” – www.dailyclimate.org/tdc-newsroom/2014/09/canada-lyme-disease-spreads. The person that wrote this, Marianne Lavelle, also wrote several other articles around the same time that are worthy of reading.

–           MacLean’s – “Health Canada’s new Lyme disease plan: You Act, We’ll Watch” – http://www.macleans.ca/society/health/health-canadas-new-lyme-disease-plan-you-act-well-watch/

FACEBOOK:

There are lots of different Facebook Pages and Groups on Lyme Disease but the following one was started to try and track the issue in Nova Scotia – “Lyme Disease in Nova Scotia & the Atlantic Provinces” or visit: www.facebook.com/pages/Lyme-Disease-In-Nova-Scotia/217895438247422. There is also a “Nova Scotia Lyme Disease Registry” which was started in an effort to have a place where those dealing with Lyme disease in Nova Scotia could be counted. The page can be found at www.facebook.com/groups/253938431456967/.

There is also a “Lyme Support Group – Atlantic Provinces” Facebook group for those unable to attend a support group in person or just want the ease of being able to ask questions of people that understand. Just ask to join. I will reach out and ask some basic questions before adding you.

PINTEREST:

Many pages dedicated to Lyme and other tick borne diseases. Donna Lugar’s is http://www.pinterest.com/donnalugar/lyme-disease-other-vector-borne-diseases-bartonell/.

FILM – “UNDER OUR SKIN”

I have purchased a copy of the award-winning documentary about Lyme disease called “Under our Skin” (www.underourskin.com), including public performance rights. If you wish to borrow the film for a group viewing, please contact me at 902-835-5643 or donna.lugar@ns.sympatico.ca.

FILM – “TICKED OFF: THE MYSTERY OF LYME DISEASE”

I have also purchased a copy of “Ticked Off: The Mystery of Lyme Disease”. There are two discs with the second disc including extended Lyme Expert Interviews. Disc one includes the show (52 minutes – different than the one shown on the Nature of Things), Lyme Expert Interviews and Lyme Patient Testimonials. This is available for personal and public viewing as performance rights were purchased. A version of this film is also available for viewing at www.cbc.ca/natureofthings/episodes/ticked-off-the-mystery-of-lyme-disease but it is the TV version not the DVD version. The DVD version is much better.

FILM – “UNDER OUR SKIN 2 – EMERGENCE”

I have purchased a copy of “Under Our Skin 2 – Emergence”. If you wish to borrow the film to view or for a group viewing, please contact me at 902-835-5643 or donna.lugar@ns.sympatico.ca.

LYME SUPPORT GROUPS IN NOVA SCOTIA

A Lyme Support Group has met in Bedford since early 2014. Since COVID, monthly Lyme Support Group meetings have been occurring on the second Tuesday of the month at noon, via Zoom. You can contact me at donna.lugar@outlook.com, 902-718-9000, to be included in an email group on any upcoming meetings/initiatives. Since the Zoom meetings are doing well and we can have people from all over the province attend, we will continue to do this even when in person meetings can happen again.

There was a Lyme Support Group in the Pictou area called the Pictou County Lyme Support Group which were meeting on the second Tuesday of every month at 7 pm in the Little Harbour Community Hall. They have a Facebook page called “Pictou County Lyme Support Group” – https://www.facebook.com/groups/2392862330953151/ but there have not been any posts since June of 2020. I’m not sure if they have been meeting virtually, but I don’t think so.

A Lyme Support Group had also been started in the Bridgewater area; however, the contact person has stepped down and a replacement has not yet been found. If interested in running a support group in that area you can reach out to me at donna.lugar@outlook.com.

There is talk about starting a Lyme Support Group in the Annapolis Royal area. I will keep you posted as I hear more.

There are many other areas throughout the province that could use Lyme Support Groups, especially for those not on social media. Anyone interested in starting one can contact me for suggestions.

For those on social media, there are lots of Facebook pages/groups that have started up. Some are very helpful. Others not so much. Be careful.

LYME SUPPORT GROUPS IN NEW BRUNSWICK

LymeNB is the registered business name for the incorporated not-for-profit New Brunswick Lyme Disease Association Inc., founded in 2016 and granted charitable status in 2018.  Its purpose is preventing tick-borne illnesses, while supporting and being a voice for those affected.  Membership is open at no cost to anyone touched by Lyme Disease.  Its members come from all over the province and have nearly tripled since LymeNB was incorporated.  Membership application forms to join LymeNB are available on its website (www.lymenb.ca) as is contact information for its President, Janet Higgins and the facilitators for its two support groups, one in the Greater Moncton Area (Cathie Smith) and the other in the Greater Fredericton Area (Louise Billings). Contact info on the LymeNB website.

LymeNB has a Facebook page (www.facebook.com/lymenb.ca) as well as a closed virtual support group site (www.facebook.com/lymechatnb.)  LymeNB offers seminars and conferences on Lyme Disease to targeted groups as well as to the general public and carries out various activities to raise awareness about Lyme disease and co-infections and to provide supportive healthcare services to its members.

If you wish to reach LymeNB, please write to info@lymenb.ca.

HEALTH CARE PROVIDERS

The following contact information is for Doctors, Naturopaths, Traditional Chinese Medicine Doctors, and Herbalists that some Support Group Members are using. This list in no way implies that I have vetted them all and am recommending their services. They are just for your information and research. They are in no particular order and are not all inclusive.

– Dr. Bryan Rade is a Naturopath at East Coast Naturopathic in Bedford.  He describes himself as being fairly knowledgeable about tick borne diseases.    Some have had good results with him – https://www.eastcoastnaturopathic.com/

– Dr. Sandra Murphy, a Naturopath in Halifax – http://nurturetherapeutics.ca.

– Dr. Ben Connelly, a Naturopath in Tantallon, NS – http://cornerstonenaturopathic.ca/

– Dr. Lois Hare, ND, Valley Naturopathic in Berwick – http://nsand.ca/members/dr-lois-hare-nd-berwick/

– Dr. Teresa Donovan, Naturopath, Root Cause Health & Wellness Clinic. Antigonish – https://oceanviewwellness.ca/our-team/teresa-donovan/

– Dr. Cheryl Karthaus, ND, East Coast Naturopathic, Bedford – https://eastcoastnaturopathic.com/dr-cheryl-karthaus-nd

– Dr. Rosalyn Hayman, ND, http://halifaxnaturopathic.ca/en/portfolio_page/dr-rosalyn-hayman-nd/

– Dr. Suzanne Coady, South Shore Wellness, Bridgewater, https://southshorewellness.janeapp.com/locations/bridgewater/book

– Dr. Jessie Short, Mahone Bay – https://drjessieshort.com/. Newer to Lyme, but has growing experience

– Dr. Adrienne Wood, Windsor, https://www.drwoodnd.com/. Newer to Lyme, but has growing experience

– Dr. Fronie LeRoy, OMD PHD at the Baidu Traditional Chinese Medicine Clinic at 1242 Bedford Highway (902-444-4724 – www.baidutcm.ca) has started learning more about Lyme disease and co-infections. Dr. LeRoy does TCM and Acupuncture. She is presently treating some people with Lyme and Tick-borne diseases.

– Terry Sheehy of Mother Nature’s Natural Therapy – https://www.mothernaturesnaturaltherapy.com, has taken an interest in all things Lyme (and co-infections) and utilizes a variety of treatments.

– Dr. Claudia Schmiemann, Holistic Health Centre, Lunenburg, NS – https://holistic-health.care/.

– Dr. Christine Sauer – https://docchristine.com/.

– Dr. Sophie Michaud – in Quebec – https://i-liv.ca/.

– There are Medical Herbalists in Nova Scotia that apparently have treatments for Lyme/tick borne diseases – http://herbalns.org/

It appears that at least BC Naturopaths are no longer able to work with patients who do not reside in BC. I’m not sure about Naturopaths in other provinces.  The following are a few that people have utilized in the past, in case you are in BC or interested in investigating other ones yourself.

– Dr. Risk, a Naturopath in Calgary.  She will work with you over the phone and/or via Skype.  Her website is www.dr-risk.com.  Her phone number is 403-879-1686.  You can email her via her website.  There is a YouTube video with Dr. Risk that you may be interested in checking out.

– Dr. Chan, a Naturopath in Richmond, BC (BC Naturopaths are able to prescribe antibiotics) – http://pannaturopathic.com/ He was interviewed in the CBC Nature of Things show about Lyme.

– Dr. Julie Moore, a Naturopath in Vancouver – http://www.sageclinic.com/doctor/dr-julie-moore-nd/. I was given this Naturopath’s name by Jim Wilson, President, Canadian Lyme Disease Association (CanLyme). Apparently he has been hearing good things about her and, as noted for Dr. Chan, BC Naturopaths can prescribe antibiotics.

– Dr. Nicholas Anhorn is a Naturopath in Moncton – http://monctonnaturopathic.com/practitioners/dr-anhorn/. He is a member of ILADS.

– Dr. Melissa Blake, a Naturopath that practices out of Dieppe, NB and Amherst, NS. Her practice is “The Pear Tree Naturopathic Clinic” – www.thepeartreeclinic.com.

– Dr. Ralph Hawkins is one of a very short list of Canadian “Lyme Literate” Doctors that was actively treating Lyme. However, he recently announced that he has put his practice on hold while dealing with a health emergency. He is located in Calgary. Dr. Hawkins has spoken out quite a bit about the issue –  http://globalnews.ca/news/2830195/calgary-doctor-speaks-out-against-one-size-fits-all-treatment-for-lyme-disease/.

ALTERNATIVE TREATMENTS

There are various alternative treatments that people have been using and recommend. Of course, everyone is different so you have to do your own research. Some of these would be considered quite “out there” and many require additional research if you are interested as some can interfere with other treatments. This is just food for thought.

Dietary Changes – It is generally recommended to eat as “clean” as possible. No processed foods. Limit or remove sugar. No artificial sweeteners. Gluten may become an issue. Limit or remove dairy. Red meat may cause gastrointestinal issues for some. Caffeine and alcohol should be avoided. www.drrajpatel.net/index.php/lyme-m/lymediet-m 

Many, including myself, add a lot of immune boosting things to smoothies, such as Hemp hearts (https://www.healthline.com/nutrition/6-health-benefits-of-hemp-seeds), Chia seeds, Flax seeds, blueberries, etc. Lots of great advice out there on what to add to your diet to boost your immunity to help rid yourself of illness.

Adding turmeric or cumin to your diet – http://www.mnn.com/food/healthy-eating/stories/the-amazing-health-benefits-of-turmeric

Drinking warm lemon water first thing in morning – http://www.lifehack.org/articles/lifestyle/11-benefits-lemon-water-you-didnt-know-about.html

Oil Pulling – I have personally been doing this for over five years. Love it! –  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3131773/

Apple Cider Vinegar – A tablespoon in a glass of water before meals – This one was suggested to me by a Naturopath to aid digestion. – http://www.cosmopolitan.com/health-fitness/a48500/apple-cider-vinegar-benefits/.

Garlic – Rumor has it that ticks don’t like the smell of garlic and it has actually been used to spray on the perimeters of lawns in an effort to keep them off. I have been told by some that eat regular garlic that they have never found a tick on themselves, even when they spend a considerable amount of time outdoors. Hmmm  –  “Garlic Can Fight Chronic Infections” – http://healthsciences.ku.dk/news/2017/11/garlic/

Vitamin A Supplementation – “Vitamin A Deficiency Exacerbates Murine Lyme Arthritis” – https://academic.oup.com/jid/article/174/4/747/812942

Samento – http://www.samento.com.ec/sciencelib/sammain.html

Tinidazole/Clarithromycin – This combo has apparently been used by some with great success. You need a prescription.  Tinidazole, 500mg –twice daily; Clarithromycin, 500mg-twice daily.

Take one of each TOGETHER at least 30 days or 60 days if necessary. (This info was received from someone using it. I have no personal knowledge.)

Cannabidiol – http://onlinelibrary.wiley.com/doi/10.1111/j.1755-5949.2008.00065.x/full

Colloidal Silver – http://www.thehealthyhomeeconomist.com/never-consume-colloidal-silver/ and, for a different opinion https://nccih.nih.gov/health/silver

Acupuncture & Traditional Chinese Medicine – http://www.kaplanclinic.com/videos/chinese-medicine-gu-syndrome-lyme-disease/.

Rife machine – https://www.cancertutor.com/lymedisease/

Low dose immunotheraphy (LDI) – http://www.treatlyme.net/treat-lyme-book/ldi-bring-on-the-regulators/.

Cowden Protocol – Lots of information available on this protocol. This is just one of many – http://www.lyme-disease-research-database.com/lyme_disease_blog_files/tag-cowden-protocol.html.

Buhner Protocol – http://buhnerhealinglyme.com/.

Grounding/Earthing – https://wellnessmama.com/5600/earthing-grounding/

The WIM HOF Method – https://www.wimhofmethod.com/

Thymus tapping – http://www.balancedhealthclinic.co.uk/articles/19-the-thymus-thump. I was told about this last week. The person who told me about it suggested that you tap/thump counter-clockwise around the Thymus and then clockwise. They noted that it can stop a cold in its tracks if you do it just as you are starting to feel symptoms coming on. It actually worked for me a couple of days ago.

WAVE 1 – At least two NS Lyme Support Group people now have the WAVE 1 from FreMedica – https://fremedica.com/product/wave-1/. Both have seen some minor improvements, especially with sleep.

There are many more things out there that people have tried. Something that works for one, may not work for another. Lyme and tick-borne diseases seems to be a very individualized illness.

LAST, BUT NOT LEAST

As mentioned, I have a few different places where I post info on Lyme disease and co-infections:

– I started this blog on WordPress called “Shining the Lyme Light”.

– A facebook page – www.facebook.com/pages/Lyme-Disease-in-Nova-Scotia-the-Atlantic-Provinces/217895438247422. This is an open group.

– A private, closed, “Lyme Support Group – Atlantic Provinces” Facebook group – https://www.facebook.com/groups/553427674708798/.

–  A facebook group for Research Info – www.facebook.com/groups/226575537496968.

– A facebook group for non Maritime province related info – Tick/Vector Borne Disease (Lyme, Bartonella, etc.) Sufferers Unite – www.facebook.com/groups/261243560639881/.

I also have a Facebook group where people can speak up and be counted called “Nova Scotia Lyme Disease Registry – https://www.facebook.com/groups/253938431456967/. It’s a closed group but if you, or a family member are dealing with Lyme and/or co-infections, would like to be “counted” please ask to join.

As an FYI, I also have a Pinterest page dedicated to Lyme disease and utilize Twitter and LinkedIn. As another FYI, there is a Lyme Support Group on LinkedIn. I also utilize Tumblr, Instagram and WordPress to raise awareness.

I have some resource information that I would be willing to loan out if anyone is interested.  Along with the DVD’s mentioned above, I also have several books on Lyme.  The first one that I ever read was “Ending Denial – The Lyme Disease Epidemic, A Canadian Public Health Disaster”.  The one that I now call my Lyme “Bible” is “Conquering Lyme Disease” by doctors at the Columbia University Medical Centre.  I also have “Healing Lyme Disease Coinfections” by Stephen Buhner; Dr. Horowitz’s books “Why Can’t I Get Better” “”How Can I Get Better”,  and Connie Strasheim’s book “New Paradigms in Lyme Disease Treatment”.  I finally read “Cure Unknown” by Pamela Weintraub and “The Widening Circle” by Polly Murray. Both very interesting and informative books. Two that I have recently purchased, and would highly recommend, are: “Chronic” by Steven Phillips, MD and Dana Parish; and “Lyme Disease, Ticks and You” by Shelley Ball, PhD. Dr. Ben Boucher, the doctor that treated me back in 2011-2013 and closed his practice also wrote a “book” that came out in April of 2021. I say “book” as it is only about 50 pages long so it’s more like a paper. You can get an audio version on Amazon. I have many others as well! I will loan them out so you can check to see if you would be interested in buying.

COMMON LYME DISEASE ABBREVIATIONS & DEFINITIONS

AMMI – Association of Medical Microbiology and Infectious Disease Canada

Abx – antibiotics

Bb – Borrelia burgdorferi – a bacterial species of the spirochete class of the genus Borrelia.

Babs – Babesiosis/Babesia – malaria-like protozoans that parasitize and reproduce within mammalian red blood cells.

Bart – Bartonella – Bartonellosis – an infectious disease produced by bacteria of the genus Bartonella. Bartonella species cause diseases such as Carrión’s disease, trench fever, cat-scratch disease, bacillary angiomatosis, peliosis hepatis, chronic bacteremia, endocarditis, chronic lymphadenopathy, and neurological disorders

Bell’s palsy – loss of muscle tone or droop on one or both sides of the face

CACMID – Canadian Association for Clinical Microbiology and Infectious Diseases

CDC – Centers for Disease Control and Prevention

CPHO – Chief Public Health Officer

CanLyme – Canadian Lyme Disease Foundation

Co-Infections – Some ticks carry pathogens along with, or instead of, Lyme, that can cause human disease, including Anaplasmosis, Babesiosis, Borrelia miyamotoi, Powassan virus, Rocky Mountain Spotted Fever, Ehrlichiosis, Bartonella, and many others.

EM – Erythema Migrans or “bull’s eye” rash.

ELISA – Enzyme-linked immunosorbent Assay, a rapid immunochemical test that involves an enzyme used for measuring a wide variety of tests of body fluids

Herx – Jarisch-Herxheimer or Herxheimer reaction – an increase in symptoms of a spirochetal disease occurring in some persons when treatment is started

ID – Infectious Disease

IgE – Immunoglobulin E – a type of antibody which is associated mainly with allergic reactions

IgG – Immunoglobulin G – a type of antibody which is found in all body fluids and protects against bacterial and viral infections

IgM – Immunoglobulin M – a type of antibody which is found mainly in the blood and lymph fluid. It is the first antibody to be made by the body to fight a new infection

IV – Intravenous

LD – Lyme disease – an acute inflammatory disease that is caused by a spirochete (Borrelia burgdorferi) transmitted by ticks (and possibly other vectors, research ongoing).

IDSA – Infectious Disease Society of America

ILADS – International Lyme and Associated Diseases Society

LLMD/LLND – Lyme Literate Medical Doctor/Lyme Literate Naturopathic Doctor

Late Stage (better known as “Chronic”) Lyme – Untreated, or undertreated, Lyme disease, weeks, months or years after tick bite

Lyme carditis – heart palpitations or an irregular heart beat

NP – Nurse Practitioner

Neuro – neurology, neurological

PHAC – Public Health Agency of Canada

PHC – Public Health Canada

PTLDS – Post-treatment Lyme Disease Syndrome – a CDC reference to symptoms experienced after treatment

RX – prescription

RMSF – Rocky Mountain Spotted Fever

SX – symptom

TBD – Tick Borne Disease

TBI – Tick Borne Illness

WB – Western Blot – https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/westernblot/index.html

I hope this was helpful. Feel free to provide me with any additional information you think should be included.

I apologize that because there are so many links, not all of them are “live”. Just copy and paste them into your browser. That should work.

There are several Lyme initiatives taking place in Canada at the moment. Those of us in the Lyme community need everyone to help us out in some way so that improvements are made in how ALL stages of Lyme and co-infections are diagnosed and treated in this country. This includes those not personally dealing with Lyme as at some point, in the not too distant future, everyone will personally know someone with Lyme and co-infections, as it has been said that by 2020, 80% of Canadians will be living in a Lyme endemic area.

It is not expected that you do them all (unless you really want to).

Since early 2011 I have been sending emails, making phone calls, having meetings, and utilizing social media, to try to raise awareness of the increasing prevalence of ticks, Lyme disease (and all the other things ticks can carry), in Nova Scotia and Canada.

During this time I have been met with everything from fear to skepticism and downright rudeness. Numerous times I have asked myself why can’t others see what I am seeing. The information that I am reading is readily available to all. I include links to a lot of it when I try to educate folks. I limit the information that I post about to ensure that everything is from reputable sources. I also like to utilize government information as much as possible. Therefore, why is it so hard for others to grasp the gravity of the issue of tick borne diseases in this country?

I can supply links to information that advises that the present testing has specificity and sensitivity limitations. I can provide information on the various infections that have now been found in Canada. I can give you information on the variety of symptoms that are possible. I can even provide you with research that suggests that it’s not just black-legged ticks that we have to worry about.

There are a smattering of people, all across Canada, that have been speaking out about what’s going on in this country with regard to tick borne diseases. Why are so few people speaking up when I know firsthand, because I have spoken to many of them, that there are thousands of people that have dealt with or are dealing with this issue all across the country.

Tick borne diseases are no longer hard to get and easy to treat! They are no longer just in specific areas. Although there are areas where larger numbers have been found, disease carrying ticks can be just about anywhere.

It is hoped that 2017 will be a year of change. That people will start to become better informed and more VOCAL about what is going on with regard to tick borne diseases in this country. That people will finally find their voice and that politicians and those in the medical community (that would have you believe that Lyme is rare and hard to get), FINALLY have to face up to the truth.

Lyme is not rare! Lyme is not hard to get! Lyme is not easy to treat – especially if you do not see the tick or a rash and you don’t get treated for days, weeks, months or even years after the bite!

Think about it! Do you want to have to go through what thousands of Canadians are going through? Of course not! It’s time to get VOCAL!

 

There are presently several initiatives ongoing in Canada with regard to Lyme disease. One of these is a Lyme Letters Campaign – http://lymehope.weebly.com/lyme-letters-canada.html.

In response to this campaign, I prepared a letter to the federal Minister of Health and copied it to our provincial Minister of Health.

It went as follows:

“Dear Minister Philpott,

Re: Tick Borne Diseases in Canada

I am writing you today with the hope you read this letter, as well as others you may receive on this topic, in its entirety. The prevalence and increase in tick borne diseases is a national issue as they are affecting thousands of Canadians from coast to coast. This issue deserves your review and attention as our medical system is failing us.

I am a 55 year old, married mother of two teenagers. I had a successful 20 year career in Municipal Government. I left the workforce in 2000 after the birth of my first child with the intent to return to the workforce once my children were out of elementary school; however, I have been unable to return to work due to ill health. In 2011, after many years and much suffering, I was clinically diagnosed with tick borne diseases.

My story is similar to many others. I had numerous health issues over a number of years which were never adequately diagnosed. Numerous times I was told that I was just getting older and to get use to the changes. My female GP, who I was going to since I was about 19, looked at each symptom individually. I would occasionally be sent to specialists to try to find out what was going on with the majority of tests coming back negative and with no clear diagnosis. At no time did my GP, or any of the specialists, say that all my symptoms could be the result of one illness. This is a common thread among those that suffer with tick borne illnesses.

We have an issue in Canada that will only continue to grow and impact the health and well-being of numerous Canadians and will also impact the financial stability of the country. Our neighbours to the south are seeing a dramatic rise in the number of people who have been diagnosed and it is suspected that the numbers diagnosed, as is probably the case here in Canada as well, are a small percentage of those who are actually infected. Disease carrying ticks have been spreading from the US northward throughout Canada at a swift rate, yet doctors, health officials, and residents remain uneducated and ill-informed of the potential threat and the possible symptoms.

Those that are affected recognize that health care is a provincial matter; however, more needs to be done federally on this issue. Universities should be mandated to include tick borne diseases as part of their medical training; testing labs need to be properly regulated so that the testing is accurate and timely; treatments need to be developed that adequately treat until cured; the Colleges of Physicians and Surgeons need to be held accountable for their members; and those that are suffering need hope and assistance to protect them from the insurers who won’t cover their disabilities, from Doctors who won’t treat, and from the financial distress as they seek relief and cure from afar.

Considerable research is required on tick borne diseases and this research should be spearheaded federally rather than each province having to do their own with limited research dollars. We should be working together as a country to ensure that our medical practitioners are knowledgeable, that a quick and proper diagnosis can be made at all stages of Lyme and other tick borne diseases, and that prompt and adequate treatment can be received.

In many instances, the various provincial Colleges of Physicians and Surgeons are hindering the clinical diagnosis of tick borne diseases by doctors. Health Canada has advised that Lyme is supposed to be a clinical diagnosis but most, if not all, Infectious Disease doctors in Canada, and many, if not all, Colleges of Physicians and Surgeons, require that a diagnosis be science-based, relying on the faulty ELISA/Western Blot testing for a definitive diagnosis. Science is lagging on this issue and the current testing and methodology of diagnosis is resulting in mis-diagnosis or in many cases, no diagnosis.

As an example, when my ELISA came back negative, my GP told me that if I believed I had Lyme or another tick borne disease, I would have to go to a reputable place in the US, like the Mayo Clinic, and if I was diagnosed there then, and only then, would she be able to treat me. Without a positive ELISA, she indicated that her license would be in jeopardy if she treated me, even though Health Canada clearly advises that this diagnosis should be clinical.

After my ELISA came back negative, I took the initiative to undertake my own research. I found a national organization – CanLyme – who directed me to a local doctor who was dealing with Lyme in my province of Nova Scotia. The doctor was the only doctor in Nova Scotia that had taken an interest in Lyme. I was clinically diagnosed by him in 2011 and was able to receive treatment until he closed his practice in 2013. The closure was as a direct result of being investigated and harassed by the N.S. College of Physicians and Surgeons. My diagnosis was based upon a comprehensive diagnostic form that reviewed all my symptoms (48 at that time). Up until that point, none of the doctors that I had been seeing over the years looked at all my symptoms at once, rather each looked at an individual symptom based on their speciality.

There are many people in this country dealing with tick borne diseases that are struggling to identify what is affecting them! They do not know where to turn and their doctors are simply advising them that it’s ‘all in their head’ or that each of their symptoms have a different cause (age, sex – peri-menopause/menopause, weight, thyroid, etc.) and prescribe to alleviate symptoms rather than identify the root cause and treat accordingly.

There are many people dealing with tick borne diseases that are paying out of pocket for holistic, homeopathic, or out of country treatment. This cost can be considerable if the bacteria is not caught and treated early it can end up affecting all systems. Some people could also be susceptible to fraudulent treatment as a result of desperation to seek relief/cure.

There are other factors that are of concern. It is considerably harder to eradicate tick borne diseases the longer that one has been infected as the bacteria affects multiple organs and symptoms, yet some practitioners believe that the treatment is the same whether you were bitten on the day treatment started or whether you were bitten days, months, or even years before. In addition, ticks can carry multiple types of bacteria and infections, not all of which respond to the same treatment or present with the same symptoms.

I was fortunate to have been able to attend the Federal Framework on Lyme Disease Conference in Ottawa. I, like many that attended, had high hopes that this discussion would result in changes in how Lyme and tick borne diseases are treated in this country. We were asked our opinions on things that could change immediately and things that could occur over the long haul. To date, I do not believe anything has materially changed as a result of this conference, even though a considerable number of good suggestions were given by many in attendance.

While those of us dealing with tick borne diseases wait for improvements to be made, more and more people are becoming ill. The cost to this country will continue to climb as a result of people being sent to specialists, given numerous tests and follow-ups, all while their health deteriorates to a point where they can’t attend school, can’t work, can’t take care of their families, and can’t take care of themselves.

People are losing their homes! They are losing their families! They are losing their minds! Some are even losing their lives!

Minister Philpott, health care may be a provincial responsibility; however, this is a Canada-wide issue and the federal government needs to take a leadership role, similar to that which occurs for many health issues affecting our country. While we appreciate Health Canada’s acknowledgement that Lyme and other tick borne diseases should be a clinical diagnosis, this message is not reaching the medical practitioners and is counter to what the Provinces are dictating to those on the ground. As the Minister of Health I, and all those that are affected, ask you to be a leader in this issue, meet with those knowledgeable and, more importantly, current on tick borne diseases, meet with those that are affected and the associations that have developed as a result of frustration by those affected, meet with your provincial counterparts, and deal with this issue before it reaches pandemic proportions.

I have considerable information on this matter and would be pleased to meet with you or your designate to discuss this at your earliest possible convenience.

I, and the thousands of Canadians affected, thank you for your time and look forward to your leadership on this matter.”

We need as many letters to the Minister as possible. A draft of the Federal Framework on Lyme came out on March 7th. It is useless! It basically just reiterates what needs to be looked at further. There is no action plan and no definitive changes are acknowledged. Although the draft is open for comments until March 8th, it is not felt, by those in the Lyme community, that much change will result.

All Canadians, whether personally dealing with Lyme, or not, need to seriously look at this issue and consider being involved in the various Lyme initiatives as it has been said that by 2020, 80% of Canadians will be living in Lyme endemic areas. It’s time for action! It’s time for change! It’s time to be VOCAL!

 

After several months of trying to get people on board with the VOCAL initiative, I have 251 people on my database. There are thousands of people across Canada that have either had Lyme or have it. There are thousands of care-givers. There are thousands of people with pets that have been diagnosed with Lyme. How can we get more people on board?

It’s a fairly straight-forward initiative. On Saturday, June 3, 2017, there will be a Canada-wide day of Lyme awareness. Each province has a coordinator (and team) working to pull together an event(s) that they feel will help raise awareness and bring people out. The goal is to have thousands of people out on the 3rd at the various events and to finally get the attention of the medical community and politicians.

I can’t even get folks to say that if they are around on the 3rd that they will attend to show support.

So, what will it take to get people to realize that the issue of Lyme and co-infections is not being adequately dealt with in this country and to get them to jump to the conclusion that at some point, in the very near future, it could be them, or someone they love, that is now going down the Lyme hole. Does a celebrity have to speak up? Must the Doctors that are secretly giving antibiotics to their patients finally have to speak up? Must the Veterinarians that are seeing it constantly in their practices and are now seeing symptoms in some of their clients “parents” speak up?

Yes, there are more Doctors now treating upon a tick bite. There are more Doctors that are taking the issue more seriously. However, these Doctors are few and far between. Many Doctors have little to no knowledge about Lyme and even less about possible co-infections. The information is there for them to read but they do not avail themselves of it because they are being told by the “experts” that Lyme is rare, hard to get and easy to treat. That is no longer the case!

So, back to my question. How do we get people to finally realize what a serious issue Lyme and co-infections are in this country? What is it going to take? Who is it going to take to make them finally listen?

I truly want to know!