Lyme Disease Resources/Information – Nova Scotia & the Atlantic Provinces

 The following information is only as accurate as the last update! However, it is a starting point.

All sources indicate that the number of disease carrying ticks in Canada continues to climb. There are many known endemic areas throughout the country but black-legged ticks (former 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!

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!).

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, and Rocky Mountain Spotted Fever, 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!

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 recent 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! Powassan virus can be transmitted in 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 center 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 travelers six months to 12 years of age. Products containing up to 20% icaridin are considered to be safe and efficacious”. Consumer Reports has also recently done a review of bug repellents and recommends Sawyer Premium Insect Repellent 20% Picaridin. There is a product available in the US called Permethrin that actually kills 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. Clothing is sold in the US that is coated with Permethrin.

–           There are also natural products that can be used to repel ticks. Most of the natural products require frequent reapplication. Arm yourself with information!

–           If at all possible, wear light colored clothes so that you can spot the ticks more easily and 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 at picking unattached ticks off your clothes or body. The 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, 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/.

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.

After You Come Indoors

Placing clothes into a dryer on high heat for 20-30 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
  • In and around the hair
  • In the groin area
  • Around the waist

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 if nothing else is available. There are good videos on YouTube for all of 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 mouth-parts with tweezers. If you are unable to remove the mouth easily consider having your Doctor remove it for you.
  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.

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. 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! You also don’t want to spin it around with a cotton swab as that can result in it regurgitating as well.

If the tick was engorged and you don’t know how long it was attached for, I would highly recommend trying to get some antibiotics – just in case – as the longer the spirochetes are in your body, the more damage they can do! Sending the tick for testing is very beneficial as many different things can be transmitted. However, the ticks are not always tested for everything.

There are generally two types of ticks that bite in this area, the black-legged or deer tick and the wood or dog tick. Both can carry disease. If you are not sure what type of tick it is you can send a photo to Andrew Hebda at the Museum of Natural History in Halifax, Nova Scotia – andrew.hebda@novascotia.ca.

Mount Allison University is accepting ticks from a variety of areas for testing. As mentioned, the type of testing differs from place to place. You can send your ticks to https://www.mta.ca/Community/Research_and_creative/Tick_and_Lyme_disease_research/Tick___Lyme_disease_research/. For other areas, the ticks can be sent to Manitoba – https://www.canada.ca/en/public-health/services/diseases/lyme-disease/removing-submitting-ticks-testing.html. There are also other places that accept ticks for testing. Please contact me for information as it changes frequently.

If you would prefer not to go the antibiotic route, watch for signs of illness such as rash, fever, stiff neck, and/or other flu-like symptoms 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.

Reduce Ticks in Your Yard

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

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LYME DISEASE: (The following information was taken from the Murakami Centre for Lyme website – www.murakamicentreforlyme.org)

 Lyme disease is a complex and rarely understood disease that is systemic in nature. It can present itself with a myriad of symptoms (sometimes well over 100) that can easily lead to misdiagnosis by the untrained professional. We’ve tried to break down the information about this disease to make it easier to understand its complexities.

What is Lyme?

Lyme Disease is an infectious disease carried by various birds, rodents, deer and ticks. There is indication that mosquitos and other biting insects may also be vectors to this disease. It is passed among the animals and insects in this group when a tick latches onto an infected host, usually a Deer Mouse.

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

Possible Symptoms of Lyme Disease

(20 or more yes answers represent a serious potential and Lyme and other tick borne diseases should be considered)

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

  • Rash at site of bite
  • Rashes on other parts of your body
  • Rash basically circular and spreading out (or generalized)
  • Raised rash, disappearing and recurring

Head, Face, Neck

  • Unexplained hair loss
  • Headache, mild or severe,
  • Seizures
  • Pressure in Head,
  • White Matter Lesions in Head (MRI)
  • Twitching of facial or other muscles
  • Facial paralysis (Bell’s Palsy)
  • Tingling of nose, (tip of) tongue, cheek or facial flushing
  • Stiff or painful neck
  • Jaw pain or stiffness
  • Dental problems (unexplained)
  • Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
  • Eyes/Vision Double or blurry vision Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light
  • Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears

Digestive and Excretory Systems

  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastro esophageal reflux disease)

Musculoskeletal System

  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

  • Shortness of breath, can’t get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis,
  • Heart blockage

Neurologic System

  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue,
  • Chronic Fatigue Syndrome,
  • Weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking Increased motion sickness
  • Lightheadedness, wooziness

Psychological well-being

  • Mood swings, irritability, bi-polar disorder
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Too much sleep, or insomnia
  • Difficulty falling or staying asleep
  • Narcolepsy, sleep apnea
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (short or long term)
  • Confusion, difficulty in thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive
  • Sexual dysfunction
  • Unexplained menstrual pain, irregularity
  • Unexplained breast pain, discharge
  • Testicular or pelvic pain

General Well-being

  • Unexplained weight gain, loss
  • Extreme fatigue
  • Swollen glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Continual infections (sinus, kidney, eye, etc.)
  • Symptoms seem to change, come and go
  • Pain migrates (moves) to different body parts
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low body temperature
  • Allergies/Chemical sensitivities
  • Increased effect from alcohol and possible worse hangover

This list is long and all of these symptoms, alone, could be the result of something else. 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 another tick borne disease.

Another good symptom list is on the Canadian Lyme Disease Foundation (CanLyme) website at www.canlyme.com.

Dr. Richard Horowitz, one of the best known Lyme Literate Doctors in the world, and who has written the book “Solving the Mystery of Lyme & Chronic Disease”, has a diagnostic form to fill out which gives you an idea whether a possible Lyme diagnosis should be pursued – https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxjYW5nZXRiZXR0ZXIyfGd4OjViM2FhOTFjYWViY2RmNzI.

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 (recent research from Dal indicates that many ticks – both black-legged and dog/wood – are carrying Bartonella) – http://columbia-lyme.org/patients/tbd_bartonella.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. First of all, you should have either printed off a symptom list from either CanLyme or the Murakami Centre for Lyme and checked off all symptoms that apply or completed Dr. Horowitz’s questionnaire.

You should have a copy of the Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 – 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. This newsletter refers to test limitations. The ELISA is not 100% effective. There have been actual laws passed in some US states requiring Doctors to advise patients that a negative ELISA does not mean that they don’t have Lyme. However, the ELISA, and then the Western Blot if the ELISA is positive or equivocal, are the blood tests undertaken in Canada at this time.

If you have the tell-tale bull’s eye 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 the Doctor.

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. They would be wrong!

If in Nova Scotia, you should have a copy of the Nova Scotia Statement for Managing Lyme disease document – http://novascotia.ca/dhw/cdpc/documents/statement_for_managing_LD.pdf. The Statement for Managing LD also includes some general treatment guidelines and, although I don’t agree with everything it says, it should get your Doctor started in the right direction. Along with this Statement, which follows IDSA guidelines, you should also have this note on the IDSA website – http://www.idsociety.org/Guidelines_Patient_Care/.

Also helpful, if in Nova Scotia, is a copy of the Department of Health & Wellness, Communicable Disease Prevention and Control document that includes a Nova Scotia risk map that shows all of Nova Scotia at risk – https://novascotia.ca/dhw/CDPC/lyme.asp. There is also a Nova Scotia Tick Borne Diseases Response Plan which mentions possible co-infections – http://novascotia.ca/dhw/cdpc/documents/100623_CDPC_Tick-Response-Plan.pdf.

You should print off a copy 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 the standard of care guidelines for treating Lyme and other tick-borne illnesses released by the International Lyme & Associated Diseases Society (ILADS) in July of 2014. These guidelines can be found on the National Guideline Clearinghouse where, interestingly enough, they are the only Lyme guidelines at the moment (July, 2017) as the IDSA guidelines have been removed due to the fact that they no longer meet the criteria to be included on the NGA website.

It is also important to know that although it has not been determined that dog(wood) ticks can carry Lyme disease, they have been found to be carrying other things in Nova Scotia. There is a research group at Dalhousie University that has found Rocky Mountain Spotted Fever, Bartonella, etc.

You might want to also print off, or at least review before your appointment, the recently released Federal Framework on Lyme Disease – https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/lyme-disease-canada-federal-framework/lyme-disease-canada-federal-framework-eng.pdf .

What would also be helpful is information on possible co-infections. The best spot I have found so far is IDEXX Laboratories which is for pet testing. At least it gives you an idea of some co-infections that are in your area. However, not every Veterinarian uses this Lab so it is only a sampling and doesn’t include tests for everything that could be carried by ticks – http://www.petdiseasereport.com/content/prevmap.aspx.

NEWFOUNDLAND INFO:

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

– 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:

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/.

In August of 2016, Lyme NB was registered as the business name for the New Brunswick Lyme Disease Association Inc., a not-for-profit company, incorporated at the same time under the New Brunswick Companies Act.  Its purpose is preventing tick-borne illnesses, while supporting and being a voice for those already affected.  A volunteer board of seven oversees its operations. Membership is from around the province and stands currently at about 100 persons.  There are no fees and it is open to anyone touched by Lyme. LymeNB has established a website (www.lymenb.ca) in both official languages and is currently applying for charitable status. You can contact them via info@lymenb.ca.

There are two Lyme Support Groups that meet on a regular basis. One in Moncton and one in Fredericton. More information on both is located further on in this document.

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)

While looking for info, I came across these. At least some politicians are trying:

– http://www.cbc.ca/news/canada/new-brunswick/karen-ludwig-lyme-disease-future-1.3628406

– Motion 17 (page 5/6) is very interesting – http://www.gnb.ca/legis/business/currentsession/58/58-2/order-e/o160212e.pdf

– Motion 17, yet again – http://www.gnb.ca/legis/business/currentsession/58/58-2/order-e/o160405e.pdf. Unfortunately, the Motion, as presented, did not get approved – http://www.gnb.ca/legis/business/currentsession/58/58-2/journals-e/27160407e.pd

PEI INFO:

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

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 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 Naturopath or LLMD. Testing is not cheap and is probably going to be out-of-pocket. You may want to consider having a free “consult” with Dr. Ernie Murakami (http://www.murakamicentreforlyme.org) so that you can get an idea of what co-infections you might have and see if testing for any of them is available via the mainstream medical field as a good start. Dr. Murakami is a retired Doctor in Hope, BC, who has made it his mission to educate about Lyme and tick borne diseases. There are also some symptom lists of possible co-infections included in this information document. 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 two main private Labs that I am aware of are:

http://www.igenex.com/Website/

http://www.arminlabs.com/en

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/

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. The Scoop.it page and Facebook page are ones I started. 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 – www.canlyme.net. CanLyme also has 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/.

Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society – www.murakamicentreforlyme.org

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

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

ARTICLES:

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

–            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’s Profile Plummets While 15 Government Authorities Act on Persistent and Disabling Lyme Disease – https://www.linkedin.com/pulse/cdcs-profile-plummets-while-15-government-authorities-luche-thayer

–           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

–           Nightside – Talking with a Lyme Disease Expert – http://boston.cbslocal.com/2017/05/24/nightside-talking-with-a-lyme-disease-expert/

 –           Tick Talk: How Lyme disease has more reach than HIV/AIDS – http://abc27.com/2017/03/03/tick-talk-how-lyme-disease-has-more-reach-than-hivaids/

–           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 21st 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

–           Good co-infection information – http://canlyme.com/just-diagnosed/co-infections/specific-co-infections/

–           This is from the US but gives some more info on possible co-infections. In Nova Scotia, Babesiosis, Powassan Virus, Bartonella, Borrelia miyamotoi, and Rocky Mountain Spotted Fever have been found in ticks but that’s not to say other things are not also present. They just haven’t been found yet! – https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

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

–           A misdiagnosis (or two or three) appear to be quite common with people that did not see the tick or a bull’s eye rash. Here are some things you could possibly be misdiagnosed with – http://canlyme.com/just-diagnosed/testing/common-misdiagnoses/

–           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.

–           The following two news articles note that Powassan Virus has been found in Nova Scotia ticks – www.cbc.ca/news/canada/toronto/powassan-virus-prompts-officials-to-expand-tick-monitoring-1.3036326 and http://www.ctvnews.ca/health/health-officials-ramp-up-testing-for-rare-powassan-virus-1.2330280.

–           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.

–           Orchard TV – Live webcast with Vanessa Farnsworth, writer of “Rain on a Distant Roof: A Journey Through Lyme Disease in Canada” – www.orchardtv.com/vanessafarnsworth/.

 –           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 – “The Truth About Lyme Disease” – www.macleans.ca/society/health/the-truth-about-lyme-disease – March 24, 2014

–           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/

–           Global News – “Uptake of Lyme disease cases in Canada, experts warn” – www.globalnews.ca/news/605364/uptake-of-lyme-disease-cases-in-canada-experts-warn/.

–           CTV News – “Why are crippling Lyme disease cases being misdiagnosed?” – www.ctvnews.ca/why-are-crippling-lyme-disease-cases-being-misdiagnosed-1.453946.

–          “Regan: Minister of Health Promotion and Protection Needs to Protect People at Risk of Lyme Disease” – nsliberalcaucus.ca

–           “Why are crippling Lyme disease cases being misdiagnosed” – www.ctv.ca (W5)

–           “Five South Shore patients being treated for Lyme disease six months later” – www.southshorenews.ca

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 – Maritime Provinces” Facebook group for those unable to attend a support group in person.

SCOOP.IT PAGE:

For those not on Facebook, but with access to a computer, two Scoop.it pages dedicated to tick borne diseases have been created by Donna Lugar – “Lyme Disease & Other Tick Borne Diseases” – www.scoop.it/t/lyme-disease-other-tick-borne-diseases and “Tick Borne Diseases in Canada (including Lyme, Bartonella, Babesiosis, Anaplasmosis, etc.)” – www.scoop.it/t/tick-borne-diseases-in-canada.

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”

Donna Lugar has 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 Donna Lugar 902-835-5643 or donna.lugar@ns.sympatico.ca.

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

Donna Lugar has 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

Donna Lugar has 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 Donna Lugar at 902-835-5643 or donna.lugar@ns.sympatico.ca.

LYME SUPPORT GROUPS IN NOVA SCOTIA

A Lyme Support Group has been started in the Bedford area. Meetings are posted on the Facebook page and are generally the second Monday of the month starting at 6:30 pm. Locations and days are subject to change so check the Facebook page for details or ask to be on the email list. All those dealing with tick borne diseases are welcome, including Support/Family members. Contact person is Donna Lugar, donna.lugar@ns.sympatico.ca. You can contact Donna and ask to be put on an email list for meeting reminders/notices.

A Lyme Support Group had also been started in the Bridgewater area; however, the contact person has stepped down and a replacement is being looked for. If interested, please let Donna Lugar know at donna.lugar@ns.sympatico.ca.

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 Donna for suggestions.

For those on social media, there are lots of Facebook pages/groups that have started up. A good one for Canadians is Lyme: “OhOh Canada”.

LYME SUPPORT GROUPS IN NEW BRUNSWICK

There are two very active support groups:

Fredericton, led by Louise Billings – louise506459@gmail.com. They meet the first Thursday of every month at 6:30 pm at the Brunswick St. Baptist Church on the corner of York and Brunswick St.

Moncton, led by Cathie Smith – casmith@ns.sympatico.ca.  They meet every 3rd Wednesday of the month in the community room of Sobeys in Riverview from 6:30 to 8:30 pm.

These groups conduct various outreach activities, in addition to providing ongoing support and education to their members.

HEALTH CARE PROVIDERS

The following contact information is for Doctors/Naturopaths 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.

– 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. Maureen McShane in Plattsburgh, NY also comes highly recommended.  Her phone number is 518-324-5548.  Her email is maureenmcshane@me.com. Plattsburgh, NY is just over the border from Montreal.

– Dr. Ernie Murakami (retired) of the Dr. E. Murakami Centre for Lyme has a website and will provide advice, free of charge.  His website is www.murakamicentreforlyme.org.  There is a questionnaire on his site that you can fill out and fax to him so that he can make a clinical diagnosis of tick borne diseases.  He was instrumental in helping me learn what was wrong with me back in 2011.  He is also on Facebook.

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

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

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

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

– 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, Acupuncture and Homeopathics. She is presently treating people with Lyme, with some success.

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

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

– Dr. Richard Dubocq in Albion, Maine (Unity Rd, Albion, ME 04910, USA, +1 207-437-5500) is seeing quite a few Canadian Lyme patients. He is closer to us than others and is apparently somewhat cheaper as he has low overhead. He was interviewed by CBC Information Morning, Moncton, for a series they did on Lyme – http://www.cbc.ca/player/play/2696239815.

– Dr. Ralph Hawkins is one of a very short list of Canadian “Lyme Literate” Doctors that are actively treating Lyme at this time. He is located in Calgary. He has a fairly long wait time (generally over a year I believe) and you have to be referred to him. http://globalnews.ca/news/2830195/calgary-doctor-speaks-out-against-one-size-fits-all-treatment-for-lyme-disease/.

The following was received from ILADS in response to a request for the names of ILADS trained medical professionals in or near Nova Scotia:

“Please understand that the International Lyme and Associated Diseases Society, Inc. (‘ILADS’) is not a healthcare provider and does not give medical advice or provide treatment. When requested, ILADS will provide contact information of our medical members located in particular geographic regions. While ILADS endeavors to evaluate an individuals’s educational qualifications for membership, ILADS does not evaluate or warrant a member’s professional qualifications, professional competence, or skill.

The fact that ILAD’s has provided the member’s name and contact information does not constitute a recommendation of the member. Most importantly, ILADS does not certify or warrant the quality of care you will receive from any ILADS member. You are responsible for selecting a suitable health care provider. In doing so, you should evaluate all information you deem relevant, including but not limited to the individual’s background, training, experience, and reputation. In addition, ILADS does not maintain insurance information on its members. As a condition of your using any information ILADS has provided to you about a member, you agree that ILADS shall not be liable to you or others for any decision you or others make, or action that you or others take in reliance on such information. Further, you agree that ILADS shall not be liable to you or others for any acts, omissions, or services of any ILADS member. –

Members:

The closest ILADS members –

Beatrice Szantyr MD, Lincoln, ME 207 794 6405

Penelope Houghton ND, Ellsworth ME 207 664 0780

Nicholas Anhorn ND, Moncton, NB, Canada 506 382 1329

Lyme Patient Advocacy: Lyme Disease United Coalition (US and Canada), www.lduc.org, tel. 800 311 7518

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

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 – 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/.

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/.

LAST, BUT NOT LEAST

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

– 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 – Maritime 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/.

– A Scoop.it page – Lyme Disease & Other Vector Borne Diseases – www.scoop.it/t/lyme-disease-other-tick-borne-diseases.

– Another Scoop.it page – Tick Borne Diseases in Canada (including Lyme, Bartonella, Babesiosis, Anaplasmosis, etc.) – www.scoop.it/t/tick-borne-diseases-in-canada.

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”.  That was very eye opening.  I also have “Healing Lyme Disease Coinfections” by Stephen Buhner; Dr. Horowitz’s book “Why Can’t I Get Better”, Lori Dennis’ book called “Lyme Madness” and Connie Strasheim’s book “New Paradigms in Lyme Disease Treatment”.  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.

It’s Time For Everyone to Speak Up!

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).

– A petition was just created via Change.org in response to the Draft Federal Framework on Lyme – https://www.change.org/p/minister-philpott-ticking-lyme-bom…. Please sign and share. The petition already has over 22,000 signatures but we need to keep them coming. Please use #tickinglymebomb when sharing.

– A Twitter account called TickingLymeBomb (@TickingLyme) has been set up to blast tweets about the above-noted petition. Anyone with a twitter account please follow this account, tweet and retweet. Don’t forget the #tickinglymebomb hashtag! We would love to get this trending!

– There is a Lyme Letters Campaign underway – http://lymehope.weebly.com/lyme-letters-canada.html. Please consider writing a letter to the Federal Minister of Health, copy to your provincial Minister of Health, for this worthwhile cause.

– Comments are being received until March 8th on the Draft Federal Framework on Lyme – https://www.canada.ca/…/consultation-draft-federal-framewor…. The Draft Framework basically advises what areas need work. There is nothing as to what will be done in the short and long terms as was discussed at the Federal Framework on Lyme Conference in May of 2016. There is nothing about adding Lyme as a potential claim for long-term disability. You just have to watch a few of the Conference videos on the CanLyme YouTube page to know that the Draft Framework is seriously lacking.

– Initiatives are being organized across Canada for Sat., June 3rd. Each province could use more help with organizing. Each province needs for folks to get out on the 3rd to support. Be VOCAL! More info can be found on the VOCAL – Voices of Canadians About Lyme” Facebook page or you can contact me.

It’s time to speak up!

#tickinglymebomb

What’s It Going to Take to Wake People Up?

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!

 

Canadian Lyme Letters Campaign

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!

 

VOCAL – Voices of Canadians About Lyme

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!

The Endocrinologist was a Bust

In my previous post I mentioned that I was going to see an Endocrinologist. While I didn’t hold out much hope since I had seen the same one a few years ago, I didn’t expect it to be a total waste of time. Unfortunately, that’s what it ended up being.

As soon as I entered her office, the first thing I noticed was the big poster on the wall with the brand name Synthroid on it! I may as well have just gotten up and left the office then and there. Instead I wasted about an hour of my (and her) time.

At the end of our discussion, she basically said that she didn’t think my thyroid was causing my symptoms and to investigate other things like my diet, my sleep habits (sleep apnea?), etc. As if I hadn’t tried just about everything that I could over the 16 or so years of being on Synthroid!

Fortunately, I received a comment to my last post (thanks Sue) directing me to someone that I finally saw this week. After a very informative meeting, I left with an at-home test to do and will hopefully have some results in a week or two. Here’s hoping that some good information comes out of it and I can finally move forward on some treatments.

One thing that has become very obvious to me is that those that become the most severely ill after a tick bite end up with a considerable number of other things wrong with them due, I guess, to where the bacteria ends up going in your body and what systems had already been strained.

If I was younger, I would seriously consider becoming a researcher or at least someone that is looking at the issue of Lyme and co-infections and how it affects every individual differently. I don’t know how anyone can believe that the same treatment works for everyone! I have yet to see two people with the exact same symptoms if not diagnosed and treated immediately upon a tick bite!

It just doesn’t make sense!

 

Where Did The Summer Go???

It is unbelievable to me how quickly time passes! I started this blog entry back in late summer, just before the kids went back to school. Then more time passed and here it is the middle of October and I’m thinking about Christmas (WHAT!).

There has been a lot going on this spring/summer/fall health and Lyme wise!

First of all, after approximately 15 years on Synthroid I decided to stop taking it, cold turkey! My GP retired so I thought it was as good a time as any to see what would happen. I also hoped that, if required, I could start a new medication.

I read that it takes about six weeks to get out of your system so wasn’t expecting significant changes for the first little bit and I was right. Nothing major occurred. A little more fatigued and a slow weight gain but that was tolerable, and expected. I wouldn’t recommend others do this though.  I was originally diagnosed with Hypothyroidism based upon some fairly generic health issues, and the one TSH number that my Doctor relied on. The health issues, such as inability to lose weight, fatigue, etc., etc., never went away while on treatment but that didn’t seem to matter to my Dr. as long as that number was within the range. In hindsight, I should have pushed harder and had the medication changed a LONG time ago. Going off cold turkey was a silly move but it worked out for me. It may not work out well for someone else.

I made an appointment with my new GP at about the seven week mark. She sent me for bloodwork which I had on a Monday morning. By Monday afternoon, I had a call from my Doctor’s office that my bloodwork was back and to make an appointment.

My new GP advised that I definitely needed Thyroid medication but she agreed to try me on desiccated thyroid medication instead.  I had high hopes for this medication based upon a book I picked up called “Overcoming Thyroid Disorders” by David Brownstein, M.S. I pictured my weight starting to drop, my fatigue lifting, etc., etc.

 

Well, that didn’t happen. I may have mentioned already that I had what I thought to be a sensitivity to red meat and did not eat any for two whole years and now only eat a little bit here and there. Well, the desiccated thyroid medication (at least I think that is what caused it) resulted in what appeared to be a resurgence of the terrible gastrointestinal issues that I endured before I stopped eating red meat. I ended up going off the desiccated thyroid medication and being put back on Synthroid as my GP is not aware of any other type of medication available 😦 I have an appointment with an Endocrinologist tomorrow but I don’t have high hopes as I saw this same Endocrinologist several years ago and she also just went by the numbers rather than by the symptoms.

I started doing a bit of research on Thyroid, Lyme and desiccated thyroid medication and, of course, for some people the Lyme and the possible resultant red meat sensitivity can be a problem with treatment. Nothing is simple when it comes to my health apparently!

Although my brain is not functioning that great these days and I sometimes feel like I’m in a fog, whenever I have a little bit of extra get-up and go I try to get a few things done. One of the Lyme initiatives that I have committed myself to is called “VOCAL – Voices of Canadians About Lyme”. I’m the coordinator of the event (sort of) but there are a couple of hundred people (and growing) across Canada that are working on Lyme awareness events that will take place on Saturday, June 3, 2017. We are hoping for hundreds of people to attend these events and let those in the government and the medical community know, once and for all, how much of an issue Lyme and tick/vector borne diseases are right across Canada.

I’m maintaining a database of emails and province of residence of people willing to be involved so that I can provide that information to the various provincial coordinators. It’s slow going due to the fact that most of those that are involved are still sick and have good and bad days. It seems lately that many are having more bad days then good. I’m not sure why, but it certainly seems like a common theme during discussions with people all across Canada. I can relate! These last few months have been a hell of a ride health wise!

Another initiative that has taken place over the summer is the creation of a Lyme Disease Society of Canada. A great group of people have started up the Society and are plugging away at getting all the i’s dotted and t’s crossed. They have a lot of amazing ideas and I think they will be a force to be watched in the Lyme world. At present, they are just on Facebook but a website is in the works and should be on-line by the end of 2016. Keep an eye out for them!

I’m finding that I’m all over the place these days and can’t seem to write much but I will try to get back to at least a somewhat regular routine with my blog posts – if at all possible.

So much to say! So much to do!